It's been a couple of months since my last blog, and to be honest everything has been rather humdrum. I guess the biggest thing in our lives at the moment is trying to sell the house. It's been on the market for a couple of years, but at a high price. We didn't have to sell, so I was quite happy just sitting and waiting. However, we decided about 12 months ago to really try to sell it, so dropped the price to the minimum we'll accept. Since then we have "sold" it three times, and each time it has fallen through. Bummer!
We had a slight leak from the immersion heater (it was slowly corroding) which came through onto the kitchen ceiling. Had a patch of ceiling replaced, which stands out like a sore thumb. So I have decided to paint the ceiling, which is he biggest thing I've done since diagnosis. Made a start today, and will carry on tomorrow. I can't tell you how good it feels to be doing something "normal".
On the cancer front, I am now on my 4th oncologist since diagnosis. The biggest metastasis has grown by 0.3mm, which I suppose is not too bad. I have also been told by this oncologist that, when the growth is more aggressive, I may be able to have another chemo treatment, which is absolutely contrary to what I was told by the previous two doctors. Surprising doesn't cover this! Overall I haven't been too bad physically, apart from one patch where I had real trouble with shortness of breath. Luckily, this only lasted a couple of days. I will be scanned, and see the oncologist again in February.
I have lost some friends over the past month or so, people in a FB lung cancer support group I belong to. Each one of these is a tragedy, but the loss of my beautiful friend Carm Hicks really affected me deeply. RIP Carm.
I try to "ignore" the cancer as much as possible, but it can't be done. Even on the best of days it is omnipresent. To say it takes over your life is an understatement; it dictates virtually everything you do (or don't do!). When I see the effect it has on my darling Tina, I am distraught. The toll this is taking on her is heavy, and she has been so brave in coping with it that I am humbled. This bastard thing takes no prisoners, especially among your loved ones.
So, Christmas is coming and I am in real trouble! You see, last year I thought that it might be my last one, and, because of this, I spent so much time carefully selecting presents for Tina. How do I follow that? Right at this moment I have absolutely no idea. Christmas is very much Tina's time. Last year was quite subdued, so we have decided to go all out this year, with all the decorations up, and to celebrate as much as we are able. I am really looking forward to celebrating another one with Tina.
Thanks again for reading this, and, in case I don't post again before Xmas, Merry Xmas to you and your families. I wish you all you would wish yourselves.
Thursday 21 November 2013
Saturday 21 September 2013
Just to clear the air.
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.
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.
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.
Friday 21 June 2013
Last, but not least
This will be the last "regular" update to this blog. I feel I've now poured it all out, and I'm very conscious that it could easily descend into pathos. I will probably post again, but only as and when.
So, this one is devoted to one subject only.... my beautiful darling Tina. Believe me, this will be by far the hardest to write.
Where to start? We had "met" on the internet...... yes folks, an internet romance! We chatted, without going into too many personal details, for a while, and eventually arranged to meet. Tina had left her husband and was living in Wrexham, and I met her in a pub car park. I was standing by my car when she walked round the corner. I saw her because I was looking at every female who came past, and immediately carried on looking for someone else. Then she stopped and looked round and then looked at me, and I thought "No way, it can't be her!" She sort of smiled, I sort of smiled, and she walked over, and we said hello. She was so beautiful, so ethereal, that I can't begin to describe my thoughts.
We went for a walk in a local park, and right from the off we were comfortable with each other, chatting as if this was just a normal everyday chat between good friends. We sat for ages, and then it was time to go. Tina didn't want me to take her back, so I was walking her back to the pub, and we stopped by a tall wooden fence and kissed. Tina was leaning back against the fence, and when the kiss ended we just looked at each other. It was then I noticed that the fence had been painted with anti-vandal paint, and this was now all over the back of her top! Mills & Boon eat your hearts out! What made it even better was that I was totally mortified, and she just laughed.
I knew from the very start that Tina was what I wanted, and luckily she felt the same. So here we are 12 years later, just coming up to our 10th wedding anniversary. I can honestly say this time with Tina has been the happiest of my life. We are not perfect, but I think we are perfect together. We haven't had any real arguments, mainly because she has me twisted round her little finger, and can "persuade" me into most things.
So when our world was turned upside down last September, and all our plans went out of the window, how did we cope? Tina did not take it well. Despite my oncologist making it very clear that any treatment was palliative only, she was looking for a cure. It has taken her a fair while to realise that a "cure" = a miracle, possible I guess, but highly unlikely. But she has worked through this in her own way, and I am so proud of the way she handled it.
From the start she appointed herself my carer, and woe betide anyone or anything she perceived as not being good for me. In this phase she could have disposed of a pack of hungry wolves with no major problems; she was relentless. Gradually, over the months, she "relaxed" into her new role, and now she is my appointments secretary and alarm reminder with a dash of nurse thrown in.
A lot of people have told me how "brave" I am, how "well" I'm coping with this bastard disease. Well, let's get it straight once and for all. I am NOT brave! For me bravery means having a choice of actions, and choosing to do the right thing. I don't have a choice, I've got it so I have to deal with it. Coping "well", really what's the alternative? Curl up in a corner weeping and wailing and wait to die? No thanks. My beloved Tina is the brave one; she is the one who has had to learn to cope, and I couldn't be more proud of her. She has kept me strong, even in the worst periods; she has kept me sane when I've wavered; she has been by my side taking every step with me. Occasionally I will catch her unawares, and see the look of pain, or uncertainty, or stress on her lovely face. This is when I really, really hate this bloody cancer, for what it's doing to my beloved.
I have been so in love with Tina ever since we met, and I often told her "I couldn't love you any more than I do". But I was wrong. My love for her has deepened, become ever more special, and continues to grow. I don't think I've ever really understood the term "soul-mate" until the past nine months or so. But I know exactly what it means now.
So, this one is devoted to one subject only.... my beautiful darling Tina. Believe me, this will be by far the hardest to write.
Where to start? We had "met" on the internet...... yes folks, an internet romance! We chatted, without going into too many personal details, for a while, and eventually arranged to meet. Tina had left her husband and was living in Wrexham, and I met her in a pub car park. I was standing by my car when she walked round the corner. I saw her because I was looking at every female who came past, and immediately carried on looking for someone else. Then she stopped and looked round and then looked at me, and I thought "No way, it can't be her!" She sort of smiled, I sort of smiled, and she walked over, and we said hello. She was so beautiful, so ethereal, that I can't begin to describe my thoughts.
We went for a walk in a local park, and right from the off we were comfortable with each other, chatting as if this was just a normal everyday chat between good friends. We sat for ages, and then it was time to go. Tina didn't want me to take her back, so I was walking her back to the pub, and we stopped by a tall wooden fence and kissed. Tina was leaning back against the fence, and when the kiss ended we just looked at each other. It was then I noticed that the fence had been painted with anti-vandal paint, and this was now all over the back of her top! Mills & Boon eat your hearts out! What made it even better was that I was totally mortified, and she just laughed.
I knew from the very start that Tina was what I wanted, and luckily she felt the same. So here we are 12 years later, just coming up to our 10th wedding anniversary. I can honestly say this time with Tina has been the happiest of my life. We are not perfect, but I think we are perfect together. We haven't had any real arguments, mainly because she has me twisted round her little finger, and can "persuade" me into most things.
So when our world was turned upside down last September, and all our plans went out of the window, how did we cope? Tina did not take it well. Despite my oncologist making it very clear that any treatment was palliative only, she was looking for a cure. It has taken her a fair while to realise that a "cure" = a miracle, possible I guess, but highly unlikely. But she has worked through this in her own way, and I am so proud of the way she handled it.
From the start she appointed herself my carer, and woe betide anyone or anything she perceived as not being good for me. In this phase she could have disposed of a pack of hungry wolves with no major problems; she was relentless. Gradually, over the months, she "relaxed" into her new role, and now she is my appointments secretary and alarm reminder with a dash of nurse thrown in.
A lot of people have told me how "brave" I am, how "well" I'm coping with this bastard disease. Well, let's get it straight once and for all. I am NOT brave! For me bravery means having a choice of actions, and choosing to do the right thing. I don't have a choice, I've got it so I have to deal with it. Coping "well", really what's the alternative? Curl up in a corner weeping and wailing and wait to die? No thanks. My beloved Tina is the brave one; she is the one who has had to learn to cope, and I couldn't be more proud of her. She has kept me strong, even in the worst periods; she has kept me sane when I've wavered; she has been by my side taking every step with me. Occasionally I will catch her unawares, and see the look of pain, or uncertainty, or stress on her lovely face. This is when I really, really hate this bloody cancer, for what it's doing to my beloved.
I have been so in love with Tina ever since we met, and I often told her "I couldn't love you any more than I do". But I was wrong. My love for her has deepened, become ever more special, and continues to grow. I don't think I've ever really understood the term "soul-mate" until the past nine months or so. But I know exactly what it means now.
Thursday 20 June 2013
Last Chance Saloon
I've got a couple of free weeks now, and I see my oncologist again on July 1st. I should say here that my oncologist is everything a doctor should be....... he listens! He discusses and makes you feel totally part of the decision making. So when we decided to drop the Tarceva and go with IV chemo, I came away feeling, if not happy, at least knowing I had all the facts and had made the "right" decision.
This, however, is the final treatment for me, and obviously there is no knowing what effect, if any, it will have on Horace and his hangers-on. From then on in it will be symptom management only, or alternative therapies. I am starting to research these therapies, but it is a minefield. I have managed to establish that there aren't any based on alcohol though!!!! I will be treated with Taxotere, which is apparently very aggressive, and can have really bad side effects. We will see.
We are going away for a short break next week, which I'm really looking forward to. We finally settled on Morecambe, not too far to drive, and we can have a look at Lancaster and the Lakes while we are there.
The support Tina and I have received has been incredible. I have already mentioned the front line NHS staff, St Johns Hospice and Macmillan, but it goes so much farther than that. Our families and friends were obviously shocked at my diagnosis/prognosis, and they couldn't always hide it, but they have remained consistently cheerful and supportive right through. I am so glad they will be there for Tina.
Because this damn disease has affected my breathing, I am not as mobile as I used to be. Don't take that the wrong way, I am not a cripple! It just takes more effort, and expends more energy to do things. I know I upset Tina sometimes because I insist on doing things (on the other hand I have the world's best get out of jail card when I don't want to do something!). Because of this I spend more time a home, and I can usually be found in the kitchen on the laptop. Here, I find yet another support network. Friends whom I have never met, and probably never will, are always there. There are also two specialised "lung cancer groups" I contribute to, and they are invaluable, especially The Lung Cancer Survivors Foundation. To each and every one of you, professional or personal.....THANK YOU FOR JUST BEING THERE.
This, however, is the final treatment for me, and obviously there is no knowing what effect, if any, it will have on Horace and his hangers-on. From then on in it will be symptom management only, or alternative therapies. I am starting to research these therapies, but it is a minefield. I have managed to establish that there aren't any based on alcohol though!!!! I will be treated with Taxotere, which is apparently very aggressive, and can have really bad side effects. We will see.
We are going away for a short break next week, which I'm really looking forward to. We finally settled on Morecambe, not too far to drive, and we can have a look at Lancaster and the Lakes while we are there.
The support Tina and I have received has been incredible. I have already mentioned the front line NHS staff, St Johns Hospice and Macmillan, but it goes so much farther than that. Our families and friends were obviously shocked at my diagnosis/prognosis, and they couldn't always hide it, but they have remained consistently cheerful and supportive right through. I am so glad they will be there for Tina.
Because this damn disease has affected my breathing, I am not as mobile as I used to be. Don't take that the wrong way, I am not a cripple! It just takes more effort, and expends more energy to do things. I know I upset Tina sometimes because I insist on doing things (on the other hand I have the world's best get out of jail card when I don't want to do something!). Because of this I spend more time a home, and I can usually be found in the kitchen on the laptop. Here, I find yet another support network. Friends whom I have never met, and probably never will, are always there. There are also two specialised "lung cancer groups" I contribute to, and they are invaluable, especially The Lung Cancer Survivors Foundation. To each and every one of you, professional or personal.....THANK YOU FOR JUST BEING THERE.
Tuesday 18 June 2013
Musings on Life
To say that life changes after a serious cancer diagnosis may seem self-evident. I guess that most people affected by cancer will know that you don't get told "You've got six months" or " You have a year". First you have to fight to get any sort of prognosis, and then, when you do get one, it is always vague, couched in terms of averages. This is understandable from a medical point of view; every cancer is different, every one diagnosed is an individual, and it's likely that all the medical staff are wary of complaints. I know there are some people out there who don't want to know this sort of thing, and this is not a criticism of them, but this is the single most difficult thing for me to cope with.
I was given an original prognosis of an average of six months WITHOUT ANY TREATMENT. This has "moved" several times for me; with chemo/radiotherapy I was told maybe another 6 months; after the treatment, when Horace had shrunk, my oncologist was talking about "a couple of years down the line", and now we have the metastases to cope with, and everything is up in the air again. This "uncertainty" was, and is, hard for us to deal with.
Life from 18th September 2012 has become a series of goals. It briefly flitted through my mind "Will I see Christmas", but only very briefly. Then it became Tina's birthday, then my birthday at the end of this month (when I officially become a dirty old man and collect my Old Age Pension, finally getting some money out of this damn government!). I reckon I'll make this one! New goal - Christmas again. To paraphrase Bob the Builder, "Will we make it? YES, WE WILL!"
Of course, each milestone in your life becomes sharply poignant, because it may just be the last one. Choosing Christmas presents for Tina became a mission, they had to be just right. Tina's kids (another amazing source of support) organised a birthday party for her in April (No! I can't tell you how old she was, because she'll hit me!) and at this party, we renewed our wedding vows. We stood holding hands, with Tina digging her nails into my palm to stop me from losing it! I watched the video, and my bottom lip was quivering all the way through. Which leads me on to another change.
I've always been quite emotional, although it doesn't always show on the outside. Now I am positively hormonal, and tears come at the drop of a hat! I don't think I've been too hard to live with (although you'd really have to ask Tina). Even in this, we complement each other. I tend to downplay things (although I'm getting better at not doing this), so when a doctor/nurse asks "How have you been", I would always reply "I'm good" or "not too bad". Tina, on the other hand would tell it like it is.......... in detail! In our life she has taken on another role as my carer, and boy, does she care! There is no escape from her beady eye...........
I do however manage to escape from her clutches most days when I walk the hounds, the other great passion in my life. We have two ex-racing greyhounds which were rescued by The Retired Greyhound Trust. Boss, my big boy, is 10.5 years old, and Tilly, my little lady is 7.5 years old. They are my non-judgemental therapists, and when we stop for a rest on our walk, I talk to them non-stop about anything that's on my mind. I usually get back home a lot clearer headed than when I left.
Looking back, I have had a good life. Like most people, there are some things I would change, but overall I can't complain. I'm not perfect (just damn near!), and I hesitate to give advice, but consider this if you will.
You, as an individual, exist thanks to a series of chance happenings which make winning the lottery look like a sure fire, odds on, certainty. I'm not even going to mention the odds against Earth forming in the way it did to allow us to exist. Just think about two things. First, a certain arrangement of elements forms a certain collection of atoms, which combine in a certain way to become sperm and ova. One out of around 25 million spermatozoa fertilised an egg to produce YOU! What are the chances? Second, there have been eons when you, as an individual, did not exist. There will be eons after you die when things will go on without you. These periods of time are unimaginable, and in the great scheme of things, you are born, live your life and die in a flash.
So, having beaten all the odds to be here, and being here for such a short time, don't you think you should treasure every moment?
I was given an original prognosis of an average of six months WITHOUT ANY TREATMENT. This has "moved" several times for me; with chemo/radiotherapy I was told maybe another 6 months; after the treatment, when Horace had shrunk, my oncologist was talking about "a couple of years down the line", and now we have the metastases to cope with, and everything is up in the air again. This "uncertainty" was, and is, hard for us to deal with.
Life from 18th September 2012 has become a series of goals. It briefly flitted through my mind "Will I see Christmas", but only very briefly. Then it became Tina's birthday, then my birthday at the end of this month (when I officially become a dirty old man and collect my Old Age Pension, finally getting some money out of this damn government!). I reckon I'll make this one! New goal - Christmas again. To paraphrase Bob the Builder, "Will we make it? YES, WE WILL!"
Of course, each milestone in your life becomes sharply poignant, because it may just be the last one. Choosing Christmas presents for Tina became a mission, they had to be just right. Tina's kids (another amazing source of support) organised a birthday party for her in April (No! I can't tell you how old she was, because she'll hit me!) and at this party, we renewed our wedding vows. We stood holding hands, with Tina digging her nails into my palm to stop me from losing it! I watched the video, and my bottom lip was quivering all the way through. Which leads me on to another change.
I've always been quite emotional, although it doesn't always show on the outside. Now I am positively hormonal, and tears come at the drop of a hat! I don't think I've been too hard to live with (although you'd really have to ask Tina). Even in this, we complement each other. I tend to downplay things (although I'm getting better at not doing this), so when a doctor/nurse asks "How have you been", I would always reply "I'm good" or "not too bad". Tina, on the other hand would tell it like it is.......... in detail! In our life she has taken on another role as my carer, and boy, does she care! There is no escape from her beady eye...........
I do however manage to escape from her clutches most days when I walk the hounds, the other great passion in my life. We have two ex-racing greyhounds which were rescued by The Retired Greyhound Trust. Boss, my big boy, is 10.5 years old, and Tilly, my little lady is 7.5 years old. They are my non-judgemental therapists, and when we stop for a rest on our walk, I talk to them non-stop about anything that's on my mind. I usually get back home a lot clearer headed than when I left.
Looking back, I have had a good life. Like most people, there are some things I would change, but overall I can't complain. I'm not perfect (just damn near!), and I hesitate to give advice, but consider this if you will.
You, as an individual, exist thanks to a series of chance happenings which make winning the lottery look like a sure fire, odds on, certainty. I'm not even going to mention the odds against Earth forming in the way it did to allow us to exist. Just think about two things. First, a certain arrangement of elements forms a certain collection of atoms, which combine in a certain way to become sperm and ova. One out of around 25 million spermatozoa fertilised an egg to produce YOU! What are the chances? Second, there have been eons when you, as an individual, did not exist. There will be eons after you die when things will go on without you. These periods of time are unimaginable, and in the great scheme of things, you are born, live your life and die in a flash.
So, having beaten all the odds to be here, and being here for such a short time, don't you think you should treasure every moment?
Omens and Portents
Since starting Tarceva my breathing has worsened. I have had two episodes on consecutive nights where I have woken in the early hours fighting for breath, as opposed to struggling for breath. I wouldn't say it frightened me, but I will admit to being a tad worried! I told the District nurse this on her visit, and all hell broke loose!
She said she would contact my GP and sort out some inhalers, and also get me a nebuliser. After she'd left, Tina and I settled down for a quiet morning. An hour or so later there was a knock on the door, which Tina answered, and, lo and behold, there were two doctors from my practise to see me. Of course they totally ruined the effect by telling Tina they were here to see her dad!!! This may have made Tina feel good, but did nothing for me.
After a chat and an examination they agreed to give me a steroid inhaler and a broncho-dilator inhaler. Off they went, and we settled down again...... KNOCK! KNOCK! Another District Nurse with the nebuliser, but without any nebules. This meant a trip to the surgery and the pharmacy to get them. Finally, around 6pm a nurse from the Out of Hours service arrived to instruct me how to use the nebuliser and to ensure I had no ill effects from it.
All joking apart, it strikes me that this is the NHS at its best! I don't think the service I received could have been bettered anywhere.
The following day was my Day Centre day, and while I was there my lung nurse rang and spoke to Tina, who of course told her all that had happened. Within an hour she had rung back to tell me to stop taking the Tarceva, and later that day my oncologist's secretary rang to give me an appointment on Monday afternoon.
Based on my vast medical knowledge (I was brought up by a mum whose firm belief was that everything could be cured by a glass of boiled water every morning, or, for really serious things, a Beechams Powder!) I have deduced that one of two things is happening; it may be a side effect from the Tarceva, or it may be Horace and his kids kicking off. In addition to my breathing problems, I am again suffering with coughing up blood. This has happened on and off since chemo, and has a couple of times been bad enough to put me in A&E. We were hoping this had sorted itself out, but I started again yesterday, albeit at a greatly reduced level. We will hopefully find out more on Monday.
She said she would contact my GP and sort out some inhalers, and also get me a nebuliser. After she'd left, Tina and I settled down for a quiet morning. An hour or so later there was a knock on the door, which Tina answered, and, lo and behold, there were two doctors from my practise to see me. Of course they totally ruined the effect by telling Tina they were here to see her dad!!! This may have made Tina feel good, but did nothing for me.
After a chat and an examination they agreed to give me a steroid inhaler and a broncho-dilator inhaler. Off they went, and we settled down again...... KNOCK! KNOCK! Another District Nurse with the nebuliser, but without any nebules. This meant a trip to the surgery and the pharmacy to get them. Finally, around 6pm a nurse from the Out of Hours service arrived to instruct me how to use the nebuliser and to ensure I had no ill effects from it.
All joking apart, it strikes me that this is the NHS at its best! I don't think the service I received could have been bettered anywhere.
The following day was my Day Centre day, and while I was there my lung nurse rang and spoke to Tina, who of course told her all that had happened. Within an hour she had rung back to tell me to stop taking the Tarceva, and later that day my oncologist's secretary rang to give me an appointment on Monday afternoon.
Based on my vast medical knowledge (I was brought up by a mum whose firm belief was that everything could be cured by a glass of boiled water every morning, or, for really serious things, a Beechams Powder!) I have deduced that one of two things is happening; it may be a side effect from the Tarceva, or it may be Horace and his kids kicking off. In addition to my breathing problems, I am again suffering with coughing up blood. This has happened on and off since chemo, and has a couple of times been bad enough to put me in A&E. We were hoping this had sorted itself out, but I started again yesterday, albeit at a greatly reduced level. We will hopefully find out more on Monday.
Hospitality and Hospices
Following the diagnosis on 18th September, we were bombarded with information from a lot of different people. Consultant, Lung Nurse, Pre-Assessment Nurse, District Nurse, Macmillan and others. To be honest our heads were spinning; we just couldn't take all the information in. This was the start of the "Smith and Jones chats", where we tried to make some kind of sense of it all, and it was here that we laid out to each other how we were going to try to deal with this.
Right from the start we were I think quite positive. This doesn't mean that we didn't have what I call "our moments" when there were tears and anger, but these were very short lived, and it was back to positivity. We sorted out a plan of sorts as to what we/I had to do and this plan included end of life arrangements. I was adamant that I wanted to go into a hospice, while my darling Tina wanted me at home. My reasoning was simple; I knew Tina would not leave my side 24/7 when the time came, and I believe that she will need a break from the stress then, when she can "get away" from it for a short time. I think this is more likely to happen with me in a hospice than at home.
So, when the District Nurse asked me "John, where would you like to die?", I was not totally unprepared. My first answer, "Cuba", was apparently not an option on the NHS! So I told her a hospice, and was a bit surprised by her reaction; she said that the local hospice was only a very small unit, and chances were slim that I would be able to get in. We discussed options, and the only other one which Tina and I would be happy about was at home (the others were hospital or nursing home). Following this I pondered the matter and decided to contact the hospice. So I rang St. Johns Hospice at Clatterbridge and asked a very nice lady how I became a member. She advised me to ask my GP to refer me, so I did, my GP did, and I ended up sitting in the outpatients for an appointment with the Hospice Consultant. This you understand was to get my name known, and thus increase (hopefully) my chances of ending up there.
After discussion of symptom control, I was referred to the Hospice Day Centre, and Tina and I went for a visit there and then. I was then signed up to be a Thursday boy, and started to attend. I wasn't overly enamoured of this, but it was still a means to an end. So on 13th December I walked in prepared to dislike it, after all, it was going to be full of dying people wasn't it?
Well, who'd have thought it? What a wonderful place! In calm, restful surroundings which always seem to have laughter bubbling just below the surface, the staff and volunteers go about their business in a professional, caring, yet happy manner. Yes, it is full of basically dying people, but there is little or no chat between them about illness or symptoms. Word games, quizzes, craft therapy, chair exercise (from which I excuse myself!), relaxation therapy, aroma therapy, physio if needed and a host of other things keep us occupied. There are social workers, counsellors and a padre for anyone who requires them.
It is a place which is greater than the sum of its parts, and the staff are helped by literally hundreds of volunteers. It is also the place which helped me during my one real wobble. As I said in a previous blog, when I'd finished my treatment I was feeling adrift, with nothing to focus on. But I had the hospice every Thursday, and I know it helped me through this rough time. I am not going to single out any individuals here, but if you happen to see this blog, know that each and every one of you, staff and volunteers alike, are heroes.
Right from the start we were I think quite positive. This doesn't mean that we didn't have what I call "our moments" when there were tears and anger, but these were very short lived, and it was back to positivity. We sorted out a plan of sorts as to what we/I had to do and this plan included end of life arrangements. I was adamant that I wanted to go into a hospice, while my darling Tina wanted me at home. My reasoning was simple; I knew Tina would not leave my side 24/7 when the time came, and I believe that she will need a break from the stress then, when she can "get away" from it for a short time. I think this is more likely to happen with me in a hospice than at home.
So, when the District Nurse asked me "John, where would you like to die?", I was not totally unprepared. My first answer, "Cuba", was apparently not an option on the NHS! So I told her a hospice, and was a bit surprised by her reaction; she said that the local hospice was only a very small unit, and chances were slim that I would be able to get in. We discussed options, and the only other one which Tina and I would be happy about was at home (the others were hospital or nursing home). Following this I pondered the matter and decided to contact the hospice. So I rang St. Johns Hospice at Clatterbridge and asked a very nice lady how I became a member. She advised me to ask my GP to refer me, so I did, my GP did, and I ended up sitting in the outpatients for an appointment with the Hospice Consultant. This you understand was to get my name known, and thus increase (hopefully) my chances of ending up there.
After discussion of symptom control, I was referred to the Hospice Day Centre, and Tina and I went for a visit there and then. I was then signed up to be a Thursday boy, and started to attend. I wasn't overly enamoured of this, but it was still a means to an end. So on 13th December I walked in prepared to dislike it, after all, it was going to be full of dying people wasn't it?
Well, who'd have thought it? What a wonderful place! In calm, restful surroundings which always seem to have laughter bubbling just below the surface, the staff and volunteers go about their business in a professional, caring, yet happy manner. Yes, it is full of basically dying people, but there is little or no chat between them about illness or symptoms. Word games, quizzes, craft therapy, chair exercise (from which I excuse myself!), relaxation therapy, aroma therapy, physio if needed and a host of other things keep us occupied. There are social workers, counsellors and a padre for anyone who requires them.
It is a place which is greater than the sum of its parts, and the staff are helped by literally hundreds of volunteers. It is also the place which helped me during my one real wobble. As I said in a previous blog, when I'd finished my treatment I was feeling adrift, with nothing to focus on. But I had the hospice every Thursday, and I know it helped me through this rough time. I am not going to single out any individuals here, but if you happen to see this blog, know that each and every one of you, staff and volunteers alike, are heroes.
Up to date and matters of the heart
I had another follow up scan at the end of May and while Horace still sleeps soundly, the bastard has let his progeny loose. I have two metasteses high in my right lung, and another one high in my left. I started a second line oral chemo treatment (Tarcevan) on 1st June, and that is where matters rest at the moment.
I mentioned in the first part of my blog that there were tears, laughter, and a lot of love, and I need to expand on that. I do not want to sound brave or noble, but from the start, my whole concern has been for Tina, my wonderful wife. You see, I don't fear death (although this may yet change), I don't have religion in the afterlife sense, but I am a tad curious. Of course I don't WANT to die, and I will fight all the way.
But let's look on the positives - yes there are some! Firstly, you do appreciate things more; walking the dogs in the park; watching spring finally arrive; sitting in the sun enjoying a drink; waking each morning and seeing Tina lying next to me. Then of course, it forces a re-evaluation of all your values. Your priorities change. I find myself calmer, more forgiving. Even bad drivers don't upset me........ well not so much anyway!
Tina is my rock, and she deserves a whole blog to herself. Because this is such a slow, insidious disease we have had a lot of time to just be together and talk, and how we've talked. From deep rather sad conversations to chattering away and spouting rubbish, we have covered everything. She has however put her foot down, and will not let me go and haggle with funeral directors over the cost of the funeral! It is a joy to me that I have had time to tell her just how much she means to me and how much I love her. Words are inadequate............
I have reconciled with my daughter, Sarah, after 12 years and this is truly wonderful. We see each other every week, and I'm so proud of the wonderful, capable lady she's become. I hope to go to the Isle of Man in a month or so to see my son, Jason and his young lady Katie, something I am very much looking forward to. One slight disappointment is that I have been advised not to fly, so we cannot go abroad. So we are having a break in a fortnight in sunny Morecambe, which I know we will enjoy.
If you've taken the trouble to read this and my previous entry, I hope it hasn't bored you. It's been quite cathartic for me, and in a strange sort of way I've enjoyed doing it. I think there may be at least one more part to come.......... we'll see.
I mentioned in the first part of my blog that there were tears, laughter, and a lot of love, and I need to expand on that. I do not want to sound brave or noble, but from the start, my whole concern has been for Tina, my wonderful wife. You see, I don't fear death (although this may yet change), I don't have religion in the afterlife sense, but I am a tad curious. Of course I don't WANT to die, and I will fight all the way.
But let's look on the positives - yes there are some! Firstly, you do appreciate things more; walking the dogs in the park; watching spring finally arrive; sitting in the sun enjoying a drink; waking each morning and seeing Tina lying next to me. Then of course, it forces a re-evaluation of all your values. Your priorities change. I find myself calmer, more forgiving. Even bad drivers don't upset me........ well not so much anyway!
Tina is my rock, and she deserves a whole blog to herself. Because this is such a slow, insidious disease we have had a lot of time to just be together and talk, and how we've talked. From deep rather sad conversations to chattering away and spouting rubbish, we have covered everything. She has however put her foot down, and will not let me go and haggle with funeral directors over the cost of the funeral! It is a joy to me that I have had time to tell her just how much she means to me and how much I love her. Words are inadequate............
I have reconciled with my daughter, Sarah, after 12 years and this is truly wonderful. We see each other every week, and I'm so proud of the wonderful, capable lady she's become. I hope to go to the Isle of Man in a month or so to see my son, Jason and his young lady Katie, something I am very much looking forward to. One slight disappointment is that I have been advised not to fly, so we cannot go abroad. So we are having a break in a fortnight in sunny Morecambe, which I know we will enjoy.
If you've taken the trouble to read this and my previous entry, I hope it hasn't bored you. It's been quite cathartic for me, and in a strange sort of way I've enjoyed doing it. I think there may be at least one more part to come.......... we'll see.
Nine months and counting!
Well, it's always good to start with a lie! It is in fact 6 days short of 9 months since we heard the verdict "Stage 4 Non Small Cell Lung Cancer. Inoperable. Incurable". I have to say that this was not totally unexpected, but still a shock.
Our lives since that day have been a roller coaster of emotions, and it is only now that I feel I may be able to try to make some sense of it all, although this may still be somewhat disjointed. We came out of the consultant's office with a prognosis of 6 months (average) without any treatment. Treatment of course was never in any doubt. Four cycles of chemo at 3 weeks per cycle, followed by 20 cycles of radiotherapy over 4 weeks.
Looking back, I guess I spent the first couple of months like a whirling dervish; so much to do to set things in order as best I could. Plans to make, people to see, things to do. I will be eternally grateful to Macmillan, who sorted out DLA, Car Tax etc for me. The house, which was already up for sale, has had its asking price reduced significantly in an attempt to sort out a move while I can still help with it. During all this, there were long talks with my rock, Tina, where I'm glad to say nothing was taboo. We had, and still have, what I call "our Smith and Jones chats" at the kitchen table; tears and laughter and lots of love.
Right from the start, I have accepted that Horace (my name for the little bugger) is going to get me. But I decided there and then that he will have to drag me kicking and screaming to the last great adventure. Tina I know did not react well. Despite all the medics and me stressing all treatment was palliative only, she still held out hope that it would cure me. It has taken a fair while for her to realise this is not very likely, and her courage and strength in facing it is an inspiration to me.
The chemo was fairly successful, reducing Horace by around 50%, and allowing my partially collapsed left lung to reinflate. I was fairly fortunate, and did not have any really bad side effects. In fact the worst part towards the end was getting bloods taken and getting the cannulas in because my veins had partially collapsed. Radiotherapy was a doddle until the last week when my oesophagus was beginning to burn slightly. Some antacid with a local anaesthetic in helped, and it soon passed when treatment finished.
The next period was in many ways the hardest. When the treatment was finally over it felt as though I'd been cast adrift. From being at the hospital every day, we now had nothing to do but wait, and I found that very hard. My first follow up scan was brought forward a couple of weeks because I was coughing up blood. However, the scan results were inconclusive because there was still scarring from the radiotherapy. I was however feeling a lot better, not great, you understand, because I was still quite breathless and short of energy, but certainly better than I was when first diagnosed.
I think that's enough for now, but I will return.............
Our lives since that day have been a roller coaster of emotions, and it is only now that I feel I may be able to try to make some sense of it all, although this may still be somewhat disjointed. We came out of the consultant's office with a prognosis of 6 months (average) without any treatment. Treatment of course was never in any doubt. Four cycles of chemo at 3 weeks per cycle, followed by 20 cycles of radiotherapy over 4 weeks.
Looking back, I guess I spent the first couple of months like a whirling dervish; so much to do to set things in order as best I could. Plans to make, people to see, things to do. I will be eternally grateful to Macmillan, who sorted out DLA, Car Tax etc for me. The house, which was already up for sale, has had its asking price reduced significantly in an attempt to sort out a move while I can still help with it. During all this, there were long talks with my rock, Tina, where I'm glad to say nothing was taboo. We had, and still have, what I call "our Smith and Jones chats" at the kitchen table; tears and laughter and lots of love.
Right from the start, I have accepted that Horace (my name for the little bugger) is going to get me. But I decided there and then that he will have to drag me kicking and screaming to the last great adventure. Tina I know did not react well. Despite all the medics and me stressing all treatment was palliative only, she still held out hope that it would cure me. It has taken a fair while for her to realise this is not very likely, and her courage and strength in facing it is an inspiration to me.
The chemo was fairly successful, reducing Horace by around 50%, and allowing my partially collapsed left lung to reinflate. I was fairly fortunate, and did not have any really bad side effects. In fact the worst part towards the end was getting bloods taken and getting the cannulas in because my veins had partially collapsed. Radiotherapy was a doddle until the last week when my oesophagus was beginning to burn slightly. Some antacid with a local anaesthetic in helped, and it soon passed when treatment finished.
The next period was in many ways the hardest. When the treatment was finally over it felt as though I'd been cast adrift. From being at the hospital every day, we now had nothing to do but wait, and I found that very hard. My first follow up scan was brought forward a couple of weeks because I was coughing up blood. However, the scan results were inconclusive because there was still scarring from the radiotherapy. I was however feeling a lot better, not great, you understand, because I was still quite breathless and short of energy, but certainly better than I was when first diagnosed.
I think that's enough for now, but I will return.............
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