The Great Recovery part 2 - After Cancer treatment what next?

[TopOfTheCliff]

You may have finished treatment for cancer, be NED or in remission, or it’s just a lull between storms. You don’t want to dwell on the past but look forward to the future. You know you need to eat well, get fitter and pick up the strands of life again. This is the thread for you with fellow travellers. Join us!

There is the General Cancer thread for those in active treatment:
https://www.mumsnet.com/talk/general_health/4969445-cancer-support-thread-92-christmas-happy-hour-at-the-patience-inn-7pm-tonight?page=10&reply=132553156

And there is the Stage IV thread for those whose treatment is ongoing:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=132555664

The woman who cancelled my appointment was terribly apologetic, I said to her don't worry I wasn't that keen to come and have my vagina delved into today anyway, she said no nobody is!

My DM had an imaginary bowel cancer diagnosis before I had told her about my diagnosis; she had a positive FIT and she was convinced that the GP had told her she had bowel cancer, no matter how much I tried to convince her that she was just going for test she hadn't been diagnosed she wouldn't take it in. She didn't have cancer! It made it difficult for me to support her imaginary diagnosis when I had an actual one 🙄😂

Thanks everyone for your thoughts re my dad, it's encouraging to hear so many good items but yes, I could do without going back into 'cancer mode' so soon.

@Sierrasapohire that's a nuisance about your appointment. I'm similar as I suspect my cancer check up physical exams won't make much difference to actual outcome but I still can't bring myself to miss them!

My closest friend suffers from quite bad health anxiety - it was quite tricky to navigate whilst going through diagnosis and treatment. Her stage four bowel cancer that she had confidently (albeit in a petrified state) diagnosed in herself turned out to be a surfeit of beetroot eaten previously. I am more sympathetic to her plight now though as I am so much more anxious and perceptive about anything that feels 'off' in my body now.

In other good but possibly tmi news my stomach bug seems to have mostly resolved. That was a ghastly 24 hours though! At one stage I said to DP that I've never felt so ill in my life which he raised an eyebrow at 🤣

@ClashCityRocker 😱. Sounds like the time that I thought my cancer had spread to my bladder because my wee was pink after I'd had too many vitamin B12 tablets, triggering an urgent referral and biopsy 😳. Though to be fair the biopsy would have happened eventually anyway because of granulation tissue!

I got a bit thrown when someone said their sisters breast cancer abroad (which was less severe than mine) she has follow ups every 3 months and I have nothing really. I can have yearly mammos for 5 years which would pick up a similar cancer when it got to stage 3 or so in other breast but no checks at all for reoccurence which is the much bigger concern. But I am not sure what those checks could do, I would prefer an annual check for reoccurrence and new cancers like a physical check and symptoms discussion. I have had bloods taken since which were good apart from a slight kidney one which they aren't concerned about. Had 2 bone scans now which just show oestopenia in some bones, latest results to come but minimal bone pain. I was at least thoroughly checked pre cancer treatment with a CT chest and abdomen and have endo tests following that still and for DIEP they have given me CT and also physically checked breast around a year and a half ago now. Though physically and mentally I feel pretty good and no obvious symptoms so I don't think about it much just enjoy life now.

I generally watch positive programmes, watching Great Australian railways now and dreaming of being in Australia again. Can hear birds singing happy with our garden work. Ordered more things to do that. And hoovered some of Floofs carpet fluff.

@Penguinsa this is why my DD is doing a research project on cancer follow up. In some countries with a “pay by activity” system it is financially worthwhile for surgeons and oncologists to offer frequent reviews/scans/bloods and it helps patients who are anxious too. There is no evidence however that it is beneficial to long term survival rates compared to waiting for patients to get symptoms from recurrent cancer. There will be a risk from frequent X-rays and a level of over investigation from incidental findings that will also cause anxiety. Currently the NHS has gone too far the other way, as there is no financial incentive to see patients more often and they are too busy. It needs rationalising to work out the optimal way to follow up different cancers at different level of risk.

All going well here. I worked on my boat this morning, went to physio and am now contemplating some allotment bashing this evening. My ribs are still sore but only when I lie on that side. I’m more worried about DH who has given his police statement about the assault and is just a bit sad. This morning he passed out during a haircut. He needs a bit of cherishing. This I can do!

@TopOfTheCliff that's interesting and quite reassuring in a way - I sometimes worry that I haven't been scanned enough and must admit I was sneakily glad when I needed a CT on my pelvis and abdomen for the infection and it came back ok. I remember not long after treatment feeling quite anxious as I didn't know what my bloods were doing!

It's part of the reason I have avoided Zoe and the like - I tend to get obsessional about data and stress over it which is probably just as bad 🤣

Sorry to hear your husband is low at the minute but not surprising. I am sure you'll provide him with adequate TLC.

Glad things are going well for you Top but sorry about your DH. Interesting the stats aren't any better, I always worry with too many scans with radiation in too and don't want to live at hospital like the treatment year but then think would I notice a symptom? I do find the lack of follow up means I'm very chilled about it until I see people dying then I start to wonder if I'm too chilled.

Just having pancakes for dinner. DH has done more lawn mowing. We should have the RHS garden plants and tools arriving tomorrow and if they arrive at a reasonable hour and weather we will plant tomorrow.

I saw this article today on Twitter from the BMJ about how early diagnosis isn't necessarily beneficial in terms of outcomes - https://www.bmj.com/content/385/bmj.q973 - same thing with follow-ups. For 1A1 endometrial cancer they are not beneficial at all, and arguably the same for my stage three because it was still grade one. I'm more worried about whether there might be something in my lymph nodes, but I was told they probably wouldn't scam me again for another year because of the radiation adding up, that's also okay with me to avoid the stress.

@Penguinsa it’s not that the stats aren’t good, it is that there aren’t any! Nobody has looked at this as far as I can see.

I was on local BBC news this evening. They filmed me mooring my boat!
Fame 😎

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859884/#:~:text=Following%20curative%20treatment%2C%20the%20most,quality%20of%20life%20take%20priority.

This is interesting. Intensive follow up of bowel cancer after curative treatment makes about 1.7% increase in overall survival. Lung cancer and lymphoma unclear benefit. So we shouldn’t worry if the NHS appears to be neglecting us 😂

I think I enjoy being neglected by the NHS. It means I can pretend that little bit longer. Although I have a blood test for low iron next week. There always appears to be "something" but cancer is the gift that keeps on giving.

@SierraSapphire I spoke to my GP after my bladder infection and mentioned I was still bleeding slightly 4 weeks after after the hysterectomy. She said give it a couple of days and if it’s still happening ’come in and someone will have a look up there’. Well didn’t that sound appealing!? Fortunately it seems to have stopped so no looking required.

According to my bowel surgeon 80% of my recurrence risk is in the first two years. So I have 3-monthly checks for 2 years then it gradually steps down until 5 years post diagnosis at which point my risk is equivalent to the rest of the community. I’ll continue to have annual checks for life, partly because of my dodgy genes. As a patient the follow up plan feels data-informed and I’m comfortable with it. Because I’ve had most of my colon removed I have some interesting ‘symptoms’ depending on what I eat during the day and I think I would feel more stressed if I was self-monitoring.

@TopOfTheCliff I read an article yesterday about productivity of healthcare systems. Australia’s system was compared favourably with other advanced economies (3rd behind Iceland and Spain) and importantly our improvement in productivity has been driven by improved treatment and outcomes for patients not by spending less. We spend 10% of our national income on health. But last by a long way was USA because their system is designed to maximise the incomes of doctors.

Mine is the same with the two year risk for endometrial @Remaker - I've got 22 days to go! Ovarian I think can hang around a bit longer, but that was just a tiny spot so hopefully low risk too. I also have lots of weird twinges from digestive issues after chemo and exercise. I have phases of getting very anxious and phases of not being bothered at all.

That's exciting with your TV appearance @TopOfTheCliff - no excitement here! I've got another few days to go and then I'm taking a week and a half off so that will be nice to be able to just chill and do something other than work.

The Australian system sounds great Remaker DH is French and really much prefers the French system and goes back to France for his healthcare where possible and I think their system is better, you see a specialist far more quickly than here and their computer records actually work. He's back off next week to France for an eye check.

Well done on TV appearance Top and thanks for stats.

I think for lobular most reoccurrence is in years 5 to 10 when there are zero NHS checks but may look into private checks especially as nothing has appeared about an MRI. I have had most things checked but its been very random - like bloods got checked one time went to hospital as they had wrongly recorded was still on chemo but was useful to have them done for first time in a year and a half and they were pretty fine, kidney is still meh but OK. Had bone scans and that was just osteopenia so not too bad though awaiting latest one but no pain so think will be OK. Then have had a CT head for stage 4 symptoms clear and an abdomen CT for DIEP which was clear for cancer and endo tests and they did a physical exam of breasts. But could do with MRI scan of them. I don't even know the breast not reconstructed how they can check it - they can't do a mammo. Its quite lumpy but assume that's fine but maybe should get it checked though think its always been like that but not certain. I generally am quite relaxed about these things.

Went swimming tonight and did 100 lengths, 2 ladies went up to DH and made comments about his inactivity and how fit I was and DH was a bit hmmm. 😂Though he agrees on me just wasn't keen on his inactivity being pointed out. Then came back and DS had made kitchen floor muddy from garden so cleaned that before my bath, DS had also been in there as my bottles were knocked over and bent in but just glad he's bathing and using lots of floral stuff. A levels starting for DD on 14th May but thankfully she is very chilled and was singing to herself until 1am last night, getting loud singing all the time. Its funny her taste in music now, we have things like putting on the Ritz played really loud. I presume its people she does punting with. Its better than the modern music anyway, just odd to have songs from c 1920s.

Gardening tomorrow to plant 6 lavenders and 1 jasmine, get out some weeds and fill the green bin. Hope everyone has a great May Bank Holiday.

@TopOfTheCliff its both. Too much marking but also the stress that comes with exam classes. I’m back down to three days over four. But I just keep getting so fatigued. Going to bed at 8.30pm etc. And the thoughts keep whizzing around my head, what I need to do, ruminating about problems - interactions etc etc. The GP gave me Valium and upped my sertraline which upped my anxiety even more - it does (I’m sure you know) do that before it settles down.

My blood test results came back and GP has told me that I'm very anaemic, which I find worrying because according to my hospital discharge notes from 3 months ago I had a blood transfusion while in hospital. I was "out of it" for 24/36 hours so don't know if that's the case or not. Sadly my GP couldnt access my records from that particular hospital to confirm a blood transfusion or not. I read my GP the Hb levels for the 7 days I was in hospital and he said it didn't sound like I'd had a transfusion. There have been mistakes before on letters from that department of the hospital, so it remains to be seen if the blood transfusion was real. But at least I know now that this debilitating tiredness is real and something can be done to help.

It seems silly, and frustrating for all concerned, that my GP, my primary healthcare provider, cannot see my hospital records. It doesn't sound , @Penguinsa , that they'd have this problem in France.

@MissMarplesNiece it is so frustrating the lack of cohesion amongst records between different facets of the NHS!

My A&E admission notes from when I had sepsis say I had tests that I am pretty sure I didn't have - I had a CT scan rather than an ultrasound but it has both listed. Also blood gasses, I'm pretty sure that's a painful one and I'd have remembered having that.

And then of course it's up to me to notify my oncologist and explain what's gone on - it was all quite confusing at the time and whilst I assume they could request the records themselves, it seems like it would be very easy for things to be missed etc

I've got an incorrect diagnosis of something else from a while ago in another traumatic medical incident that I should've made a complaint about in which I wasn't told the truth about why I was going for a second scan had a surprise potentially life-threatening diagnosis given to me casually and I thought I was there about something else with no follow-up. My hospital also missed scan (as well as my cancer histology). I was diagnosed with trigeminal neuralgia (separate from The other condition), and I said to the neurologist at the time, "Even though I don't have the symptoms?" But he just waved me away and sent me a letter saying I had trigeminal neuralgia. When I spoke to the GP about it and said I now had a wrong diagnosis on my records, how do I get rid of? it? They just said it and it didn't really matter, which seemed wrong to me at the time but I was so freaked out by everything. I didn't have the energy to challenge it. I still feel pretty damaged by the experience, so when it happened again with cancer I just feel like I've lost all confidence that things will be safe and accurate.

I agree @SierraSapphire about the loss of confidence that records will be accurate and therefore safe.

I don't understand why records can't be shared - a few years ago I was discharged from hospital but then blue lighted a week later to a different hospital (about 6 miles from 1st hospital). The 2nd hospital couldn't access my records from the 1st hospital and I was there for a couple of days while they faffed around getting the info they needed to treat me properly. It must be incredibly frustrating for NHS clinical staff who are already short staffed, and who are trying to battle with systems that don't seem fit for purpose. It's easy to see how mistakes get made.

Yes the record system is crazy here and so much better in France. It was staggering that even hospital departments seemed unable to see what the other was doing.

Done 1.5 hours gardening with DH today then had a nice bath. Good to get green bin full and planted 6 lavenders and 1 jasmine. DD is doing her punting job today, was talking to me until about 2am this morning worried about insurance choice but when I asked why she said she was worried neither would have catered food and she would need to cook every meal and she wouldn't manage that. So manage to reassure her on that one. Very calm on A levels and singing to herself. I hope she decides between her insurance choices soon and gets form in, they are very similar so doesn't really matter which but just needs to pick one.

Glad the A level slog is going well @Penguinsa it sounds like your daughter is very much taking it in her stride.

A rest day for me today, I've done very little other than follow various blogs about the teams on Mount Everest. God knows why as even at peak fitness I had little desire beyond a bit of hill walking but something about mountaineering just fascinates me.

I have ordered some more kit for kayaking in Norway so I'm getting excited for that. Six weeks to go!

Well the sun finally came out here and we've been catching up on outdoor activities. I moved my big boat down the coast with a friend, and slept on her last night. That was fun and I was able to check all the systems are working. Today I entertained two little GNs who call me AuntyTop or NannyTop or AuntyDH which is very funny. They were going a pirate festival so I had them swabbing the decks in return for jelly babies. Then later I went back up the coast to the little boat to work on her and found a drifting paddle board. After some thought we decided we had to inform the Coastguard so they came out and searched for the owner. No sign of anybody in distress but quite fun anyway. Now I am home for a quick shower then back to the big boat to move her to her summer cruising grounds tomorrow. My ribs are clearly better as I have had 5 year olds using me as a step! It's so nice to be outside playing again.

@ClashCityRocker I've also had a fascination with mountain climbing which is strange because I have a fear of heights and even standing on a first floor balcony gives me the collywobbles. It's the same with Antarctic/Arctic expeditions; I love to read about them and Ernest Shackleton has been a hero since I was a child, but I really feel the cold and I know that being in a tent at -40 degrees would make me thoroughly miserable.

I met an amazing woman who leads treks in Ladakh and climbed Everest for her fiftieth birthday treat. She lost several toes and had to turn back just short of the summit as she was hypoxic and realised she might die if she carried on. She said everything is frozen so for 24 hours you can’t eat drink or pee. It sounded beyond awful. She was a yoga teacher and quite normal apart from her tolerance of extreme conditions.
Maybe that’s us! Tolerating extremes just up to the point it might kill us.