I spent the morning trying to tidy up some paperwork, and organise the van with Simon to go and collect the bed frame and chair in Coventry at the weekend.
My head was spinning really, a bit overwhelmed by all the things to do. It was nice not to be picking up tools though. I felt pretty exhausted.
I got through to Romney, Ffiona’s sister-in-law who is the radiologist at the Royal Marsden. We had a good talk about where the process with Treliske was at, and she thought that the reputation of the oncology unit was good and she knew one of the main radiologist there. She assured me that of all cancers to have Hodgkins was the one! We discussed waiting times for testing and it’s clear that things happen quicker up there, but we also talked about where home is and where treatment would work best. It was good to talk it all through with her.
Jane McL came over with lunch and a book called the cancer directory for me which she bought on Amazon. We had a nice lunch sitting at the table on the mezzanine under the the skylights in the sun. She wanted to talk about treatment and what I knew about it, and whether I really wanted to do it. It’s good to be asked these questions. The cancer directory book by Dr Rosie Daniel is a guide to integrated cancer medicine. It looks like there’s a lot of useful information in there. And might be the guide through the minefield or swamp of potential alternative or supportive medicines.
We both dozed after lunch for a bit. After Jane left I got on with a few tidying up tasks. And I did a bit of gardening in the sunshine, mending the fence and some trelliswork tying up the clematis which seem to have miraculously recovered, and planting some seed potatoes, digging some weeds. The garden is looking nice, but I need to move all these rubble bags from the building works!
Nigel S called from London, and we had a rather strange conversation. He’s obviously upset about what happening to me. He, Ruth and Lev had stayed here in January for Nigel’s 50th birthday. I’d found the visit quite a strain as I didn’t feel terribly well, and was irritated by Lev as he seemed rather spoilt. I haven’t spoken to Nigel since, so maybe that was part of the awkwardness. But Nigel could hardly speak, he seemed choked. It’s hard handling these conversations and other peoples emotions.
My MacMillan nurse Caz called back around 4 o’clock and we had a good conversation about where the process had got to. They have got the preliminary results from the biopsy, which confirm 100% that I have Hodgkin’s lymphoma. This is a good result. She also knew that I was due for my PET/CT scan on Friday, and she thought the results would be available by Wednesday next week. I explained the problems I’ve had and the delay involved in communicating with the PET scan people, and she was quite annoyed about it and said she’d follow it up.
We then went on to talk about the consultation with Dr Kruger which needs to happen next week, once the PET scan results are out. We also talked about the clinical trial for the new Hodgkin’s drug called Brentuximab. I confirmed that I was keen to participate. She then explained some more about trial and what it might mean in terms of treatment and assessment, such as more frequent scans. In the course of this explanation she revealed that by entering the trial there was only a 5050 chance of actually receiving the drug, due to a process called randomisation. This was news to me, and rather devastating blow.
At my meeting a month ago with Dr Kruger and Caz, it was explained that the oncology department at Treliske was part of the trial of the new drug, and that I could participate in that trial if I wished. I stated that of course I would. Dr Kruger explained a little about the drug and how it worked and was very animated and excited about its potential. I followed his explanation with interest, and was reassured to think that I would be receiving the most advanced treatment. Krueger explained that Brentuximab was the greatest advance in treatment for Hodgkin’s in some 30 years, that I would be entered into a trial for the using it, but no mention had been made of the Randomisation process, which effectively makes a sort of Russian roulette out of my health care. I voiced my concerns briefly to Caz on the telephone, and said that not receiving the drug would be a blow, and that I would need to talk to her about alternatives at that point. She explained that this was the only way that Brentuximab was available, and that one would have to go to the United States to receive the drug as part of a treatment outside the trial.
Well, our conversation continued onto the practicalities of next week; meetings with Dr Kruger to be set up, and the possibility of starting treatment on Monday 5th May, and because of the May bank holiday the need to check into hospital on the Sunday.
As you can imagine, this conversation has given me very mixed feelings. I kept on gardening for a while trying to keep calm. But actually the news that it was only 50-50 that I might receive the latest treatment is quite devastating. I feel misled, and am now in a state of anxiety which I didn’t have before. The offer to be part of the clinical trial has been a big part of my feeling of assurance that my treatment with the Treliske oncology team would be first class. And this knowledge has been an important part of my emotional and mental support system over the last month, and I’ve communicated my positivity about this widely to my family and friends. To now face the uncertainty of the randomisation gamble in a weeks time is extremely disturbing to my sense of balance. I think it was careless and mismanaged not to mention the randomisation process at the start. Dr Kruger should have made this clear right at the beginning; it would have been a matter of 10 seconds explanation and my whole understanding and approach to the oncoming treatment would have been very different. Instead, his enthusiasm for the new drug and its effectiveness perhaps overtook him and I as the patient now feel rather messed about and messed up.
I remember reading about the nonavailability of drugs for HIV sufferers in the 90s here in the UK. People died because drugs that had been accepted in the United States for use were not released here in time. It feels a bit like that with these cancer drugs. What a disappointment.
Of course I might be one of the lucky ones and be given the new drug. It’s a pure gamble 50-50. But what am I going to feel if I don’t get it? To receive standard treatment, the usual 4 chemical cocktail of carpet bombing chemo drugs, is not going to make me feel good, not a good start to 6 months treatment program. My understanding of the effectiveness of Brentuximab is twofold – one that it is cell specific and targets Lymphoma cells and leaving other body cells alone, and to that by substituting the new drug for one of the other cocktail drugs it reduces the impact and side effects on the body and thus makes recovery from the chemotherapy easier.
To not receive the drug would be a major blow, and would make accepting the ill effects of Chemotherapy difficult for me. I’m going to feel like shit, and knowing that other people might be having a better experience because they are in the program will be just mind blowing. This is a bad start to the treatment program. If only the randomisation process had been explained to me at the beginning.
I spoke to Dad about it, and he was quite upset. I feel bad for having mentioned it but he wanted to know what was going on so I gave him the news. I also called Romney and left a message.
Anyway I’m writing this on Thursday of course, and much of this clarity has occurred to me over night, waking up at 4:30 and going over it. I had a calm evening with Alison who came over quite late but we stoked the wood burner in the empty bedroom and lit candles ceremoniously in the little candle niches and had a very nice supper with Milly snoring quietly by the fire
Ok it’s late afternoon and everything has changed. Caz my MacMillan nurse called just after I wrote the above and explained that Dr Kruger would like to see me today with the aim of starting treatment next Tuesday. Wow! Rapid movement suddenly! I reshuffled things in my head. Yes, I could do it. Lots to do but possible. I didn’t mention my concerns but did print out my diary sheets to give them copies of.
Bank for cash… Phone calls…packing bag for today and tomorrow in hospital…
Romney calls and this is very helpful as she explains more about the clinical trial and importantly about the effectiveness of the standard treatment programme and the unknown side effect issues of the new drug. I’m much relieved.
Teresa arrives on time and we go to Chapel house to meet Susan. Nick joins us there and we get the tour. It’s all looking exciting and S is great. I have to leave them to catch the train to Truro after 1/2 hr but they’re happy. I’m sorry to miss the lunch at Tremenhere…
Spend the afternoon with Dr Kruger, Caz, Siobhan and the haematology team. A new CT scan, ECG check, weighed and measured, blood tests and filling in consent forms. Dr K explains the chemo process which I record and he’s happy with that. Dad will enjoy listening to it! Talk diets with Caz who says keep it simple eat healthy and plenty. She’s not keen on the alkaline diet thing. But rhubarb grapefruit and green tea are out each side of chemo sessions!
I’m out by 5pm and catch the train to Liskeard where Dad will meet me…