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

@MissMarplesNiece I don’t think anything would put him off. When I met him a mutual friend said to me “half man half bicycle” and I asked “which half?” He has been instructing cycling for over 50 years. It keeps him fit and healthy both physically and mentally. The only way he has got through the last four awful years is by going out on his bike every day.
He says the driver was excellent, gave him space, and tried to stop the passenger. I couldn’t live with a man who acted like that. LTB!

@TopOfTheCliff Your poor, poor husband that's horrible. What a total nightmare.

@TopOfTheCliff or anyone else who knows about these things, I've got a question about nails. My toenails are still doing odd things. My big toe on my left foot fell out some months ago and has regrown. Now my big toe on my right foot is looking very peculiar, with an expanding white patch from the cuticle going upwards. The nail seems weirdly thick maybe there's a new one underneath? I had chemo till autumn 2022 then two targeted therapies till autumn 2023, could it still be from those things?

Then my finger nails seem fragile: they split easily and are sort of bendy. I cut them short to avoid splits as much as possible because they can catch on things so easily. Same question - is this from the cancer treatments? Or lack of vitamins / minerals?

@SierraSapphire that podcast sounds so interesting. Could I possibly have the link? Thank you!!!!

@Remaker That's great news!!

Might be fungal @SummerCycling, I have it too 😭.

Here's the link - it's about ageing in general but covers cancer, I only saw the cancer clip so far, there's timestamps on this page, she's someone I trust as evidence based www.foundmyfitness.com/episodes/micronutrients-exercise-ameliorate-aging

Sorry to hear about your DH Top

Summer My fingernails were fine straightaway after chemo and all nails on feet apart from big toe nails were fine - I did have very strong nails before and used ice on them during chemo. But I have issues with my two big toe nails. I also seem to have under and over toe nails and both are damaged, one is purple with bruising and one is white. One I cut off a toe nail and found a much better one underneath. Not sure how to solve this, appears to be growing out over time and the bruising may be as I bash my toes on swimming pool floor at shallow end sometimes. I am not sure whether to try a fungal nail thing though no idea if its that or chemo or something else.

@SummerCycling I had issues with toenails thickening and discolouring post chemo- I’ve seen a chiropodist a few times who has cut back the unhealthy bits and nails are now growing better. Taken a while but a great improvement

@SummerCycling given that most of us have had the same problem it seems likely this is chemotherapy damage. With time the nails should grow back stronger. Cracking and flaking is just a sign they are weak. If they are thickened or smelly it might be a fungus. The only way to confirm fungal infection is to send cuttings to the lab for microscopy. This would be done by the GP surgery, who can organise treatment if they are positive.
I think a healthy diet and regular oiling and occasional pedicures should sort us out eventually.

I've had a good day today. I saw the orthopaedic physio who was pleased with my progress. Then I went and worked really hard on my boat and polished her topsides till she shone. I wont be able to do this after my scar revision on Friday so it needed doing now. Now I'm showered and tucked up cosily watching SYLO with Stacey Solomon. I LOVE this programme it inspires me!
DH has gone out cycling with his mates. He is bruised but there is no stopping him. I do worry he might get badly hurt one day, but I won't stop him.

@TopOfTheCliff sorry to hear about the attack on your husband. There are some total nutters out there.

I had the second lot of saline put into my chest expanders yesterday and am really sore. It hurts when I move and everything is under pressure.

To be honest I feel a bit miserable at the moment. I’ve booked in to chat to my counsellor but that won’t be for a while.

Easter was a bit of a wash out - I was just exhausted so I slept a lot, wasn’t feeling well. Think I was fighting off another infection.

I feel a bit stuck really. I’ve gone through/am going through this monumental experience only for life to be exactly the same the other end. Exact now I’m dealing with all the physical side effects from the cancer and other stuff.

Part of me wants to get back into the big life race - bigger house, bigger car. But the other half wants to sell everything and go and explore Europe for ever! I just want to sit in the sun in a European square…

Sorry, slightly (very) self indulgent post. Does anyone else feel the same?

@remaker Hope you are going well. Good that it was key hole you will hopefully recover more quickly.

@FairyWren7 I think I understand and I don't think it's self indulgent of you to feel as you do.

I want to make changes to my life but feel like I'm wading through treacle, I get so tired, so easily and even small things sap me of strength and energy. I walked around a supermarket earlier this week - not a huge supermarket, just a common or garden one. I only took 1600 steps according to my pedometer but I was so tired afterwards I had to sit in my car for 20 minutes before I had the strength to drive home.

I've got a phone appointment with my Consultant this morning. I'm not looking forward to it - he is quite brusque and he made me cry when I was in hospital. I'm feeling tearful at the thought of speaking to him. I booked some reflexology for this afternoon - something to look forward to.

@FairyWren7 i feel exactly the same as you and think it’s quite normal. Try and be kind to yourself and give yourself the time and love you need. I know that’s not always easy or practical though. I am definitely veering towards opting out of the rat race and completely changing my life and although this is possible for me, I am still a bit scared about actually doing it. The world seems to expect me to just slot back in and carry on with my old life, but I am not that person any more. I need to be brave and do what is right for me. Counselling definitely helped me a lot, hopefully it will be good for you. Take care of yourself.

@MissMarplesNiece Sorry your consultant is brusque. Mine was like this too. It’s not helpful when you just feel like crying in an appointment because of the way you’re being spoken to. I hope it goes OK this morning.

@TopOfTheCliff I hope you husband is doing OK. What a horrible thing to happen.

Sorry for the multiple posts, a bit tired this morning and my brain’s not working properly again!

@FairyWren7 I’m sorry to hear you are feeling low. I think pain makes that more likely. It’s interesting to look back at life BC. (Before Cancer). No doubt there were problems and unresolved issues that got swept away in the panic of diagnosis and the harsh reality of treatment. It seems like a golden age but it wasn’t really. We are struggling to return to fitness, to work and to financial stability and still have those issues that need resolving. Sending hugs x

I am now pretty much recovered from the hip surgery, although it will take the rest of the year to regain strength and balance on that side. Naturally I have lined up the next challenge already, so on Friday I go in for the axillary scar revision. I am wondering why I thought it was important now. I really don’t want another month of dressings and resting and being told I am overdoing it. But really this should be the last hurdle. I will be pleased I bothered eventually.
Channelling Chumbawumba. But I am sick of it all. I want to sail away on my newly polished old boat and sit in a bay watching seals and eating pork pies with ginger beer! At least the constant rain means that’s not a current option.
I have totally changed my life from BC as a busy GP to being a lazy rich pensioner still lying in bed at 11am. I quite like it!

@TopOfTheCliff pork pies and ginger beer sounds like you channelling the Famous Five.

I've just had a chat with my Consultant who told me I'm expecting too much, too soon. I thought he was going to add "for someone of your age", lol, but he didn't. I've always wanted to run before I can walk.

Hi all, I have not caught up on the full thread - immersed in work. I did read about your DH being attacked @TopOfTheCliff. wtf? Hope he has recovered from the shock. Hope everyone one else is doing as well as can be expected.

Crunch time now has come for deciding whether to go ahead with LVA surgery privately or not. Wondering how you are getting on in your thinking about this @dotty2

I ended up asking for a second opinion from the Oxford clinic. Just a zoom call. The main thing I took away was that it is highly unlikely to fix itself even if very mild and that the sooner the better for surgery. But, also that I shouldn't do anything I am not 100% comfortable doing and that the progression of lymphoedema is totally unpredictable and varies from person to person. So, I am none the wiser. I have got my swelling down to a level that is basically undetectable (after having proactively let it rip to meet the LVA trial conditions, which I dropped out of as I was put in the control group). I have been swimming every single day and sleeve wearing every day, which rescued the situation. I would like to have a chance at being able to ditch the sleeve and stop progression in its tracks. But, at the back of my mind, despite everyone saying it is incurable, I keep thinking it might just go away on its own (after all, I look normal at the moment if I take of fmy sleeve!). Agh! Just thinking out loud.

@TopOfTheCliff isn’t that bizarre. I am also channeling chumbawumba. The only issue with that song is I can’t do the drinking anymore!

The song I play when I have to get up when I don’t want to is Jump Around - House of Pain. I used to be able to jump all the way through that song! God knows what my students would think…I’ve already had the, do you like Drake miss? (It came up in an article we were reading entitled Drake’s Progress - nice little allusion there). Nah, Eminem was more my time period!

I’m concerned about what I will be like when/if I’m old and doolally. Whatever stressful things teaching does to me, like full on anxiety attacks on occasion. It also switches on the music switch in my brain - I was music free for ages while unwell. Now I’ve always got music floating around my head again.

Pain is shifting today thank goodness. I’ve hit it hard with some painkillers and a good walk in the sunshine with the dog! (And too much school work & cleaned the house)

Tomorrow I’m going to do something nice. Mooch around the shops perhaps. Got cinema and a meal out in the evening.

@tam23 thats just it. I’m so different. Physically and mentally. I’ve always been restless and feeling stuck is horrid.

@MissMarplesNiece I’ve had days like that so I empathise. I just slept most of Saturday afternoon, I was so tired. Days will come where you feel a bit better. But we have to remind ourselves that it’s small improvements.

My leg issues seem to be improving. The physio did a strength test on my legs the other day and I can push more.

However I don’t think I’m going to be able to run again. It doesn’t seem likely. But you never know I guess.

@isaxx why is sooner better than later if you're managing it and it's got a lot better? Are they referring to your situation or are they referring to people who aren't managing it and it's just getting worse? I found during my treatment a lot of of advice they were giving just wasn't relevant because they were giving advice geared to the average person and I was not the average person (anyone remember the low odds bin?!)

I've been to the funeral today of a friend who died of myeloma. I've had another friendwho died last week of secondary breast cancer too. I didn't like to mention them on here when they happened to put a downer things, but it has made me very much more aware of cancer again and a bit anxious. Other people talk about it without really being aware I don't think of the impact that it has on those of us who think it could be me next.

In more positive news DD is home for a few days and her new boyfriend seems lovely!

@SierraSapphire Good question. Why bother if I am managing it and it is improving? The idea of 'the sooner the better' is that lymphedema almost invariably progresses apparently or at best gets no worse if well managed. The damage however does not fix itself. So, any let up in management and the swelling would return. Only surgery would give a chance of being able to get rid of or reduce wearing the sleeve. Plus, leaving surgery for too long means running the risk of surgery becoming no longer viable. Basically, you need some remaining well functioning lymphatics for the surgery to have a chance of working. I have clearly been reading too much about this and probably overthinking it...thanks for replying and helping me think about it from different angles. Decion-making with such uncertainty I guess is part of medicine. Not easy! What if I am an unusual case where the problem does fix itself? I can't help but wonder.

Very sorry to hear about your friends. Aside from the sadness of losing friends, it does all hit rather too close for comfort. Glad you had a nice time with DD and boyfriend.

Are there any significant downsides of surgery @isaxx other than any surgery is a PITA? It does sound like it would be most sensible to have it unless there are any serious risks. You could be the person for whom it gets better but the odds sound low from the way that you are describing it unless there's something specific about you that might make a difference (and I don't mean here that you think you're special 😂 just anything clinically or demographically for example).

However I don’t think I’m going to be able to run again. It doesn’t seem likely. But you never know I guess. A post from 12 years ago came up on my Facebook page today - it was sleeting but I'd been out running. Oh, that feels like a century ago, not 12 years. Like you @FairyWren7 , I don't think I'll ever run again, 😥.

I tried to run Boxing Day 2022 just after chemo ended. It was a great run but it aggravated an old hamstring injury, which has been hurting since 🙄.

Bloody hell @topofthecliff I forget to check the thread for a bit and you're bloody recovered from hip surgery!

Nice to hear the progress being made and the positivity and support on the thread.

Other than a bit of hay fever I am doing good - physio has seen odd the sciatica for now and I'm working with my PT to prevent it coming back. Back being more active, playing padel etc which feels grand.

Did have an unexpected hospital stay though - 3 nights due to pelvic inflammatory disease according to them (basically an infection in the pelvis). They did a CT scan and ultrasound etc and apparently there is an abscess in my pelvis. I asked them if it could be a cancer reoccurrence (I was stage three cervical) and they said although they couldn't categorically state it wasn't cancer without a biopsy, it looked and acted like an abscess and the antibiotics bought all my infection markers right down so they are satisfied that it doesn't need any further investigation on the cancer front.

They also looked at my cervix and that seemed fine etc. and I got a finger up the bum too so that was reassuring.

I do have an ultrasound scan soon to see if the abscess has gone from the antibiotics or whether it will need draining.

Part of me logically thinks yep, all ok, the pain has gone and my symptoms have gone so it must be an infection....but the other part of me is very 'what if....'

I don't even know if the hospital I attended will notify my oncologist (different hospital) or if I should do it myself...honestly the communication whilst I was there was shocking.

@SierraSapphire sorry to hear about your friend. I think it hits differently once you've been through cancer yourself.

@isaax what are the cons of the operation? How much is it affecting your life now? I have mild lymphoedema in my leg (although it's hard to tell what is DVT damage and what is lymphoedema) but it's manageable enough to keep doing everything I want to do and this far isn't showing signs of getting worse, so I've left it as I really can't face more medical stuff....but that's easy to say when the only impact is mild discomfort and aesthetics!

Ow @ClashCityRocker that sounds painful and unpleasant. How weird to get an abcess out of the blue. No wonder you are unsettled.

I’ve overdone things again trying to get jobs done (boat polishing) before I am out of action again. I ache all over tonight and can hardly manage the stairs. Early bed I think as I have to starve from breakfast time onwards. Hospital admission is 12 noon and home later tomorrow if all well. Hopefully @ClashCityRocker the next time you check in I will be recovered from this one too!

I got a finger up the bum too so that was reassuring.

Only on a cancer thread! That does sound traumatic @ClashCityRocker - I fully know the feeling that anything could be a sign of cancer, abdominal pain, is it the cancer? Cough, has it spread to my lungs? Achy hips, is it in my bones? It's horrible and pervasive.

I actually managed to submit my Master's assignment last night a week early, but I think I'm still going to have to work on paid work over the weekend a bit, hopefully the last weekend for a while I will need to do that. I've not got to the gym much this week so hopefully visit tonight for yoga and then each of the other days for something. I haven't got any other weekend plans so hoping to chill a little bit as well.

Also trying to plan a holiday with DD in June, although someone's not getting back to me about a date for something which is a bit annoying. DD wants to go to Italy, but I think it's quite difficult to find cheap beach resorts in Italy and hotels with a big pool area, so we might just pick a date and then see what's available anywhere on that date.

I've been away for a few days - long road trip to take DD2 to a uni open day, combined with a bit of countryside and culture. But mostly lots and lots of driving, foul weather and a massive pot hole which ripped a tyre to shreds. (I think it had only just opened up because of the rain - there were at least 10 other cars stopped with their hazards on within a couple of hundred yards. It was completely unavoidable and made a hideous noise when we hit it- I thought it was going to be much worse than a burst tyre.) So I'm exhausted rather than relaxed by all that, but at least DD liked the uni and came away with a lot to think about, so that was a win. Just catching up on all your news - sorry to hear about the abscess, and the road rage and the existential crises. Life is full of unexpected potholes, isn't it. Sending strength and solidarity.

Anyway, @isaxx I have decided to go ahead with the surgery. The only downsides are the enormous, eye-watering cost, and the potential for it to offer no benefit. Also, because it's a relatively new procedure, there is no data yet about how long any benefits you do get might last. But I am getting an increasing amount of pain - for example, if I don't wear my sleeve while I'm doing housework first thing in the morning before I've had a shower, my arm gets really sore. So I think if I don't have it done, and it progresses, I will find it hard to live with, and I will always wonder 'what if...'. DM me if you'd like to chat about it more. Because they are such a small practice and I'd be talking about specific individuals, it doesn't feel right to talk about it in too much detail on a public forum.

I've got lots of work to do now having had a few days off, and then taking DD1 back to uni on Sunday. Really hoping the bad weather passes by then!