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.

@FairyWren7 we could write a book! ‘How not to respond to your friend’s cancer diagnosis.’

I’m in Sydney. I think you are in Melbourne?

It’s nice to have someone in the same time zone to have a chat with while everyone else is asleep 😊

@Remaker yep Melbourne.

Thats exactly what I was thinking!

Hmm I did ask previously about monitoring my CA125 @RedRosesPinkLilies and the oncologist said it wasn't relevant though I should have probed more, it was only 15 when I was diagnosed though and 4 before chemo, which was nearly 3 months after my hysterectomy. I'll ask again.

Most of my friends have been good @Remaker although one of my oldest friends never asks me about cancer and seems uncomfortable talking about it, which is awkward, but she did provide me with a lot of practical help after surgery. I do find though that I don't want to support people who are going through cancer tests, as most of them will not have cancer and it's left me feeling shit for a week or so afterwards. Of course it's not that I want them to have cancer, but I just feel like great for you, but I still had it. I do support people who've had an actual diagnosis though. I have a friend who's about to retire and has said a few times she's worried she might die when she's 75. However many times I say that seems quite old from where I am she doesn't seem to get the hint. I also have a friend who's convinced you can cure cancer with kale and meditation because she listens to a lot of alternative practitioners who only talk about the success stories, I'm that way inclined too and I've made plenty of lifestyle changes, but I'm also clear that it's traditional medicine that saved my life. They sometimes talk about these things as theoretical issues for them, which of course it isn't for me. Do you feel able to raise it with your friend that she disappeared and you felt hurt?

I do think this is a good call. Those SM support groups are great while in the throes of treatment but afterwards I decided it was unhealthy to dwell. Obviously only if you are through and NED.
I left all groups bar one. That's a group of local women who had breast cancer. We have become friends away from cancer and meet up 2 or 3 times a year.
I recently came across a lot of paphlets and paperwork from my treatment days - all binned.

@SierraSapphire yes I might have to be brave and tell my friend how I feel because it’s obviously impacting our friendship and colouring how I respond to her. I either have to truly let it go or else deal with it.

I had a text from my brother tonight (who also was hopeless during my treatment) just checking how I am. Which means either he’s spoken to Mum or caught the bus with a good friend of mine and they’ve reminded him I had a biopsy yesterday LOL.

@SierraSapphire its possible Ca125 isn’t a good marker for you. I believe it doesn’t always rise in low grade ovarian cancer

You definitely deserve to understand why the Drs are not so worried about your ovarian ca. And I’d ask that question along with the appropriate monitoring

Definitely Drs can overlook or forget details about patients

I had a close friend who reacted very strangely during cancer treatment and first of all it was like I would say going for tests to see if at stage 4 and you would get a reply saying sounds like it's all going well. 🙄Then we went on to the ignoring for months phase. One day full of steroids I challenged that and she replied can't always reply same day and I am busy my brother has diabetes. She hadn't replied for 3 months and hardly ever spoke to brother. And another one who only checked in every couple of months sending a I am so concerned can you update me reply and nothing for 2 months, clearly either trying to appear to others like she cared or just after gossip. The first one in the end I decided she must be scared of getting cancer herself, she had a scare before and was shutting it out. She still contacts me but every few months and she's more at arms length now. But then I met wonderful people through cancer treatment who filled the void. It does show people's colours though and motivations.

Glad interview went well Fairy but that does sound like it would be very tough. I am massively sympathetic to mental health, think it's often harder than cancer as there is little sympathy and people avoid and leave isolated, but I would struggle to have the emotional capacity to deal with cancer and other people's issues. Plus I do wonder if cancer can be stress related so best to cut it where you can. Having same issues with reconstruction.

I am still on the cancer groups but rarely go in them. I can generally not think too much about it and can spiral a bit if go on, especially it can seem that everyone goes to stage 4 in a few years when you read those sites. I have no idea what chances are this will come back, is local reoccurrence counted as stage 4. I wish Predict Breast gave reoccurrence chance though as DD says it's either you get it or you don't. But sometimes would like to plan more.

I have pretty much no follow up checks which is scary, just up to me to report symptoms and not told what symptoms. Though sometimes ignorance is bliss. And I don't want to be at hospital every week checking things. I did appeal but they rejected it.

I tried out the Spirit Ash yoga studio in Ashburton today. It was a Yoga class for breast cancer patients and very helpful. Nice and warm and all very friendly. Would recommend!

Also went to see a possible boat but it was the wrong design for us. Had a nice coffee and saw my friend too though. I keep meeting people I haven’t seen for months and having to explain why I look different. Hair is growing upward like a polish Tophat chicken! A good day of recovering though.

I've just been invited along to a yoga session by my old teacher for next week. I haven't been to a class in person in around 18 months. It's not specialist but she's great at working around issues- I think my arm with the lymph clearance is definitely a lot less flexible than it was.
I had to pre warn that I look quite different as I'm having the same thing @TopOfTheCliff in seeing lots of people and I look really quite different with curly dark hair (was blonde and straight!). I find it a bit awkward with people I don't know so well and find I waffle on a bit about it and my nose which is still scarred- I think people think I'm a bit nuts!
Won't be able to go the week after as having the ovary op but will definitely get signed up again next year.
I had an MLD (manual lymphatic drainage) session with a friend this week as she is training in it and I am Guinea pig. Much more gentle massage , it was really lovely and relaxing so will fit a couple of those in pre op too.

I've just hidden all the cancer groups on FB. I just want to move out of that headspace a bit as I feel it's holding me back. The fear of it coming back will always be there, but I need to live my life as well as possible in the meantime and whilst there are things I can do to reduce the risk, ultimately it'll either happen or it won't.

Recovery news - had my first session with my PT since all this started. I thought he went far too easy on me and was mildly disappointed after the session - until the next day when I was stiff and achey in places I didn't know existed!

In other news, the firm I work for is being acquired by another firm, it's all very rush rush and of course worrying, stressful and will mean a big change to quite a few things including an office move and a new way of working. This is going to sound weird, but it actually feels quite.....enjoyable....to be stressed about work. A few weeks ago I wouldn't have given a flying frog about it all as I had bigger things to worry about and whilst I'm certainly less stressed about it than I would have been pre-diagnosis, it feels kind of nice to be having a normal response other than indifference.

I'm also officially menopausal now and on the patches. I don't feel any different to be honest, other than perhaps being slightly more emotional but I can't even say for sure that's the menopause as it's quite possibly just a reaction to what has been a rather trying year.

Hope everyone is doing well and feeling good.

Still just half awake here but woke to 3 PMs from Mowly. There's an update on the other thread, very glad she is still here.

I'm so glad she's home and sending her much love and peace for her and her little girl. Life is so fucking unfair sometimes.

Yes I am so glad Mowly is home. Went to black tie dinner tonight which was really nice, classical concert in masters lodge then champagne then black tie dinner then more drinks with professors. We had a philosophy one and DH was happily chatting with him about France and pianos. The Master told us college DD has applied to is their twin college, never knew that but DD was saying she wasn't going to do same as me so she applied for same subject but at Oxford and now she's apparently done the twin college. 😂

I'm glad Mowly's home too.

@Silkiebunny Pleased to hear you found a suitable dress that fitted and had a good time at the dinner. What a coincidence about your DD's college!

Not much to report here, just the emotional ups and downs of having stopped all anti-cancer treatment but in the knowledge that I have all but one of the high risk factors for recurrence ie. stage t3-n3 (3c) on diagnosis with enormous tumour, highest grade (3) of an anyway fast growing HER2 cancer, hormone negative, and multiple malignant nodes. The one redeeming factor that gives a little bit of hope is that I had pCR.

There are no ongoing treatments to suppress HER2, unlike oestrogen blockers for people with oestrogen sensitive breast cancer. Just fingers crossed, exercise, try to cope with stress, eat nutritious food.

But it does feel good to have got this far. Without the treatments I'd most likely have died by now, so I have definitely got more time to live life and I want to enjoy it. My cognitive and neuropathy issues are somewhat disabling, but there are plenty of things I can still do. Now is the Great Recovery and hopefully finding enjoyment in something every day.

Thanks Summer Yes I got a lovely sparkly silver long dress from River Island in the end and already had sparkly silver shoes. Floof was totally in love with it too as I looked like a giant Christmas decoration and he kept gazing at it and blinking then got his big fluffy paw and kept stroking it, thankfully with claws in. Wasn't too expensive either which was good as hopefully will change size though there was quite a lot of food.

I have oncology on Thursday to discuss hormone tablets though been cancelled twice and clashes with meeting at home for DS. I have restarted Tamoxifen as don't like being off them for too long, already gave me a 6 week break. Well I loved being off them but they do help with the longer term risk though saw Tamoxifen doubles risk of ovarian cancer, urgh. And being NHS there are zero checks on that. Did say was after 5 years. Letrozole a lot of women sound like they are in so much pain they can't walk which is the alternative. It's like the you can choose which chemo again and none of them sound attractive but you end up doing them incase you are in the 10 percent they help over 15 years rather than the 90% where makes no difference either way and just get side effects. My oncologist is very sensible though, she was worried about the depression side effects of them on me before but that seems to be just about manageable but only due to swimming and so I don't want to be in so much pain can't swim.

It's a bit scary being reminded of people getting it back quickly especially with DS who will probably need lifelong care and there is almost no help with that. But as long as we are alive we can care for him. DH is older than me but he should in theory live another 20 years or so. He's really deaf though and DS not speaking or writing and DH being deaf and hearing aid refusing means people can only communicate via me. Though I think both of them would be happier with almost no people in the world, just animals.

You might find this interesting @SummerCycling - links with food and supplements that can help with Her2+ breast cancer (figs?!) - all referenced to medical journals - www.canceractive.com/article/natural-compounds-can-fight-her2-positive-breast-cancer

I am back to lots of exercising after my tonsil op and it's feeling good. I don't have much spare time to earn any money though 😂. I'm really struggling to focus, I'm not sure it's just a cancer thing, I do wonder whether I have some form of mild neurodevelopmental issue, like ADHD, or my daughter thinks I'm autistic for various reasons! I had quite a lot of childhood and early adulthood trauma, so it could also be the effects of that on my brain. I am wondering whether it's time to get some external help from somewhere, as the menopause and lack of oestrogen, I think has made it worse.

Can you get ESA and /or PIP Sierra I have ESA and does help a bit and they said I probably qualify for PIP but never applied. I was self employed but still qualified for contributions based ESA. Macmillan are supposed to be good. Did it myself. It's slow and painful but gets backdated. I think with ESA you can work a little bit and PIP maybe too.

I don't meet the conditions for PIP @Silkiebunny even with some exaggeration, I did try but in reality physically I'm absolutely fine, and it's so hard to get for mental health and I haven't got any evidence about that, I'm not really anxious or depressed, I just can't focus, and I'm working and earning too much for ESA (needs to be less than 16 hours and £167 a week, which I am averaging mostly but it's is obviously nowhere near enough to run a household on my own). I work partly in welfare rights advice, so I'm pretty up on what I'm not entitled to 😭. Part of the problem is I had to get a bounceback loan during Covid because I wasn't entitled to any support, so I'm still paying that back from my business, and I have other business expenses that I have to pay regardless of how much I'm earning. so there's money going into the business before I can pay myself. I have got some work lined up for the new year, and actually I've got potential to earn quite a lot in an area of work that I've got skills in that's quite in demand at the moment, it's just doing all the preparation work and marketing can be challenging when there isn't any immediate return on it, and the marketing makes me feel icky. And I'd rather go to the outdoor pool and spa and yoga classes and then the day just seems to be gone!

You need a job at David Lloyd Sierra comes with free membership for you and your family. 😎Yes it's very difficult, I am married and have savings so am not eligible for anything income related, pip I do just qualify but not claiming it as proving it would be tricky and get ESA which is ok plus DH pays bills and I have savings but on its own it's not viable. If I worked again it would be in London with 2 hour commute each way and I really don't think I could manage that. I miss working a bit though it's mainly feeling I had a purpose. It was awkward at the even when people asked where do you work now and needed to say I don't but do you say because kids, because cancer, because inpatient child, went with cancer in the end as more socially acceptable 😆 as my kids are 16 and 17 which no doubt would be next question.

LOL. @Silkiebunny it's a DL that I'm a member of (left after my diagnosis and went back to a new and different one on a whim in the summer) - I suspect working for them might somewhat spoil the experience! I did think in my early 20s in London when I was addicted to swimming and used to go every day (sometimes twice!) that a job as a lifeguard would be great! I do sometimes think would I be better in an actual job rather than being self-employed, but I can't see how I would fit that round my mother's not irregular crises, and also I just don't think I've got the energy or enthusiasm to work the hours it would need to give me a reasonable standard of living, and I don't want to have to ask somebody if I can go on holiday or to the doctors, also I'm possibly unemployable now after being self-employed for so long! Also, if I ever went to a party, I could tell people what I did for work without actually doing any work whilst being self-employed so I wouldn't have to have the awkward conversations you ended up with!

I’m lucky to be a pensioner and not under pressure to work thankfully. My brain isn’t up to it anyway. I was briefly tempted by the idea of a return to my team as Beloved Leader but I think the idea of me still intact and functioning would be better than the reality of the forgetful old biddy I am now.
I met my daughter for lunch today. We were meant to be romping in the autumn leaves but it didn’t work that way. Never mind I can always go and romp by myself.

I have left two Cancer FB groups as part of the purge. It feels the right time to let go as I am moving on. This thread is a good halfway house back to normality.

I also wonder about working sometimes but think I would struggle with 2 hour commute each way and all of DSs appointments and reckon I would last about 3 days. I quite like my swimming, holidays and parties and not having to think about things too much. But it was a challenge, first person I said about cancer which is always a bit awkward but they were like I know another person with cancer so was ok. Then second one I just pretended to work but being academics they started to ask me really intellectual questions about latest developments in my subject specifically is machine learning used a lot in econometric modelling. I was like 🤔😂Thankfully DH was happily going through pianos and French history with them. They were all lovely but it was like my brain had left me a bit. Normally I feel fine now.

Glad you had a nice time Top.

Hmm. This is making me think actually, maybe I need to focus more on adapting to how I am now rather than trying to get back to how I was, and recognising I can only do desk work in bite-sized chunks. This morning I did 45 mins work at home, came to the gym, did yoga, had breakfast and now am working a bit more, then will swim then go home and work again. I am actually interested in what I'm doing, it's my business and so I choose the direction, and when I'm focusing it's fine, I just get bored / unfocused quickly. Going out to a cafe helps too, so maybe I shouldn't feel so bad about spending money if it helps me.