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.