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 to kick things off I am 63, I currently weigh 90kg which is at least 15kg too much for my height. I have a knackered arthritic right hip that will be replaced in January so I want to get fitter and lighter before then. I am still furious about the second cancer and am looking forward to a vegetarian retreat with counsellors and meditation run by Cancer Lifeline South West so I can have a good rant away from home. I have started the Zoe project eating 30 plants a week and am enjoying some weird recipes. If I have learned anything from last time it is to take things slowly and don’t rush!

Thanks for setting up the thread Top and here's hoping for a great recovery for you and all who join us on here.

I am 50 with 2 children, one who is 17 and one who is 16 and had 2 breast cancers diagnosed in Nov 21, one of which had spread to lymph nodes. I have done 2 surgeries, 12 week Pax chemo, 5 days radio and on 10 years Tamoxifen and have reconstruction to come. May also switch over from Tamoxifen. Currently awaiting results of CT head but expected to not show spread. Finished radio Aug 22.

In the year since I have been to Maldives, Mauritius, France, Azores and Porto and had lovely holidays. I am trying to do the recommended 3 to 5 hours a week exercise to halve risk of reoccurrence and year to date have done 4 hours a week mainly swimming which I tend to swim a mile 3 times a week and happy with that. In my treatment year 2022 I was a bit below target at 111 minutes average a week but had chemo etc during that. Just want to continue with both those travel and exercise, both are very good for my mental health as well which is improving with those after being very anxious in cancer treatment.

I have a chemo cat Mr Floof and do a lot of catting. Lovely husband who is as wonderful as ever and 2 lovely children.

My biggest area now is probably I got a shock at last appointment that despite being normal BMI in cancer treatment I put on 14kgs in first year on Tamoxifen which I need to lose now. I have always been thin before so it was a complete shock but I have been dieting for 2 weeks now and lost 1kg already. 13kgs to go. I hate dieting and will weigh myself more regularly in future. Not sure if it was the Tamoxifen or menopause or just my son being in hospital 8 months and eating whatever it took to get through that but I need to lose it. I am trying to lose around 500 calories a day through diet and exercise and succeeding so far but its tough going. I am somewhat of a sugar addict and having to largely cut that out, my elderflower cordial has gone and sugar in tea and on no coffee.

Hi Top! Yes, great idea for a thread. It's a year since my DIEP breast reconstruction surgery & in contrast to this time last year when I could barely hobble to get to the loo, I went to a beginner's pilates class with my old pre-diagnosis trainer - so a good step on the way to the great recovery for me! I'm aiming to build in a gym session soon.

I've also taken a more active role in one of my volunteer roles & began an entirely new one where no-one knows about my recent health status. There have been times when I could have mentioned it but didn't because it's quite the downer! Has anyone thoughts of how to the navigate telling or not telling situation??

Hi Top! I've just gone back to work 18 months after my mahoosive surgery for duodenal GIST. Waiting on CT scan results to see if that missing stent has "made it's way out" yet

Thank you for this. I’m 54 and have stage 4 primary peritoneal cancer (treated like ovarian). It’s incurable (obviously), but with maintenance treatment the prognosis can be better - at least for a while. I’d like to do what I can to help myself - hence joining in. I can always move off to another thread

We have 4 children- now growing up (young adults) - so I haven’t worked in a while. Have interests and hobbies, but think the main ones going forward are focussing on health and fitness.

Would really like to see more of the world, because our children had bad allergies holidays tended to be to safe destinations.

Looking forward to this positivity. X

Great idea for a thread. I'm a hear post treatment for stage 2 cervical cancer, got the one year all clear a couple of weeks ago.

I'm 43 and treatment has thrown me into the menopause which hasn't been fun. Have just started sleeping better so that is a relief.

Treatment (or anxiety) has made me loose my appetite completely so that got rid of the additional half a stone I've been carrying but my appetite is back with a vengeance now so need to keep that in check.

I worked through treatment (really should have done, regret that now) so things have stayed normal there.

Am looking into weightlifting at the moment as I feel I've lost my strength. Am continuing to try and walk 10k steps a day.

@Silkiebunny any tips for Porto am off there mid Nov

I think I should add - the cancer I have - the lesions (for me, at least) are like grains of rice - they’ve spread early and fast in the lining of my body- abdomen and into the lung (pleura) lining.

So I don’t have one big tumour with additional spread.

Perhaps why I don’t entirely feel like I have stage 4 cancer. I think the chemo has kicked it into touch just now.

Hi All,
Can I join? I am 53 and had a stem cell transplant 2 years ago for a rare blood cancer. My recovery has been somewhat rocky and I have caused my consultants some serious head scratching and a few sleepless nights! My approach has been a bit like Tops cheerful wilful denial (I too am a heslth professional) i decided not to look at statistics as I either make it or I don't.
I lost a lot of weight but it has all gone back on so could do to loose a few pounds. I have prioritised mental health as it's been a tough gig and I think I am relatively intact on that front.
Oh I have 2 kids 24 and 21 and a wonderful husband who has been saint these last couple of years.
My life though is changed I took early retirement as this time last year I was very ill. I am back to 90 percent me which is great but I am a bit what now?? Guess I hoping you lovely ladies will.inspire me!

Welcome @Alittlewornout what a time you have had. We had a lady on the general thread who went into Derriford Hospital for a stem cell transplant and never came back to the thread. I have worried about her ever since.You have done well to get to 90 percent you.
I have a few ideas lined up to keep me busy in retirement but I haven’t had a chance to enjoy it yet apart from my round Britain sailing expedition which was FAB. First I need to get into shape. I have booked a Pilates class for the week after I finish chemo. I know I will overdo things and get told off but I won’t matter.
Are you planning to work at all? Or do any voluntary work? Or just sit back and enjoy a change of pace? It’s a luxury to have the choice.

Hi all in this new thread. Here we go! I am 49. Just finished treatment under a month ago (single mastectomy with immediate DIEP reconstruction then chemo) for triple negative BC. Past history of lymphoma 25 years ago (including mantle field radio which is thought to have caused the above). Two children in late teens. Lovely partner of 21 years. Ready for The Great Recovery though it is not starting well as I deal with consequences of treatment (bad cording, cysts and lymphedema in right arm). Nevertheless, trying to take things one day at a time and take the wins where I can get them Looking forward to seeing some hair regrowth (coldcapped which partially worked, so have enough hair to get away with a hat hiding the massive bald patches on top and towards back). Dealing with some watery eye issues which I will also tick off when it settles. Will restart my gym membership in November to get back to swimming and maybe weights. Otherwise, I have been back at work for two weeks and am finding it both a useful distraction and overrated - would rather do my own thing (I'm an academic but so much is about teaching what needs to be taught and not enough research time). Well, let's see how we all do at trying to rebuild a normal-ish life after this physical and mental shock to the system. Good luck everybody!

Thanks @TopOfTheCliff for this thread.

Hi @Alittlewornout welcome! You've been through so much but despite that are back to 90%, that's really lovely to hear. I am also hoping that this thread will inspire us!

I'm one of the many breast cancer patients on these cancer threads, although mine is one of the rarer subtypes being completely hormone negative, but very Her2 positive. Grade 3 and stage 3c (they used the other label though, the T3-N3 one) on diagnosis, with a whole load of cancerous lymph nodes as well as a very large mass.

Started treatment early summer of 2022 and came to the end of the oncologist's plan a couple of weeks ago. I had 4 cycles of 'Red Devil' Epirubicin in the EC chemo, then Paclitaxel and Abraxane chemos after that. Surgery, 3 weeks of radiotherapy, and 18 cycles of Phesgo.

I found chemo extremely hard, with a lot of nasty side effects. I got to know A&E quite well unfortunately, but on the positive side learned how truly amazing and lovely the A&E staff are where the ambulances always took me. The ambulance crews were also really, really kind. As were the chemo nurses. I have very mixed reviews of the doctors though!

I'm looking forward to The Great Recovery now. I'm aware I've got almost all the high risk factors for recurrence of the cancer, but to counter that it did respond well to chemo. So I think it's important for me to try as hard as I can to go for it with things like exercise, having joy in something every day, etc as much as possible rather than dwell on what might or might not happen in the future. I'm planning to go back to work part-time in a couple of months.

Thanks again for this thread; I am going to learn so much from everyone here, I can already tell xxx

@TopOfTheCliff Zoe sounds interesting. Could you share a couple of examples of the weird recipes you've been enjoying? 30 different plant foods a week sounds like a lot but incredibly healthy!

Thank you for the welcome@TopOfTheCliff
I too remember that lady when I briefly joined that thread to be honest it's why I stepped back as just too close to home. With pension I can't work, to be fair I don't think my consultsnts expected me to recover this well
With all that was thrown at me. But I am a bloody minded wee soul and generally very cheerful so am sure that helped! I have been a nurse for 35 years mainly working with the under5s and miss them all dreadfully. I love looking after people so I think some sort of volunteering would be good. We have managed a couple of European trips which were great. I also do pilates and walk loads I also say yes a lot more to any invitation. I am very fortunate to have wonderful friends so am never bored!
Wishing everyone a great revovery and remember it's a marathon not a sprint!🥰

Welcome back MissSmiley I wondered how you were doing, I think you have 5 kids and were starting to date last time you were on the thread. Glad its still going OK.

JIL I only stayed one night in Porto in March on way back from Azores as you can get direct flights to Azores on Mondays only and we wanted to travel back mid week so went via Porto. Its Porto or Lisbon. Lovely hotel there with views over Porto and they gave me free cake and champagne for my birthday. I'ld also got free champagne from one in Azores and free private pool upgrade and free gifts so I did rather well that holiday. 🙀If you've not booked a hotel yet this is the one we stayed at and was great for room, views, food etc. https://uk.hotels.com/ho2128807616/vincci-ponte-de-ferro-vila-nova-de-gaia-portugal/?chkin=2023-02-23&chkout=2023-02-24&x_pwa=1&rfrr=HSR&pwa_ts=1675937301878&referrerUrl=aHR0cHM6Ly91ay5ob3RlbHMuY29tL0hvdGVsLVNlYXJjaA%3D%3D&useRewards=false&rm1=a2&regionId=603077&destination=Porto+%28and+vicinity%29%2C+Porto+District%2C+Portugal&destType=MARKET&neighborhoodId=553248635975867935&sort=RECOMMENDED&top_dp=112&top_cur=GBP&userIntent=&selectedRoomType=228370739&selectedRatePlan=262394986&expediaPropertyId=66493988&semcid=HCOM-UK.UB.BING.PT-DSA-c-EN.HOTEL&semdtl=a1437685300.b11341405829665594.g1dat-2335637575537112:loc-188.e1c.m1cfa36af7d75919085b310fdd07c91c36.r1.c1.j141471.k1137768.d183838173957308.h1b.i1.l1.n1.o1.p1.q1.s1.t1.x1.f1.u1.v1.w1&msclkid=cfa36af7d75919085b310fdd07c91c36

Thank you too@SummerCycling for the welcome!

@Silkiebunny That's amazing all the free upgrades and extras you got on that holiday! 😂🎉

Looks like a wonderful hotel. I haven't been to Porto for years and years, I'm sure it'll have changed a lot in the meantime, but I loved it. Hope you have a great time on holiday there @JlL2013

That's a ridiculously long link 😂

I am also not back working, can afford not to work as saved a lot when worked in London, miss the private health insurance and loved the job but hated the commute and frantic pace in the end. I also am not sure where next. Though my son needs me to help him at the moment and my daughter has a year of A levels and I have reconstruction surgery with 3 month recovery time and ESA atm, though runs out end October I think so for the moment makes sense not to work. There are lots of meetings for DS re education and health. 90% of them are pointless as I point out a lot and think most of them agree but the way these things work. Other than that its exercise, travel and Floofing and hoovering after Floof. Oh and renovating house, we have done wooden flooring in living room, new thatched roof, new chimney, nearly done kitchen and 2 female painters are coming to do outside of house starting on Tuesday for 3 weeks. Good luck with the weather to them.

Yes it was incredible Summer and first hotel in Azores we weren't at that long either, whole trip was maybe 3 nights in Azores and 1 in Porto as DH could not get much time off work. The one in Azores was £150 a night B&B but we got so much free and it had 2 big pools at 37C included, jacuzzi, sauna, steam room etc which were open 24/7 then they gave us free bottle of champagne, free upgrade to room with private pool and robes and deckchairs, cake and champagne free party, some spa oil free and a few other presents. 😀It was good though felt like my luck was finally improving after 2 years.

Hi everyone, I'm another blood cancer and stem cell transplant person.
Was diagnosed when I was 62 and now 66.
I have had more blood transfusions and hospital admissions than I can remember and have finished up with untreatable anaemia. They even took my spleen out as it was destroying my blood cells.

I now struggle with shortness of breath and can't walk far but whether that's due to steroid weight gain, total unfitness with a bit of anxiety thrown I'm not sure. Steroids also gave me diabetes and cataracts

I had a CT scan a couple of weeks ago - my lungs are fine but they think it showed lesions on my breast and liver but I'm not worrying about it. What will be, will be.
And I've had fantastic treatment from the NHS

Hello everyone. I’ve just popped in to say hello as I recognise a few names from the cancer thread, which I’m ashamed to say I had to leave (and hide) as it was so completely overwhelming. I still can’t read it now. I’d like to share my story and my ongoing recovery and further plans but I’d just like to settle in for a while first and read your stories if that’s ok? Sending love to you all x

I remember you TooNoisyBoys I think you were just ahead of me in chemo. Hope all is going better for you and your boys now.

Thanks Top for the thread.

I was diagnosed with what was purportedly stage 1a grade 1 endometrial cancer in April 2021, which, after a surprise finding after my hysterectomy turned into stage 3a and a second opinion from the Royal Marsden gave me a 1a ovarian cancer diagnosis my hospital had missed.

I lost a lot of weight - I went from the top of normal to the bottom of normal BMI wise - partly anxiety and partly a change in diet plus fasting through chemo. Initially I found it easy to keep off, but I feel it's more of a challenge now. I worked all the way through as I'm self-employed and was worried about the business collapsing (finances had already been f**ked in 2019 when I was caring for both my DPs and then Covid when I got no financial support and still have a 6-year Covid bounceback loan to pay in my business that I had to take for living expenses).

Physically I feel fairly unscathed, I'm lucky not to be on any medication, and the hysterectomy nor the chemo caused any significant side effects (other than crap hair, it's half curly where I lost it, and half straight where the cold cap saved it!) I have carried on exercising pretty much all the way through, and actually with the weight loss and prioritising exercise over other things I am (other than the normal age-related decline!) in the best shape I've ever been. Psychologically I've had some extremely anxious patches. The work projects I had last year have come to an end and it's only now really I feel up to going out and seeking new work, so I'm not earning very much, but trying to be positive in that this is giving me some development time that I wouldn't otherwise have to pivot to the work I want to do. I've started up my Master's again too. When I was diagnosed I'd been putting my DM first for the last few years, I never went away or even to visit friends for the day, and I realised that had to change and I now spend more time prioritising myself - I've been on lots of trips away, and I'm much more likely to say no to things that don't work for me, and to stop when I'm tired rather than pushing through. It is difficult planning for the future though. DD and I are going to New York early next year, and it's easy to think "What if...". I try not to dwell on it though. I expect I'll be more anxious again though next time I'm due a scan, maybe at the end of the year (though in one way I'd also rather be in denial and never have a scan again!)

Waves to@ceecee32 I hear you re the late effects from the transplant the gift that keeps on giving eh? I too had cateracts removed and they corrected myvision at the same time so will take that as a win.I am under the eye hospital as have another issue related to transplant but it's stable for the moment.
I think I have been seen.by every consultant in the hospital for one thing and another. They must see my name and run for cover or reach for the valium! Can't say I blame them😂

@Alittlewornout Hellooooo.
Yes they corrected my sight when I had my cataracts done. I had worn glasses since I was about 8 years old so it was a bit of a miracle.
I just wish i knew how to get my life back to some sort of normal cos sitting in front of the telly on my own isn't it.
Oh they referred me to a physical activity rehab group I'm absolutely rubbish - there are people getting out of wheelchairs better than I am !

Hello! Thank you @TopOfTheCliff for the thread and it’s great to see some familiar faces.
64, Diagnosed bc aug 2021, lumpectomy and lymph removal , EC, pax, and radio- struggled with side effects of letrozole( still am a little) and lymphoedema.
My great recovery hampered by side effects and also losing dm in may after many many years caring for her- with all that brought.
so now wanting to get fitter, and carpe diem.
the picture @Silkiebunny shared many threads ago from the minack theatre of I believe it was @TopOfTheCliff ‘s boat inspired me through radio….