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