The Great Recovery part 4

[TopOfTheCliff]

Time for a new thread. Welcome aboard!

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!
Here are some resources we found helpful:
The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/
Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward
Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html
Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/
Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients
Any more suggestions? Post them below
There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

That’s interesting re acupuncture, etc.- I have neuropathy under both feet.

I’m finding my mouth to be getting rather claggy on anastrozole. Anyone had that on AIs?

I had a course of 6 acupuncture sessions when I finished active treatment. They made me feel generally 'better'. And my oncologist recommended taking a good vitamin B complex, which I've been doing for about 5 months. I had a little bit of neuropathy, but it's been getting better over the last few weeks. Nerves take ages to 'heal' so it's a long haul 🙁

I plan to have top up acupuncture treatments every couple of months.

Can't edit, but the B complex was to help with the neuropathy. I can't say if it definitely did, but it's practically gone now.

Hi folks, have been lurking mostly (and have been in a "cancer was a problem in my past" phase) but things have taken a v sharp turn in a different direction and I'm not sure if any of it is "cancer recovery" related, oncologist thinks is possible.

2 years post treatment, hormone +, her2+ BC, one side, lumpectomy with reduction both sides, chemo/radiotherapy. On tamoxifen for approx 18 months now switched to letrozole (early 50's).

But, big thing is I am now a bit "mental" , not sure if it's menopause, previous mental health struggles recurring or a post cancer weird thing that's going on, or mixture of both? Anyone have similar? Having major anxiety issues, verging on hypomania. GP first put on Diazepam, now on Quetiapine as less addictive but will change to another for long-term once more stable. Feel like I have PMTx a million, which makes me think its menopause but GP treating as metal health problem.

Any advice v gratefully received

V cute puppy @Littlecaf

@Catswithhats welcome! It’s friendly and easy here. Do have a cuppa.

Tamoxifen made me a bit bonkers. Huge anxiety like I’ve never experienced. Couldn’t get off the kitchen floor physically - was a wreck. Home was the only safe place etc. A bit of agrophobia. Weird. I don’t feel like that on exemestane but who knows about letrozole. Maybe combination of everything? Have you seen a counsellor? The BCNs refered me when I was having chemo and not coping. It helped. Sorry you’re going through this. Sending all the good vibes & tea.

What was the vitamin B complex you were recommended?

Welcome @Catswithhats and sorry you have been struggling, it may well be a combination of things and would imagine there's quite a lot of variation as people's circumstances vary.

I am 3 years post chemo / radio / surgery and have very little anxiety about cancer (though aware one day that could all change overnight but don't think about it). I get anxious but always have done so not new. I am just on Tamoxifen and I've been a lot braver than before on that though think its the impact of having cancer making me want to live life to the full now, make sure I do everything I want incase it comes back and get house / garden sorted and perfect partly incase it comes back. Its actually been quite a positive force and also read 3 to 5 hours exercise a week cuts reoccurrence chances by up to 50% so do that and that helps mental health. I travelled round the world on 2 long haul planes to a very remote island alone, something I never would have done pre cancer. I do get annoyed more easily but pre cancer I almost never got annoyed but I think that is linked to what happened to my son when he was in hospital and meds going wrong. Sleep is pretty bad and that's new since cancer though anti-histamines help but do manage to function fine anyway. Quite happy and content unless I think about DS in hospital too much.

I would recommend exercise - I love swimming though currently doing lots of gardening especially scented plants which has been great though coming to end of season. Counselling may be worth trying, I didn't find it helpful but worth a try. I find a mood diary useful if struggling and see each time what triggers are for feeling bad and feeling better and can normally turn things round very quickly with that, doing more of what makes me feel better and less of what makes me stressed. Spa days are also great for switching off if that's viable.

Shower is now back in bathroom which is good, now have bath, shower, toilet and vanity / sink / floor all in and useable - back on Monday for a few more things.

He didn't recommend a specific one, but I've been taking this one https://amzn.eu/d/6ooEsBa

@PaperbackWrighter for the Covid jab I was told that aromatase inhibitors depress immunity so they give me the Covid jab based on that. If you go through the NHS online booking you just say you are immunocompromised. Nobody has argued with it. There is lots of Covid about.

Welcome @Catswithhats we have all been a little crazy at times on our recovery path. I found a three day retreat with psychotherapy through Cancer Lifeline South West helped me hugely. I took up yoga and meditation and learned how to control my sympathetic nervous system. I think the letrozole could be upsetting you. Maybe have a month off to see if it helps? I switched from anastrozole to exemestane because of joint pains. We are all different.

The cycling was a triumph. I rode with my two buddies, DH and two other men. We set off at 8am and had a huge hill about 20 miles in. I was first up! I thought they had hung back to make me happy but apparently not. We had coffee and cake then rode around 50 miles through the lanes then eventually went back over the big hill and home on 100.5 miles. We were so pleased with ourselves. I am back to the fittest I have been in years. Now I need to work on strength and try not to get ill or injured. The next event isn’t for three weeks. Exercise really does boost all the right chemicals.
Yesterday we zoomed off to see the Southampton Boat Show and visit DM but I am home for a rest now. The PILs bungalow has a completion date so we have one last push to clear it and that will be done too. Life is quite pleasantly busy.
Hope you are all having a good weekend.

Thanks for replies,

@TopOfTheCliff your fitness is v impressive, I feel every time I check in you are on some adventure
But, its definitely not the letrozole, I've been a bit "mental" pre-letrozole (only been on it a few weeks).

Counselling may be a good idea @Littlecaf and agree @MrsPengiuins lots of exercise definitely helps, its like if I exhaust myself a bit, my brain has less energy for craziness

Thanks @Catswithhats I am almost back to my pre cancer life of charging around like somebody twenty years younger. It takes more time and energy now and I get a bit dizzy at times, with my scars and numb feet and healed fractures, but life is definitely better.
Tell us about how you are mental. Were you always this way and it’s got worse or is it new? I had a splendid mid life crisis at 50 and blew my life apart when I hit the menopause. It all worked out but maybe with HRT I would be celebrating my fortieth wedding anniversary with DH1 instead of my ninth with DH2 😂 I remember being very anxious and getting palpitations and The Rage. I had two years of psychotherapy to untangle everything. I’m very chilled and easygoing these days.

@TopOfTheCliff Your midlife crisis sounds v similar to what I'm going through. I have had mental health issues in the past (teenage years and then in response to trauma as an adult) so this has blindsided me a little as it has been extremely bad in the past (one section for psychosis) and I'm understandably worried it could go that way 😟

I really think my menopause is responsible for this but my psychiatrist either doesn't think so or doesn't want to go there (as can't get HRT anyway with hormone positive cancer ) so antipsychotics/anti anxiety is what I'm having to go on. I feel like if everyone would stop being annoying the I wouldn't need them (by everyone I mean DH/some of my family). Feel like taking DDog and living far away from everyone else at times

I do a lot of the "mental load/stuff" for others and its become impossible. DH is trying but years of living this way is difficult to change tbh.
Thanks for listening

I had a really bad perimenopause @Catswithhats - I was still having periods when I had my hysterectomy, so I had a surgical menopause but I have felt better since then than I did beforehand. I had off the scale anxiety, mainly about my health, though strangely not about cancer! I had childhood trauma and issues when I was younger as well, which seemed to come back with perimenopause, though lots of other stressful things were going on at the time so it is difficult to unpick what causes what. I had heart palpitations as well, which didn’t help. I now just try to be as generally healthy as I can be through good sleep, relaxation, eating well, and exercising rather than focusing on any particular symptoms, and it seems to keep me sane, though I don’t have the same demands on me that I had previously, which is obviously also a factor.

I’m back to work though tomorrow after a week and a half off, not looking forward to it, I’m glad I’ve had time off but I have been doing so much stuff that it didn’t exactly feel like a rest!

Well done on the cycling @TopOfTheCliff

I hope things can get better for you @Catswithhats Could you get away from everyone for a bit to see if it helps if you are well enough / have funds. I am a big believer in exercise and things linked to 5 senses - like nice smelling foam baths, soft fabrics like velvet you can wear and touch to calm, nice lights (I have just ordered 2 solar dandelions for the garden from RHS - my DS loves dandelions), nice foods though without going crazy on calories, and nice music. Also having different projects helps me rather than having all eggs in one basket. I think your feelings aren't uncommon after cancer treatment and hopefully can be worked through. I found trips out to wildlife was good - I did puffins but its not puffin season. This time of year is a bit tricky but I love fireworks and have booked a nice one of those.

I have done 3 hours gardening with DH and also cleaning downstairs and everything looks a lot better and will have Sunday lunch this evening. Hopefully builder will be in to do more on bathroom tomorrow, DSs keyworker is in for 10 mins or so. DS took a bath whilst we were in the garden.

@Summercycling I hope everything is OK with you. Not heard from you in a long while. I saw a post on the stage 4 thread under a different name but they mentioned 28 lymph nodes and I thought you had that. Thinking of you.

@MrsPengiuins

How kind of you to remember me.

You're right about the lymph nodes: I was told I had "multiple" cancerous nodes, although they couldn't give an exact number because there were so many and it was on the MRI and CT scans before my treatment started. It's actually a different person who posted that message.

Thank you, I am doing ok in general. I do find I'm very anxious about the cancer and am terrified of being told I have to go back onto chemo and face stage IV with everything that brings. Had a nasty scare this summer but it turned out in the end it had been misdiagnosed, once a more knowledgable specialist took a proper closer look via EUS. Also rather worrying how consultants can get things like this so wrong; very anxiety inducing the whole business.

Like you, I do prioritise exercise - I swim / go to the gym etc whenever I'm up to it, aiming for 4 hours a week of moderate exercise these days. Physically, emotionally and cognitively I am not the person I was; it's certainly a "new normal".

Love to everyone on this thread and anyone affected by cancer x

Glad to hear you are OK and well done on the activity @SummerCycling I tend to be very la-la-la and not think about stage 4 as I figure all you can do is exercise, try and stay normal BMI and do recommended treatment and best to enjoy life whilst you can. But it is scary when you do think about it.

Builder in today and has fitted new radiator and working on bathroom. The cat now looks like the incredible hulk as he's made green dust and once he went out cat went for a nose. Keyworker has been in, was good she went in garden and we had just done it yesterday. DH has piano tonight and hopefully will get some compost as I ordered some things for garden and forget we had no compost left. Lovely day today.

Wasn’t it a lovely day? I cycled with my buddies this morning down by the sea and it was glorious. Next I went out to the allotment for a couple of hours, then I had another group weights session at the gym. I am enjoying learning new things and some things I am actually surprisingly good at. I aced hanging off a bar and doing tucks 😂 maybe I have bat tendencies!
I make that about six hours of exercise today! DH is off on a long ride so I am home alone. I have been making wholesome autumn soup tonight and feeling virtuous. It would be nice if life could be this simple every day but it won’t last.
Keeping busy exercising stops me worrying about anything.

It's good to hear from you @SummerCycling Sorry to hear about your recent scare, that sounds very alarming.

I really feel for you @Catswithhats - the psychological side of cancer is so hard. I struggle with it a lot too - especially so these days, a year on from finishing active treatment. That's surprised me, but it also makes sense as have had a lot to deal with re elderly DM and DSis, both with significant mental health struggles, and I think maybe I've reached my limit of being able to cope with it. As it sounds like you're finding too, it's not just the cancer is it but the other stuff life throws at you at the same time that has an effect on our mental health. Plus of course the menopause factor, and no HRT like you say, and we're probably having a more exaggerated version on tamoxifen/AIs.

I exercise a lot, I'm seeing a counsellor every week (although she has recently called me a survivor which I don't like - just personal preference, also told me last night that I beat cancer, again not a fan of this. But she is very understanding of the impact it's had on my life, which is helpful I guess). The anxiety is taking over a bit for me at the moment, currently really stressing about having the Covid jab next week. Wake up every morning anxious about it, cortisol racing through my body. Silly really as I want to have it but have developed this fear of it (not had one since 2021).

I totally relate to you wanting to take DDog off somewhere and get away. I live alone with DDog but I would like to escape somewhere with her that doesn't have Wifi, ability to contact me!

On that note, any more puppy pics @Littlecaf?!

Also, thanks @TopOfTheCliff re coming back to me on covid jabs - it seems I'm booked in through the online system which automatically checks via your nhs no whether you're eligible. So I must be. Your cycling excursions sound fabulous!

I also find lots of projects and exercising helps my mind from worrying. Though I did see people on MN say too much exercise was bad but just checked as I know 3 to 5 hours a week can reduce reoccurrence up to 50% but wondered what more does. I am now over that each week. Anyway it said 5 to 10 hours has slightly more benefits for health than 3 to 5 but over 10 there's no further health benefits but no negative ones. So that was reassuring.

Builder came in to do bathroom, we have to paint some panelling he put in tonight then he's back tomorrow and should be all done then. DS has been going round with a big smile which is lovely to see. DD is off at university early and seems to be rowing / coxing and on two rowing committees. RHS parcel arrived with the solar dandelions, rake, plant and gloves for DS in so will do that tomorrow evening. Its lovely weather here this week, imagine its the last of it soon though.

Great that you do well over that exercise time @MsPengiuns. I wonder if dogwalking counts - do that for 1-1.5 hours a day (apart from 30 mins 1 day a week), then I do 2.5 hours dancing/resistance training currently. But my dog walks aren't always brisk, so don't think all of them count!

Your garden plans sound fab, and the bathroom finished tomorrow. Hooray! You must be excited, and lovely DS has big smile on his face!

Thanks @PaperbackWrighter I think someone looked it up and walking does count - I wasn't sure either though for me I tend to adjust the times - so if I was out for 1.5 hours walking but 30 mins was more looking at plants / drinking coffee, at a pace a sloth could overtake I would count 1 hour. Same with swimming I don't count the time I am in the pool I make an estimate for time swimming rather than being at the end of the lane / jacuzzi / sauna / steam room. I do count gardening - I think any activity were you are moderately active can count. I have a running total and weekly average for the year in minutes on a draft e-mail which I update and its useful to keep track. Its quite reassuring to see progress. It sounds like you have plenty of exercise, that sounds perfect already.

Hope return to work went well @SierraSapphire

@PaperbackWrighter all of my puppy picks have the kids in them at the moment but when we visit next week I’ll try to get some without them! He arrives in two weeks - very much looking forward to it!

@Catswithhats @SummerCycling i think it’s standard to be anxious about cancer reaccurence. Which doesn’t help I know but makes me feel I’m not alone - that others are going through this too. I’m hoping that the fear gets less as time goes on. My DBIL said he got to about 7 years after leukaemia that “would definitely come back” and thought “fuck it, I can’t live like this”. I don’t think I’m quite that bold, I’m hoping it’ll fade. I’ve already started to say “I had cancer last year” rather than “I have breast cancer” It’s in the past now rather than my present. Although at the oncologist last week he started talking about zoldedronic acid so my hope for never going back to the chemo ward has gone. Nevermind. They are nice nurses. I get to drink tea and eat biscuits!

I was reading some stuff about recurrence the other day and was cheered to see that the recurrence rate is higher in the early years so as time goes by without incident you can start to relax. I’m at 5 years and 3 years now for my two cancers. I try not to think about it much these days.
We have a completion date for the bungalow sale next week so are clearing the final bits out of the house. I decided to use a pretty chest of drawers from MIL for my clothes so spent this evening chucking out lots of tatty/outsize/outdated clothes which were in the large but broken old drawers. It’s been satisfying throwing out baggy knickers and T shirts! I had a hair cut today too so am trying to smarten up a bit!