The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

Just catching up.

@MissMarplesNiece , a Whipples is a huge procedure. I know the recovery is very difficult. So it’s really not surprising you should be anxious. And I think the cancer experience throws your anxiety thermostat out as anyway, nothing is as it was before. I had a totally routine oncology appointment on Friday, just to check in on my adjuvant drug treatment, routine bloods etc, and had a long wait. By the time I went in I could feel my heart racing and felt tearful. Which made no sense at all. It’s being back in that hospital, revisiting the shock and vulnerability. And I think when you are first diagnosed it’s easier to have a ‘bring it on’ attitude to treatment because your instinct is to get on with fighting it. But it must be different having to face surgery again having recovered once. That probably doesn’t help much, but I hear you. I’m sorry you don’t have anyone to talk to in real life. Sending strength.

And @TopOfTheCliff , I’m so sorry to hear about your family loss, and the horrible shock for your DH.

@FairyWren7 I like your aims for the year - I may "steal" them when my surgery is out of the way. I'm going to take up your suggestion of having a reward for when I get out of hospital - something pampering, I think.

@Penguinsa There are few things worse than insomnia and the effects it has on mind and body the following day. Is it your DH who's the pianist? I'd love to learn to play.

@MissMarplesNiece you wouldn’t be considering the surgery unless you were hoping that the outcome will make you have a better quality of life. I’m guessing there isn’t anything else they can do about the recurrent infections? Antibiotics? I know it’s not the same thing but I was reading about vitamin c helping with interstitial cystitis I think it was. I keep feeling like I’m getting issues in that area as I think I have adhesions. So I’ve been drinking loads of cranberry, taking vitamin c and taking the sachets you get for cystitis.

I’m sure you have checked every other possibility. It’s normal to be anxious. Before my double mastectomy in July I was in a dreadful state and nearly didn’t go through with it and I’ve had a lot of surgeries. What can you do to settle the anxiety? Are you on any meds? Valium before you have it? Distraction.

I’ve had quite a lot of pain today and feel quite miserable. Hopefully this will pass.

@FairyWren7 Sorry to read about your pain - pain is so wearing, I hope you start to feel better soon.

I currently take a rotating course of 3 different antibiotics which often don't work. I hope the surgery will put an end to that. Goodness knows what my gut flora is like - none existent I imagine. I was drinking my breakfast kefir last week thinking "this is probably pointless because all these good bacteria are very shortly going to meet a dose of ciprofloxacin".

I keep thinking I'll phone up and cancel the surgery. I wonder if I call my GP tomorrow he'd prescribe some valium to see me through Monday & Tuesday.

@TopOfTheCliff so sorry for your loss. You have so much going on. I hope we, here, can be a support to you, as you have to us.

@FairyWren7 sorry you’re in pain, I hope it gets better soon.

My aim for this year is to figure out what I want to do with my post cancer life. Not a small aim, but hopefully I’ll get there! I’m considering an huge career change but I’m not 100% sure it’s the right thing to do. Also, to get back to my pre treatment strength and fitness. Finally, to focus on myself a bit more- something I’ve never been good at but I’m learning to be a bit more kind to myself now.

Thanks @tam23 that is kind. I am in good shape considering last week they chopped my leg off and reattached it, as DH describes it! He seems okay too considering everything going on.
Have you considered some coaching to work out what you want next? My IG feed is full of Life after Cancer coaching advice. My DD1 uses this sort of thing often and finds it helpful. I have to say my limited experience was lovely, talking about myself and my plans self-indulgently, but these days I am a jolly pensioner with no goals except more fun in future.

@TopOfTheCliff Glad you are doing so well. It feels like you’ve just had one thing after another. What a lovely way for your DH to describe it! I’m glad he’s doing well as he’s had so much to deal with. I sometimes worry about my husband, as he just tends to bottle things up, whereas I am accessing psychotherapy and a group after cancer course, which are both really helpful. Yes, coaching is a good idea, I hadn’t thought of that. I’ll definitely have a look into that.

@tam23 my DH is not a bottler. He is unfiltered so if he has a thought it pops out of his mouth. Our friends have heard every gruesome detail of my treatment and have kindly(!) let him download on them. I think it stops him getting stressed out, and as long as he can get out on his bike every day he is a happy bunny. He is the nicest man ever and I am sure we will get through the next few months okay despite everything. I’ve had psychotherapy in the past but I find all I need these days is my mystical woo yoga class.

@TopOfTheCliff I’m glad your dh has people he can talk to. He sounds like a lovely man. I’m with you on the yoga too. It’s definitely kept me going through the past few months of havoc! Not being able to practice at times during treatment was definitely one of the hardest things for me, as it’s what keeps me sane. I am working on building up my strength and stamina and how to get back to my pre treatment practice, although I have accepted that some things may be different, at least for a while.

Yes MissMarples Its DH who plays the piano and loves them, has done since a child and has piano lessons once a week, in a piano club, has had several pianos including a grand one though that is currently not here as its too big. When we go to National Trust properties he will often ask to play there's and then gets lots of adoring National Trust lady volunteers watching him. My old university has piano concerts as well and I take him to those and he's very happy about that and can do all the piano talk. Hope you feel better about the operation soon, its so scary pre an op, I am like you (unless its something like to remove cancer where its an obvious yes) and would be planning to cancel a few days before but then would go ahead in the end.

I have stopped caffeine and seeing if that helps, seems to a bit. I went back swimming today, not been since Monday and did 100 lengths and jacuzzi despite feeling a bit virusy and very tired was half asleep on some of it but feel better for that. Had a coffee with DH there which was nice.

Hope recovery continues OK Top

Hope your pain is better Fairy

@SierraSapphire Thanks for speaking up on the HRT thread. I have nothing against it - but think women should be more aware of the risks, and that it should be monitored more closely x

Yeah @RedRosesPinkLilies - I don't always comment, but I saw yours, so I added mine! It does annoy me the overselling of HRT and the minimising risks, as I'm not sure I should ever have been put on HRT in the first place and it almost definitely made my cancer worse, I might have got away with no chemo without it. It especially annoys me where someone has said they've had cancer and they don't want to take it, but people comment and say go and look at the Louise Newson website because you can take it with cancer sometimes, which I guess is technically true, but after someone has said they don't want to take it why do other people seem to assume they know best. For me, it was because I don't think HRT was working as it should've done, but nobody monitored me or took enough of an interest to pick this up, even when I mentioned it. I do wonder whether this will become another medical scandal in a longer term.

Nothing much to report here. That’s good isn’t it? I walked about 500 yards up the road and back. I’m in very little pain from my hip and just taking paracetamol now. It just feels like the muscles and tendons are a bit tight which is probably true. Patience is a virtue! I did manage to balance a watering can on the handle of my crutch and water my house plants today.
I’ve been listening to the BBC reports of King Charles having cancer and their idiot’s guide to generic cancer treatment, while not knowing what type of cancer he has. Poor chap, it just shows it doesn’t matter how rich and powerful you are, nobody is immune from it. I wish him well.

@RedRosesPinkLilies @SierraSapphire There was an interesting programme on Radio 4 last week - Tuesday or Wed evening - which was discussing menopause and HRT. It was very interesting with the doctor (female) in the studio discussing how many of the claims being made for HRT don't stand up to scientific scrutiny. I only heard the last part of the programme but she was concerned about how commercial interests were misinforming women.

Those HRT threads where HRT is the answer to everything if you are female and 30 to 60ish are annoying - well done for speaking out.

Well done for the walk Top

My sleep is still really awful even by my awful standards, awake all night then eventually get to sleep around midday then wake up at 6.30pm. Yikes. Call DH who is also asleep who wakes and goes no I should be at my piano lesson now. 😎So he rushes off saying order an Indian takeaway to me so done that. I'm going to continue no caffeine though DH appeared with a cup of tea for me this morning which was lovely. I am very lucky to have such a lovely DH but he is also bringing me buttered toasted hot cross buns which are delicious but slowing my diet right down. I am still on slightly below calories but only at about 200 a day less so scales are just staying stable but hot cross buns and stable isn't too bad. I do look quite a lot better from the weight loss before so that helps. Lost about 7.5kg of the Tamoxifen weight gain - with another 6kg to go but stuck at that level for a bit now, well very slightly down.

Still no mammo appointment through, been trying since end Sept to get ideally an MRI or if not a mammo but not in the breast unit from before as it makes me too anxious. But seems impossible to get this - MRI is getting repeated no even though its the best method for lobular and mammo only picks up 50%, ultrasound 50% and normally when large and MRI is much more accurate esp for those with dense breasts. I have/had dense breasts and the mammo picked up 1 cancer and MRI showed 2 cancers and a pre-cancer, all lobular. Spoke to a very bossy nurse today who told me this was just my anxiety talking and making decisions and I should just go into there for a mammo which is NHS standard for lobular at a quieter time. TBF some of it is anxiety driven and it is standard NHS policy but some women are being given a vastly shortened life expectancy due to this policy. I tried to contact Nuffield to see if can sort privately but online says a letter needed and tried to phone GP and Nuffield and Nuffield was just you are waiting music and gave up and GP no appointments unless ring at 2pm or 8am exactly then a 2 week wait. The receptionist was very nice though. The breast unit are in theory now sorting a letter for a private scan but will believe it when I see it. No idea of price, says £565 for 1 body part online but presume there's consultations on top.

@Penguinsa I think you have articulated your case for an MRI very well. I’m surprised your breast surgeon hasn’t agreed this for you. It will be worth the money to get it done privately and relax though. We are lucky this is an option for us.

As a former HRT prescriber we used to be pretty generous with HRT in the 1980s but then there was a scare after a study in the USA showed excessive cardiovascular deaths from combined HRT and several studies showed extra breast cancer cases. (To be fair they were in people with a high risk and were picked up early and treatable so they may have just presented sooner because of the HRT and would have developed eventually.) HRT prescribing dropped away for twenty years until Davina made her documentary. Now people seem to be ignoring risk and going for instant relief from symptoms. I expect the pendulum will continue to swing but currently dermal oestrogen with some form of progesterone opposition seems to be the safest way to go. I agree that regular monitoring would be wise. I wouldn’t take it now I have had an oestrogen receptor positive cancer for any reason.

@TopOfTheCliff Good to hear you're gradually recovering from the hip surgery; you are so talented at keeping going and not letting things overwhelm you or destroy your optimism.

I'm so sorry to hear about your bereavement. Such an advanced age, but it's never easy is it, and feels like the end of an era when a parent / parent-in-law passes away. My condolences.

@Penguinsa I'd go ahead book an MRI even if it's self-funded privately. I've finally had some urgent NHS MRI scans and it's clearly a very useful machine, plus no additional radiation after the already huge amount from the CTs etc etc. I was given them by a totally different dept, not oncology, but a lot of pretty serious issues have been discovered and diagnosed now thanks to the MRIs. Fingers crossed not mets, there's a possible one which is being investigated this week, but the issues are predominantly stuff like bad bone oedema and nerve compression etc etc.

I think the post breast cancer protocols are created based on the majority ie. low grade, early stage, ER+, Her2-neg, ductal carcinoma. The rest of us with other types are not catered for in the personalised way I think we need, such as your lobular.

Your bossy nurse can honestly shut up. I had a MacMillan CNS during chemo who said breast cancer doesn't go to the brain. What ignorance, truly shocking. Especially considering my cancer was Her2. She came out with other classic examples too that showed she knew very little, and even I could see that as a patient without medical training. I managed to keep my mouth shut but just knew I shouldn't trust anything she said which was scary because she was my nurse for months till she left the hospital.

@FairyWren7 Sorry to hear about your pain. I really hope it subsides soon, at least a bit.

@MissMarplesNiece As @dotty2 said, Whipples is huge. Sorry some people in your family don't really get that. Did you have pancreatic cancer? Sorry I don't remember, my memory is awful these days.

_

I've been getting some very, very good treatment for lymphoedema finally. I had to fight the nurses to get the referral, but so glad I didn't give up because the MLD is excellent and the improvement is clear to see (and feel). The lymphoedema clinic are also doing scar massage on my mastectomy scar while they treat the chest oedema.

Love to all on this thread xxx

@SummerCycling I am beginning to think my coping mechanism is a bit delusional. But it does work well as events have proved.
I have to say that despite MILs age of 90 she was sprightly, cheerful and determined to care for FIL for his remaining time. We had hoped she would have a couple of years of enjoying life after her caring was done but this wasn’t to be. Life is just unfair! Now we have to work out a way forward for FIL.

So, despite walking 11000 steps and attending 2 yoga classes yesterday, in a bid to help me sleep before what should be a routine oncology follow up today, I am wide awake! Tell me this does get easier!

Also awake Tam 😎It does get easier but my sleep is not any better. I do sleep at some point.

Thanks very much for advice on surveillance, I think the MRI does make sense the more I think about it - I actually didn't put the case very coherently Top as I was panicked but there is quite a clear case. Though it was as I was speaking to the nurse I remembered the mammo missed 2 out of 3 things, though 1 appeared human error as I questioned the results and then they said they found a second cancer on mammo they had missed. But MRI was much clearer. Hopefully something will be sorted soon.

2 more uni offers in for DD so she now has offers from Oxford, Bath and Bristol and is mid mocks.

@SierraSapphire I competely agree - it’s a while back (posts), but I think HRT / cancer will be a medical scandal. If they monitored/ assessed suitability more it would be better
on holiday - sporadic internet

I had an interview with a BBC journalist from a reputable radio 4 programme a few months ago, about the private over prescribing of HRT. It's not turned into anything yet, but I think there are a number of journalists who are keeping their eyes on it. I don't know whether I have been lucky in my lack of symptoms after my hysterectomy, I've really only had hot flushes which haven't bothered me massively, or whether it's that I exercise nearly every day and eat very cleanly, I'm sure those things make a difference.

@Remaker did you ever hear back about the charity sector job?

Today I managed 750m up the road and have been doing stairs normally but with a crutch IYSWIM. I’m very happy with how things are going so rang the breast unit to get the date for my scar revision into the pipeline. This is the ugly puckered one from the axillary node clearance and is just a minor (!) procedure. I think by late March I shall be ready to hold a celebration for the end of my treatment. Famous last words! I still have that Ca15-3 tumour marker lurking at the edge of consciousness.

SIL just sent over a bag of late MILs underwear for washing. Why? It’s hardly going to the charity shop. I shall quietly bin it. I don’t think she is thinking straight.

@RedRosesPinkLilies DH has just bought us a 3 portable router to use at DFILs house and when we are away from home on boat or bike. It’s very fast! And can be battery powered. It’s his new toy.

Thanks for asking @TopOfTheCliff. Unfortunately I haven’t heard anything so I’m assuming that’s not good news. Oh well I know job hunting can be a lottery. I’ve applied for some freelance work, will see how I go with that.

@Penguinsa I had a conversation with my SIL at Christmas about HRT. She isn’t menopausal yet but sounds like a lot of her friends are very unhappy about their peri/menopausal symptoms and evangelical about the benefits of HRT. When I mentioned the breast cancer risk she brushed it off as ‘it’s only a tiny increase in risk.’ A couple of weeks later she was diagnosed with breast cancer so I imagine her risk assessment might change now. I don’t know if her cancer is hormone receptive as I’m being cautious about asking too many probing questions. She has lobular bc and while her 5cm tumour was picked up by mammogram the small tumour in her other breast was not discovered until she had an MRI. Good luck in your self-advocacy but I wish it wasn’t such a battle to get the right care.

I had news about the job interview. It’s gone to an internal candidate. If they hadn’t been involved I would have got it. They’ve offered me a similar role in a different area which is just too far away! It’s three hours driving on the days I’d have to go in! So that’s a no. Hopefully something else will come up with them.

Its my birthday today and we are off to a posh winery for lunch. Parents are still here until Friday.

Sounds like you are doing brilliantly @TopOfTheCliff

@Remaker we’ll both get something soon!