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The good news:
Our youngest daughter is now apparently settled into supported living which is a great weight off our minds.
The bad news:
However my wife’s issues appear rather worse than hoped for. Her Chemo and subsequent operation were not that successful as the cancer has now spread and is still active within her lymph nodes. Next it is palliative radiotherapy and more chemo to try to hold back the inevitable for a while. Not the best Christmas present and not the best burst of festive joy to meet the season.
So sad to read that Richard. Can only echo what others have said – will keep everything crossed for you all. I know words are cheap but people do beat the odds and I really hope this hapens for you and yours. All the best.
Richard, I sincerely hope that your wife is able to overcome this, keep battling on: all best wishes from me, having been there and hopefully coming out of it OK.
As you may have read here before, I began last April with Pancreatic & Spleen cancer. Having beaten that with surgery and chemo, I developed Lymph gland cancer part way through chemo, as a result they changed the constituents of my chemo and drugs. I feel much better lately (with good and bad days!) but have to wait until a week today for a final result from my consultant.
The only encouragement I can give you, is that it is definitely possible to take on this evil disease in all its forms, and beat it, one battle at a time. The encouragement I get, comes from family and my reaction to waking up each morning, peering through the curtains and saying to myself “Here comes another day, be thankful.” And I am.
I think almost constantly about my brother, living in a commode/wheelchair during the day and suffering Dementia so extreme that he knows no one. Not his wife of almost 70 years, not any of his 6 children, grandchildren or great-grandchildren. And not me, which I keep having to torture myself by proving. Then I realise that for all my physical suffering, I still have most of my marbles in the bag.
Life is definitely unfair and uneven.
When the Thought Police arrive at your door, think -
I'm out.Thank you to all who responded, I know Steve you have had your ongoing challenges with your wife’s health. My wife successfully was cleared from a stage 2 melanoma over quarter of a century back so I guess we had some luck at that time. This one is already showing signs of being more of a B***** and there has already been talk of research studies and experimental projects and invites to join trials at UCLA. As long as it is not going to be too outlandish I hope my wife will join in, but it has to be her choice. Either way it was a lot to take in. Next week I have to stuff in a dental appointment, spinal surgeon appointment and a plastic surgeon for my post operative skin cancer removal review, that should see me done and dusted.
Steve, thanks for the personal message, I am not sure how to respond ‘off site’, but as a hint, information is also being shared on a restricted basis within our family for deducible reasons. In addition to the three hours waiting time this morning I have just had another hour and a half for her scans with more on Friday. Tomorrow is a simply trip across the county boarder for physio and a dressing check. It is all go and no mistake at the moment. I am not looking forward to a month of daily round trips to the North Middlesex Hospital, probably starting in January but could be later this month, query – snow and ice time.
My wife’s mobility rules out public transport so it is going to have to be car trips that should take about 1/3rd of the travel time by other means, thank goodness I no longer have daughter’s taxi duties!
Richard – clinical trials, one could write a book about them and ( probably ) some have.
When I got my diagnosis ( locally ) they said there was a clinical trial available for those with my variety of Lymphoma and they wanted me to go straight on to it. I felt that I was being rushed into a choice and would be used as cannon fodder to go into the trial, but even then it was 50/50 whether I got the new wonder drug or the old standard treatment. I was in a real quandary!! That sort of time-sensitive decision both focuses the mind, encourages paranoia, but also sends it off in all sorts of strange directions
I was fortunate, in that my son’s partner’s sister worked in the Marsden and I felt sure that if I went there I would be on the new drug. They initially adopted a ‘Watch and Wait’ brief and 6 months later decided I could go on the trial if that was what I felt was right.
Having grown up in the era of Tomorrow’s World and multiple Medical scientific breakthroughs, whether they were in Cancer cures, AIDS treatments or flu vaccines, I felt, rightly or wrongly, that my best shot at getting through was on the leading edge.
I signed up for the treatment on the Clinical Trial at the Marsden and the rest, as they say, is history!!For my metabolism and my version of Lymphoma, the new drug actually turned out to be a wonder drug. Apart from the first allergic reaction to the anti-body each session of 1 x anti-body and 2 x chemo’s was like taking a pain-killer for a bad headache – it just worked. I drove home from the hospital feeling better than when I drove down there.
I had an ‘off-day’ on the second or third day after the session but it was just a downward dip, if that makes sense.
Five years on and the only things that I have to worry about are my Cholesterol ( statin controlled ) and my blood pressure ( currently under review – more next week ) and a ( Marsden scan noticed ) Abdominal Aortic Aneurysm – it has expanded by 1mm since my last scan in May this year and by 7mm over the last 18 months.Good luck with your wife and the choices you both make.
Regarding a trial, I think it’s probably a good idea, as even if you get the old (normal) treatment over thd new, you’ll be getting monitored more closely than you would not being on a trail.
So I’d say try it. As you’re probably better off, even if youre not getting the new stuff, and even if the new stuff isn’t effective, your bad luck adds to the future knowalge for those who sadly will be following you.
Bit yes it’s a tough call.
I
………………you’ll be getting monitored more closely than you would not being on a trail.
That’s something I should have remembered. When I visit the GP next week, I’ll be going armed with a cross sample of 5 years’ worth of BP readings.?
Sorry to hear that Richard. All the best.
"Everything looks interesting until you do it. Then you find it’s just another job" - Terry Pratchett
Thank you again to all and a special note to Steve and JayCeeDee, those thoughts mirror mine. In a nothing much to loose situation go for all you can, while you can and keep in touch of what is happening. Since standard protocols have not worked going off piste appears to be the best course of possible action. However, it is not my final call to make so I must be prepared to support whatever choice is made. For the moment I am looking at the future as a large bag of hidden challenges that I have to meet one by one. It is the only way I know how to deal with the issues. Sometimes it is hard to know which call to answer first: that is the only choice to make. If I find it was not the right call, I must then be flexible enough to modify my approach, no ifs no buts, just change, don’t argue.
At least we have had a few great offers of real support with one in particular really delivering, for which we are very grateful.
Spot on Richard. Just keep putting one foot in front of the other. Where we end up, is where we end up. I come to terms with that a few years ago. Worrying won’t change anything, if anything it can have adverse effects, but never positive..
Good luck to you on yours and your wife’s journey. ❤️?(was gonna put a beer but recall you like wine).
Richard, luckily for me all my experiences are third hand, but one lesson I learned to ask by observation is: “What impact on remaining quality of life will this have?”
Richard – so sorry to hear the bad news – wishing you and the family strength at this difficult time.
The more you meet people the more you understand why Noah took animals instead of humans
Since my wife got her initial batch of less than pleasing news the grass has not been allowed to grow, she has had both a CT scan and a bone scan. No news yet from the CT but the bone scan has come back clear which is a prime source of worry cleared for the moment. This news release came about as she had a rheumatology appointment to explore ways to control her mixed connective tissues illness, a circulation problem and her arthritic issues. This mornings upshot, a shed load of blood tests, a number of hand and foot x-rays and some suggestions as to palliative treatments to ease the pains so it was not all in vain. She should return in 6 weeks for an update from the tests. Now to persuade the GP to give her the (non addictive) additional treatments., Tramadol ‘sort of helped‘ but did not resolve the issues or restore normal function, so fingers crossed.
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