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

People don't recognise me either, and my hair isn't massively different, the same length except I have a fringe and it is a bit wavy. I hate it. I mean, I don't hate my hair, I like my hair, I hate it that people don't recognise me, it's really awkward. I just say "oh yes lots of people don't recognise me now I have a fringe" to make them feel better but it's that feeling of walking up to somebody and you can tell that they haven't recognised you because they've just looked away or they're just staring rather than smiling and saying hello, and you have to stand in front of them, waiting for that realisation. I didn't think as far as growing hair back, but it's been much more difficult than I expected.

Glad you're home @MissMarplesNiece - it's been a big surgery, take it easy!

I would like to do the Camino at some point @RedRosesPinkLilies - I went through a phase of reading lots of books about it. Not sure I could sleep in the dormitories though!

@SierraSapphire - neither could I
We are doing it through an organised company- so rucksacks moved on. I’ve paid a little extra to get my own room - as sometimes I’m restless due to neuropathy and pain in my feet. I can also barely sleep with my husband anymore due to his snoring. (Sleep divorce its apparently called). A dormitory would be my idea of a nightmare!
I know this is cheating, but I think I’m entitled too.
I can let the thread know how I get on

Lovely to see so many on here and welcome to the joiners.

Pancakes tonight. DD was due to be out with friends pancake making but apparently her one mock which was postponed is now tomorrow so she's here and will be revising. But we will be making pancakes so she won't miss out on those and tomorrow is the last one.

I finally connected our Bluetooth scales and got the results. I look so different to pre chemo, you wouldn't recognise me either and it makes me quite sad that cancer treatment has done that. But things are getting better, the weight I put on with cancer treatment is shifting with diet and exercise and now am at a BMI of 26 and just need to shift 5.4kgs. I have masses of hair but not that long still, and I miss my long hair from before the most, its partly as I kept cutting out the curls which were really unruly and reminded me of chemo. Its just below my ears now slightly longer at the back, it is just wavy now so just need to grow it down. Its so thick, maybe twice the thickness of before. Nails are strong, eyebrows are fine but I didn't take the abeb.. drug, just Tamoxifen. According to the scales my muscle mass is excellent as is my bone health. I am doing over the 3 to 5 hours exercising a week so very happy with that. Appearance is getting much better and can sometimes see glimpses of pre cancer me.

So glad you are home MissMarples and glad you had a good holiday Roses I am confused now as I there are two roses and I thought there was one but I am easily confused at times now. 😂I think I have worked it out.

Yes it’s an interesting question isn’t it? I’m seeing my breast surgeon next month to get the sign off from Anastrazole, I’m going to ask her whether it will make a difference.

Welcome @Ikeameatballlunch nice to see you here. The rollercoaster ride is exhausting.

@MissMarplesNiece take it easy. You don’t have to fight all the time. Resting is good too.

@Penguinsa what can I say? You get the award for progress 🏅I’m going to try to catch you up now I am a bit more active. Those annoying scales give me an excellent bone mass but everything else is depressing. I am 31 percent lard currently 😂 at least the BMI is coming down slowly to 28.5 . My target for this thread is to get my BMI down to 25.

Just listening to the Radio 2 tributes to Steve Wright. Along with grieving my lovely MIL I am in tears, but happy ones of good memories.

Ooh and welcome @MissyB1 and sorry to hear about your joints. What helps you? I find exercise is the best thing, along with heat like the sauna and hot tub. I’m trying to get my weight down too to ease the load on my feet and knees. Also I take turmeric and glucosamine.

@TopOfTheCliff I do yoga and Pilates which help my shoulder and upper back pain. For my achey legs (and restless leg syndrome) my Gp suggested a low dose liquid iron, ( I take Floradix) it definitely helps with the restless legs.

Yeah that's how I'd probably have to do it too @RedRosesPinkLilies - definitely keep us updated! It's a good time of year to go I think isn't it?

I think my next big trip will be to Australia to visit family, probably not this year, next year though perhaps. I'm off to Manchester this weekend, will have to make do with that for the moment!

@Penguinsa thanks for the advice re hot flushes. @TopOfTheCliff thanks for the new thread.

Summary - Diagnosed with breast cancer, hormone positive, her negative at the end of September just gone. Had a lumpectomy, followed by radiotherapy. Luckily it hadn't spread to my lymph nodes, the post op biopsy showed a couple of dodgy cells but they decided to treat it as a negative. Started on Tamoxifen after my surgery, have now been on it for just over 2 months. Will have to come off it to see if I am through menopause towards the end of the year. If I am, I can go on Letrozole. I know I've been incredibly lucky and have got off very lightly. I'm struggling a bit with the hot flushes and disturbed nights, trying to look after my body a bit better overall. Sending love and strength to everyone.

My oncologist told me that the AIs can cause a lot of joint pain and its partly why she recommended I stay on Tamoxifen though its a bit of a balance as AIs have a slightly higher survival rate. But my oncologist was worried about using them within 2 years of going into menopause saying they don't work at all if you are not really in menopause though I am 100% certain I am. But I don't really want joint pain and she seems fairly sensible so just following her advice on that.

I am sure once fully recovered from your hip op you can overtake us all Top Infact you have probably overtaken me this week as after Kew 2 hour walking on Saturday apart from an hour or two cleaning I've not done anything active as DH has been working really long hours and he drives me to the pool. Also someone was sick in the pool on Saturday and they went into great detail in their posts and its kind of putting me off. Plus they said its very busy this week, guess as its half term in lots of places. DH has only just finished work at 3am! Working from home at least.

Hope everyone had a good Valentine's day if you celebrate. DD was supposed to be out yesterday night on pancake day but then suddenly had last mock scheduled today (well yesterday now) so stayed home to revise but we had some lovely pancakes. I had a savoury and a sweet one. Still its her mocks over now and the universities that were her first choices for firm and insurance have offered so going well for her. I got a few nice things in for Valentine's Day for DH and the children, some chocolates and biscuits and hot chocolate and had a few biscuits and one chocolate myself.

Been looking at the Isle of Skye and the Jacobite Train, would love to go there but looks like Jacobite train is in some dispute over doors and may not be allowed to operate. I now have a very exciting 48 hours of collecting all my urine (nice) for a endocrinology test, think its due to adrenal tumour (benign) and maybe testing for cushings as a few cortisol results have been high, sure its just stress but they keep adding tests. Going to make it very difficult to go out, started at 9pm. Though thinking about going to a National Trust place with a lovely garden at the weekend to see the snowdrops. At least I will finish 9pm Friday. Then take to hospital on Monday. Such glamourous things we go through. Still not heard back from hospital re MRI / mammo but will get this test done then chase that.

@penguina that's good news about your DDS offers.

I nearly had a pancakeless pancake day but was saved by the sudden appearance of the crepe van. Classic lemon and sugar for me!

Physio went ok yesterday. Apparently I have 'true sciatica' which he was quite excited about as apparently most things people think are sciatica actually aren't. I was less delighted at this news - had hoped it was just a muscle he could kinda shove back into place. Some hands on stuff, lots of exercises to go with. He can't give me much indication of how long it will take but reckons I might be up to more active exercise in the next few weeks.

A bit meh about it but unreasonably so I guess. Ever the optimist I think I was hoping for some miracle cure there and then! I think the stretches are helping a little but improvement is so incremental it's hard to tell.

That's one of the toughest things I find. Before the cancer, any malady I had was of the type that you'd maybe have a bad day or two with it but then would be noticably better and soon a distant memory.

Now I can only measure improvement in terms of weeks or months so having a setback like this is a bit galling!

@ClashCityRocker it is not good to be a special case or something rare. I just want to blend in with the masses of mildly overweight unfit people who drink more than they should and vow to be healthier. Instead I take enormous care to eat healthily and drink little alcohol and exercise a lot to try to keep the bastard cancer away. Luckily I feel better for it and quite like my new lifestyle.
I hope your exercises do the trick. It can take a couple of months for sciatica to settle.
Yesterday was a gentle day as DH is feeling rough. We went out to lunch at a local bistro as a Valentines Day treat. DH was meant to be cycling later but didn’t feel up to it so we drove over and met his gang at the pub for a beer. FIL is looking like he won’t last long but he does this then sits up and eats a hearty meal. Anything might happen. We are rolling with it.

Sorry about the sciatica diagnosis @ClashCityRocker and that it sounds like it's going to be a long haul. I also long for pre-cancer me when you could mostly just assume any minor thing would get better in a day or two. I find it so hard to calibrate - I went for a dental check up yesterday because of some minor toothache I would previously ignored. Turned out to be nothing, but the bisphosphonates and not being able to have major treatment are making me super-cautious.

In positive news, I had a lymphoedema appointment this morning and both good and bad arms have reduced in volume, the bad by more than the good, so the relative swelling is less than it was. I haven't lost any weight but I am obviously getting more toned overall because of the swimming, so I was pleased about that as well as the swelling improvement. OTOH, it makes me less sure about going ahead with the private surgery and parting with a huge amount of cash, if it might improve anyway. Sigh - so hard to know what to do for the best.

Thinking of you all.

Sorry about the sciatica diagnosis @ClashCityRocker. I completely understand the feeling of impatience about new things popping up and disrupting your progress.

Good news on the lymphoedema improvement @dotty2 that’s brilliant!

I’ve had a really blah week. Booking my hysterectomy was my biggest achievement haha. Going out with DH tonight which will be good. Was also planning a night out with friends on Saturday which I was really looking forward to because they’re a lot of fun. Then one of them has announced she’s not drinking in Feb so night out has been scaled back to just quiet dinner somewhere. It’s the first time I’m seeing them since I got the all clear on my liver and can have more than one glass of wine and without wanting to sound like a lush I was looking forward to having a few drinks! She just breezily announced we can go out again soon and that made me sad for the days when I could assume everything will continue to be fine. In March I have a CT scan and more blood tests for my cancer screening and also liver function. And then a hysterectomy in April which may have to be open surgery depending on how many adhesions I have from my bowel surgery. So I want to live in the moment!

Apologies, so grumpy. Maybe the menopausal fury has finally caught up with me. Or more likely a case of the post-cancer blahs.

Aaah @Remaker I might not have been able to resist a snarky comment to the friend. She is blissfully ignorant of your situation. But maybe that’s for the best.

Thanks Clash Sorry to hear about the sciatica diagnosis.

Dotty Glad the lymphoedema is improving. Maybe wait a bit to see if continues to improve before paying to go private. I am also super careful with teeth now, you hear so many horror stories re dental after chemo though mine aren't bad at all. Just get the usual flossing lecture.

Remaker Sorry to hear you had a blah week but hope you enjoy Saturday anyway.

Hope your DH feels better Top and you are continuing to recover.

Had a very meh week, after a lovely last Saturday at Kew and Toby carvery, done very little this week with DH working silllily long hours. Done some hoovering and cleaned a few things but that's the extent of this week's activities for me. 😂And feeling a bit meh about that but the less you do the less energy you have. And I have developed a terrible habit of sleeping the day awake at night and having trouble shifting it. I have at least done my 48 urine test which pretty much meant 48 hours in anyway. Need to take to hospital on Monday but at least its done and need to collect the Tamoxifen.

DD is the only one with an exciting life here at the moment - she has her 3 preferred uni offers in, got an offer holders day invite for Oxford Uni in the week she will go to at Easter, then finished her mocks this week, boyfriend had offer holders day at Durham then had Valentine's meal with her and gave her a big bunch of roses. She has been working today on the river. Its back to not flooded but still needed two of them to punt a boat. Hopefully going to a NT place for a walk amongst the snowdrops tomorrow.

@Penguinsa I think your DDs life sounds wonderful. So much talent and lots of fun ahead for her!

I am staying the weekend with my DD as DH is away. We walked 4km on the beach and they have fed me delicious healthy veggie food. I’m very chilled! We watched First Dates and sneered in a judgy way at the hopefuls. It’s all a nice break from reality.

Hi all, been away in Sydney for a few days which has been wonderful! But from tomorrow, no excuses, no sugar, low carbs, more movement!

@MissMarplesNiece glad you are home. How are you going?

I have to say I have loved Sydney, it truly is a fantastic city! I rate it up there with London and New York. It’s been hot the last few days but I’ve done pretty well, lots and lots of walking.

The opera house and The Magic Flute was wonderful and we caught up with our cousins as well and had a crazy day out with them and their kids which was great! Aside from pastries for breakfast I’ve been quite sensible!

Hope everyone is going ok and are enjoying your Sundays!

@FairyWren7 I took my DC to Sydney when they were young teens and we all loved it. We got last minute tickets for the Pirates of Penzance at the Opera House which was utterly magical, and walked over the Harbour Bridge. Happy memories!

I walked another 4km this morning with DDs dog. I am feeling well and stronger every day but really have to hold back and not do too much. Three weeks tomorrow I will see my orthopaedic surgeon and hopefully get the okay to weight bear fully. Until then I must be good! Also I am still having anticoagulant injections which are nippy little bastards. I am a bit bored sitting around but maybe I can get more motivated to knit or read. I just want to get outside and exercise. But time will pass…

I am congratulating myself on a super productive weekend. I’ve been for a run and a couple of walks, finished making a huge pair of curtains for a bay window and got them hung (which felt like a workout in itself), done a bit of tidying in the garden and been to the theatre with DH. I am knackered but in a good way. I planted some sweet pea seeds while I was gardening and reflected that this time last year I had just finished chemo and had decided I wasn’t going to attempt growing any thing from seed. So there is progress!

Wow @dotty2 that was an amazing weekend! 🌟

Thanks for the new thread @TopOfTheCliff 😀

You inspired me to book tickets to see the orchids at Kew, @Penguinsa 🌺

We all had stinking colds over Shrove Tuesday so didn't bother with pancakes. I think I feel like having a Postponed Pancake Day soon! 🍽🍹

@ClashCityRocker Sorry to hear about your sciatica. I know exactly what you mean - everything now takes ages to improve, presumably because chemo etc etc etc /attacked / aged our bodies so much. Plus the cancer treatments have caused a lot of degenerative changes in my body, especially bones and I suspect heart too (my GLS dropped a lot and the LVEF quite a lot too). My MRIs show loads of bone marrow oedema (?) I really hope your sciatica starts improving soon.

@MissMarplesNiece Good you're back home. It is such major surgery, I hope you can take all the time you need to recover at your own pace without any pressure.

@Remaker I can relate to the 'blah' feeling, plus you've still got quite a lot of treatment lined up soon by the sounds of it. I hope this week will be a bit better

@isaxx Not sure where you wrote it, but I remember a recent post of yours about lymphoedema, about pausing treatment to let it get worse for the trial but then not being offered the surgery after all. I just wanted to say how sorry I was to hear that. I have chest oedema so totally understand the frustration. What treatments have they been giving you? I've had two different oedema people treating mine at hospital, and one is so much better than the other. They said it's two different schools of lymphoedema treatment - I much prefer the more robust one to the very light touch. I could see visible improvement after the first treatment by the more robust-style practitioner. They said the chest is a particularly awkward location, although I actually think arm oedema would be worse to have.

Love to all xxx

That sounds like a great weekend Top and thank you.

Well done on productive week Dotty I have had an unproductive one though DD and DH had very full on weeks and today I sorted two rooms out downstairs (kitchen and dining room) and also have hoovered upstairs.

We have the cleaners coming next Saturday which will be good though its already not bad and a bit borderline whether we need them. Though Floof spreads fluff at a rapid rate.

Enjoy the orchids Summer

Glad you had a nice time in Sydney Fairywren We went for 3 weeks in Australia in 2018 including Sydney and the Great Barrier Reef / Daintree / Atherton Tablelands and we all loved that holiday though it was in August so Sydney wasn't at its finest weather wise so it was short there but brilliant everywhere else for weather. Saw so much wildlife.

Going to take endo tests to hospital tomorrow and hopefully get to a NT place to do the daffodil walk DHs work permitting.

@SummerCycling thanks, and sorry you are dealing with chest oedema. Interesting to hear that the more robust massage works better.
I have just been managing with a compression sleeve and swimming, like @dotty2. I had some noticeable improvement after I started with compression and swimming. So, it was quite disappointing to let it slide in order to get onto the lva surgery trial, then for it to have been for nothing. Bad luck. Someone has to pull the short straw and be allocated to the control group. I have since managed to get the swelling back under control and am not giving up yet with surgery. Will still try to persuade my workplace insurance to cover surgery privately, once I get my consultant to write a letter supporting my case. We'll see. Trying to take this one step at a time.

In the meantime, I have other crap to deal with. Finally booked in to have my ambiguous thyroid nodule removed in a week.

Never sure which thread I should be on, given this never ending saga of medical things to still deal with...

Hi, I had DCIS 2 years ago, er+ (8/8) her-, no lymph node involvement so didn't need chemo, "just" a single mastectomy. I was offered tamoxifen but decided not to take it after speaking to the oncologist as the side effects were deemed more risky for me than the BC reoccurrence reduction rate. Particularly as I have a family history of womb cancer which it increases the risk of. Just wondering if anyone else didn't take tamoxifen after BC? I seem to be one of very few, although I suppose it does depend on the type of cancer, DCIS being one of the least aggressive.

I don't have a huge amount of physical effects except that I seem to get tired more quickly and my muscles ache a lot more after exercise, but I suppose that could be age (47). I do struggle a lot with the mental health side effects after experiencing a lot of different health issues one after the other. I'm left thinking what next and expecting bad things to happen all the time. It frustrates my DH as he is a total optimist but I just feel like my brain has learned that bad stuff happens and it can't unlearn that. I've tired counselling, CBT and nothing really helps.

I have a friend who is also a BC survivor and she is the opposite. She has a new lease of life and is really carefree and positive. I feel like I must be doing something wrong!