There was a very real danger, for a while, that Fenella might be retired to more of an observer kind of role. I was really, really, close to chucking in the chemo and going completely along the alternative route. This has been one rollercoaster of a week but I think progress has been made. As you know, I went to see an Ayurvedic medical herbalist last week, and I have since been following an 80% green veg diet. Any meal I have, including breakfast, has to be 80% vegetables, the greener the better, and raw if possible. So I have been having a teeny bit of poached fish and a whole bag of organic spinach (steamed) for breakfast, and so it goes on through the day – and I have to say I feel really, really good. She also suggested a three week, seriously uncomfortable intense detox at an Ayurvedic hospital in India. Even this sounded preferable to continuing chemo with all its attendant discomfort, but fortunately some very good friends prevailed and suggested a) delaying any decision for a few days and b) having a proper conversation with my consultant (which we hadn’t yet had because it was all so rushed once I was diagnosed). So, much against my very cardinal instincts, we did both.
I phoned the hospital on Friday and managed to get squeezed in to see my consultant on the following Tuesday. I have to say that when you have cancer people move mountains to help you, for which I am eternally grateful. With my incredibly sick sense of humour I wonder whether that is because they are never quite sure how urgent the matter is, but, whatever, I love it! So we pitched up nice and early for our meeting and I was really nervous. As far as I was concerned I was telling him that I definitely WAS having a break from chemo and going off exploring all these other wonderful ways of getting well, plus IF I ever needed to come back I wanted to be able to have one of these new treatments that is being tested and is apparently a lot less toxic. I was ready to wage war. Kind of sweet really, and very slightly innocent round the edges.
He was running over half an hour late and had more patients after us, judging by the waiting room, yet greeted us with a lovely smile. We were ushered to a really comfy room with sofas, and nice blinds on the windows, which is really quite unusual for the NHS, but very comforting, and then he gave us nearly an hour of his time – and would have sat there as long as we needed it. His phone was going crazy on silent vibrate in his pocket, but he completely ignored it. I was so impressed. I knew he was lovely anyway, but this was exceptional. He listened very attentively to all we said. He knows about all of the treatments I mentioned. He also knows a lot about Ayurveda, being from India, and was very supportive of it. His biggest worry is that mantle cell lymphoma is so changeable and so aggressive that very few things kill it entirely, and it only takes one cell to remain for it all to kick off again. He was concerned that the Ayruveda wouldn’t get it all. After each treatment of chemo it morphs into another type of cancerous cell (something I have genetically apparently), which is why they have to cycle the chemo very aggressively in the beginning to reduce it bit by bit until it is all gone. Hopefully. Because of this I can’t take a break of a few months and go back to it – the cells will have adjusted to the treatment so far and will be resistant to it. I mentioned the other much less toxic drugs that are being trialed (which he also knew all about) and he said that they are still at stage 1 testing. They are being used on people who have relapsed and have no other choice – there is an outside chance they will survive, but otherwise they will either die from the cancer or from the drugs not working/being too strong, so he would not use them on me, but expects them to be on the market in 5 years.
We discussed the toxicity and side effects. He can change the medication I get for the side effects if necessary and the nursing staff keep a very close eye on the toxicity – the serious side effects don’t just appear in minutes so at the first sign of anything going wrong they stop the treatment and reassess what is going on. Thinking about it, they are always asking how you are feeling, so this must be why. However, the most important thing that came out of this part of the conversation is that he is more than happy for me to use Ayurveda alongside the chemo to achieve the best results if I choose to continue the treatment. This was the major thing that annoyed me while I was in the ward – that nobody would even consider talking about supplements, vitamins, whatever. It was almost fingers crossed behind their back, which is what in a sense drove me to seek alternative treatment. He said if I choose to continue with chemo and give him a list of the herbs I am taking he will check that there are no problems with them, but he doesn’t expect there to be any. Finally, I am listened to. Fabulous. I am so blessed to have him as my consultant.
So I was left with a different question from last week, one that is a lot more brutal. Either I continue with chemo, with all the things I am worried about but backed up by Ayurveda, homeopathy, oxygen therapy, sound healing, diet, etc., thereby having a lot of strong therapies on my side against the bad boys, or I just take the alternative route and rely on myself to find a way through this and burn my bridges with chemo. Bit of a no-brainer then. I had to face the stark reality that if I chose the alternative route I wouldn’t have any one person (who didn’t charge by the hour) on call and able to advise and treat me if necessary. I could come back from India and be ill for any number of reasons, and be completely alone. When you have a life-threatening illness that is not a good option.
Our chat with the consultant seemed to me to be offering the best of both worlds. I can throw the entire arsenal of Ayurveda AND chemo at the cancer cells and Ha! they shall die! So Fenella’s contract is safe and all the pink stuff comes out again as I go back in for cycle 3 on Monday, along with all my green food. Do you like the way I’m building up a colour scheme here? One of the really good things the consultant did was get inside my head. It is a really confusing place for me, so I don’t fancy anyone else’s chances, but he was right in there. The survival rate for this kind of cancer is now 60% at 5 years. It used to be slightly above zero. The reason it is only 5 years is because the drugs have only been used for that long (duh, thank you Judy for explaining that to me. I thought they were all dying at 5 years!). In reality, when the next report comes out they are expecting 7 years, then 10 years, then after that you are considered cured. I have to say that I am expecting to be in that 60% of course. He suggested that if I can put up with 6 months of pretty horrible treatment supported by whatever means I choose (less actually as I have already started) then at least I have the rest of my life to go off on detoxes, and he said he is expecting me to live to 80. You can’t believe how good that feels. When you look at it that way it is a whole lot more positive. Sprawled by a pool in somewhere wonderfully exotic is a lot more likely after this than a detox, I have to say, but the idea is the same.
When I look at the tumult that was the last week I am relieved to be where I am now. The diagnosis was such a shock that I launched into the chemo without having the space to think. For every moment I delayed I imagined more cancer cells powering through my body, then when the reality of the chemo hit home I rebelled against the toxicity and veered off in the opposite direction. I really needed to do this, and I am so grateful that I have Stephen and some very good friends to contain and support this totally nutty side of my personality. What has come out of it all is that I now feel I am making an informed decision about my treatment, and that I have a consultant who will allow me to embrace the best of both Eastern and Western medicine to beat the cancer. I feel more empowered than I could have imagined and can even feel positive about the chemo that will be coursing through my veins come Monday. I have decided to call it ‘happy juice’ instead of poison and toxins because in the end I will be happy and well, and I WILL be lying by that pool :-)
How exhausting. I really feel for all my friends who support me through this. There is going to be such a party in the summer…..
Just to wring a bit more emotion out of it all, I have been reading more of Thich Naht Hanh’s book ‘Fear’ (see Book Blog for more info). It is the kind of book you read just a few pages at a time because you want to go off and practise what he is teaching. I was talking to Stephen about the latest little segment and about how by being in the present moment there is no past and no future, and suddenly the floodgates opened. He is quite used to this with me so he just stayed really calm and asked what happened. I had suddenly realized, mid-sentence, that by living in the present I was freeing myself from the past, and the immense release of that brought on the tears. How many of us carry around the past as some massive rucksack, that most of the time we don’t even realize we are humping around? Freed of the past, who are we?
That’s it for now…there will be more soon as I have to reconnect with Dot and explain why her fridge is full of my food, and I know you will want to hear about that. But for now, trust me, the future is very, very pink.