I just finished 8 rounds of chemo 28 radiation treatments. Surgery is next for my colon cancer.
@hugitout23 why did they elect to do chemo and radiation first?
@Morpheus that's fabulous news! If you do all the right things then odds will be even better. Not everybody does.
@MuellerGrad welcome to the party, better late than never. Your situation sounds pretty grim and I'm glad you have such a constructive attitude. There was a moment when the doctors weren't sure if my cancer would be operable, so I have some sense of what you might be feeling.
The more I think about it the more I believe that you are not living 'with' cancer. I think you're just 'living'. Cancer just happens to be one of the hassles that life has thrown at you, and it doesn't deserve a special mention.
@hugitout23 mine is also colon cancer, and my next thing is also surgery. I haven't had any radio, they said it wasn't appropriate in my case.
Here's a wee story for you. From time to time I take a deep breath and delve into a specialist dating website which is known for its, ahem, sweetness. The other day I fell into conversation with an attractive young woman, and I mentioned that I have stage 4 cancer with a major operation soon. Turns out she also has stage 4 cancer and is having a major operation soon. We had one of the best conversations about cancer that I've ever had, it was very refreshing and encouraging. You never know who you are going to meet on the internet.
My update. I am to have a major operation on December 2nd. Surgery will last 4-7 hours and involve at least two surgeons. One will remove a section of sigmoid colon, and the other a wedge of bladder. Assuming they can do it by keyholes, there will be up to five incisions. Immediate post operative recovery is likely to be in the high dependency unit and I will be in hospital for a least a week. No food for the first five days, which is a rather delightful little bonus - I've long wanted to lose a few pounds. If the join in the colon isn't perfect I will have a temporary stoma for many months, which, as far as I can gather, isn't as bad as it sounds. The mortality rate for this kind of thing seems to be 1%-2%, mostly from post-op complications i.e. infection. I'm younger and fitter than the average patient so my chances are better.
At this stage they are ignoring the secondary lesion on the liver. That isn't urgent, and will be dealt with once I've recovered from this lot. Assuming things go well, I could be nominally cancer-free sometime after Easter and indeed that is the most likely outcome. Risk of recurrance is pretty high, though. And there is plenty that could go wrong along the way.
Factoid of the day: the colon is five feet long, so it can afford to lose a section.
I'm treating myself to a few days away this week, at a posh country house hotel. The kind of place that does fancy weddings. Praise the lord for midweek deals!
Today I came put of hospital and I'm staying with my sister for a couple of days. My recovery is going remarkably well but I remain very delicate.
The surgery took ten hours in the end, and was successfully accomplished with keyholes. They used a surgical robot, yours for just two million quid. No complications.
I'm on a very restricted diet and I have two tubes coming out of me - a urinary catheter and an abdominal drain. Both will come out in a fortnight. Pain has never been a problem, and eating and drinking have gone well. No stoma. Didn't die, as the more observant reader will have ... observed.
In other words I'm fine. After Christmas we will start to consider treatment for the remaining cancer in the liver, which may result in another operation.
During my time in hospital four people kindly visited me. One I met on this site, and another in the wider cuddling world.
@CuddleDuncan Best wishes, and a Merry Christmas it shall be.
@CuddleDuncan I'm so very happy all is going well for you!!! Sending cuddles and continuous healing vibes to you and all who need it. A Merry Christmas it will be indeed!
@CuddleDuncan
I’m assuming you had a colectomy. It took me about 3 weeks to get over mine but I’m also assuming mine was much more simple than yours. My surgery was also robotic but it only took about 3.5 hours. I would have been back at work after two weeks but I came down with Covid and a UTI.
I’m glad it went well. I’m trying to remember if this is your first surgery. I know you did chemo.
I have 4 more days of chemo left. I’ll be done on Thursday and for anyone who is curious, chemo is not fun at all, it sucks. The last round that I’m on has ironically been the easiest and I’m not sure why seeing as chemo is cumulative.
Hang in there and please keep sending updates, Duncan.
Sending best wishes and hope to both of you @CuddleDuncan @Morpheus It seems there’s positive news for Christmas, 🙏🏻🤗🎄
I finished chemo this past Thursday. Going through chemo and trying to live a semi normal life was the hardest thing I’ve ever had to do. The surgery was easy in comparison. I still have to get a CT scan and blood work but I’m staying optimistic.
How’s @CuddleDuncan doing?
@Morpheus1906 I'm doing very well. I didn't have anything at all before the chemo, that was my first thing. I had six treatments, of which the third was the hardest individually. However there was a very strong cumulative effect and I was very washed out by the end. Wasn't fully aware of it due to the 'boiling frog syndrome'. The echoes of the side effects still remain.
My chemo was a relatively gentle one, and I wasn't working while I was doing it. I probably could have done for the first couple of rounds but after the third I defintely could not.
It's nearly a fortnight since my operation, which was a resection of the sigmoid colon and a resection of the bladder. I still have two tubes coming out of me, which - subject to a scan - will be removed on Wednesday. I have been gobsmacked at how modest the effect has been on me, given the severity of the operation. Modern robotic keyhole surgery is a wonderful thing.
Don't get me wrong, I'm still very much post-operative and will be till mid January at a guess, but everything has gone about as well as it possibly could.
My spirits remain reasonably high and have been buoyed by the affection of various friends - mostly from the cuddle world - who have kindly visited me. However I've been physically unwell since the beginning of May and the first cracks in my morale are beginning to appear. It's just frustration and fed up-ness. My days are good but the nights tend to be unpleasant with discomfort, insomnia, tube hassles, pain, etc.
Curiously, for somebody who's just had a huge operation for stage 4 cancer, I still have stage 4 cancer. Secondary tumour on the liver is still there, and will be dealt with in new year. So I'm only slightly over halfway through the whole process.
No aspect of this has been the hardest thing I've ever done or anything close. It is true that I've had a relatively straightforward time as these things go, but I've been through much worse than this. In fact this has been my best year for a long time, and the cancer has made a positive contribution to that.
Thanks for the update @CuddleDuncan I hope things go as well as possible for you. I noticed today my arm near the infusion site is swollen. I have an appointment Tuesday to get it looked at but I think it’s something called phlebitis which apparently isn’t serious but it’s still annoying.
Sending you big hugs from Los Angeles, Duncan
@Morpheus thank you. Sorry about your arm, but minor non-serious but annoying things seem to be part of the theme of a 'cancer year'.
The results of my CT scan came back today showing that I am cancer free. I still need to do blood work but I am confidant results will be good.
@Morpheus hooray! Well done! Very happy news indeed.
Quick update: I'm recovering well and the remaining tubes have been removed. Now just a few weeks convalescing.
The real news is the outline plan for the next stage of treatment. I am to have another course of chemo, the same as last time. (Six fortnightly rounds of FOLFOX.) Presumably it will be a little harder this time because I've had it before and not that long ago. After that, probably about early May, I will have an operation to remove whatever is left of the tumour from the liver. (Yes you can safely slice a piece off the liver.) This will be a smaller operation than the one I've just had. So, overall I would say I'm just past half way through the whole cancer treatment process.
Assuming all goes well, following the liver operation I will be nominally cancer-free although the risk of recurrence is substantial.
They did my chemo and radiation first to kill and shrink the tumor. Now remove it
Best of luck to you @CuddleDuncan pleaae continue to keep us updated.
@CuddleDuncan @Morpheus You both are incredibly amazing, IMO. Reading over the last 6 months, I've learned so much about the treatments and both of you. Thank you for sharing the details here. ((HUGS))
So update. Due to the chemo infusions, I have developed a blood clot in my left forearm. My oncologist has put me on blood thinners for 6 months. She says there’s only a 5% chance the clot will cause me issues or complications. Apparently blood clots in the legs are far more serious due to the size of the veins in the leg as well as the pressure put on the legs. I’m optimistic things will be fine, 5% are great odds. It’s just another thing.
@Morpheus it's better than that. Remember that the statistics include people who are at death's door anyway, the people who lie about taking their medicine consistently when they don't, people over 90, etc. As long as you do all the things you are supposed to the chances of trouble are actually much less than you might think.
But still. Not exactly good news.
I'm on blood thinners myself, just a normal post-operative precaution. Have to give myself an injection every day. In my case it's very easy. Modern medical equipment is just unbelievably good: the disposable syringes for that injection, the bags I had - easy to use and they never leaked so much as a drop - the dressings, especially the glue. Just amazing.
@starrynitecuds that's very kind, thank you. The support in this thread and elsewhere has been really helpful.
Hope you are doing well @CuddleDuncan
@Morpheus I am very tired, which is only to be expected, but other than that I'm recovering very well. Took the last dressing off this morning and all five holes in my tummy are healing nicely. Internal waste management systems not quite perfect - again to be expected - but fundamentally working well.
Are you ready for the latest?
Ok so had cancer, had surgery, had chemo, Dr says I’m cancer free. I developed a blood clot in my arm, Dr put me on blood thinners. Due to either the chemo, the clot of the blood thinners, I developed vertigo. The Dr did the epley maneuver with me and I’m back to not being dizzy.
@Morpheus oh what larks you've been having! Nobody ever talks about just how much FUN it is to have cancer! 🙄
I'm doing very well. I managed to get a few days away at a country house hotel outside London, which was really lovely. The kind of place that does picturesque weddings. The weather was cold and clear winter, which is wonderful. For two nights I was the only guest, which made it even better.
Yesterday I started a new course of chemo. FOLFOX, six fortnightly rounds, exactly the same as last time. The intention to reduce the secondary tumour on the liver to next to nothing, and then operate on whatever is left. The chemo will hopefully also nuke any random cancer cells that survived the surgery, or have gone a-wandering since the last chemo.
Recovery from the operation has gone magnificently, and while I'm not entirely over it yet - which would be impossible - I'm certainly well enough to crack on with the chemo. In terms of time, I'm now about halfway through the whole cancer treatment process: chemo and operation done, chemo and operation to come.
Looking back at the thread title, it's worth nothing that four of the people in London who have been most supportive are or were members of the Cuddle Comfort community. Without them I would be pretty lonely and in a much worse state than I am.
I’m in remission from stage 4 Hodgkin lymphoma You will get through this
I do have an update which I will write in a day or two.
In the meantime, a pair of images came to me in a dream last night. They were created by my unconscious mind and as far as my conscious mind is concerned they describe accurately my experience of the difference between cancer and depression. After a certain amount of swearing, this is what I managed to beat out of the ChatGPT AI image generator. The depression image is much nicer than the one in my mind, but the AI isn't allowed to do the man shitting on my face or the dogs eating me alive. Well you know what dreams are like.
This is what I mean when I say I've had a good year. This is what I mean when I say cancer is easy. When I'm whinging about my bad nights or wonky feet I'm really just moaning that the beach hotel has run out of Tanqueray and I've had to make do with Gordon's, or that Fabergé's turquoise bikini is clashing with the sea.
While we wait for an update from @CuddleDuncan I will provide an update on myself. I am now 2 Months post with chemo. My CT scan and bloodwork, post chemo show that I’m in remission. I had an MRI on my liver a few weeks ago which showed no signs of cancer. I developed a blot clot at the chemo infusion site on my forearm for which I’m taking blood thinners. I don’t know if I’m having post chemo side affects or blood thinner side affects but I definitely don’t feel 100% I’m trying my best to focus on wellness as opposed to why I’m not feeling well. I had a CT scan yesterday to determine if the blood clot may have broken off and travelled to my lungs. It has shrank quite a bit and I don’t think it has travelled but I’ll know more when I get the results. That’s where I stand. Hope to hear from @CuddleDuncan soon.
Happy to report that I've had my last round of chemo for this season and that all is well. Overall the experience has been much the same as the last one in the autumn and is leaving me in a similar or perhaps even better state. Better? I hear you cry, how can that be?
The bad news is that first lot of chemo left me with a lingering side effect of neuropathy in my fingertips and feet. It's one of the more common side effects, and had just about disappeared before my operation at the beginning of December. However the op brought it on again and it isn't showing any sign of going away. It's caused by one of the two main drugs in my FOLFOX treatment, and after one round in January the doctors and I agreed to abandon that drug and continue with the other one. Standard response in the circumstances. Each drug works a bit on its own, they are just much better together: the whole greater than the sum of the parts.
The neuropathy is annoying and while it's not life-ruining at its current level we don't want it to get worse. It's been pretty consistent since Christmas, declining slowly if anything although that could just be the improving weather. Symptoms are unpleasant tingling, numbness, feeling cold, sensitivity to cold. There isn't any treatment, and possible end results range from it going away completely (more than possible) to amputation of both feet (extremely unlikely).
The knock on effect of this is that it means that recurrence of the cancer in the future is now more likely than it was. Given that colon cancer is quite keen on recurring once it's got to my stage, this isn't what we want. On the other hand, the secondary tumor on the liver was already small enough to be operable before this chemo, and with any luck it should be even smaller now. Just not quite as small is it would have been with full-strength FOLFOX. MRI and CT scans were on Friday so I now await the MDT's (multi-disciplinary team) updated plan. I'm expecting a major surgery - resection of the liver - sometime in May. No robots this time, just a bloke with a knife. Overall it'll be roughly on the same scale as the one I had in December, although at a different hospital, and it causes me no undue concern.
Chemo for me has been unpleasant, frustrating, boring and really quite miserable. However, in the grand scheme of a life, it's neither here nor there. As I've said before, this isn't a bad year by my standards. My day-to-day spirits are often a bit low, but my overall spirits remain excellent and I'm hoping for a good couple of weeks between recovery from the chemo and the operation. I might, might, even manage a holiday. Now that would be a very fine thing indeed.
Thanks as always to the people who write to me and think of me - you know who you are - I appreciate it very much.
Oh, and I should add that the staff on the chemo ward have been excellent. A friend wished me, "good luck for tomorrow" before chemo at one point and I said, "oh I don't need it. Chemo day itself is actually a minor pleasure." My last visit will be tomorrow to get my PICC line removed. Well I say 'last' .... nobody has said anytyhing, but it's possible I'll be back in July for a post-operative season. There has been absolutely no talk whatsoever of what might happen after the operation, I think it's one of those "we'll figure out what to do if we get that far" things. Certainly when I was diagnosed it wasn't at all certain that I would be alive now. Alive and kicking I am.
The real bad news is that my dad has been diagnosed with very bad and inoperable liver cancer. There are treatment options but they are taking a very long time to come through. He's in his mid eighties so it was only a question of when and what, and both he and my mum are taking it quite sanguinely. "You've got to die of something" as she always says. He's in acceptable health otherwise and walks 2.5 miles into town every Tuesday for a nice lunch with a very old friend. But right now I'm more worried about him than me.
Anyway yes you did hear that right, within space of eight months of my diagnosis my sister and father were also diagnosed with cancer. Sister has had treatment, is fine and will remain fine insofar as you can say that in this context. My other sister has already had and recovered from cancer, as has mum.
In other news I've decided to move house. A really amazing flat came up but fortunately I didn't get it .... it would have meant moving while still recovering from the chemo. There will be other flats.
Recently I was reminded of a slightly old but excellent - ahem - documentary about surgeons in London. This is the first of several episodes and they get better and better. You may find the subtitles helpful.
Harry & Paul Doctors Scene 1
Doctors will always say the worst case scenario as a way to cover themselves if things don’t work out, I am hopeful for you, but I am still so sorry about the news. Happy to hear you have the support, its not easy being grateful during times like these….hugs