Friday, 3 October 2008
Family Tribute read by Brother Kevin from the Hillfield Friary
Liz’s last journey began in early December 2007, when she had a persistent cough that would not go away. The doctor and the hospital carried out tests which indicated that she had massive blood clots in her lungs and that she had suffered a small stroke. Further tests indicated that she had advanced bowel cancer.
Dick who was informed at 5.30pm on Christmas Eve had to inform the boys over the Christmas period, but Liz was only told by the consultant that she had inoperable cancer in the middle of January.
As always Liz took the news in her stride, not really believing that she had cancer. However, having seen her mother-in-law die from cancer, she was very aware of the journey she was about to undertake, the enormous mountain she had to climb, with no guarantee and only a slim chance of success. She was also aware that if she managed to get into remission it would probably only be short-lived.
Liz made the decision that she would take it day by day, and that she was between a rock and a hard place. She could either give in with the certainty of dying an unpleasant death relatively quickly, or she could try to fight it with chemotherapy. Surgery was never an option.
She chose to fight it, because she wanted to see her grandson Leon start school in September, to be at her new granddaughters first birthday in November, and to be at Julian’s Wedding in November. People often commented to her that she was really brave, but she didn’t see it that way. She always said that she had no option, and that if she didn’t have the treatment it was the end.
Liz had 23 weeks of almost constant chemotherapy, throughout which she never once complained, only took 4 paracetomol tablets for pain relief, and too our knowledge only cried once briefly.
Throughout her journey she always deflected questions about how she was, turning the question on its head and asking ‘how are you’. She was always concerned about others, which is symptomatic of her life. She was a very quiet, family orientated, and caring person, which was confirmed by the 14 years she spent working in a difficult environment for Dorset Drug & Alcohol Advisory Service trying to help people less fortunate than herself.
During her illness she often apologised for being a whimp, because she was unable to do much around the house or in the garden, and that how fortunate she was compared with many other people who were far worse off.
Of course she was very frightened, but was never hysterical or openly angry about her situation. She was stoical right up until the end.
Liz never gave up fighting for herself or the family. It was only when the chemotherapy department said she was too frail to continue with the third course of treatment, and that she needed a week or two without chemotherapy to regain her strength, that she chose to opt out. She finally succumbed to the toxic effects of 23 weeks of chemotherapy treatment rather than the cancer itself.
Fortunately for Liz and the family she was never told by her consultant that it was all over, and that there was nothing further the hospital could do.
Liz wanted to donate her organs but unfortunately due to the chemotherapy virtually eliminating her immune system even her corneas could not be used. The donor service was very sad as they get so few donors in the first place.
Liz was an ‘educated and determined’ lady who liked the finer things in life (which she got most of the time!), but she was a very private person and was happy pulling the strings from behind the scenes!
It is amazing how she coped with the last nine months of treatment considering she was terrified of needles and blood! Her treatment involved huge numbers of injections and blood samples.
Her interests which included Food & Wine, Gardening, Travel, Music & Opera, Reading, Entertaining, and Historic Houses and Gardens as well as the Family were all shared by Dick who has lost not only a wife, but also a lover and very good friend.
Liz had been happily married to Dick for 14,100 days and would have celebrated 39 years of marriage next February.
She will be sadly missed by the family and all who came into contact with her.
Dick who was informed at 5.30pm on Christmas Eve had to inform the boys over the Christmas period, but Liz was only told by the consultant that she had inoperable cancer in the middle of January.
As always Liz took the news in her stride, not really believing that she had cancer. However, having seen her mother-in-law die from cancer, she was very aware of the journey she was about to undertake, the enormous mountain she had to climb, with no guarantee and only a slim chance of success. She was also aware that if she managed to get into remission it would probably only be short-lived.
Liz made the decision that she would take it day by day, and that she was between a rock and a hard place. She could either give in with the certainty of dying an unpleasant death relatively quickly, or she could try to fight it with chemotherapy. Surgery was never an option.
She chose to fight it, because she wanted to see her grandson Leon start school in September, to be at her new granddaughters first birthday in November, and to be at Julian’s Wedding in November. People often commented to her that she was really brave, but she didn’t see it that way. She always said that she had no option, and that if she didn’t have the treatment it was the end.
Liz had 23 weeks of almost constant chemotherapy, throughout which she never once complained, only took 4 paracetomol tablets for pain relief, and too our knowledge only cried once briefly.
Throughout her journey she always deflected questions about how she was, turning the question on its head and asking ‘how are you’. She was always concerned about others, which is symptomatic of her life. She was a very quiet, family orientated, and caring person, which was confirmed by the 14 years she spent working in a difficult environment for Dorset Drug & Alcohol Advisory Service trying to help people less fortunate than herself.
During her illness she often apologised for being a whimp, because she was unable to do much around the house or in the garden, and that how fortunate she was compared with many other people who were far worse off.
Of course she was very frightened, but was never hysterical or openly angry about her situation. She was stoical right up until the end.
Liz never gave up fighting for herself or the family. It was only when the chemotherapy department said she was too frail to continue with the third course of treatment, and that she needed a week or two without chemotherapy to regain her strength, that she chose to opt out. She finally succumbed to the toxic effects of 23 weeks of chemotherapy treatment rather than the cancer itself.
Fortunately for Liz and the family she was never told by her consultant that it was all over, and that there was nothing further the hospital could do.
Liz wanted to donate her organs but unfortunately due to the chemotherapy virtually eliminating her immune system even her corneas could not be used. The donor service was very sad as they get so few donors in the first place.
Liz was an ‘educated and determined’ lady who liked the finer things in life (which she got most of the time!), but she was a very private person and was happy pulling the strings from behind the scenes!
It is amazing how she coped with the last nine months of treatment considering she was terrified of needles and blood! Her treatment involved huge numbers of injections and blood samples.
Her interests which included Food & Wine, Gardening, Travel, Music & Opera, Reading, Entertaining, and Historic Houses and Gardens as well as the Family were all shared by Dick who has lost not only a wife, but also a lover and very good friend.
Liz had been happily married to Dick for 14,100 days and would have celebrated 39 years of marriage next February.
She will be sadly missed by the family and all who came into contact with her.
Tribute from Shelia Wright – The Last Ten Years
Ten years ago Keith and I moved into the house next to Dick and Liz's in Buckland Newton. Apparently Dick and Liz had been understandably concerned about what sort of new neighbours they would get and were convinced they would end up with the neighbours from Hell. Liz told me some months later that she was in her garden when we had all the windows open and the radio playing while we were decorating our new home.
She rushed in to tell Dick "We're OK, they listen to Classic FM." Since then we have been called by Liz and Dick - affectionately I hope - the neighbours from Hell.
This shared love of music became the basis of a firm friendship between Liz and Dick, and Keith and me. The four of us became regulars at the
Bournemouth Symphony concerts and many other musical events that were happening locally. Liz had a wide ranging appreciation of music, but I
think it's true to say that opera and choral music were her passions.
She was able to indulge these passions to the full during a weekend the four of us spent at Northern Opera's home in Salford Quays where we saw three operas in two days.
A few years ago Liz and Dick invited us to go to Prague with them and we shared an apartment in the old town. The week turned into a musical marathon with Dick and Liz guiding us round the many concert and opera venues in the city, always making sure we arrived in time for a glass of champagne before the performance began. It was a wonderful week of music and fun and one that we shall always remember.
Back home in Buckland Newton we often spent an evening together enjoying a new cheese we had discovered or sampling some good wine that Liz and Dick had invariably found on sale during their Thursday night forays in Waitrose. When Dick installed the hot tub we had the added wonder of the night sky and, of course, opera in the garden. Rarely a week went by without Liz and I meeting at the fence between our gardens to exchange a new disc, information about an upcoming concert, or simply to have a chat.
I saw a different aspect of Liz's character when she became ill and was later diagnosed with cancer. She had a quiet determination and was up for the fight. I know many of us here today will remember a Sunday afternoon in late June this year when Dick and Liz organised a superb party in their lovely garden to celebrate Liz's birthday, twenty one years in the village and their joint retirement. Liz looked wonderful and obviously really enjoyed the day - and the evening, when most of us were wilting!
I visited Liz many times during the last few months and she was always eager to hear village news and to show me the latest photographs of her two grandchildren, carefully pushing her own problems into the background.
Those visits were very special to me, because, although Liz and I both knew that she was seriously ill, we were totally at ease with each other and enjoyed each other's company.
This is a very sad day for Keith and me because we are saying our final goodbye to Liz, but it's also a day when we all share wonderful memories of her and we are here together with Dick and his family to celebrate her life.
I am so grateful to Dick for giving me this opportunity to pay my personal tribute to my friend Liz.
She rushed in to tell Dick "We're OK, they listen to Classic FM." Since then we have been called by Liz and Dick - affectionately I hope - the neighbours from Hell.
This shared love of music became the basis of a firm friendship between Liz and Dick, and Keith and me. The four of us became regulars at the
Bournemouth Symphony concerts and many other musical events that were happening locally. Liz had a wide ranging appreciation of music, but I
think it's true to say that opera and choral music were her passions.
She was able to indulge these passions to the full during a weekend the four of us spent at Northern Opera's home in Salford Quays where we saw three operas in two days.
A few years ago Liz and Dick invited us to go to Prague with them and we shared an apartment in the old town. The week turned into a musical marathon with Dick and Liz guiding us round the many concert and opera venues in the city, always making sure we arrived in time for a glass of champagne before the performance began. It was a wonderful week of music and fun and one that we shall always remember.
Back home in Buckland Newton we often spent an evening together enjoying a new cheese we had discovered or sampling some good wine that Liz and Dick had invariably found on sale during their Thursday night forays in Waitrose. When Dick installed the hot tub we had the added wonder of the night sky and, of course, opera in the garden. Rarely a week went by without Liz and I meeting at the fence between our gardens to exchange a new disc, information about an upcoming concert, or simply to have a chat.
I saw a different aspect of Liz's character when she became ill and was later diagnosed with cancer. She had a quiet determination and was up for the fight. I know many of us here today will remember a Sunday afternoon in late June this year when Dick and Liz organised a superb party in their lovely garden to celebrate Liz's birthday, twenty one years in the village and their joint retirement. Liz looked wonderful and obviously really enjoyed the day - and the evening, when most of us were wilting!
I visited Liz many times during the last few months and she was always eager to hear village news and to show me the latest photographs of her two grandchildren, carefully pushing her own problems into the background.
Those visits were very special to me, because, although Liz and I both knew that she was seriously ill, we were totally at ease with each other and enjoyed each other's company.
This is a very sad day for Keith and me because we are saying our final goodbye to Liz, but it's also a day when we all share wonderful memories of her and we are here together with Dick and his family to celebrate her life.
I am so grateful to Dick for giving me this opportunity to pay my personal tribute to my friend Liz.
Poem - To Those I Love and Those Who Loved Me
When I am gone, release me, and let me go
I have so many things to say and do
You mustn’t tie yourself to me with tears
Be happy that we had so many years
I gave you my love – You can only guess
How much you gave me in happiness,
I thank you for the love you each have shown
But, now it’s time I travelled on alone
So grieve a-while for me if grieve you must
Then let your grief be comforted by trust
It’s only for a while that we must part
So, bless the memories within your heart
I have so many things to say and do
You mustn’t tie yourself to me with tears
Be happy that we had so many years
I gave you my love – You can only guess
How much you gave me in happiness,
I thank you for the love you each have shown
But, now it’s time I travelled on alone
So grieve a-while for me if grieve you must
Then let your grief be comforted by trust
It’s only for a while that we must part
So, bless the memories within your heart
Tribute From Nigel Martin - The Early Years
'Hello everyone.....
My name is Nigel and I should first of all like to thank Dick and the family for asking me to speak today about Liz's early years.
Liz's parents divorced when she was quite young and she lived most of the time with her mother in Barons Court in London, though I do remember us visiting two delightfully dotty aunties on her father's side, of whom Liz was very fond.
Most of her schooldays were spent at Effingham House where she met her best girlfriend, Gail, who I am delighted to say is here with me today.
I first met Liz when I worked at J Walter Thompson Advertising in Berkerly Square and Liz worked as a secretary in Longmans the publishers just round the corner.
With our shared love of music, the theatre and cinema, it was obvious that we would get on famously. Liz, Gail and I would be like the 3 musketeers’ at parties, dances and music outings.....and here's where many of you will I hope smile.
The Liz from Buckland Newton was known to you for her great love of classical music, opera and the like BUT, in the early years, it was the NME Poll winners Concert every year at Wembley Arena and trips on freezing cold coaches to Blackpool and the like to see Cliff and The Shadows in seaside shows, coming home at 2.30 in the morning!!
But then wherever she went, whatever she did, FUN was the password for Liz.. Whether eating fish and chips in a 'greasy spoon' in Bayswater near our bedsits one night or dancing at a 'do' at The Savoy the next, dolled up the nines!
Eventually my work took me to Canada and The United States and for a while the close contact was broken. But on my return to England the once-a-year Christmas update on her new life with Dick and the boys started and the friendship has remained ever since.
It has been especially poignant to have been able to talk more than ever over the last few months and it was super to meet Julian and Tim for the first time quite recently. The lovely girl from my teen and twenty years is gone.....the fun, the laughter and the memory of that special smile will never leave me.'
My name is Nigel and I should first of all like to thank Dick and the family for asking me to speak today about Liz's early years.
Liz's parents divorced when she was quite young and she lived most of the time with her mother in Barons Court in London, though I do remember us visiting two delightfully dotty aunties on her father's side, of whom Liz was very fond.
Most of her schooldays were spent at Effingham House where she met her best girlfriend, Gail, who I am delighted to say is here with me today.
I first met Liz when I worked at J Walter Thompson Advertising in Berkerly Square and Liz worked as a secretary in Longmans the publishers just round the corner.
With our shared love of music, the theatre and cinema, it was obvious that we would get on famously. Liz, Gail and I would be like the 3 musketeers’ at parties, dances and music outings.....and here's where many of you will I hope smile.
The Liz from Buckland Newton was known to you for her great love of classical music, opera and the like BUT, in the early years, it was the NME Poll winners Concert every year at Wembley Arena and trips on freezing cold coaches to Blackpool and the like to see Cliff and The Shadows in seaside shows, coming home at 2.30 in the morning!!
But then wherever she went, whatever she did, FUN was the password for Liz.. Whether eating fish and chips in a 'greasy spoon' in Bayswater near our bedsits one night or dancing at a 'do' at The Savoy the next, dolled up the nines!
Eventually my work took me to Canada and The United States and for a while the close contact was broken. But on my return to England the once-a-year Christmas update on her new life with Dick and the boys started and the friendship has remained ever since.
It has been especially poignant to have been able to talk more than ever over the last few months and it was super to meet Julian and Tim for the first time quite recently. The lovely girl from my teen and twenty years is gone.....the fun, the laughter and the memory of that special smile will never leave me.'
Saturday, 6 September 2008
Mum at her Best!!
Liz
17th June 1943 - 5th September 2008
The one and only Liz Bennett
At Tim & Elaine's Wedding in 2006 
Mum's 65th Birthday this year and her new wig - Wow!
Mum styling her head scarves
Liz update 15 - 5th September 2008 - The Final Chapter
Elizabeth Jane Bennett 1943 – 2008 Too young to leave us
After several lengthy conversations with the hospice palliative care nurses regarding moving Liz from the hospital into a hospice environment, it was decided that the most appropriate course of action to ensure the best care for her was to get her moved into a private room at the hospital. We made it very clear that due to Liz’s rapid deterioration we expected this to happen sooner rather than later but fully understood the difficulties and practicalities. This we achieved thanks to our palliative nurse from the hospital and the sister on the hospital ward at approximately 3pm after already being moved at 5:15am from the emergency medical unit to a normal Ward.
Liz deteriorated rapidly during the day (Friday), but was never in any physical pain although the mental anguish over the past few days must have been appalling.
I had decided to stay the night with Liz at the hospital but at about 8.00pm it became clear that things had worsened considerably and that she was unlikely to last through the night.
I called Julian & Tim back to the hospital (with Liz’s wig) so that we could all be with her and say goodbye together. Throughout the evening she was still very aware of what was going on around her, and at her request she even tried (unsuccessfully) to get out of bed to use the commode. Unfortunately she didn’t make it as all her strength had gone.
However she was still responding to questions and comments, but by 10pm her breathing had become very difficult, so a low level morphine drip was given to relieve the stress and tension she was experiencing. This immediately allowed her breathing to improve and meant that she was able to breathe easily without oxygen for the first time in several hours.
Over the next 20 minutes she just quietly and very peacefully drifted away, with all three of us holding her. She had a wonderful complexion and even the nurses commented on how good she looked and in particular her wonderful skin (courtesy of many years of Lancôme!).
Liz quietly passed away at 10.25pm
I will miss her desperately as will Tim, Julian and their families. It is so sad that she has died so young and will not see our grandchildren grow up or be at Julian’s wedding later in the year.
All our dreams and things we have worked towards for nearly 39 years have now gone. In retirement we planned to travel extensively, visit the big opera houses, spend more time in our garden, become more involved in the local community and in particular see more of the boys and their families.
Liz couldn’t believe how kind and supportive everyone has been. On behalf of Liz a big thank you for all your flowers, words of comfort and support over the past nine months, without which life would have been much more difficult.
After nine months of numerous injections, blood samples, invasive investigations, scans, hospital stays, blood clots, diet limitations, blood transfusions, fluid drainage, visits to the surgery and extensive medications she never once complained. In fact she kept saying that apart from the adverse effects of the chemotherapy she could not believe that she had cancer, and that many other people were in a far worse situation than her. Thankfully this has now all come to end relatively quickly and peacefully. Finally she is now at peace.
We will circulate details of Liz’s funeral arrangements in due course, but request no flowers. If wished, donations in lieu of flowers can be sent to a nominated charity, details of which will be circulated.
Thank you for your support.
Dick, Julian, Tim and Liz.
After several lengthy conversations with the hospice palliative care nurses regarding moving Liz from the hospital into a hospice environment, it was decided that the most appropriate course of action to ensure the best care for her was to get her moved into a private room at the hospital. We made it very clear that due to Liz’s rapid deterioration we expected this to happen sooner rather than later but fully understood the difficulties and practicalities. This we achieved thanks to our palliative nurse from the hospital and the sister on the hospital ward at approximately 3pm after already being moved at 5:15am from the emergency medical unit to a normal Ward.
Liz deteriorated rapidly during the day (Friday), but was never in any physical pain although the mental anguish over the past few days must have been appalling.
I had decided to stay the night with Liz at the hospital but at about 8.00pm it became clear that things had worsened considerably and that she was unlikely to last through the night.
I called Julian & Tim back to the hospital (with Liz’s wig) so that we could all be with her and say goodbye together. Throughout the evening she was still very aware of what was going on around her, and at her request she even tried (unsuccessfully) to get out of bed to use the commode. Unfortunately she didn’t make it as all her strength had gone.
However she was still responding to questions and comments, but by 10pm her breathing had become very difficult, so a low level morphine drip was given to relieve the stress and tension she was experiencing. This immediately allowed her breathing to improve and meant that she was able to breathe easily without oxygen for the first time in several hours.
Over the next 20 minutes she just quietly and very peacefully drifted away, with all three of us holding her. She had a wonderful complexion and even the nurses commented on how good she looked and in particular her wonderful skin (courtesy of many years of Lancôme!).
Liz quietly passed away at 10.25pm
I will miss her desperately as will Tim, Julian and their families. It is so sad that she has died so young and will not see our grandchildren grow up or be at Julian’s wedding later in the year.
All our dreams and things we have worked towards for nearly 39 years have now gone. In retirement we planned to travel extensively, visit the big opera houses, spend more time in our garden, become more involved in the local community and in particular see more of the boys and their families.
Liz couldn’t believe how kind and supportive everyone has been. On behalf of Liz a big thank you for all your flowers, words of comfort and support over the past nine months, without which life would have been much more difficult.
After nine months of numerous injections, blood samples, invasive investigations, scans, hospital stays, blood clots, diet limitations, blood transfusions, fluid drainage, visits to the surgery and extensive medications she never once complained. In fact she kept saying that apart from the adverse effects of the chemotherapy she could not believe that she had cancer, and that many other people were in a far worse situation than her. Thankfully this has now all come to end relatively quickly and peacefully. Finally she is now at peace.
We will circulate details of Liz’s funeral arrangements in due course, but request no flowers. If wished, donations in lieu of flowers can be sent to a nominated charity, details of which will be circulated.
Thank you for your support.
Dick, Julian, Tim and Liz.
Friday, 5 September 2008
Update 14 - 5th September 2008
Hello
The past 10 days have been very difficult.
The temporary drain in Liz’s stomach continued to release fluid and over a 10 day period yielded 1.75 litres on top of the 3.0 litres drained out whilst she was in hospital.
In the middle of last week, Liz became very tired (even more so than she was already), and almost completely lost her appetite. We had an extremely difficult few days over last weekend.
On Tuesday (Sept 2nd) we had an appointment at the hospital to change the chemo pack, but it was already apparent to me that Liz was not well enough to continue. Liz had difficulty getting down stairs and into and out of the car.
On arrival at the Chemo ward, the sister immediately decided to stop the chemo temporarily, to give her time to rebuild her strength, as she was exhibiting a lot of the classic side effects of this particular drug: fatigue, blisters on her tongue and lips, and severe diarrhoea all of which are very debilitating.
We think that once the decision to stop chemotherapy was made by someone else, she gave up fighting. She didn’t want to let the family down by giving up herself.
On returning home later in the day we had a number of urgent messages on the answerphone from the chemo department, asking us to contact them immediately and return to hospital asap because the INR level had shot up to 16 (should be between 2 & 3) and that she was at extreme risk if she started to bleed. They confirmed that a bed was waiting for her in the Emergency Medical Unit.
Liz was admitted within the hour on Tuesday, and was quickly given some Vitamin K to reduce the INR over a few days. They confirmed that once the INR was down to 2.0 they would revert to permanently using daily Clexane injections in her stomach. She could not go back on to Warfarin.
On Wednesday the INR level had fallen to 5.0, and by Thursday it was down to 3.5, so hopefully it will be down to 2.0 within the near future.
Over the past two days Liz has eaten very little, partially due to the diarrhoea, but also the sores in and around her mouth, and the side effects of the chemo treatment which should gradually subside.
Of course Liz is very weak following 23 weeks of three different types of chemotherapy with only a short break between each course. I along with Tim & Julian are amazed at what Liz has put herself through without one word of complaint, even though she has been feeling very weak, depressed and frightened. Very few people would have continued as long as Liz.
Ironically we heard yesterday that our fight to get a permanent drain in Liz’s stomach has been approved by the PCT. Currently there is no funding provision, and the hospital have only carried out the procedure once on a trial basis. However due to the pressure we applied together with significant help from some of the medical liaison team we are constantly in contact with, we finally won the day. IF Liz is well enough the drain is due to be fitted next Thursday.
Over the past 24 hours we have had a number of discussions with our contacts from the local hospice, one of whom is based in the hospital, with a view to getting Liz into the hospice for some respite and more personal care in a quieter environment where it is easier for us to visit whenever we want. Unfortunately there are no beds available and there are already two people on the waiting list in Dorchester hospital. Another option is to move Liz to Blandford hospital which acts as an overflow for the main hospice, and where she could probably have her own room.
There are significant practical issues regarding moving Liz to either the main Hospice or Blandford due to the need for her to be seen by the consultant on Tuesday and if appropriate have the drain fitted on Thursday. Clearly it is impractical to move her out of Dorchester, then back and forward several times.
This morning we had a further helpful meeting with the hospital based palliative care nurse from the hospice, before discussed things with Liz. It was a very open conversation from both sides, but we agreed and accepted that Liz has now turned a corner which will sadly lead to the inevitable outcome in the not too distant future.
Although at this point it is impossible to know how long it may take, we agreed that an acceptable alternative to moving her to either the hospice or Blandford, was to get her into a single bed side ward in the current ward, which would enable us to be with her at any time and for as long as necessary day or night. It appears that the Hospice nurse carries quite a lot of weight on the ward where Liz is, and is currently seeking to achieve our goals without moving Liz.
Under the current circumstances, particularly if we can get her into a side ward, we feel that Liz is unlikely to be well enough to come home, although if things change we can quickly make appropriate arrangements with the district nurses and other professionals at our surgery in Puddletown.
Tim Julian & I are clearly upset by the sudden turn of events but are still trying to ensure that Liz gets the most appropriate care and treatment.
It has been a very long and sad journey for Liz and the family, but finally we are having to accept defeat. It has not been through lack of trying on our part and particularly that of Liz.
We will keep you informed as always.
Dick, Julian & Tim for Liz
The past 10 days have been very difficult.
The temporary drain in Liz’s stomach continued to release fluid and over a 10 day period yielded 1.75 litres on top of the 3.0 litres drained out whilst she was in hospital.
In the middle of last week, Liz became very tired (even more so than she was already), and almost completely lost her appetite. We had an extremely difficult few days over last weekend.
On Tuesday (Sept 2nd) we had an appointment at the hospital to change the chemo pack, but it was already apparent to me that Liz was not well enough to continue. Liz had difficulty getting down stairs and into and out of the car.
On arrival at the Chemo ward, the sister immediately decided to stop the chemo temporarily, to give her time to rebuild her strength, as she was exhibiting a lot of the classic side effects of this particular drug: fatigue, blisters on her tongue and lips, and severe diarrhoea all of which are very debilitating.
We think that once the decision to stop chemotherapy was made by someone else, she gave up fighting. She didn’t want to let the family down by giving up herself.
On returning home later in the day we had a number of urgent messages on the answerphone from the chemo department, asking us to contact them immediately and return to hospital asap because the INR level had shot up to 16 (should be between 2 & 3) and that she was at extreme risk if she started to bleed. They confirmed that a bed was waiting for her in the Emergency Medical Unit.
Liz was admitted within the hour on Tuesday, and was quickly given some Vitamin K to reduce the INR over a few days. They confirmed that once the INR was down to 2.0 they would revert to permanently using daily Clexane injections in her stomach. She could not go back on to Warfarin.
On Wednesday the INR level had fallen to 5.0, and by Thursday it was down to 3.5, so hopefully it will be down to 2.0 within the near future.
Over the past two days Liz has eaten very little, partially due to the diarrhoea, but also the sores in and around her mouth, and the side effects of the chemo treatment which should gradually subside.
Of course Liz is very weak following 23 weeks of three different types of chemotherapy with only a short break between each course. I along with Tim & Julian are amazed at what Liz has put herself through without one word of complaint, even though she has been feeling very weak, depressed and frightened. Very few people would have continued as long as Liz.
Ironically we heard yesterday that our fight to get a permanent drain in Liz’s stomach has been approved by the PCT. Currently there is no funding provision, and the hospital have only carried out the procedure once on a trial basis. However due to the pressure we applied together with significant help from some of the medical liaison team we are constantly in contact with, we finally won the day. IF Liz is well enough the drain is due to be fitted next Thursday.
Over the past 24 hours we have had a number of discussions with our contacts from the local hospice, one of whom is based in the hospital, with a view to getting Liz into the hospice for some respite and more personal care in a quieter environment where it is easier for us to visit whenever we want. Unfortunately there are no beds available and there are already two people on the waiting list in Dorchester hospital. Another option is to move Liz to Blandford hospital which acts as an overflow for the main hospice, and where she could probably have her own room.
There are significant practical issues regarding moving Liz to either the main Hospice or Blandford due to the need for her to be seen by the consultant on Tuesday and if appropriate have the drain fitted on Thursday. Clearly it is impractical to move her out of Dorchester, then back and forward several times.
This morning we had a further helpful meeting with the hospital based palliative care nurse from the hospice, before discussed things with Liz. It was a very open conversation from both sides, but we agreed and accepted that Liz has now turned a corner which will sadly lead to the inevitable outcome in the not too distant future.
Although at this point it is impossible to know how long it may take, we agreed that an acceptable alternative to moving her to either the hospice or Blandford, was to get her into a single bed side ward in the current ward, which would enable us to be with her at any time and for as long as necessary day or night. It appears that the Hospice nurse carries quite a lot of weight on the ward where Liz is, and is currently seeking to achieve our goals without moving Liz.
Under the current circumstances, particularly if we can get her into a side ward, we feel that Liz is unlikely to be well enough to come home, although if things change we can quickly make appropriate arrangements with the district nurses and other professionals at our surgery in Puddletown.
Tim Julian & I are clearly upset by the sudden turn of events but are still trying to ensure that Liz gets the most appropriate care and treatment.
It has been a very long and sad journey for Liz and the family, but finally we are having to accept defeat. It has not been through lack of trying on our part and particularly that of Liz.
We will keep you informed as always.
Dick, Julian & Tim for Liz
Monday, 25 August 2008
Update 13 - 28th August 2008
Since our last update at the end of July the continuous (24/7) chemotherapy regime has been working satisfactorily, although there is no way of knowing if it’s being effective.
The side effects to date are minimal, but Liz does feel very weak & lethargic.
This particular course of chemotherapy started on 29th July and is due to last for 12 weeks (i.e. until around the end of October) when hopefully we will get some better news following the next CT Scan.
Liz gets on very well with the nurses in the chemotherapy department and the change over of the ‘blue’ bomb each Tuesday is fairly straightforward and usually takes around an hour. Most of the time is taken up waiting for the chemotherapy drugs to be prepared in the pharmacy and brought up to the chemo suite. The chemo drugs are not prepared until blood samples have been checked to make sure it is ok to proceed. The drugs are made up ‘on demand’ due to their expense.
Two weeks ago Liz had a blood transfusion (2 units) because she was anaemic. This went OK and improved her breathing due to the increased level of red blood cells, which in turn allows a greater quantity of oxygen to be carried around the body in the blood system.
However, it has not all been plain sailing over the past month.
Fluid has been building up again in Liz’s stomach, which meant that it had to be drained again (last time at the end of April – 7 pints). This has not been very straightforward for a number of reasons and culminated in Liz getting extremely stressed in the middle of the night last Thursday.
Initially she was given an appointment to go to the day surgery unit (14th Aug), which seemed strange, as the last time it was done in the radiography department using ultrasound to make sure the drain was inserted in the right place, and that it didn’t damage any other organs.
On arrival at the Day surgery unit, the nurse in charge informed us that someone would come to the unit to carry out the procedure, and that after a couple of hours she could go home. Naturally this raised alarm bells with us, as the previous time the draining went on for around 12 hours and she was kept in overnight. As might be expected Liz was very stressed, and unhappy that the procedure might be done without the benefit of using ultrasound.
After discussions with a young registrar, it was decided that as Liz was taking Warfarin, her INR level would probably be too high to carry out the procedure in any case. Apparently no one had mentioned or thought about this particular aspect. The last reading we had was 2.3 two days earlier in the week. The surgeon would not carry out the procedure unless it was 2.0 or below in case any bleeding occurred, as it may prove difficult to stop.
We were informed that it was very unlikely that the INR level would be sufficiently low for the procedure to go ahead, and that it might take a couple of hours to get the blood test results back from the Path Lab.
At this juncture I pointed out that there were at least two departments that had hand held machines that could provide an INR reading in less than a minute. The nurses and registrar were amazed, as they were unaware of this machines existence. After telling them which departments had the machines they went off to see if they could get someone to come down to the day unit and provide an immediate result.
Shortly afterwards a nurse arrived with the credit card sized machine and took two samples which unfortunately were well above the acceptable level.
After spending most of the morning getting nowhere, Liz was sent home with instructions to reduce the Warfarin tablets on Friday and Saturday and stop them altogether on Sunday & Monday ready to be re-checked in the chemo department on Tuesday. We pointed out that in order to get the INR level down below 2.0, it would mean putting her ‘at risk’ of DVT or blood clots going to her lungs. We were told that that was a risk that had to be taken.
At the weekly appointment in the chemo department on Tuesday (19th) a further blood test was carried out. An answerphone message was left during the afternoon on the home phone by the anti-coagulant department (they manage the Warfarin doses) requesting us to contact them urgently.
We eventually made contact with them at around 7.00pm when they said the INR level was very low at 1.5 and that we should immediately increase the Warfarin dose to bring it back up to the desired level of circa 2.5! Clearly they had been left out of the ‘loop’ and were unaware of the issue relating to the INR level required to carry out the drainage procedure.
After discussion with the senior anti-coagulant doctor (at home) during the evening they told us not to take any Warfarin that night and to speak to our hospital doctor or the anti-coagulant department first thing in the morning to agree a course of action. After several phone calls on Wednesday morning it was decided that Liz should be put back on to Clexane injections for a week, and to continue without Warfarin for the time being. I went straight into the hospital to collect a week’s supply of Clexane.
About this time we also had an appointment confirmed for the drain to take place in the Radiography department under ultrasound guidance at 2.00pm on Thursday (21st). However, it was not possible at that stage to guarantee that a bed would be available for the night, which might mean the procedure would be cancelled.
On arrival at the appointed time last Thursday, we were informed that things were a bit chaotic as one of the CT scanners had broken down, currently there was no bed available, and despite trying for nearly four hours to locate Liz’s not inconsiderable sheath of notes, they had still not been located, all of which didn’t bode well.
After about an hour we were informed that a bed had been found, and even though Liz’s notes were still missing they decided to proceed without further delay as they had a small slot in their schedule.
The insertion of the drain went ahead without any major difficulty although it was a little difficult getting the fluid to flow initially. Whilst still in the ultra sound department the surgeon was able to remove about 2.7 pints of fluid although he was expecting around 7 pints in total.
Liz was taken up to a ward by which time a further 1.6 pints had drained off, making a total of just over 4 pints. Then the flow stopped, which nobody seemed too concerned about. After playing around with the plastic tube (much the same as I use for decanting wine!) I was able to get out a further pint…..still a long way short of the expected amount.
No more fluid was discharged during the evening, and mutterings took place about removing the drain after six hours to reduce the chances of infection. A new topic also came into the vocabulary…. Albumin infusion by drip. Apparently this is quite normal if over 3 litres of fluid are drained off. It is a protein product which helps restore the protein balance and also re-hydrates the body intravenously to counteract the loss of fluids during the draining process. Our concern was that it had not been given during the first draining in April. One or other of the procedures had to be wrong. Which one? Just a bit more stress for Liz as well as another hole in her arm for the infusion.
During the evening Liz was seen by two doctors who decided to leave the drain in for a few more hours.
At 1.30am she was seen by another doctor who organised the Albumin infusion and decided that he should take out the drain. To Liz’s horror he said that he had never removed a drain before and was unsure what to do, even though Liz gave him a plastic key which given to her by the team that inserted the drain, and which was supposed to make it very simple to remove.
Liz was by this time (2.00am) extremely stressed, particularly as the nurse who removed the drain in April didn’t know how to remove it and just pulled it out and hoped for the best. It was very painful and not to be repeated. In the end she told the doctor to go away and that she would accept responsibility if it became infected, but that she was not going to allow him to do it in the middle of the night and with no experience of the procedure.
To compound the situation the Albumin infusion initially went wrong when it flowed the wrong way and blood was coming out instead of Albumin going in.
It transpires that there are several types of drain, all of which have different methods of removal. To allow someone who is not trained in the correct removal procedure to take out something inserted in the stomach is absolutely appalling and will be brought to the attention of the hospital administrators in due course.
Liz spent the rest of the night awake, feeling very lonely, depressed and frightened. It was unfortunate that she didn’t get the night staff to telephone me so that I could have gone to the hospital and been with her in her hour of need. She eventually telephoned me a 7.15am in a very distressed state, explaining what had gone on overnight.
I telephoned our liaison nurse and left a message for her to see Liz as soon as possible to try and give her some support, which she did as soon as she picked up the message.
During the morning discussions took place about Liz being taken back down to the radiography department to have another ultrasound scan to see how much fluid remained, with the possibility of inserting a new drain. Eventually this was discounted, probably due it being Friday and everything winding down for the long weekend.
Due to the fact that Liz knows the sister that helped insert the drain, she called in on Liz to see her at lunchtime to check on progress and was horrified by the events of the previous evening. She took less than a minute to use the plastic key to release and remove the drain without any problems or discomfort and gave several nurses a crash course on removing the drain.
Although the drain site was still ‘leaking’ slowly, by early afternoon the ward doctor felt that she could be released with a few dressings on the basis that it would soon stop.
The doctor also told us to start taking Warfarin again on Saturday, whilst keeping on with the Clexane injections until the INR level could be checked again next Tuesday.
Unfortunately the drain site continued to leak for the rest of Friday and overnight into Saturday. Because we had a limited quantity of dressings for the Bank Holiday weekend we contacted our GP who arranged for a district nurse to visit us at home.
She was a little concerned, but decided to fit a small bag to collect the fluid instead of a normal dressing which also meant the quantity could be measured. Over the weekend the drain has continued to slowly leak and today (Monday) the district nurse changed the bag. Around 100mls a day are still leaking out of the drainage site, but hopefully this will stop in the next few days. However, the District nurse will keep in touch and visit when necessary until the matter is resolved.
Our main concern is that the total amount of fluid drained off is still only around 3 litres, which probably means that Liz will have to go through it all again, much sooner than we had expected because it has not been completely drained this time.
Hopefully with the knowledge gained this time we can stay one step ahead of the game and will be able to avoid some of the problems recently experienced.
The vast majority of nurses and doctors that we meet are very kind, helpful and seem well trained. But the administration and communication system leaves a lot to be desired. After arriving in the ward on Thursday still without her notes, they were eventually found in the chemotherapy department after a five hour search. Why everything is still written on paper and not entered into a computerised patient/hospital database which is accessible by all departments I cannot imagine. The time wasted and the cost of moving files around the hospital with the chance of being mislaid is enormous. I just don’t know how a complex organisation such as a hospital can function efficiently in today’s technological age. Too much money spent on administration and management, insufficient use of modern technology which in turn means not enough spent on front line treatment.
On a better note North Dorset Social Services responded very quickly to our request for help getting Liz in and out of the bath. An electric seat was installed within three days of seeing the person from social services. This has made it much easier for Liz to have a bath rather than a shower.
I am sorry this is quite a long update but it is important that I document and record things properly so that I can look back on them as and when required for reference purposes. At least I will have a reasonably accurate account of events even if the hospital lose theirs!
Dick & Liz
The side effects to date are minimal, but Liz does feel very weak & lethargic.
This particular course of chemotherapy started on 29th July and is due to last for 12 weeks (i.e. until around the end of October) when hopefully we will get some better news following the next CT Scan.
Liz gets on very well with the nurses in the chemotherapy department and the change over of the ‘blue’ bomb each Tuesday is fairly straightforward and usually takes around an hour. Most of the time is taken up waiting for the chemotherapy drugs to be prepared in the pharmacy and brought up to the chemo suite. The chemo drugs are not prepared until blood samples have been checked to make sure it is ok to proceed. The drugs are made up ‘on demand’ due to their expense.
Two weeks ago Liz had a blood transfusion (2 units) because she was anaemic. This went OK and improved her breathing due to the increased level of red blood cells, which in turn allows a greater quantity of oxygen to be carried around the body in the blood system.
However, it has not all been plain sailing over the past month.
Fluid has been building up again in Liz’s stomach, which meant that it had to be drained again (last time at the end of April – 7 pints). This has not been very straightforward for a number of reasons and culminated in Liz getting extremely stressed in the middle of the night last Thursday.
Initially she was given an appointment to go to the day surgery unit (14th Aug), which seemed strange, as the last time it was done in the radiography department using ultrasound to make sure the drain was inserted in the right place, and that it didn’t damage any other organs.
On arrival at the Day surgery unit, the nurse in charge informed us that someone would come to the unit to carry out the procedure, and that after a couple of hours she could go home. Naturally this raised alarm bells with us, as the previous time the draining went on for around 12 hours and she was kept in overnight. As might be expected Liz was very stressed, and unhappy that the procedure might be done without the benefit of using ultrasound.
After discussions with a young registrar, it was decided that as Liz was taking Warfarin, her INR level would probably be too high to carry out the procedure in any case. Apparently no one had mentioned or thought about this particular aspect. The last reading we had was 2.3 two days earlier in the week. The surgeon would not carry out the procedure unless it was 2.0 or below in case any bleeding occurred, as it may prove difficult to stop.
We were informed that it was very unlikely that the INR level would be sufficiently low for the procedure to go ahead, and that it might take a couple of hours to get the blood test results back from the Path Lab.
At this juncture I pointed out that there were at least two departments that had hand held machines that could provide an INR reading in less than a minute. The nurses and registrar were amazed, as they were unaware of this machines existence. After telling them which departments had the machines they went off to see if they could get someone to come down to the day unit and provide an immediate result.
Shortly afterwards a nurse arrived with the credit card sized machine and took two samples which unfortunately were well above the acceptable level.
After spending most of the morning getting nowhere, Liz was sent home with instructions to reduce the Warfarin tablets on Friday and Saturday and stop them altogether on Sunday & Monday ready to be re-checked in the chemo department on Tuesday. We pointed out that in order to get the INR level down below 2.0, it would mean putting her ‘at risk’ of DVT or blood clots going to her lungs. We were told that that was a risk that had to be taken.
At the weekly appointment in the chemo department on Tuesday (19th) a further blood test was carried out. An answerphone message was left during the afternoon on the home phone by the anti-coagulant department (they manage the Warfarin doses) requesting us to contact them urgently.
We eventually made contact with them at around 7.00pm when they said the INR level was very low at 1.5 and that we should immediately increase the Warfarin dose to bring it back up to the desired level of circa 2.5! Clearly they had been left out of the ‘loop’ and were unaware of the issue relating to the INR level required to carry out the drainage procedure.
After discussion with the senior anti-coagulant doctor (at home) during the evening they told us not to take any Warfarin that night and to speak to our hospital doctor or the anti-coagulant department first thing in the morning to agree a course of action. After several phone calls on Wednesday morning it was decided that Liz should be put back on to Clexane injections for a week, and to continue without Warfarin for the time being. I went straight into the hospital to collect a week’s supply of Clexane.
About this time we also had an appointment confirmed for the drain to take place in the Radiography department under ultrasound guidance at 2.00pm on Thursday (21st). However, it was not possible at that stage to guarantee that a bed would be available for the night, which might mean the procedure would be cancelled.
On arrival at the appointed time last Thursday, we were informed that things were a bit chaotic as one of the CT scanners had broken down, currently there was no bed available, and despite trying for nearly four hours to locate Liz’s not inconsiderable sheath of notes, they had still not been located, all of which didn’t bode well.
After about an hour we were informed that a bed had been found, and even though Liz’s notes were still missing they decided to proceed without further delay as they had a small slot in their schedule.
The insertion of the drain went ahead without any major difficulty although it was a little difficult getting the fluid to flow initially. Whilst still in the ultra sound department the surgeon was able to remove about 2.7 pints of fluid although he was expecting around 7 pints in total.
Liz was taken up to a ward by which time a further 1.6 pints had drained off, making a total of just over 4 pints. Then the flow stopped, which nobody seemed too concerned about. After playing around with the plastic tube (much the same as I use for decanting wine!) I was able to get out a further pint…..still a long way short of the expected amount.
No more fluid was discharged during the evening, and mutterings took place about removing the drain after six hours to reduce the chances of infection. A new topic also came into the vocabulary…. Albumin infusion by drip. Apparently this is quite normal if over 3 litres of fluid are drained off. It is a protein product which helps restore the protein balance and also re-hydrates the body intravenously to counteract the loss of fluids during the draining process. Our concern was that it had not been given during the first draining in April. One or other of the procedures had to be wrong. Which one? Just a bit more stress for Liz as well as another hole in her arm for the infusion.
During the evening Liz was seen by two doctors who decided to leave the drain in for a few more hours.
At 1.30am she was seen by another doctor who organised the Albumin infusion and decided that he should take out the drain. To Liz’s horror he said that he had never removed a drain before and was unsure what to do, even though Liz gave him a plastic key which given to her by the team that inserted the drain, and which was supposed to make it very simple to remove.
Liz was by this time (2.00am) extremely stressed, particularly as the nurse who removed the drain in April didn’t know how to remove it and just pulled it out and hoped for the best. It was very painful and not to be repeated. In the end she told the doctor to go away and that she would accept responsibility if it became infected, but that she was not going to allow him to do it in the middle of the night and with no experience of the procedure.
To compound the situation the Albumin infusion initially went wrong when it flowed the wrong way and blood was coming out instead of Albumin going in.
It transpires that there are several types of drain, all of which have different methods of removal. To allow someone who is not trained in the correct removal procedure to take out something inserted in the stomach is absolutely appalling and will be brought to the attention of the hospital administrators in due course.
Liz spent the rest of the night awake, feeling very lonely, depressed and frightened. It was unfortunate that she didn’t get the night staff to telephone me so that I could have gone to the hospital and been with her in her hour of need. She eventually telephoned me a 7.15am in a very distressed state, explaining what had gone on overnight.
I telephoned our liaison nurse and left a message for her to see Liz as soon as possible to try and give her some support, which she did as soon as she picked up the message.
During the morning discussions took place about Liz being taken back down to the radiography department to have another ultrasound scan to see how much fluid remained, with the possibility of inserting a new drain. Eventually this was discounted, probably due it being Friday and everything winding down for the long weekend.
Due to the fact that Liz knows the sister that helped insert the drain, she called in on Liz to see her at lunchtime to check on progress and was horrified by the events of the previous evening. She took less than a minute to use the plastic key to release and remove the drain without any problems or discomfort and gave several nurses a crash course on removing the drain.
Although the drain site was still ‘leaking’ slowly, by early afternoon the ward doctor felt that she could be released with a few dressings on the basis that it would soon stop.
The doctor also told us to start taking Warfarin again on Saturday, whilst keeping on with the Clexane injections until the INR level could be checked again next Tuesday.
Unfortunately the drain site continued to leak for the rest of Friday and overnight into Saturday. Because we had a limited quantity of dressings for the Bank Holiday weekend we contacted our GP who arranged for a district nurse to visit us at home.
She was a little concerned, but decided to fit a small bag to collect the fluid instead of a normal dressing which also meant the quantity could be measured. Over the weekend the drain has continued to slowly leak and today (Monday) the district nurse changed the bag. Around 100mls a day are still leaking out of the drainage site, but hopefully this will stop in the next few days. However, the District nurse will keep in touch and visit when necessary until the matter is resolved.
Our main concern is that the total amount of fluid drained off is still only around 3 litres, which probably means that Liz will have to go through it all again, much sooner than we had expected because it has not been completely drained this time.
Hopefully with the knowledge gained this time we can stay one step ahead of the game and will be able to avoid some of the problems recently experienced.
The vast majority of nurses and doctors that we meet are very kind, helpful and seem well trained. But the administration and communication system leaves a lot to be desired. After arriving in the ward on Thursday still without her notes, they were eventually found in the chemotherapy department after a five hour search. Why everything is still written on paper and not entered into a computerised patient/hospital database which is accessible by all departments I cannot imagine. The time wasted and the cost of moving files around the hospital with the chance of being mislaid is enormous. I just don’t know how a complex organisation such as a hospital can function efficiently in today’s technological age. Too much money spent on administration and management, insufficient use of modern technology which in turn means not enough spent on front line treatment.
On a better note North Dorset Social Services responded very quickly to our request for help getting Liz in and out of the bath. An electric seat was installed within three days of seeing the person from social services. This has made it much easier for Liz to have a bath rather than a shower.
I am sorry this is quite a long update but it is important that I document and record things properly so that I can look back on them as and when required for reference purposes. At least I will have a reasonably accurate account of events even if the hospital lose theirs!
Dick & Liz
Tuesday, 29 July 2008
Update 12(b) - 29th July 2008
29th July 2008
Just a brief update to keep you up to speed with Liz’s treatment.
Following on from yesterday, Liz had to attend the hospital today to have the PICC line connected up to the ‘continuous’ infusion unit and have a starter dose of chemotherapy.
This all went according to plan, and didn’t take too long.
Initially she had a short dose of one chemotherapy drug by infusion through the PICC line, following which the continuous infusion pack was attached. She now looks like a terrorist with an unsavoury device clipped to her waist band! It is about 200mm long by 60mm in diameter and is housed in a padded sheath to protect it. No batteries, just pressurised so that the chemical is discharged at a set amount over a seven day period.
We have to go back to the hospital every Tuesday for the next 12 weeks to have the pack replaced.
The only difficulty will be when Liz has a shower as it must be kept dry and cannot be removed, and how easy it will be to sleep with a small umbrella pouch alongside her! It cannot be disconnected.
The only other comment made by the chemo nurse was that her urine will probably turn blue!
All for now
Dick etc
Just a brief update to keep you up to speed with Liz’s treatment.
Following on from yesterday, Liz had to attend the hospital today to have the PICC line connected up to the ‘continuous’ infusion unit and have a starter dose of chemotherapy.
This all went according to plan, and didn’t take too long.
Initially she had a short dose of one chemotherapy drug by infusion through the PICC line, following which the continuous infusion pack was attached. She now looks like a terrorist with an unsavoury device clipped to her waist band! It is about 200mm long by 60mm in diameter and is housed in a padded sheath to protect it. No batteries, just pressurised so that the chemical is discharged at a set amount over a seven day period.
We have to go back to the hospital every Tuesday for the next 12 weeks to have the pack replaced.
The only difficulty will be when Liz has a shower as it must be kept dry and cannot be removed, and how easy it will be to sleep with a small umbrella pouch alongside her! It cannot be disconnected.
The only other comment made by the chemo nurse was that her urine will probably turn blue!
All for now
Dick etc
Monday, 28 July 2008
Update 12 - 28th July 2008
Hi one and all
We have just spent the afternoon at the hospital.
Thankfully the insertion of a permanent ‘infusion line’ through a vein in Liz’s arm round to her heart was successful. This avoids the need for a surgical operation in the theatre which we were told is not very pleasant.
We have to go back tomorrow lunchtime to have the chemo pack installed which will drip feed the chemo into a vein 24 hours a day. I think we will have to go to the hospital once a week for the next 12 weeks to have the chemo ‘topped’ up. There will be another scan in about 12 weeks to check on progress.
Hopefully the result will be better than the last time.
Liz is also able to stay on Warfarin tablets which is another positive, as it avoids the necessity for me to give her an injection in her stomach every morning, which neither of us enjoy very much!
All for now.
Dick
We have just spent the afternoon at the hospital.
Thankfully the insertion of a permanent ‘infusion line’ through a vein in Liz’s arm round to her heart was successful. This avoids the need for a surgical operation in the theatre which we were told is not very pleasant.
We have to go back tomorrow lunchtime to have the chemo pack installed which will drip feed the chemo into a vein 24 hours a day. I think we will have to go to the hospital once a week for the next 12 weeks to have the chemo ‘topped’ up. There will be another scan in about 12 weeks to check on progress.
Hopefully the result will be better than the last time.
Liz is also able to stay on Warfarin tablets which is another positive, as it avoids the necessity for me to give her an injection in her stomach every morning, which neither of us enjoy very much!
All for now.
Dick
Sunday, 27 July 2008
Mum Sporting New Head Gear
An alternative to mum's wig, these are the headscarves that she wears most of the time
Update 11 - 24th July 2008
Hi everyone.
My apologies to some of you that have sent emails but not received individual replies from us. Life has been quite difficult for some time.
As you know the first line of chemotherapy treatment only checked the development of the cancer. i.e. It didn’t shrink or kill it. It stayed the same size, which was in a way a small success.
However, the consultant confirmed that there was no point continuing with the same treatment as it would not achieve the desired effect.
Liz started a new course of chemotherapy on May15th, using a different type of drug. The consultant informed us that the success rate was a lot lower than the first treatment.
The plan was for Liz to have 3 or 4 cycles of treatment each of three weeks, followed by another scan to check on progress.
We were informed that there was a strong possibility that Liz would lose her hair after 3-4 weeks. She tried using a ‘cold cap’ during the first infusion, which was designed to freeze the hair follicles whilst the drug was being infused. Unfortunately it didn’t work, and most of her hair fell out in week four….right on time.
Because we expected her hair to fall out we had already organised a smashing Revlon Wig, along with a number of headscarves/caps which she feels very comfortable in, both around the house and when we go out.
The main side effect of this regime (apart from hair loss) is diarrhoea and constipation, during which time Liz eats very little and loses weight, despite me pumping lots of high protein/calorie drinks and food into her.
When the D & C stops she naturally feels very weak and extremely tired for a few days until she recovers. Clearly it is very unpleasant, but as usual Liz never complains, just suffers in silence. It is very difficult for me to know what to do for the best, other than to administer all the drugs at the right time and try and stock up with food that she might like….such as clotted cream ice cream with scrummy Canadian Maple Syrup at 11.00pm!
On Sunday June 2nd we attended ‘Race for Life’ event to support a friend who used to work with Liz. She was running to raise money for the cancer charity, and was running ‘for Liz’. She did very well, coming second out of around 2,000, which was an excellent result, and in the process raised a good sum of money.
Friends continue to ‘pamper’ Liz with face massages, finger and toe nail polish (two different people!), and more recently she has had an enjoyable Head & Shoulder massage via the local hospice (another one planned for next week).
It was Liz’s 65th Birthday on 17th June. Julian came down for a couple of days, and on her birthday we went out for a very nice meal, wearing her new wig!
We decided a year ago that we would organise a Garden Party at Wheelwrights around the time of Liz’s birthday to celebrate not only her 65th but also her retirement, and the fact that we had lived in the village for 21 years. In fact we were also able to celebrate my retirement which was brought forward by a couple of years due to Liz’s ill health. We decided to go ahead with the party even though Liz was unwell. In fact she coped very well and enjoyed the day immensely.
The day was a great success, with 80 friends and family attending. The weather could have been a little better, but at least we did see the sun on several occasions and it didn’t rain. In fact the weather has been generally quite poor on the weekends either side of the party.
Julian supplied a very large Gazebo for the food, which was done by outside caterers. We also had several smaller Gazebos for the drinks and live musical entertainment etc.
We brought a French Flautist down from London to play a wide range of popular and classical music whilst guests were arriving and having their two course meal. Several guests bought one or more of his three CD’s. We first heard him playing in Sherborne High Street a couple of years ago. He has worked with a number of well known people including Shirley Bassey and Michael Ball, as well as a number of top orchestras. Liz was unaware that we had booked him until he arrived in the garden, so it was a really nice surprise for her.
On July 16th Liz had another scan to check on progress.
On the weekend of the 18/20th July we visited some friends near Winchester and stayed for a belated lunch due to the awful traffic around Wimborne and again on the M27 just north of Southampton. In the afternoon we travelled on to Guildford for the weekend with the boys and their families. Liz’s appetite was very good over the weekend, in spite of still having problems with her stomach. On Saturday we visited Polesdon Lacey a National Trust property, going for a pleasant stroll (Liz in wheelchair) around the grounds with their spectacular views over the English countryside.
Liz was in a lot of discomfort yesterday (Wednesday) and today, so we went to see our GP, who felt it was probably being caused by a build-up of fluid again, which he thought might need draining (three months since last time).
This afternoon (Thursday) we had an appointment with the Oncologist, who unfortunately confirmed that the scan taken last week showed that there had been some deterioration since the last scan 10 weeks ago. In other words the chemotherapy had not been beneficial and that there was no point continuing with the same drug. The tumours had grown a bit, not what we wanted to hear.
He outlined his next course of action, which is based on a 12 weeks course of ‘continuous’ infusion 24 hours a day, with two added drugs every six weeks. This treatment will require a permanent ‘line’ to be inserted in a vein.
The Oncologist has quadrupled the quantity of steroids she is having, to try and reduce the effect of the tumours, particularly the primary one in the bowel. From the symptoms Liz has he thinks the primary tumour is in effect almost blocking the bowel and inflaming the whole area. Fluid and gas are being produced which is causing the constipation, wind, fluid build-up and stomach cramps.
Hopefully the symptoms will reduce once the tablets kick in.
The next problem is fitting a PICC line into a vein in her arm for the continuous infusion of the drugs. Her veins are in a very bad way because of all the blood samples and injections she has had. They found one good vein today which hopefully will allow them to get the line into place on Monday. They will thread it up through the vein and into the area around her heart.
If they can't get it in, she will have to wait for the surgeons to find a theatre slot, give her a general anaesthetic and implant a 'central' line under the skin near her heart.
She will have a small bottle of drugs on a belt around her waist. The drugs are administered automatically 24/7. We will need to go to the hospital once a week to have it topped up.
This is planned to commence next Monday (28th).
Because of the type of drugs it may be necessary to come off Warfarin, which unfortunately means I will have to give her an injection of Clexane in her stomach every morning which is not very pleasant for either of us.
That’s all for now, apart to thank you for all the cards, emails, flowers, chocolates and biscuits and garden produce which arrive almost on a daily basis! Your kind thoughts and offers of support are really appreciated by all of the family.
Depending on how things go it might be sometime before you receive the next update. However, please feel free to email or write as Liz enjoys hearing your news, but please don’t expect individual replies as they are very time consuming.
Wishing you all the best.
From Dick on behalf of Liz and the family
My apologies to some of you that have sent emails but not received individual replies from us. Life has been quite difficult for some time.
As you know the first line of chemotherapy treatment only checked the development of the cancer. i.e. It didn’t shrink or kill it. It stayed the same size, which was in a way a small success.
However, the consultant confirmed that there was no point continuing with the same treatment as it would not achieve the desired effect.
Liz started a new course of chemotherapy on May15th, using a different type of drug. The consultant informed us that the success rate was a lot lower than the first treatment.
The plan was for Liz to have 3 or 4 cycles of treatment each of three weeks, followed by another scan to check on progress.
We were informed that there was a strong possibility that Liz would lose her hair after 3-4 weeks. She tried using a ‘cold cap’ during the first infusion, which was designed to freeze the hair follicles whilst the drug was being infused. Unfortunately it didn’t work, and most of her hair fell out in week four….right on time.
Because we expected her hair to fall out we had already organised a smashing Revlon Wig, along with a number of headscarves/caps which she feels very comfortable in, both around the house and when we go out.
The main side effect of this regime (apart from hair loss) is diarrhoea and constipation, during which time Liz eats very little and loses weight, despite me pumping lots of high protein/calorie drinks and food into her.
When the D & C stops she naturally feels very weak and extremely tired for a few days until she recovers. Clearly it is very unpleasant, but as usual Liz never complains, just suffers in silence. It is very difficult for me to know what to do for the best, other than to administer all the drugs at the right time and try and stock up with food that she might like….such as clotted cream ice cream with scrummy Canadian Maple Syrup at 11.00pm!
On Sunday June 2nd we attended ‘Race for Life’ event to support a friend who used to work with Liz. She was running to raise money for the cancer charity, and was running ‘for Liz’. She did very well, coming second out of around 2,000, which was an excellent result, and in the process raised a good sum of money.
Friends continue to ‘pamper’ Liz with face massages, finger and toe nail polish (two different people!), and more recently she has had an enjoyable Head & Shoulder massage via the local hospice (another one planned for next week).
It was Liz’s 65th Birthday on 17th June. Julian came down for a couple of days, and on her birthday we went out for a very nice meal, wearing her new wig!
We decided a year ago that we would organise a Garden Party at Wheelwrights around the time of Liz’s birthday to celebrate not only her 65th but also her retirement, and the fact that we had lived in the village for 21 years. In fact we were also able to celebrate my retirement which was brought forward by a couple of years due to Liz’s ill health. We decided to go ahead with the party even though Liz was unwell. In fact she coped very well and enjoyed the day immensely.
The day was a great success, with 80 friends and family attending. The weather could have been a little better, but at least we did see the sun on several occasions and it didn’t rain. In fact the weather has been generally quite poor on the weekends either side of the party.
Julian supplied a very large Gazebo for the food, which was done by outside caterers. We also had several smaller Gazebos for the drinks and live musical entertainment etc.
We brought a French Flautist down from London to play a wide range of popular and classical music whilst guests were arriving and having their two course meal. Several guests bought one or more of his three CD’s. We first heard him playing in Sherborne High Street a couple of years ago. He has worked with a number of well known people including Shirley Bassey and Michael Ball, as well as a number of top orchestras. Liz was unaware that we had booked him until he arrived in the garden, so it was a really nice surprise for her.
On July 16th Liz had another scan to check on progress.
On the weekend of the 18/20th July we visited some friends near Winchester and stayed for a belated lunch due to the awful traffic around Wimborne and again on the M27 just north of Southampton. In the afternoon we travelled on to Guildford for the weekend with the boys and their families. Liz’s appetite was very good over the weekend, in spite of still having problems with her stomach. On Saturday we visited Polesdon Lacey a National Trust property, going for a pleasant stroll (Liz in wheelchair) around the grounds with their spectacular views over the English countryside.
Liz was in a lot of discomfort yesterday (Wednesday) and today, so we went to see our GP, who felt it was probably being caused by a build-up of fluid again, which he thought might need draining (three months since last time).
This afternoon (Thursday) we had an appointment with the Oncologist, who unfortunately confirmed that the scan taken last week showed that there had been some deterioration since the last scan 10 weeks ago. In other words the chemotherapy had not been beneficial and that there was no point continuing with the same drug. The tumours had grown a bit, not what we wanted to hear.
He outlined his next course of action, which is based on a 12 weeks course of ‘continuous’ infusion 24 hours a day, with two added drugs every six weeks. This treatment will require a permanent ‘line’ to be inserted in a vein.
The Oncologist has quadrupled the quantity of steroids she is having, to try and reduce the effect of the tumours, particularly the primary one in the bowel. From the symptoms Liz has he thinks the primary tumour is in effect almost blocking the bowel and inflaming the whole area. Fluid and gas are being produced which is causing the constipation, wind, fluid build-up and stomach cramps.
Hopefully the symptoms will reduce once the tablets kick in.
The next problem is fitting a PICC line into a vein in her arm for the continuous infusion of the drugs. Her veins are in a very bad way because of all the blood samples and injections she has had. They found one good vein today which hopefully will allow them to get the line into place on Monday. They will thread it up through the vein and into the area around her heart.
If they can't get it in, she will have to wait for the surgeons to find a theatre slot, give her a general anaesthetic and implant a 'central' line under the skin near her heart.
She will have a small bottle of drugs on a belt around her waist. The drugs are administered automatically 24/7. We will need to go to the hospital once a week to have it topped up.
This is planned to commence next Monday (28th).
Because of the type of drugs it may be necessary to come off Warfarin, which unfortunately means I will have to give her an injection of Clexane in her stomach every morning which is not very pleasant for either of us.
That’s all for now, apart to thank you for all the cards, emails, flowers, chocolates and biscuits and garden produce which arrive almost on a daily basis! Your kind thoughts and offers of support are really appreciated by all of the family.
Depending on how things go it might be sometime before you receive the next update. However, please feel free to email or write as Liz enjoys hearing your news, but please don’t expect individual replies as they are very time consuming.
Wishing you all the best.
From Dick on behalf of Liz and the family
Update 10 - 10th May 2008
Morning everyone
Just a brief review of our trip to Poole Hospital yesterday (Friday) when the plan was have blood tests and a CT scan done prior to entering Liz into a ‘national’ chemotherapy trial.
We arrived early (9.00am) so had time to get the blood tests under way before the CT scan. The trial co-ordinator explained that Liz already met some of the criteria necessary to join the trial, but they were some others that needed to be checked out during the morning to confirm her eligibility. In order for the trial results to be meaningful the participants (1269) all had to initially have similar characteristics.
The trial started in 2006 and to date only 9 people had been eligible for the trial from Poole hospital.
After having a cannula inserted in her arm (just another needle which Liz hates!) and drinking a litre of water the scan was successfully carried out.
On returning to the trial co-ordinator after about 2 hours she confirmed that she had received back the blood test results which were fine and met the criteria for the trial. This was a relief as we thought that she might still have been anaemic, which would have excluded her from the trial. In fact the haemoglobin level had increased from 10.8 to 12.0 over the past week since she had the fluid drained. So no problems there.
The co-ordinator then went on to explain (for the first time) that the scan had to provide ‘measurable’ data on the tumours in order to benchmark the success of the trial. The tumours also needed to be a minimum of 10mm. This was news to us, and although Liz has now had about four or five scans they have never been ‘measured’.
It normally takes several days for the consultant radiographer to interpret the scan and write the report. However, the plan was start the trial next Tuesday, and therefore the whole thing was in jeopardy of being delayed if the scan results were not available until next Tuesday or Wednesday. Liz could not be confirmed into the trial until the scan results showed she met the criteria.
By now things were getting quite stressful for Liz, and so I exerted some pressure on the co-ordinator to try and get the scans appraised immediately whilst we were still in the hospital. After initial failure, she finally spoke to the doctor that carried out the scan, who said she might be able to review the scan in about half an hour.
The co-ordinator phoned the doctor back after half an hour only to be told that the tumours could not be measured as they were too small and were therefore less than 10mm and did not meet the criteria for the trial!
Although it was disappointing for Liz not to be included in the trial, it was good news that the cancer was still quite small, and not really changing very much if at all at this stage, which confirmed what the consultant had told us, namely that it was ‘slow’ growing.
The outcome is that Liz is now to have the same basic chemotherapy programme (as in the trial) at Dorchester hospital. In the trial there were two other possible ‘add-on’ treatments one of which was just designed to try and reduce the side effects, and the other to improve the efficacy of the basic drug. Even if Liz had been eligible for the trial she would have been randomly selected and may well have ended up with just the basic treatment any way. So we are too disappointed about not being in the trial, particularly as the scan was reasonably positive regarding the size and status of the cancer.
We finally left the hospital at around 1.00pm and within half an hour the co-ordinator had been in touch with Dorchester hospital to arrange a slot to start the chemotherapy as quickly as possible. Later in the afternoon she telephoned to confirm that it would commence on Thursday 15th at 9.30am, and that she had arranged for the ‘head cooling’ cap to be made available which ‘might’ stop Liz’s hair falling out.
After a ‘roller coaster’ and emotional morning at the hospital, we went to a wonderful 10 acre garden in the centre of Poole/Bournemouth called Compton Acres. We had a nice lunch in the Italian restaurant, and then took about an hour and a half wandering around the thickly wooded and hilly gardens that have wonderful views over the famous (and very expensive) Sandbanks area of Poole Harbour, and also Brownsea Island (National Trust and Red Squirrels).
The highlights included the Grand Italian garden and the Rock and Water garden with their wonderful purple Acers drooping into the water. However the real highlight was undoubtedly the spectacular secluded Japanese garden (reputed to be the largest/best in the UK) which was just a mass of flowering azaleas set in a little canyon with ponds and a small waterfall. Absolutely wonderful at this time of the year. Well worth a visit (open all year).
We are having a quiet few days now before the chemo starts again on Thursday (the plan is for 4 cycles each of 3 weeks duration). The only thing we have to do is have a blood test at the doctors on Monday morning to check the Warfarin level is stable.
I am aware that some of you either had difficulty opening the last email attachment, or just didn’t receive it, so if you missed either update 8 or 9 and would like me to send it/them to you again please let me know. Likewise, depending on how your email security system is set up some of my emails may end up in your spam or junk mail folders, and if you just ‘bulk’ delete without checking them individually you will not be aware of them!.
In future I will inset the letter into the email rather than making it an attachment, which might make it easier for some of you.
As always, thanks for your continuing words of support and offers of help.
Dick
Just a brief review of our trip to Poole Hospital yesterday (Friday) when the plan was have blood tests and a CT scan done prior to entering Liz into a ‘national’ chemotherapy trial.
We arrived early (9.00am) so had time to get the blood tests under way before the CT scan. The trial co-ordinator explained that Liz already met some of the criteria necessary to join the trial, but they were some others that needed to be checked out during the morning to confirm her eligibility. In order for the trial results to be meaningful the participants (1269) all had to initially have similar characteristics.
The trial started in 2006 and to date only 9 people had been eligible for the trial from Poole hospital.
After having a cannula inserted in her arm (just another needle which Liz hates!) and drinking a litre of water the scan was successfully carried out.
On returning to the trial co-ordinator after about 2 hours she confirmed that she had received back the blood test results which were fine and met the criteria for the trial. This was a relief as we thought that she might still have been anaemic, which would have excluded her from the trial. In fact the haemoglobin level had increased from 10.8 to 12.0 over the past week since she had the fluid drained. So no problems there.
The co-ordinator then went on to explain (for the first time) that the scan had to provide ‘measurable’ data on the tumours in order to benchmark the success of the trial. The tumours also needed to be a minimum of 10mm. This was news to us, and although Liz has now had about four or five scans they have never been ‘measured’.
It normally takes several days for the consultant radiographer to interpret the scan and write the report. However, the plan was start the trial next Tuesday, and therefore the whole thing was in jeopardy of being delayed if the scan results were not available until next Tuesday or Wednesday. Liz could not be confirmed into the trial until the scan results showed she met the criteria.
By now things were getting quite stressful for Liz, and so I exerted some pressure on the co-ordinator to try and get the scans appraised immediately whilst we were still in the hospital. After initial failure, she finally spoke to the doctor that carried out the scan, who said she might be able to review the scan in about half an hour.
The co-ordinator phoned the doctor back after half an hour only to be told that the tumours could not be measured as they were too small and were therefore less than 10mm and did not meet the criteria for the trial!
Although it was disappointing for Liz not to be included in the trial, it was good news that the cancer was still quite small, and not really changing very much if at all at this stage, which confirmed what the consultant had told us, namely that it was ‘slow’ growing.
The outcome is that Liz is now to have the same basic chemotherapy programme (as in the trial) at Dorchester hospital. In the trial there were two other possible ‘add-on’ treatments one of which was just designed to try and reduce the side effects, and the other to improve the efficacy of the basic drug. Even if Liz had been eligible for the trial she would have been randomly selected and may well have ended up with just the basic treatment any way. So we are too disappointed about not being in the trial, particularly as the scan was reasonably positive regarding the size and status of the cancer.
We finally left the hospital at around 1.00pm and within half an hour the co-ordinator had been in touch with Dorchester hospital to arrange a slot to start the chemotherapy as quickly as possible. Later in the afternoon she telephoned to confirm that it would commence on Thursday 15th at 9.30am, and that she had arranged for the ‘head cooling’ cap to be made available which ‘might’ stop Liz’s hair falling out.
After a ‘roller coaster’ and emotional morning at the hospital, we went to a wonderful 10 acre garden in the centre of Poole/Bournemouth called Compton Acres. We had a nice lunch in the Italian restaurant, and then took about an hour and a half wandering around the thickly wooded and hilly gardens that have wonderful views over the famous (and very expensive) Sandbanks area of Poole Harbour, and also Brownsea Island (National Trust and Red Squirrels).
The highlights included the Grand Italian garden and the Rock and Water garden with their wonderful purple Acers drooping into the water. However the real highlight was undoubtedly the spectacular secluded Japanese garden (reputed to be the largest/best in the UK) which was just a mass of flowering azaleas set in a little canyon with ponds and a small waterfall. Absolutely wonderful at this time of the year. Well worth a visit (open all year).
We are having a quiet few days now before the chemo starts again on Thursday (the plan is for 4 cycles each of 3 weeks duration). The only thing we have to do is have a blood test at the doctors on Monday morning to check the Warfarin level is stable.
I am aware that some of you either had difficulty opening the last email attachment, or just didn’t receive it, so if you missed either update 8 or 9 and would like me to send it/them to you again please let me know. Likewise, depending on how your email security system is set up some of my emails may end up in your spam or junk mail folders, and if you just ‘bulk’ delete without checking them individually you will not be aware of them!.
In future I will inset the letter into the email rather than making it an attachment, which might make it easier for some of you.
As always, thanks for your continuing words of support and offers of help.
Dick
Update 9 - 4th May 2008
Morning all
Just a brief update on Liz’s progress this week.
In the last update I mentioned that she was due to go into hospital to have fluid drained from her stomach.
We attended at the appointed time, 4.00pm last Tuesday, but they didn’t know anything about her or the procedure and said they expected her in the afternoon on Wednesday. The original plan was to get her a bed late on Tuesday and carry out the procedure first thing on Wednesday morning!
Because Liz was so uncomfortable I had made it plain that if they didn’t find a bed I would take her down to A & E and abandon her so that they would be forced to find a bed! After almost two hours they found a bed. She was eventually seen by two doctors at 11.00pm who confirmed that she was on ‘the list’ for Wednesday at 10.10am.
The drain was put in under local anaesthetic using a scan similar to those used on pregnant women. All went well and she was back in the ward by 11.45am. By the time we went in after lunch 1.2 litres of fluid had been removed, and during the afternoon and evening a further 2.9litres were drained, making 4.1litres (just over 7pints) in total. She lost nearly 10 Lbs in weight in around 8 hours!
She didn’t have a very good night on Wednesday as a 91 year old lady in the next bed fell over at 4.00am and broke her pelvis!
On Thursday having completed the drainage they gave Liz some iron tablets as she was a little anaemic, but this causes constipation, so they also gave her a double dose (by mistake) of laxative which really upset her already tender stomach (from the fluid which had been pressing on all her internal organs).
Throughout Thursday she was very uncomfortable, but was discharged around 5.00pm. She now only has to take one iron tablet a day and no laxative, which seems to be bearable. Her stomach does seem to have settled down although she is very weak.
We have also been trying to get her off the Clexane injection (every day), which is unpleasant and causes a lot of bruising. They are now reverting to Warfarin tablets; but that means regular blood checks at the doctors or hospital to ensure the INR level is correct. However a new drug has recently been licensed for use with knee and hip replacement patients who are at risk from blood clots. Unfortunately it is not approved for use on cancer patients yet and is therefore not available on the NHS. The hospital is looking into the possibility of getting it privately for Liz (£10.00 per tablet).
We went to the hospital yesterday (Sat) for a blood test for Warfarin, and have to go again on Tuesday. Thankfully for the time being, the injections have been stopped.
Liz has to have a scan and more blood tests at Poole Hospital next Friday, prior to starting the next chemotherapy programme (Tues 13th or Wed 14th) which is 12 weeks long (4 cycles of three weeks), during which time she will unfortunately lose her hair. She is threatening to have a red Afro wig for weekdays and a green punk one for weekends!
All being well the intention is to include her in a national trial called Piccolo which is investigating drugs to either improve the efficacy of the chemo drug, or reduce the unpleasant side effects. Because it is by random selection she may still end up with the basic drug and not one of the two alternatives. We will be informed before commencing the treatment.
All for now Dick & Liz
Just a brief update on Liz’s progress this week.
In the last update I mentioned that she was due to go into hospital to have fluid drained from her stomach.
We attended at the appointed time, 4.00pm last Tuesday, but they didn’t know anything about her or the procedure and said they expected her in the afternoon on Wednesday. The original plan was to get her a bed late on Tuesday and carry out the procedure first thing on Wednesday morning!
Because Liz was so uncomfortable I had made it plain that if they didn’t find a bed I would take her down to A & E and abandon her so that they would be forced to find a bed! After almost two hours they found a bed. She was eventually seen by two doctors at 11.00pm who confirmed that she was on ‘the list’ for Wednesday at 10.10am.
The drain was put in under local anaesthetic using a scan similar to those used on pregnant women. All went well and she was back in the ward by 11.45am. By the time we went in after lunch 1.2 litres of fluid had been removed, and during the afternoon and evening a further 2.9litres were drained, making 4.1litres (just over 7pints) in total. She lost nearly 10 Lbs in weight in around 8 hours!
She didn’t have a very good night on Wednesday as a 91 year old lady in the next bed fell over at 4.00am and broke her pelvis!
On Thursday having completed the drainage they gave Liz some iron tablets as she was a little anaemic, but this causes constipation, so they also gave her a double dose (by mistake) of laxative which really upset her already tender stomach (from the fluid which had been pressing on all her internal organs).
Throughout Thursday she was very uncomfortable, but was discharged around 5.00pm. She now only has to take one iron tablet a day and no laxative, which seems to be bearable. Her stomach does seem to have settled down although she is very weak.
We have also been trying to get her off the Clexane injection (every day), which is unpleasant and causes a lot of bruising. They are now reverting to Warfarin tablets; but that means regular blood checks at the doctors or hospital to ensure the INR level is correct. However a new drug has recently been licensed for use with knee and hip replacement patients who are at risk from blood clots. Unfortunately it is not approved for use on cancer patients yet and is therefore not available on the NHS. The hospital is looking into the possibility of getting it privately for Liz (£10.00 per tablet).
We went to the hospital yesterday (Sat) for a blood test for Warfarin, and have to go again on Tuesday. Thankfully for the time being, the injections have been stopped.
Liz has to have a scan and more blood tests at Poole Hospital next Friday, prior to starting the next chemotherapy programme (Tues 13th or Wed 14th) which is 12 weeks long (4 cycles of three weeks), during which time she will unfortunately lose her hair. She is threatening to have a red Afro wig for weekdays and a green punk one for weekends!
All being well the intention is to include her in a national trial called Piccolo which is investigating drugs to either improve the efficacy of the chemo drug, or reduce the unpleasant side effects. Because it is by random selection she may still end up with the basic drug and not one of the two alternatives. We will be informed before commencing the treatment.
All for now Dick & Liz
Update 8 - 24th April 2008
Hi everyone
Over the past 2 months or so Liz has had three cycles of chemotherapy each lasting three weeks.
Only one day was needed in hospital at the start of each cycle. This was followed by two weeks of chemo tablets at home, with a week’s recovery period before the next cycle.
Apart from tingling fingers for the first few days of treatment, the first two cycles were not too difficult for Liz. She felt tired towards the end of each cycle, and had to keep away from people with infections in her ‘low period’ when her blood count was at its lowest.
She did have a difficult few days in the middle of the second cycle when her breathing became very difficult. She had to go to A & E for tests, and was admitted for a few days whilst they checked her over. They could not identify the cause as being directly linked to the chemotherapy, but thought it was probably due to a combination of factors including stress and anxiety.
They carried out another CT Scan of her lungs to check on the blood clots that were present back in December, and to see if the cancer had spread or had created new clots. Everything was very positive, the original clots had been re-absorbed by her body, and there were no new blot clots and no sign of the cancer having spread. Following the stay in hospital her breathing improved significantly.
The third cycle was much more difficult as the cumulative effect of the chemotherapy took hold. At the beginning of the second week she became extremely tired and slept/dozed most of the day. It was very difficult for her to do anything at all, and even if she tried to read a book she would fall asleep. She has spent most of the time over the past three weeks in the conservatory.
At the same time her appetite became very ‘iffy’ and would change by the day: generally she would only eat very small portions or nothing at all.
One of the main problems that Liz has had to cope with is a ‘bloated/extended’ stomach, which has been getting progressively worse over the past 5/6 weeks. She has been taking tablets to help with the wind, and we knew that there was some retention of water. Last weekend I checked her weight, and found that she had put on 6/7 lbs in the previous 7/8 weeks. We concluded that it must be due to water retention which we now know is not a good sign.
Another problem that Liz has to put up with is the daily injection I give her (into her stomach) every day to stop blot clots. Unfortunately she has not been allowed to go back on to Warfarin because of the chemo drugs and the cancer. However a new drug (same effect as Warfarin) in tablet form has just been licenced by the government, initially for use with hip and knee replacement patients. I have asked the consultant if he can obtain the new drug privately to save Liz having the injection each day, as it will not be available on NHS until it gets approval for wider use.
Her consultant wanted to review the chemo treatment after three cycles and make any adjustments before starting on the next three cycles. He organised a major CT scan and some blood tests last week ready for the review meeting this week (Tuesday 4.15pm).
Both Liz & I were very apprehensive about the meeting as you can imagine. Unfortunately we were right to be as it was far from encouraging.
The chemotherapy treatment had not worked. The tumours were had not changed in size or number, they were virtually the same as the benchmark scan taken just before she started the treatment 10 weeks ago in early February. It goes without saying that Liz was and is devastated. The only consolation was that the scans indicated that the liver, spleen and pancreas were all ok. i.e. no spread of cancer.
In view of the lack of progress, the consultant said there was no point continuing with the treatment as it would not be beneficial. He then outlined another chemotherapy treatment programme which he intended to use, and also outlined a European wide ‘trial’ in which she could participate if she wanted. The trial uses extra chemicals to piggy back on the chemo drug to try and improve its efficacy. However, even if Liz enters the trial there is no guarantee she will get the ‘extra’ drugs as the patients are randomly selected. The outcome of the tests will not be worse than the basic chemo drug by itself.
There are however a few extra issues to consider. The trial is based in Poole rather than Dorchester, so it is not so convenient, and some of the side effects are worse than with the drug that has been used so far. In particular, she will lose her hair at about 4 weeks.
The other issue relates to success rates. The chemo drug she has had for the past 9 weeks has a 50% success rate (into remission), the new drug is unfortunately less than this.
Liz has agreed to participate in the trial, although clearly she is not looking forward to the side effects.
However, before the treatment can begin she has to undergo further tests in Poole, including another CT Scan (her 9th I think) and blood tests to provide a benchmark for progress after the nine week course.
More importantly she has to go back into hospital for a few days (a.s.a.p.) to have the water drained from her stomach, and probably receive another blood transfusion as she is slightly anaemic. I am confident that once the 4/5 litres of water has been removed, Liz will feel much better and her appetite will probably improve.
The new course of treatment in Poole will not commence until the water has been drained and she is well enough to cope with the chemo drugs etc.
Unfortunately the situation for Liz and all the family is not only stressful but very depressing. I believe the doctors are doing everything they can, but as with virtually all cancers it is a lottery as to whether a patient successfully responds to treatment. The consultant said the other day that the success rates vary from 90% down to 10% depending on a whole range of circumstances and the type of cancer.
All we can do is to take it day by day. Whenever the weather is nice and Liz is feeling well enough we go out for lunch and a drive, and often end up at a NT property for afternoon tea which is enjoyable and takes our minds off things for a few hours.
This weekend we are staying in a hotel in Guildford for three nights (it was originally booked for Christmas, but we had to cancel), and will be seeing Tim, Julian and their families and in particular our grandson and ‘nearly new’ grand daughter. Hopefully it will make a nice break for Liz, particularly as it’s Tim’s birthday on Saturday. The only problem is that we have to go to the doctors and the hospital on the way up to Guilford!
Liz has recently had some complimentary therapy (Reiki) organised through the Weldmar Cancer Care Trust, which she found pleasant and relaxing, and looks forward to having her nails polished and varnished regularly by a close friend. She also enjoys the facial which another friend does. We are investigating what other forms of therapy/relaxation might be appropriate/available.
I have at last (today) agreed in principle a sale of my Business Transfer Agency. This has become necessary in order that I can provide help, care and support for Liz. Hopefully the transaction will be completed by the end of May, which will enable us to spend more time together in the garden or just out and about depending on how Liz feels.
The continuing messages of support, offers of help and flowers continue to amaze Liz, who sends her love, thanks and best wishes to all her friends, family and relations.
Bye for now
Dick, Liz and Family
The next update will probably be in around 10/11 weeks at the end of the next three cycles of treatment, unless anything significant changes in the meantime.
Over the past 2 months or so Liz has had three cycles of chemotherapy each lasting three weeks.
Only one day was needed in hospital at the start of each cycle. This was followed by two weeks of chemo tablets at home, with a week’s recovery period before the next cycle.
Apart from tingling fingers for the first few days of treatment, the first two cycles were not too difficult for Liz. She felt tired towards the end of each cycle, and had to keep away from people with infections in her ‘low period’ when her blood count was at its lowest.
She did have a difficult few days in the middle of the second cycle when her breathing became very difficult. She had to go to A & E for tests, and was admitted for a few days whilst they checked her over. They could not identify the cause as being directly linked to the chemotherapy, but thought it was probably due to a combination of factors including stress and anxiety.
They carried out another CT Scan of her lungs to check on the blood clots that were present back in December, and to see if the cancer had spread or had created new clots. Everything was very positive, the original clots had been re-absorbed by her body, and there were no new blot clots and no sign of the cancer having spread. Following the stay in hospital her breathing improved significantly.
The third cycle was much more difficult as the cumulative effect of the chemotherapy took hold. At the beginning of the second week she became extremely tired and slept/dozed most of the day. It was very difficult for her to do anything at all, and even if she tried to read a book she would fall asleep. She has spent most of the time over the past three weeks in the conservatory.
At the same time her appetite became very ‘iffy’ and would change by the day: generally she would only eat very small portions or nothing at all.
One of the main problems that Liz has had to cope with is a ‘bloated/extended’ stomach, which has been getting progressively worse over the past 5/6 weeks. She has been taking tablets to help with the wind, and we knew that there was some retention of water. Last weekend I checked her weight, and found that she had put on 6/7 lbs in the previous 7/8 weeks. We concluded that it must be due to water retention which we now know is not a good sign.
Another problem that Liz has to put up with is the daily injection I give her (into her stomach) every day to stop blot clots. Unfortunately she has not been allowed to go back on to Warfarin because of the chemo drugs and the cancer. However a new drug (same effect as Warfarin) in tablet form has just been licenced by the government, initially for use with hip and knee replacement patients. I have asked the consultant if he can obtain the new drug privately to save Liz having the injection each day, as it will not be available on NHS until it gets approval for wider use.
Her consultant wanted to review the chemo treatment after three cycles and make any adjustments before starting on the next three cycles. He organised a major CT scan and some blood tests last week ready for the review meeting this week (Tuesday 4.15pm).
Both Liz & I were very apprehensive about the meeting as you can imagine. Unfortunately we were right to be as it was far from encouraging.
The chemotherapy treatment had not worked. The tumours were had not changed in size or number, they were virtually the same as the benchmark scan taken just before she started the treatment 10 weeks ago in early February. It goes without saying that Liz was and is devastated. The only consolation was that the scans indicated that the liver, spleen and pancreas were all ok. i.e. no spread of cancer.
In view of the lack of progress, the consultant said there was no point continuing with the treatment as it would not be beneficial. He then outlined another chemotherapy treatment programme which he intended to use, and also outlined a European wide ‘trial’ in which she could participate if she wanted. The trial uses extra chemicals to piggy back on the chemo drug to try and improve its efficacy. However, even if Liz enters the trial there is no guarantee she will get the ‘extra’ drugs as the patients are randomly selected. The outcome of the tests will not be worse than the basic chemo drug by itself.
There are however a few extra issues to consider. The trial is based in Poole rather than Dorchester, so it is not so convenient, and some of the side effects are worse than with the drug that has been used so far. In particular, she will lose her hair at about 4 weeks.
The other issue relates to success rates. The chemo drug she has had for the past 9 weeks has a 50% success rate (into remission), the new drug is unfortunately less than this.
Liz has agreed to participate in the trial, although clearly she is not looking forward to the side effects.
However, before the treatment can begin she has to undergo further tests in Poole, including another CT Scan (her 9th I think) and blood tests to provide a benchmark for progress after the nine week course.
More importantly she has to go back into hospital for a few days (a.s.a.p.) to have the water drained from her stomach, and probably receive another blood transfusion as she is slightly anaemic. I am confident that once the 4/5 litres of water has been removed, Liz will feel much better and her appetite will probably improve.
The new course of treatment in Poole will not commence until the water has been drained and she is well enough to cope with the chemo drugs etc.
Unfortunately the situation for Liz and all the family is not only stressful but very depressing. I believe the doctors are doing everything they can, but as with virtually all cancers it is a lottery as to whether a patient successfully responds to treatment. The consultant said the other day that the success rates vary from 90% down to 10% depending on a whole range of circumstances and the type of cancer.
All we can do is to take it day by day. Whenever the weather is nice and Liz is feeling well enough we go out for lunch and a drive, and often end up at a NT property for afternoon tea which is enjoyable and takes our minds off things for a few hours.
This weekend we are staying in a hotel in Guildford for three nights (it was originally booked for Christmas, but we had to cancel), and will be seeing Tim, Julian and their families and in particular our grandson and ‘nearly new’ grand daughter. Hopefully it will make a nice break for Liz, particularly as it’s Tim’s birthday on Saturday. The only problem is that we have to go to the doctors and the hospital on the way up to Guilford!
Liz has recently had some complimentary therapy (Reiki) organised through the Weldmar Cancer Care Trust, which she found pleasant and relaxing, and looks forward to having her nails polished and varnished regularly by a close friend. She also enjoys the facial which another friend does. We are investigating what other forms of therapy/relaxation might be appropriate/available.
I have at last (today) agreed in principle a sale of my Business Transfer Agency. This has become necessary in order that I can provide help, care and support for Liz. Hopefully the transaction will be completed by the end of May, which will enable us to spend more time together in the garden or just out and about depending on how Liz feels.
The continuing messages of support, offers of help and flowers continue to amaze Liz, who sends her love, thanks and best wishes to all her friends, family and relations.
Bye for now
Dick, Liz and Family
The next update will probably be in around 10/11 weeks at the end of the next three cycles of treatment, unless anything significant changes in the meantime.
Update 7 - 18th February 2008
Hi everyone
We have had a busy week.
Last weekend we managed to get away to Hope Cove in South Devon (near Salcombe & Kingsbridge) for 3 nights at our favourite little hotel, which had just re-opened following its winter close down. It was full! It has about 20 rooms in all. We had a sea view room with a balcony looking down to the beach and little harbour. It has been in the same family for many many years and has recently been taken over by the younger generation. We had dinner (5 courses) B & B at a very reasonable rate because it was February. It is quite traditional, very friendly and well located. In fact a little bit old fashioned! 4 guests went swimming in the sea Sunday morning!!
On our way down we went across Dartmoor which was very pleasant. On Saturday we went to Plymouth, walked around the old harbour, and up on to the Hoe in wonderful weather. We ended up on a conducted tour of the Plymouth Gin distillery, which has been on the same site (originally a monastery) since 1793, and was the place where the Pilgrim Fathers stayed before setting off for the New World. It’s interesting to note that in common with all Gin Distilleries in the UK, they are not allowed to manufacture the neat alcohol on site. They (along with Gordon’s and most others!) obtain their neat, flavourless alcohol from a distillery in Greenwich, South London. It is delivered by tanker, and they just add and distil all the (secret recipe) herbs and flavours to make their unique high proof premium gin. They even send the finished product back to Essex for bottling in the same tanker that brought the neat alcohol down from Greenwich!
During the weekend we went to a wonderful National Trust Garden (Overbecks) that had just opened for the season. It had several enormous 100 year old Magnolia trees which were well in flower. The gardens were high up on the cliffs overlooking the estuary and Salcombe.
We also strolled around Kingsbridge, Totnes and Dartmouth, where we saw the world’s largest privately owned yacht, EOS. It has recently been completed in Germany and is undergoing trials before moving to the Mediterranean. I think it was 320 ft long, with 3 masts each of around 250ft, a crew of 22 and berths for 60 guests! All very secretive about the owner.
On our way home we stopped off in Axminster, just to have a look at Hugh Fearnley-Whittingstall’s new organic shop and restaurant. Unfortunately it was 5.30 pm and the shop was closed, but interesting to see style, layout and prices through the window. It will be interesting to see if it is eventually successful financially.
Back to reality on Tuesday. Liz had a canula fitted (for dye) prior to having a CT scan done of her stomach, to act as a benchmark against the chemotherapy treatment. She was also informed that she needed another blood transfusion later in the week. Following the scan I had an hour long meeting with her oncologist (by myself) to discuss a wide range of issues relating to diet, treatment and other matters.
On Wednesday I took Liz to Weymouth for a hair and nail appointment, to enable her look her best for the start of the chemotherapy treatment.
On Thursday (9.00am) she attended the chemotherapy suite where the first cycle of treatment commenced with a blood test and then 3 hours of drips into yet another canula in her wrist. This all went ok.
On Friday she had to have a blood transfusion (two units) as she was still quite anaemic. This started at 9.00am and finished at 2.00pm. Again no real problems.
She now has quite an array of tablets to take for the first 5 days to stop nausea etc. I still have to give her an injection of Clexane (Warfarin replacement) every morning and she also has to take 4 chemotherapy tablets each morning and evening for the next two weeks. She has to avoid contact with possible infections for about 5/6 days in the middle of the three week cycle as her immune system will be at its lowest, and as a consequence her resistance to infection will be very low. After about 10/12 days her resistance will increase again and should be back to normal by the time the second cycle of treatment begins.
In total she is to initially have 4 cycles of treatment (12 weeks) after which it will be reviewed.
The only side effect of the chemotherapy treatment so far is strong tingling in her mouth, and on her fingers and toes if she comes into contact withanything cold. This means she must not open the fridge, mustn’t drink cold water or other drinks, and try not to touch anything cold. Anything from the fridge must be left for a while to allow the temperature to rise before she touches it. There are many other potential side effects but hopefully they will not become a problem, although it is still early days.
Liz had a quiet day on Saturday just going out for a drive in the bright Dorset countryside, with Tim (who is down for the weekend) and I.
Yesterday we went to Kingston Lacey House & Gardens (National Trust, Wimborne) to see the wonderful display of Snowdrops and Daffs, following which we went to Stourhead (also National Trust) strolled around the lakes, and bought a rather special Llanhydrock (NT) Camelia. Both gardens were full to capacity with visitors because of the smashing weather. It really was a great day.
Providing there are no emergencies we now have nearly three weeks without visits to the GP or Hospital which is a major relief for both of us!
Unless anything untowards happens this will be the last update for a few weeks, at least until we have a progress report from the oncologist.
Bye for now and thanks as always for your words of support during this difficult time.
Dick, Liz & Family
We have had a busy week.
Last weekend we managed to get away to Hope Cove in South Devon (near Salcombe & Kingsbridge) for 3 nights at our favourite little hotel, which had just re-opened following its winter close down. It was full! It has about 20 rooms in all. We had a sea view room with a balcony looking down to the beach and little harbour. It has been in the same family for many many years and has recently been taken over by the younger generation. We had dinner (5 courses) B & B at a very reasonable rate because it was February. It is quite traditional, very friendly and well located. In fact a little bit old fashioned! 4 guests went swimming in the sea Sunday morning!!
On our way down we went across Dartmoor which was very pleasant. On Saturday we went to Plymouth, walked around the old harbour, and up on to the Hoe in wonderful weather. We ended up on a conducted tour of the Plymouth Gin distillery, which has been on the same site (originally a monastery) since 1793, and was the place where the Pilgrim Fathers stayed before setting off for the New World. It’s interesting to note that in common with all Gin Distilleries in the UK, they are not allowed to manufacture the neat alcohol on site. They (along with Gordon’s and most others!) obtain their neat, flavourless alcohol from a distillery in Greenwich, South London. It is delivered by tanker, and they just add and distil all the (secret recipe) herbs and flavours to make their unique high proof premium gin. They even send the finished product back to Essex for bottling in the same tanker that brought the neat alcohol down from Greenwich!
During the weekend we went to a wonderful National Trust Garden (Overbecks) that had just opened for the season. It had several enormous 100 year old Magnolia trees which were well in flower. The gardens were high up on the cliffs overlooking the estuary and Salcombe.
We also strolled around Kingsbridge, Totnes and Dartmouth, where we saw the world’s largest privately owned yacht, EOS. It has recently been completed in Germany and is undergoing trials before moving to the Mediterranean. I think it was 320 ft long, with 3 masts each of around 250ft, a crew of 22 and berths for 60 guests! All very secretive about the owner.
On our way home we stopped off in Axminster, just to have a look at Hugh Fearnley-Whittingstall’s new organic shop and restaurant. Unfortunately it was 5.30 pm and the shop was closed, but interesting to see style, layout and prices through the window. It will be interesting to see if it is eventually successful financially.
Back to reality on Tuesday. Liz had a canula fitted (for dye) prior to having a CT scan done of her stomach, to act as a benchmark against the chemotherapy treatment. She was also informed that she needed another blood transfusion later in the week. Following the scan I had an hour long meeting with her oncologist (by myself) to discuss a wide range of issues relating to diet, treatment and other matters.
On Wednesday I took Liz to Weymouth for a hair and nail appointment, to enable her look her best for the start of the chemotherapy treatment.
On Thursday (9.00am) she attended the chemotherapy suite where the first cycle of treatment commenced with a blood test and then 3 hours of drips into yet another canula in her wrist. This all went ok.
On Friday she had to have a blood transfusion (two units) as she was still quite anaemic. This started at 9.00am and finished at 2.00pm. Again no real problems.
She now has quite an array of tablets to take for the first 5 days to stop nausea etc. I still have to give her an injection of Clexane (Warfarin replacement) every morning and she also has to take 4 chemotherapy tablets each morning and evening for the next two weeks. She has to avoid contact with possible infections for about 5/6 days in the middle of the three week cycle as her immune system will be at its lowest, and as a consequence her resistance to infection will be very low. After about 10/12 days her resistance will increase again and should be back to normal by the time the second cycle of treatment begins.
In total she is to initially have 4 cycles of treatment (12 weeks) after which it will be reviewed.
The only side effect of the chemotherapy treatment so far is strong tingling in her mouth, and on her fingers and toes if she comes into contact withanything cold. This means she must not open the fridge, mustn’t drink cold water or other drinks, and try not to touch anything cold. Anything from the fridge must be left for a while to allow the temperature to rise before she touches it. There are many other potential side effects but hopefully they will not become a problem, although it is still early days.
Liz had a quiet day on Saturday just going out for a drive in the bright Dorset countryside, with Tim (who is down for the weekend) and I.
Yesterday we went to Kingston Lacey House & Gardens (National Trust, Wimborne) to see the wonderful display of Snowdrops and Daffs, following which we went to Stourhead (also National Trust) strolled around the lakes, and bought a rather special Llanhydrock (NT) Camelia. Both gardens were full to capacity with visitors because of the smashing weather. It really was a great day.
Providing there are no emergencies we now have nearly three weeks without visits to the GP or Hospital which is a major relief for both of us!
Unless anything untowards happens this will be the last update for a few weeks, at least until we have a progress report from the oncologist.
Bye for now and thanks as always for your words of support during this difficult time.
Dick, Liz & Family
Update 6 - 7th February 2008
Evening All
It has been a busy couple of days.
After completing a week on a low fibre diet (the complete opposite of what we normally eat!), and a day with virtually nothing apart from an egg and some consommé, Liz finally had the colonoscopy yesterday (Wednesday) morning.
Technically it went very smoothly and only took around 15 minutes. It was not as unpleasant as Liz had feared.
It was also successful in as much as it confirmed that she had bowel cancer. Under the circumstances it was the best result, as the oncologist now knows exactly what he is dealing with, and the success rate will be higher than if they had not found bowel cancer, as it would have been classified as an ‘unknown’ cancer and the treatment not so accurate.
The downfall in the procedure was that they also confirmed that the tumour is in danger of causing a blockage of the colon, until the chemotherapy kicks in. As a consequence she has to eat little and often, plenty of fluids and keep to a relatively fibre free diet for the time being.
Liz has not felt very well today as the low fibre diet and the colonoscopy unwind themselves. Hopefully she will feel better on Friday.
Today we had a meeting programmed with the Oncologist for 4.00pm (originally). This was brought forward until 3.40pm and subsequently to 3.15pm. We arrived at just after 3.00pm but due to emergency appointments being slotted in were not seen until gone 4.30pm. Not a very pleasant way to spend an hour and a half on your wedding anniversary, waiting to be told about the chemotherapy programme and what might or might not happen during and after the treatment.
The Oncologist outlined the programme which will initially be made up of 4 x 3 week sessions. The chemo infusion will take place on the first day of each session and will take about 3-4 hours in total. This will be complimented with tablets for the first two weeks of the session, to counteract some of the side effects, which should not be a major problem. To Liz’s relief it is unlikely that she will lose her hair!
She has to have another CT scan next Tuesday in order to create a benchmark against which future scans can be compared to see how successful the treatment is. She will also be having regular blood tests to check on various things including anaemia. If she does become anaemic she will have to have further blood transfusions (please make sure that if you are not already a blood donor you become one as soon as possible…..Liz may need YOUR blood!).
The aim of the chemotherapy is to shrink or kill off as many cancer cells as possible and get Liz into remission without delay. However, the Oncologist pointed out that he could not give any guarantees.
So we now have dates for the commencement of the first three cycles, (Feb14th, March 6th and March 27th) following which they will review progress and adjust the treatment accordingly. In the meantime he said she should do whatever she would normally do, and providing we are reasonably close to a hospital it was okay to go away for short breaks either in the UK or abroad, between the 3 weekly chemo sessions.
We have therefore decided, that as long as Liz feels well enough in the morning we are going away tomorrow for a long weekend at our favourite little hotel in South Devon. It fits well, as it’s the end of the diagnostic phase (two months) and the beginning of the treatment, and it’s also our 38th Wedding Anniversary (Doesn’t time fly when you are busy and enjoying yourself!).
This will probably be the last update for a while until we get well into the chemo programme.
As ever thanks for your own updates and words of support, they are greatly appreciated by both of us.
Bye for now
Dick & Liz
It has been a busy couple of days.
After completing a week on a low fibre diet (the complete opposite of what we normally eat!), and a day with virtually nothing apart from an egg and some consommé, Liz finally had the colonoscopy yesterday (Wednesday) morning.
Technically it went very smoothly and only took around 15 minutes. It was not as unpleasant as Liz had feared.
It was also successful in as much as it confirmed that she had bowel cancer. Under the circumstances it was the best result, as the oncologist now knows exactly what he is dealing with, and the success rate will be higher than if they had not found bowel cancer, as it would have been classified as an ‘unknown’ cancer and the treatment not so accurate.
The downfall in the procedure was that they also confirmed that the tumour is in danger of causing a blockage of the colon, until the chemotherapy kicks in. As a consequence she has to eat little and often, plenty of fluids and keep to a relatively fibre free diet for the time being.
Liz has not felt very well today as the low fibre diet and the colonoscopy unwind themselves. Hopefully she will feel better on Friday.
Today we had a meeting programmed with the Oncologist for 4.00pm (originally). This was brought forward until 3.40pm and subsequently to 3.15pm. We arrived at just after 3.00pm but due to emergency appointments being slotted in were not seen until gone 4.30pm. Not a very pleasant way to spend an hour and a half on your wedding anniversary, waiting to be told about the chemotherapy programme and what might or might not happen during and after the treatment.
The Oncologist outlined the programme which will initially be made up of 4 x 3 week sessions. The chemo infusion will take place on the first day of each session and will take about 3-4 hours in total. This will be complimented with tablets for the first two weeks of the session, to counteract some of the side effects, which should not be a major problem. To Liz’s relief it is unlikely that she will lose her hair!
She has to have another CT scan next Tuesday in order to create a benchmark against which future scans can be compared to see how successful the treatment is. She will also be having regular blood tests to check on various things including anaemia. If she does become anaemic she will have to have further blood transfusions (please make sure that if you are not already a blood donor you become one as soon as possible…..Liz may need YOUR blood!).
The aim of the chemotherapy is to shrink or kill off as many cancer cells as possible and get Liz into remission without delay. However, the Oncologist pointed out that he could not give any guarantees.
So we now have dates for the commencement of the first three cycles, (Feb14th, March 6th and March 27th) following which they will review progress and adjust the treatment accordingly. In the meantime he said she should do whatever she would normally do, and providing we are reasonably close to a hospital it was okay to go away for short breaks either in the UK or abroad, between the 3 weekly chemo sessions.
We have therefore decided, that as long as Liz feels well enough in the morning we are going away tomorrow for a long weekend at our favourite little hotel in South Devon. It fits well, as it’s the end of the diagnostic phase (two months) and the beginning of the treatment, and it’s also our 38th Wedding Anniversary (Doesn’t time fly when you are busy and enjoying yourself!).
This will probably be the last update for a while until we get well into the chemo programme.
As ever thanks for your own updates and words of support, they are greatly appreciated by both of us.
Bye for now
Dick & Liz
Update 5 - 1st February 2008
Hi
As you all know Liz had a biopsy taken form her cancer last week to try and ascertain the exact type of cancer, in order that the Oncologist could prescribe the most appropriate course of chemotherapy.
The results came back late on Tuesday. Liz’s GP telephoned at 7.0pm to request a meeting, but also outlined the findings. Cancer was confirmed, but the exact type was unclear, although it strongly pointed to Bowel Cancer.
He also confirmed that the specialists treating her at DCH wanted to have a Colonoscopy carried out to try and ascertain the site of the primary cancer. The Colonoscopy was to be organised as quickly as possible.
After seeing the GP on Wednesday morning he said he thought the Colonoscopy would not be until week commencing 4th Feb as Liz’s stomach needed to be ‘prepared’ by way of a diet before the investigation.
We heard nothing during the day, but I chased my hospital contacts to provide us with a date.
Thursday morning we heard from the hospital that the first available date was 12th Feb. At this point I blew my top, and told them that it was totally unacceptable, particularly after all the previous delays. We told them that if Dorchester Hospital was unable to do it any sooner, then they should try all the surrounding hospitals such as Poole, Yeovil, Exeter or Taunton and as a last resort the local Nuffield Hospital as a private patient.
Our GP was by now also putting pressure on the Consultant, as was Tim (number two son), who coincidentally was working in Roehampton Hospital at the time. Tim managed to get the Consultant to investigate the possibility of having it done privately at the local Nuffield Hospital, but being paid for by the NHS Trust.
Eventually after an hour or two the pressure from all sides won through, and the Colonoscopy was confirmed for Wednesday 6th Feb at 9.30 am. For practical (diet) reasons it could not be done any earlier. Liz is now on the special diet.
Late yesterday afternoon we had our first appointment with the Oncologist who was extremely pleasant, talked very slowly, and explained in detail the current situation and the way forward.
He explained that the cancer had spread from the primary site, and that it was in-operable. However, he was fairly confident that it was Bowel cancer which he could treat with Chemotherapy, but unfortunately he could not completely cure it i.e. it will come back. His plan was to hopefully get Liz into remission using 2 x 9 week courses of Chemotherapy. Another CT scan would be done around the time when the chemotherapy was started (as a benchmark), and then another one taken at 9 weeks to check on progress. If necessary the treatment could be modified depending on the results so far.
The consultant also explained that there could be three different outcomes to the Colonoscopy.
1. The colonoscopy failed or could not be completed due to technical reasons (each persons bowel is shaped differently and may have extreme bends in it)
2. The site of the primary cancer is located in the bowel which is what is expected (Cancer then classified as Bowel Cancer)
3. No primary source is detected (Cancer then classified & treated as Unknown)
In 1 & 3 the chemotherapy treatment will be less accurate because they do not know the exact source, which is actually quite a common occurrence. The success rate is not generally as good as if they know the source.
The consultant knows that we have asked for a second opinion from the Royal Marsden Hospital in London, and confirmed that under the circumstances he would do the same. We expect to hear from the RM with their appraisal next week.
The consultant also made the point that because the cancer had spread, had been there for a number of months, and was only growing slowly, there was no desperate urgency to start the chemotherapy, as the outcome would be the same. If we wanted to take further advice or get further opinions, then that was not a problem. However, he made the point that bowel cancer was very well understood, as was the treatment, and this had also been confirmed in a telephone discussion with the Royal Marsden. They confirmed that the treatment nationally was pretty universal, and that the RM rarely disagreed with the local hospitals’ diagnosis and treatment.
At the moment the plan going forward is as follows:
1. Special diet for next 5 days
2. Colonoscopy at 9.30am on Wednesday 6th
3. Appointment with Oncologist again at 4.00pm on Thursday 7th to discuss results of colonoscopy, and explain in more detail about the chemotherapy
4. Chemotherapy course to commence week-commencing 11th Feb
5. CT scan done as benchmark week commencing 11th Feb
In the meantime I am being given some training to allow me to give Liz an injection in her stomach, every day for at least the next 5 months. This is in place of Warfarin which in Liz’s case cannot be used with the chemotherapy. At the moment we are making a 20 mile round trip to the doctor’s surgery every morning to have the injection as it is too difficult for the district nurse to come to us each day, and it would also keep us housebound until they came. It would also mean that we could not go away for the weekend or for a holiday. So Liz is going to have to allow me to make a pin cushion out of her stomach (not easy as she hates needles, injections or blood at any time!)
So I now have a syringe and an orange to play with over the weekend!
Liz is obviously very depressed and concerned about what lies ahead, but is generally much happier now that she can focus on treatment rather than investigation. It is now almost two months since she first went to her GP with chest/cough symptoms. She has already endured more than most people do in a lifetime.
From now on we are taking it a day at a time, and will need to re-assess our future, however long that might be.
As always thanks for you kind words of support, offers of help, flowers, plants, chocolates and cards they really are appreciated by Liz (and me!)
More plants and chocolates have just arrived whilst I have been writing this! You are so very kind.
Next update at the end of next week when colonoscopy done and chemotherapy plan in place.
Bye for now
Dick & Liz
As you all know Liz had a biopsy taken form her cancer last week to try and ascertain the exact type of cancer, in order that the Oncologist could prescribe the most appropriate course of chemotherapy.
The results came back late on Tuesday. Liz’s GP telephoned at 7.0pm to request a meeting, but also outlined the findings. Cancer was confirmed, but the exact type was unclear, although it strongly pointed to Bowel Cancer.
He also confirmed that the specialists treating her at DCH wanted to have a Colonoscopy carried out to try and ascertain the site of the primary cancer. The Colonoscopy was to be organised as quickly as possible.
After seeing the GP on Wednesday morning he said he thought the Colonoscopy would not be until week commencing 4th Feb as Liz’s stomach needed to be ‘prepared’ by way of a diet before the investigation.
We heard nothing during the day, but I chased my hospital contacts to provide us with a date.
Thursday morning we heard from the hospital that the first available date was 12th Feb. At this point I blew my top, and told them that it was totally unacceptable, particularly after all the previous delays. We told them that if Dorchester Hospital was unable to do it any sooner, then they should try all the surrounding hospitals such as Poole, Yeovil, Exeter or Taunton and as a last resort the local Nuffield Hospital as a private patient.
Our GP was by now also putting pressure on the Consultant, as was Tim (number two son), who coincidentally was working in Roehampton Hospital at the time. Tim managed to get the Consultant to investigate the possibility of having it done privately at the local Nuffield Hospital, but being paid for by the NHS Trust.
Eventually after an hour or two the pressure from all sides won through, and the Colonoscopy was confirmed for Wednesday 6th Feb at 9.30 am. For practical (diet) reasons it could not be done any earlier. Liz is now on the special diet.
Late yesterday afternoon we had our first appointment with the Oncologist who was extremely pleasant, talked very slowly, and explained in detail the current situation and the way forward.
He explained that the cancer had spread from the primary site, and that it was in-operable. However, he was fairly confident that it was Bowel cancer which he could treat with Chemotherapy, but unfortunately he could not completely cure it i.e. it will come back. His plan was to hopefully get Liz into remission using 2 x 9 week courses of Chemotherapy. Another CT scan would be done around the time when the chemotherapy was started (as a benchmark), and then another one taken at 9 weeks to check on progress. If necessary the treatment could be modified depending on the results so far.
The consultant also explained that there could be three different outcomes to the Colonoscopy.
1. The colonoscopy failed or could not be completed due to technical reasons (each persons bowel is shaped differently and may have extreme bends in it)
2. The site of the primary cancer is located in the bowel which is what is expected (Cancer then classified as Bowel Cancer)
3. No primary source is detected (Cancer then classified & treated as Unknown)
In 1 & 3 the chemotherapy treatment will be less accurate because they do not know the exact source, which is actually quite a common occurrence. The success rate is not generally as good as if they know the source.
The consultant knows that we have asked for a second opinion from the Royal Marsden Hospital in London, and confirmed that under the circumstances he would do the same. We expect to hear from the RM with their appraisal next week.
The consultant also made the point that because the cancer had spread, had been there for a number of months, and was only growing slowly, there was no desperate urgency to start the chemotherapy, as the outcome would be the same. If we wanted to take further advice or get further opinions, then that was not a problem. However, he made the point that bowel cancer was very well understood, as was the treatment, and this had also been confirmed in a telephone discussion with the Royal Marsden. They confirmed that the treatment nationally was pretty universal, and that the RM rarely disagreed with the local hospitals’ diagnosis and treatment.
At the moment the plan going forward is as follows:
1. Special diet for next 5 days
2. Colonoscopy at 9.30am on Wednesday 6th
3. Appointment with Oncologist again at 4.00pm on Thursday 7th to discuss results of colonoscopy, and explain in more detail about the chemotherapy
4. Chemotherapy course to commence week-commencing 11th Feb
5. CT scan done as benchmark week commencing 11th Feb
In the meantime I am being given some training to allow me to give Liz an injection in her stomach, every day for at least the next 5 months. This is in place of Warfarin which in Liz’s case cannot be used with the chemotherapy. At the moment we are making a 20 mile round trip to the doctor’s surgery every morning to have the injection as it is too difficult for the district nurse to come to us each day, and it would also keep us housebound until they came. It would also mean that we could not go away for the weekend or for a holiday. So Liz is going to have to allow me to make a pin cushion out of her stomach (not easy as she hates needles, injections or blood at any time!)
So I now have a syringe and an orange to play with over the weekend!
Liz is obviously very depressed and concerned about what lies ahead, but is generally much happier now that she can focus on treatment rather than investigation. It is now almost two months since she first went to her GP with chest/cough symptoms. She has already endured more than most people do in a lifetime.
From now on we are taking it a day at a time, and will need to re-assess our future, however long that might be.
As always thanks for you kind words of support, offers of help, flowers, plants, chocolates and cards they really are appreciated by Liz (and me!)
More plants and chocolates have just arrived whilst I have been writing this! You are so very kind.
Next update at the end of next week when colonoscopy done and chemotherapy plan in place.
Bye for now
Dick & Liz
Update 4 - 24th January 2008
Hi everyone
Just a brief update on how things went today.
It didn’t start off too well. We had to contact the hospital at 8.00am in order to check if they had a bed available for Liz for the day but after about two hours they decided that they didn’t have a bed, and the plan was changed!
I took Liz into the Flebology department (Draculas Den!) to give a sample of blood. This had to be tested to ensure that she was fully off Warfarin, and that it was safe for her to have the Laperoptomy (keyhole surgery) to obtain the samples for the Biopsy tests. That was at 10.30.
Because there was no bed for her, we had to waste a few hours until 1.45pm when she had to report back to the CT scan department for the Laperoptomy under a CT scan.
Julian came down from Guildford late last night, so the three of us went to Sherborne for a couple of hours to try and keep Liz’s mind off the afternoon.
Understandably Liz was very frightened by the thought of them inserting a long needle into her abdomen without anaesthetic. I would have been as well!
I waited for Liz just outside the room. The procedure took about half an hour in all, during which time Liz could see the monitor and the needle! One of the nurses also pointed out the tumour where the sample was being taken from. It is just above her pelvis on the right hand side. They took three tissue samples and sent them off for analysis immediately.
I was a little concerned when Liz told me she had be shown the tumour(s) on the screen, but in retrospect it might actually be beneficial, as she now has a clear focus of what she has to fight. I think and hope the experience will in fact be more positive than negative.
As it turned out everything went well, apart from the fact they couldn’t initially find her notes as she had not come from a ward! Afterwards I spoke briefly to one of the nurses who confirmed that everything had gone according to plan.
Shortly afterwards she was taken to a medical ward (surprise, surprise, a bed had been empty all day!) where she will stay overnight for observation and to make sure she doesn’t bleed.
One of the Consultant’s team came to see her within the hour just to check on things and make sure she had the appropriate medication over night. We managed to get a sandwich and a bar of chocolate for her before the restaurant closed, as she had not been allowed to eat or drink since first thing in the morning.
She looked very pale just before the procedure, due I think to anxiety, but when we left her at 5.00pm her colour had returned and she was much brighter.
Providing there are no hitches over night we should be able to bring her home mid morning (Friday).
Now unfortunately, we have a long seven day wait until we see the Oncologist next Thursday, when he will have seen the biopsy results and tell her specifically what course of chemotherapy he is planning. It is going to be a long and difficult week for Liz and the family.
Tomorrow we are meeting with Cancer Care Dorset, who will explain what support they can give if and when required.
As always thanks for your continued offers of help and support, it really does mean a lot to Liz, me and the family. Thank you.
Dick
Just a brief update on how things went today.
It didn’t start off too well. We had to contact the hospital at 8.00am in order to check if they had a bed available for Liz for the day but after about two hours they decided that they didn’t have a bed, and the plan was changed!
I took Liz into the Flebology department (Draculas Den!) to give a sample of blood. This had to be tested to ensure that she was fully off Warfarin, and that it was safe for her to have the Laperoptomy (keyhole surgery) to obtain the samples for the Biopsy tests. That was at 10.30.
Because there was no bed for her, we had to waste a few hours until 1.45pm when she had to report back to the CT scan department for the Laperoptomy under a CT scan.
Julian came down from Guildford late last night, so the three of us went to Sherborne for a couple of hours to try and keep Liz’s mind off the afternoon.
Understandably Liz was very frightened by the thought of them inserting a long needle into her abdomen without anaesthetic. I would have been as well!
I waited for Liz just outside the room. The procedure took about half an hour in all, during which time Liz could see the monitor and the needle! One of the nurses also pointed out the tumour where the sample was being taken from. It is just above her pelvis on the right hand side. They took three tissue samples and sent them off for analysis immediately.
I was a little concerned when Liz told me she had be shown the tumour(s) on the screen, but in retrospect it might actually be beneficial, as she now has a clear focus of what she has to fight. I think and hope the experience will in fact be more positive than negative.
As it turned out everything went well, apart from the fact they couldn’t initially find her notes as she had not come from a ward! Afterwards I spoke briefly to one of the nurses who confirmed that everything had gone according to plan.
Shortly afterwards she was taken to a medical ward (surprise, surprise, a bed had been empty all day!) where she will stay overnight for observation and to make sure she doesn’t bleed.
One of the Consultant’s team came to see her within the hour just to check on things and make sure she had the appropriate medication over night. We managed to get a sandwich and a bar of chocolate for her before the restaurant closed, as she had not been allowed to eat or drink since first thing in the morning.
She looked very pale just before the procedure, due I think to anxiety, but when we left her at 5.00pm her colour had returned and she was much brighter.
Providing there are no hitches over night we should be able to bring her home mid morning (Friday).
Now unfortunately, we have a long seven day wait until we see the Oncologist next Thursday, when he will have seen the biopsy results and tell her specifically what course of chemotherapy he is planning. It is going to be a long and difficult week for Liz and the family.
Tomorrow we are meeting with Cancer Care Dorset, who will explain what support they can give if and when required.
As always thanks for your continued offers of help and support, it really does mean a lot to Liz, me and the family. Thank you.
Dick
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