My last posting was for my benefit, not for yours. It helped me get my head around this whole thing, but really it was just a list of events. So I thought why not get some musings down. So here they are:-
Surprisingly enough I am not overly sad despite the bombshell. I've had a good life. There have been struggles, good times, bad times and all the times in between, no different to those of you reading this. I have a wonderful family - make that 2 wonderful families - that I am so proud of, and the most wonderful, loving wife any man could ask for. So I have no reason to complain about my life. I'm not a great believer in hindsight, and even now when I look back on my life there are very few things I would change.
The chances of my getting onto a trial seem quite remote, and for the first time since all this started I have felt intimations of mortality. I have checked my body very carefully and I can't find an expiry date anywhere, but every ache and pain, every cough and every change in mood is now forensically dissected. Is it Horace and Co., or is it just me. I hope this passes because I don't have time to spend worrying about things out of my control.
Now, this may be too much information for some of you, but it is not meant to offend. Tina and I have always been very "physical", but for past year this has been lacking, mainly due to my physical condition, but also because emotionally it just wouldn't have been "right". Despite this (or perhaps because of this) I still feel we have grown closer and closer. Talking has replaced action, a goodnight cuddle has become so precious, and random unsolicited hugs are an absolute joy. To sit side by side on the sofa in the evenings holding hands fills me with such a deep sense of contentment and well-being that it is relatively easy to forget everything else for a while. We still have our "Smith & Jones" chats in the kitchen, and I don't think we are ever closer than this, both of us really showing our deepest emotions.
I still try hard to look forward rather than back, and my current "goal" is to reach Christmas in a relatively good state. Before that, Jason and Katie are coming over from the Isle of Man to see us, and last night I took the family out for a meal, 5 kids and their partners/wives, and our 2 grandchildren, Olivia and Isaac. It was wonderful to have them all at the table with us.
I now have a vast array of medical personnel looking after me; out-patient at Oncology, out-patient at the hospice, GP, District Nurses, Lung Nurses, and very soon a Macmillan Nurse. I guess I'll be seeing more and more of these people as time goes on. But for now, allowing for the shortness of breath and lack of energy, I am feeling relatively well, and intend to stay this way as long as possible.
I'll finish now by once again thanking my family and friends for all the love and support you've given me on this advenure. I love you all.
Saturday 21 September 2013
Tuesday 10 September 2013
One year on
This time last year I was diagnosed with a prognosis of an average 6 months survival without any treatment, and here I still am. It's almost three months since my last blog, so a quick update on events since then.
My birthday, my first target, came and went and I became an Old Age Pensioner. We had a short but wonderful break to Morecambe, where I became very friendly with the night porter at the hotel. This is mainly because I was up every morning around 4am, so I'd make myself a coffee and go down, sit outside and watch the sunrise over the bay. Tina was left in peace to sleep.
I started the Taxotere on Monday, 8th July, having had a PICC Line fitted, making it a lot easier to get blood samples and to have the chemo administered. This was very much a "suck it and see" option, because I can't be biopsied. A biopsy would show whether or not I have various gene mutations, which would give an indication as to how likely the Taxotere is to have any effect. So we went into this "blind", and hoping for the best. Thinking about it, that could be the story of my life! Because of this Tina became more agitated. I wish I could have taken it away from her, but all I could do was be here for her, hold her and love her.
Things were just a bit "flat" then. My diabetes was out of control, and I was retaining fluid due to steroids. One result of all this was that I was a lot "weaker". Really, all I did was walk the dogs, and it's hard to explain how much pleasure this still gives me. Luckily greyhounds are really lazy dogs, and don't need a lot of exercise, so I can cope, but I do feel it's getting harder, and I need to stop more during the walk. I push myself, because I feel that if I can no longer walk them it will be a definite sign of deterioration.
The chemo hit me hard. A couple of days after treatment I felt really rough from the chemo, as though I had a ball of wind in my stomach, I was much more tired and going back to bed during the day, I had a horrible metallic taste in my mouth ruining the taste of food and drink. I was much more irritable, and poor Tina was trying so hard to help, but couldn't really. After a couple of really bad days I started to improve. We'd also had workmen in at this time, and Tina had not been a happy bunny, because the house had been, in her eyes, a mess. We were now putting it back to rights We needed two new curtain rails putting up, and I had a major melt down because I couldn't managed it. Floods of tears and a hissy fit later, our neighbour, Gary, came in and fitted them in about 10 minutes flat, which was so good of him, but didn't exactly improve my mood!
We visited my son, Jason, and his partner, Katie in the Isle of Man just prior to my second chemo cycle and had a wonderful time on this beautiful island.
The second cycle of chemo brought the same side effects, and neuropathy, which is numbness in fingers and toes. It only affected my left hand little finger, so did not cause any real problems. I realise that this has probably sounded a little "down", but as usual, through it all, there was love and laughter and the unwavering support of my beautiful Tina. Third cycle of chemo was no different, and I was scanned a week prior to the fourth cycle.
Yesterday we went for chemo, but went straight in with the oncologist, not my oncologist (on holiday) but one we'd never met before. He eventually gave us the news that the Taxotere hadn't had any effect, and that the metasteses had grown. Because of this I didn't get the chemo (no real point!) and the prognosis is an average of 3 to 6 months. This is the end of any conventional cancer treatment. From here on it will merely be symptom management. There will be a multidisciplinary team meeting today when my case will be one of those discussed, and the possibility of clinical trials will be investigated. So we await a phone call tomorrow for the answers.
As you can imagine, Tina and I were in a spin for the rest of the day... tears, brave smiles.... more tears. I think that I have accepted this less easily than I accepted the original prognosis because there is no "safety net" now, no next line treatment. This DOES NOT mean I'm giving in. I will continue to fight Horace and his bastard progeny every way I can. My first target now is Xmas/New Year, then we'll see where we go.
My birthday, my first target, came and went and I became an Old Age Pensioner. We had a short but wonderful break to Morecambe, where I became very friendly with the night porter at the hotel. This is mainly because I was up every morning around 4am, so I'd make myself a coffee and go down, sit outside and watch the sunrise over the bay. Tina was left in peace to sleep.
I started the Taxotere on Monday, 8th July, having had a PICC Line fitted, making it a lot easier to get blood samples and to have the chemo administered. This was very much a "suck it and see" option, because I can't be biopsied. A biopsy would show whether or not I have various gene mutations, which would give an indication as to how likely the Taxotere is to have any effect. So we went into this "blind", and hoping for the best. Thinking about it, that could be the story of my life! Because of this Tina became more agitated. I wish I could have taken it away from her, but all I could do was be here for her, hold her and love her.
Things were just a bit "flat" then. My diabetes was out of control, and I was retaining fluid due to steroids. One result of all this was that I was a lot "weaker". Really, all I did was walk the dogs, and it's hard to explain how much pleasure this still gives me. Luckily greyhounds are really lazy dogs, and don't need a lot of exercise, so I can cope, but I do feel it's getting harder, and I need to stop more during the walk. I push myself, because I feel that if I can no longer walk them it will be a definite sign of deterioration.
The chemo hit me hard. A couple of days after treatment I felt really rough from the chemo, as though I had a ball of wind in my stomach, I was much more tired and going back to bed during the day, I had a horrible metallic taste in my mouth ruining the taste of food and drink. I was much more irritable, and poor Tina was trying so hard to help, but couldn't really. After a couple of really bad days I started to improve. We'd also had workmen in at this time, and Tina had not been a happy bunny, because the house had been, in her eyes, a mess. We were now putting it back to rights We needed two new curtain rails putting up, and I had a major melt down because I couldn't managed it. Floods of tears and a hissy fit later, our neighbour, Gary, came in and fitted them in about 10 minutes flat, which was so good of him, but didn't exactly improve my mood!
We visited my son, Jason, and his partner, Katie in the Isle of Man just prior to my second chemo cycle and had a wonderful time on this beautiful island.
The second cycle of chemo brought the same side effects, and neuropathy, which is numbness in fingers and toes. It only affected my left hand little finger, so did not cause any real problems. I realise that this has probably sounded a little "down", but as usual, through it all, there was love and laughter and the unwavering support of my beautiful Tina. Third cycle of chemo was no different, and I was scanned a week prior to the fourth cycle.
Yesterday we went for chemo, but went straight in with the oncologist, not my oncologist (on holiday) but one we'd never met before. He eventually gave us the news that the Taxotere hadn't had any effect, and that the metasteses had grown. Because of this I didn't get the chemo (no real point!) and the prognosis is an average of 3 to 6 months. This is the end of any conventional cancer treatment. From here on it will merely be symptom management. There will be a multidisciplinary team meeting today when my case will be one of those discussed, and the possibility of clinical trials will be investigated. So we await a phone call tomorrow for the answers.
As you can imagine, Tina and I were in a spin for the rest of the day... tears, brave smiles.... more tears. I think that I have accepted this less easily than I accepted the original prognosis because there is no "safety net" now, no next line treatment. This DOES NOT mean I'm giving in. I will continue to fight Horace and his bastard progeny every way I can. My first target now is Xmas/New Year, then we'll see where we go.
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