Sunday, 8 March 2015

Regular update??? Aye right!

Well dear readers, it seems that I do regularly blog -- on a once a year basis!! Did I really think I would do better when I started? Yes I did. Then life took over. Today was the anniversary of Tom and I meeting for the first time. Can't really believe it was eleven years ago, and yet 7th March 2004 seems like another life altogether. I say I celebrated, because although I reminded Tom of the date and the occasion, he is so much in his own world that he doesn't seem interested in anything much that goes on around him. It's been a very difficult week. It seems that suddenly it's so much harder for him to remember recent events, and find the words to express himself. He's also very shaky when he walks and of course doesn't want to use walking cane or frame, so he's staggering around the house, and staying in the car at lot when we do venture out. Having cancer must be overwhelming. It's overwhelming enough for the caregiver, especially when the person believes he doesn't need care! The medical profession needs to hear what it is like to be told that you have a disease with no cure and for which there is NO successful treatment. Yes they tell you about radiation and chemotherapy of many types, but when you know that these treatments are going to knock the stuffing out of you and make you feel like crap, then the cancer just keeps going, how can you 'stay positive'? I hear 'hang in there' on a regular basis and I know everyone means well, and I am hanging in, but watching the person you love have such a huge personality change and suffer is heartbreaking. Tom was so loving, kind and considerate. Now he sometimes doesn't even notice me in the room, or pushes me away and tells me how he hates when I hover around him. I know it's "the tumour talking" but it still hurts. Since June 11 2013, he's fought this horrific thing, He's tried to ignore it. He's tried to have a normal life. He was so unhappy when he had to stop working and teaching. He's told everyone so often that he's "fine" but how can you possibly be fine after two brain surgeries and so many drugs pumped into you that your veins can hardly take a needle any more? We've been attending Barnes Jewish and Siteman Cancer Center in St Louis since May 2014 and they have been first class. Surgery was successful and Tom fought hard to recover as fast as he could. There's a trial for doxorubicin and so Tom signs up. It means more detailed MRIs and more trips to St Louis, but if it works it's worth that effort. Monday 18 August 2014: After 5 of the 6 Doxorubicin treatments, the MRI shows regrowth and Dr Campian advises that there is no point in continuing this treatment as it's not working. Tom's case goes back to the tumour board to see what's next. We wait to hear from them, beginning to think he's been forgotten, until he's called in for an appointment on 28 August 2014 Carmustine (BiCNU) will now be given every sixth week and Avastin every second week. Steroids are given to help with the swelling but decreasing over the weeks. Avastin is supposed to be wonderful. We've had two MRIs which show no progress in the spread of cancer, but Tom's quality of life is going downhill. I read that you should try to remember you may not be able to control the tumour, but you can control how you live. I tell Tom that his stubborn nature keeps him going and remind him it's positively called 'determination'. He used to laugh at that, but he doesn't laugh much these days. I can only try to make our life together as stress free and relaxed as I can. Sometimes it's impossible. Life doesn't deliver what you expect or what you want. Is there really a reason for everything that happens? What is the reason for glioblastoma? A whole army of people pray for us and send positive thoughts. I like to believe that it all helps. At least I know we have supporters who love and care for us. I am grateful for that. I am grateful for what we have and I will keep the focus on what we can do rather than what's no longer possible.

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