I am not sure if I will post this entry, perhaps I will just keep it in draft form, but I want to write it anyway as it helps me think and rationalise my situation, and in some way this may be a record of my thoughts and feelings that Poppy and Holly can at some time in the future access and help them understand this time in our lives.
Today was a difficult day on many fronts.
Firstly the doctors information was not good at all, in reality they found the disease has beaten the AVBD chemo and got outside the radiotherapy zone pretty quickly, so that some of it missed the radiation. Having "escaped" it has grown aggressively, not passively, the new main tumour is already half the size of the original, now dead tumour, and the disease has spread to multiple other nodes. My consultant, the very competent Dr Yulle, who previously was a very positive and cheerful person, was almost depressed, because if the field had been a bit wider she might have got it, but we took those decisions together and I spent a lot of the time in the consultation telling her I understood the risks, and the percentages and we could not have foreseen this outcome, in fact looking at the charts with her she would have missed even with the higher field.
The key thing is the radiation missed, the disease beat the chemo, and we really have to go after it now with all guns blazing. I think she hoped that it would be in one place, and she could get it with radiotherapy, and save the day, but I could see today that the negative consequences of that would be too high, and the technical complexity did not look good, and even then it may jump to the next nodes, so I would be back to the same position in six months time, which even I would find a bit tedious.
One thing that was helpful was that Lee was with me this time, in the past I have gone myself but she wanted to understand this more serious situation in a greater depth, so we went together, I got her to drive the Aston Martin over so that she would get used to driving it, which seemed to work well. As we walked down the road afterwards we were both a bit upset, understandably, and we were talking about the doctor and the different type of lymph cells when she stopped the conversation and said "this is not helping is it?" and I said "no" so she stopped me analysing gave me a big hug and helped me switch focused on how to manage and cope with the path forward. This was another example for me of how personal coping strategy's are, and how difficult it is for Lee, who has to cope with equally significant emotional challenges. My way (like in this blog) is to focus on what needs to get done, no regrets, no feeling of unfairness, no complaining about the doctors, no what if, no if only - because selfishly that is what works for me - but its not what works for other people necessarily. So I need to be careful of that and be supportive of Lee and other family members so that their needs for coping are also met so that they do not have to take too much of the strain.
This evening was a really tough one, the kids had their school Christmas concert, for their school this means taking over the Usher hall for the night, one of the main concert venues for the city, and they put on a fantastic show. The three of us went out for an Italian dinner while Lee was battling her way back from a meeting in Glasgow, half way through the starters Holly asked "Dad did you say your cancer was back?" so that was the opening I needed, we had a great chat about how it was back, which I had told them a few weeks ago in a low key way, and how I would need to get some more different chemo to sort it out. I told them that type of chemo would need some time in hospital, and it would take until about Easter, as before they both seemed fine with that and we got down to eating our pizzas before going to the show.
The show however hit a nerve, when 400 kids including Poppy and Holly started to sing "have your self a very merry Christmas..." I was standing the the middle of this thankfully dark concert hall, with tears coming to my eyes (Lees as well), I hope no one noticed, but even now it brings a lump to my throat. The thing is that if I think about the possibility of missing the kids grow older I feel really sad because I think, perhaps we all think, that I could help them a lot to find their place in the world and I would like to see them be happy. So that is going to be part of my new motivation strategy - Christmas with Lee, Poppy and Holly, next year, then one year at a time for hopefully a long time after that.
So I need to start to build up the reserves of strength that I will need for this next fight, getting fit physically is part of it, diet is part of it (but being moderate as we do not want to stimulate the cancer to grow faster), but most of it is getting my fighting head on mentally so I can get myself prepared for the worst, in a kind of "bring it on" mentality, then when I feel bad in the middle of the chemo, but I can still smile or make a joke (which I have never been any good at so maybe that's not a good part of the plan) then each smile will be a victory and a part of the path to recovery. It was this type of attitude that helped me through the previous chemo and I skipped before one chemo with bad results, so this mental strength is what I need to build up next. This evening when I came out of the concert I had a number of messages from family and friends but I did not feel up to answering them, perhaps tomorrow I will get it back together.
So this was not one of my upbeat posts, my old friend Brid once said I was a bit like Pollyanna, which I think meant so optimistic that it was not real, and to some extent I do not want to dump on the readers of this blog, quite a few of whom are colleagues as well as family members. But tonight I think it is OK to say this hurts, and its not easy, and it is the mortal dilemma that we all face as part of being human, we only have a short time on the stage of life and we never know when it will end. I could have all this trouble and be fine, while someone like Brids husband Cameron died in his early 40's with no warning at all. Its just random numbers.
So this is a late night blog, perhaps a dark night blog would be a better title, its been a difficult day for me and that's OK, its OK for some days to be difficult and for some songs to cause us to leak a bit in these circumstances.
However I was in a cafe, just after the hospital, and I phoned Mum to tell her the news - she was as always a rock of support, as she has always been since she would sit by my bed until I woke up after every operations I had after my accident that I can remember. I would always come round, often feeling very sick, and she would be there. She is a real hero of my lifes story. However as I finished the call the record changed and Van Morrison came on singing "sweet dreams of you, so real and so true.." I felt it was an omen and a good one at that.
I am an extrovert, I guess you can tell, and that means I get energy and strength from being open about my situation, I worry sometimes that this blog might be seem as a bit indulgent or attention seeking, I don't mean it that way, its just that typing this stuff out at night helps me get it "off my chest" and it saves me repeating the same story again and again to folks, or the phone ringing all the time for the same reason. In the end no one has to read it, and I do not expect anyone to read it, but for the next months I think I want to keep it as real as I have tried to do in the past, so I think I will probably post this blog rather than bury it in draft.
The good news is that I have been doing a bit of research on the up to date statistics on the treatment I will get next, and it is pretty good, and getting better by the year as the medical teams gain experience - 10 years ago this would be a much worse, like terminal, situation and it was this disease that killed my natural mother Pat in the 1960's despite the best efforts of her doctors. Today the success rate is very high, better than 60 percent including all the "last ditch" folks who are very ill before the treatment is attempted, so I have a great chance of getting through this, and when I do the disease free 10 year progression is back up in the 85 to 90 percentage - those are odds I can work with.
So today we have had some bad news, and leaked a bit, understandably, but this is a game we can play and win if I can get my "game head" on, so that is going to be my main focus from here on in, not work, or downsides, but winning the key game here. That will be my focus, along with smelling the roses, if you want to know what I mean listen to Coney Island by, of course, Van Morrision and remember I cycled along the roads he spoke of, in the sunshine of summer days when I was 15, on my granddad Malones old bike, painted yellow, sailed a dingy with my father on strangford loch and escaped to an island in the same place with my girlfriend when I was 18 so its a special place in the world, and in my heart.
To all of you, hug your children, listen to your partners, give your colleagues the benefit of genuine motivation and respect, don't honk your horn, wave instead, they probably just had a bad day, there is no time for trivial stuff, but stand up for what you believe to be true, as that is a measure of the weight of your personality, right or wrong, popular or unpopular.
Later blogs will look at how to get my head, fitness and diet together I think the first one is the most critical, for now let me sign off and please dont worry as a result of my directness, I will get a game head on, and we will beat this thing, but I hope it is OK to be honest about the bad days as well as the good days
Cheers
Gerry
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