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

That’s great news for both of you. Let’s hope we can keep the run of good news going.
Today I went to inspect my boat and climbed up the ladder carefully. She was dry and warm inside although covered in green stuff outside. I have been making job lists happily this afternoon. I have got three weeks till my small scar revision operation which will slow me down again. The allotment is calling too. It’s lovely to be busy and not bored!

Hooray @SierraSapphire so pleased for you. For us!!

My dr asked me how I was while we were still in the corridor. He was smiling so I assumed that was good news but still! You tell me how I am, that’s why we are here! There was a longer than usual wait between the patient before and me being called which sent me into a tizzy. In reality he was probably nipping to the loo or phoning his wife.

Great news @TopOfTheCliff @Remaker and @SierraSapphire! Long may it continue.

Had some friends over I hadn't seen in ages. Indulged in cheese, wine and far too much cake. Good news, I gather we all agree, deserves cake.

My DD is working in a new (to her) hospital in the oncology clinic. She says it helps to read up the notes for the patients she will be seeing the night before as they are all new to her. There is nothing worse for doctor or patient than the sight of the doctor scrabbling through the notes to find crucial results. She is then ready with the appropriate greeting and the up to date plan. I think she is great!

@TopOfTheCliff she sounds great indeed. One of my friends went in to receive her biopsy results from her surgeon, a professor no less, who told her it was a small cancer and would only need surgery, possibly some radiation. Relieved she left, only to be called back in again because he had read the wrong person’s results! She in fact had two tumours and needed 20 weeks of chemo, surgery, radiation and hormone therapy.

Excellent news re positive scan results! @Remaker @SierraSapphire @TopOfTheCliff

@isaxx thanks for the info about your diep experience. I’d like not to have to deal with anything like this again! So maybe diep is the way to go. See what the cardiologist/surgeons say.

I’m now on a second course of antibiotics for the sinus/throat thing. Very glad it’s Friday!

Be lucky all! X

That's terrible about your friend @Remaker

Good news, I gather we all agree, deserves cake.
Pizza for me! Used to be my favourite food, but now it is only a very occasional treat. Although I do occasionally have a croissant as well.

I'm delivering a workshop at an event today, it's in the area of work that I have pivoted my business towards during/after cancer, so I am pleased that I'm getting somewhere, although I normally go to the gym on a Friday afternoon! I'm booked into a yoga class later though.

Hope your workshop goes well @SierraSapphire I always find them stressful but then always (or nearly always) enjoy them too.

Feeling pleased with myself as I’ve swum 2 miles this week (over three sessions) and managed 10 consecutive lengths of front crawl this morning. I will try not to celebrate with cake

Sorry about the infection @FairyWren7 Hope it passes soon

This is an odd thing and I'm curious whether it's experienced by anyone else on this thread: Since my surgery I hate touching my body, so much so that I find myself reluctant to have a shower.

Sorry to hear that MissMarplesIs it a kind of hating your body post cancer treatment thing? I am fine with touching and showering but I, and a few others, had kind of a hating my body / anger with self for body thing after treatment which never had before. I think it's because my body reminds me of cancer treatment, the short hair, chemo curls, chopped off breast, scars from surgery, weight gain for first time in life, face swelling with steroids and also I went from looking attractive with little effort to looking like a bus had run over me and it was just another thing on top of everything else. Things which can set me off mirrors, photos, people's comments, and seeing things like old swimming costumes I can't use now or hairbands I can't use. I get so angry with myself and feel so worthless but was shocked how badly I got this since previously never used makeup and certainly wasn't someone who would have been getting expensive purchases on style and beauty. Try and be kind to yourself if it's that and ignore the bad thoughts. I am improving but that's partly as my body is improving with my hair coming back and losing the weight gain. There was a lady on here before who would not let her DH near her after treatment, that maybe similar.

I do find swimming helps. It's odd though some people seem to come out confident but I guess it varies what people had, some had both breasts reconstructed or no chemo or short hair suits them. I hope by end of 2024 I will look a lot more like I used to, am about half way there now but need diep, hair to grow more and to lose 5kg still. I have done well on exercise and weight loss though last few weeks weight has been stable due to cake, hot cross buns and shortbread biscuits which now I must ban again. 😭

I definitely remember this, for the first 18 months or so after my mastectomy I hated touching or looking at my body. Unfortunately I had to massage my scar every night because the scar tissue was very tight. Hated doing it 🙁
But I did eventually move forward from that, I don’t care what I look like so much these days.

@MissyB1 My GP told me to massage my scar, but I can't bring myself to touch it.

I had a physio the first few months and she taught me to do it. She was really patient and sympathetic, she knew I was struggling.
I'm sorry I know how hard it is. You will get past this stage, your body will eventually start to feel “normal” again. Scar tissue just feels so weird at first.

Sometimes if you phone your hospital team they can help MissMarples

When I touch were I was operated on which isn't often I don't look which helps. Or would wearing gloves help so you aren't directly touching? I don't think I was told to massage scars and mine have gone now.

Hello

I'm a newbie on this thread, late 40s, Bowel Cancer diagnosed September 2023. Graduating from the main cancer thread with a somewhat stunned expression on my face and totally weirded out but apparently I don't have cancer any more. Still recovering from colon resection surgery 2 weeks ago (which followed on from some rather unpleasant months of pre-surgery chemo) so not exactly in the prime of good health but things are obviously looking up. I just had a phonecall from the oncology nurse saying that they have finished analysing what was removed and they are confident there's no spread.

Not really sure how to process this, or what to do next. Think I'll have a read through this thread and see what others have said.

Congratulations @HohiyiKozbevi for making it here! That sounds like great news (in the scheme of things!) Recovery is still a headfuck and definitely isn't linear. Even good news can be disorienting and take some time to integrate. You'll gradually find ways to help to process things and cope, but it takes time. This thread is great!

@MissMarplesNiece You're still pretty early days, is it still sore? It might be your brain's way of making sure you're treating yourself gently as you heal.

Welcome HohiyiKozbevi That's great news. I think at first it's just relief and then gradually starting back and finding a new normal.

I found exercise and days out / holidays helped my recovery the most but it is an ongoing process. I finished in Aug 22 apart from Tamoxifen and reconstruction to come but it takes quite a while to get back from chemo or bigger surgery that alters appearance. But it's lovely not to live in hospital and to be cancer free.

It is a really good thread, everyone has different experiences but there's generally a few people who will have the same to discuss things with. And can discuss ongoing tests, things going well, things that are difficult with people who understand.

Just spent 1.5 hours cleaning the kitchen and next room and then a nice bath.

@MissMarplesNiece im exactly the same. The bathroom mirror is the worst. I’ve trained myself to just look at my face. Sometimes I look, but it’s difficult. I think it’s an area I need to work on. When I’m clothed I can forget about it to a certain extent.

I dream about being young frequently.

But our bodies aren’t perfect but are what our minds inhabit, it’s just a vehicle for a brain really isn’t it? Or a soul if you believe.

I think being kind to your body starts with positive self talk. Something I need to remember to do.

Welcome @HohiyiKozbevi - it’s a good, chatty supportive thread. It’s been so helpful in reducing that feeling of isolation that cancer and treatment can bring.

Lots of useful knowledge here as well which makes the journey a bit less tough. X

Thanks for the welcome.

One question I have - I didn't lose all my hair in chemo but it's gone very thin and sparse - not quite thin enough that I have any actual bald patches but I definitely look like someone who has lost a lot of hair. If that's how you were a few weeks after chemo stopped, did it stay like that for months/years or did it recover and grow back? As I'm late 40s so perimenopausal I ecpect hormone levels will affect it too. Any guesses as to what I can expect?

I did chemo in March to July 2022 and mine thinned in that to about 40% with patches and after it initially grew straight then new hair that came in was chemo curls after a couple of months and very thick but have had to cut old hair off as had very thick hair at top and thin at bottom. Now it's very thick still but still just an inch past ears as the curls were very uncontrollable so had to have them cut. It's now going wavy rather than curly and by end of this year think will be back to as before. I have to get my hair thinned its so thick.

I cold capped and probably kept around about 40 to 50% as well, I'm now 16 months on my hair is looking pretty normal. It is difficult growing it out because you end up with two different styles, you've got the old hair that stayed, which in my case was highlighted and straight, and then the new hair growing in, which is obviously a different length and greyish and wavy. It was okay, but it probably took a year or so to feel that it was almost normal. I can't remember when I stopped wearing my wig, maybe after about four months.

That's so good your hair is back to normal now Sierra I wish mine was back though it's OK at least now but the short hair I find is ageing if you are growing it long, looks like 1980s aerobics instructor hair. Mine came in all brown but 2 to 3 inches thick on the top and it was just half an inch on the bottom though maybe I should have worn a wig or hat at the start and not cut off some chemo curls then it probably would be chin length now. I did see some videos on people who had styled in to look nice but it seemed a lot of faff and looked like they spent an hour a day doing that. Some people get very stylish short hair but it wouldn't suit me and prefer long.

Lovely spring day by the looks of it. Have a good weekend everyone.

Actually, to be fair, it's not quite back to normal, I haven't been able to afford to get it cut, so the chemo curls are all over the place and my fringe is wonky because I cut it myself with kitchen scissors after getting annoyed that I couldn't see anything whilst doing yoga 😂, but it would be pretty much back to normal if I could afford to get it cut!