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.

@dotty2 I'm also finding it very hard to fit in the exercise that I had been doing prior to going back FT - hence trying to park and cycle. I'm still figuring out how to schedule more exercise to replace all the daytime walks I had been doing.

I've just heard back from the lovely Knotty & Pistey and they will be making a woolly hug for Fay's daughter. They have asked for ideas for squares I have given some ideas but if anyone else has any please add/PM. I have done cats, newspaper, US, heart to show love for daughter possibly with first names/initials together, English beach. I'm not a knitter so don't know what's possible but they seem very talented and could probably adjust things. Daughter is 5. Said will start in next week or so. Think they ask people to knit squares and donations for wool.

Fay's obituary is now online.

I have had lots of ideas through which is great.

Went swimming again tonight and botanic gardens tomorrow and even finally did the endo saliva tests, only a year of nagging me.😄

Thanks @Silkiebunny. Her funeral is during my weekly volunteer session at Cats Protection so I'll take some time to think of her with one of the cats on my lap (hopefully). I didn't know her personally but, I'm sure like everyone else, since having cancer it definitely hits me when someone online passes and thinking of her little girl too.
I'm no knitter either, was thinking anything relating to writing.

I follow a lot of people on Instagram who are in the cancer community- a lot of them with secondaries and there have been so many sad deaths this year.

These are often young women with families. 😞

I think that's the thing. Women dying unnecessarily at a young age.

I went to a beautiful winter lights at a botanical gardens with my DH and was lovely and I did think of Fay in her big floral coat walking along the beach. There was lovely music and cafe was open and we had hot chocolate with cream, I had tomato soup and ginger and lime cake, DH had pizza, tiffin and apple punch.

@Silkiebunny that's beautiful. There is something similar near to us and I keep meaning to book- you have reminded me to.

I'm recovering from my ovary op pretty well so now thinking about nice things to do with the kids, and when I can get back to any exercise. Have had some very small walks- it's early days!

It was quite magical Rose and quite a few children on there, would say it was too cold for the under 2s but otherwise the kids seemed to love it as well. Its was the first day its ever been at this gardens so wasn't sure what to expected but it was amazing. DH had been moaning like a toddler before going, its too cold, what's the point in going we'll only be out 10 minutes then need hot chocolate but he was instantly in love with it and we were walking around for an hour and in cafe for 30 mins or so. I love flowers and gardens though normally in summer but the lights and music really made it worthwhile. The ponds were all iced over which added to the magical feel.

Wow @Silkiebunny that is amazing! What a treat.

I took DH out to a folk concert and we walked miles along the sea front looking for a chip shop that had unexpectedly closed for the winter. We made do with a pasty instead. The band were wonderland its their final tour before retirement which is bittersweet. They have a song which spoke to me called "You'll get by" (you always do) which summed up the cancer battle.
Then we went home via Dartmoor to look for the aurora borealis. At the top of a steep hill DH suddenly realised it was very icy so we had an exciting slither back down again. No luck with the northern lights but it was stunning in the moonlight. A good day!

Thanks Top Glad you had a good time too, sounds fun.

I'm a whipple warrior too miss Marple, duodenal GIST. 21 months ago.

Who's still working on this thread?
And if not are you retired ? And how do you fill your days?

I think my headteacher is going to (very gently ) push me towards ill health retirement. I have an appointment with Occupational Health next week and although I still have medications that my asthma team will potentially put me on, I do believe my severe asthma will continue to cause me problems in the future.

Looking at figures I could manage on my pension, particularly if we have no mortgage.

According to the teachers pension I could be awarded Tier 1, not teach but could work in another job or Tier 2 where I couldn't work at all. Hopefully it would be Tier 1 as I'm only 54 (55 in Feb) and still have lots to give in another job. But Tier 2 worries me. I like my own company, love reading, TV etc but I do like working and being part of a team.

Never thought I'd be faced with this choices at 54. Thought I'd work for a long time yet but I do really struggle when my asthma flares up.

Waving to @MissSmiley . How's your recovery going?

@BG2015 I don't work - never went back after my surgery and although I'd like some kind of paid employment, my health is so up and down I'm not sure it will be possible. I miss the company and sense of achievement that came from work. To be frank, I'm quite often bored. I need to find something fulfilling to keep me occupied and that gives me something to look forward to with a good reason to get up etc. My step father retired early before he was 60 and spent the next 20 years sat on the sofa watching TV. I don't want to be like that, the thought frightens me.

I've decided to start off with joining a post cancer exercise/yoga class - hopefully that will begin just after Christmas. My next step is to find some voluntary work for a couple of half days each week.

If you are Tier2 does that mean you can't take any other paid employment?

Yes Tier 2 means no work at all.

I'd be quite capable though of doing some sort of admin work as long as I don't need to project my voice or do a lot of talking, so Tier 1 would be fine.

Sadly, the teachers medics decide.

I was 48.5 when diagnosed with 2 cancers BG, had treatment for a year until Aug 22 and have not returned to work and may well not. We have no mortgage and was previously employed in a well paid job in London and saved a lot so no financial pressure to work, married and husband's income covers bills so if I spend its just work on house (which should add value) or holidays.

I did used to love working in London but I do feel like I've been there, done that and also we moved to a chocolate box cottage with pretty garden but 2 hours each way commute. I still read a lot of academic things to keep my brain working. Its a bit strange to stop so young but also nice to just have pleasure things to do. I also don't know what my life expectancy is so I feel dates have all shifted anyway. Predict Breast gives a guess but there is such a wide range, it indicates something like 15 years so 63. But could be anywhere from next year to living to 100. That part is hard to plan for but I have one final salary pension and state pension which are fixed and rest is until it runs out.

My lovely son went into hospital a month after my treatment finished and they against our and his will gave him a drug which went very badly wrong and was left in almost a coma (Catatonia) until Feb 23 then began to see again and could walk again with prompting and from then until Apr 23 he was on almost all home leave then at home from then. He requires a lot of support still and may do for life unless one day he recovers. He currently can see, eat by himself and walk and game on his ipad but that's it. No speech, no facial expressions, no communication other than if someone he regards as responsible for hospital comes round he will get distressed and smash things, no writing, very limited reading, won't leave house due to fear of hospitals. So there's care of him, which doesn't take that long as he prefers being alone, but needs all food and drink making, help with clothes etc and can't be left for too long (1/2 a day is fine) and a few cahms meetings, it was masses of meetings about 10 a week during his hospital admission. Now its 1 every 1 or so. And a daughter who is doing really well and applying to Oxford, finishing A levels this summer. She has a couple of jobs. She'll chat for a couple of hours a day. Not much input required but would feel happier having her get through A levels and at university and happy and settled before considering work again. Plus I have reconstruction coming up at some point with a 3 month recovery time.

Apart from that its swimming 3 times a week with sauna, jacuzzi, steam room and husband comes too. Work on house, in past year we've had kitchen redone, outside of house painted and windows done and floor done in living room. Lots of travel, Maldives, Mauritius, Azores, Porto, France. Until next summer its DD at home, possibly a year more if takes a gap year and DS indefinitely and he needs one of us here at all times, well most of the time. But I only miss work for an identity and the respect it brings. DH is considering early retirement and older than me so would be anything from 3 years time. That would be lovely though would need to check with money for that. Then I think we would travel, do work on house and garden, steam trains, swim, canoe as long as can work round caring for DS. I would love to go travelling for months and months but probably not practical. I'ld be off to the jungle in a shot, just wish DS was well as he loves jungle.

@Silkiebunny so sorry to hear about your son. Life really does throw us some curve balls doesn't it.

You seem to keep your self busy. I know I'd probably be ok as I can keep myself busy.

It's just strange when you've worked all your adult life to suddenly have no focus. It may not come to that though, I potentially have another couple of drugs my respiratory team can try me on.

Thanks* BG Yes life went pretty perfectly first 45 years then lockdown but that was everyone so meh. But then cancer then inpatient together was horrific and it initially felt like life would only be bad from then on. Whereas 6 months on from that it feels like DH, DD and I our lives are fine again and everything is going well but DS is stuck in like a catatonic stupor and nobody knows how to get him out of.

Yes I think your job can be your identity especially if you had a full on or high profile job and it seems like who am I now? It also feels wrong just to be doing fun things though you soon get over that. I do feel like I've been there, done that re working so only miss small parts of it. Just the researching side but can do that anyway and the if somebody asks what you do you can explain. I got asked that the other day where I worked at a dinner party and it was a bit hard as you don't really want to explain abut cancer or inpatient to someone you just met. I definitely think you need to keep active physically and keep your brain active but you can fill time especially if have children or grandchildren. It feels a bit like being on a permanent holiday when not dealing with DSs issues. You can always volunteer. Its worth exploring hobbies as well. DH does the piano. At swimming when I don't go with DH lots of people chat to me and would be easy to meet people there. I presume you could still volunteer with the type 2. I always dream about travelling if I didn't have DS to look after, would be off on those turtle projects or Borneo. I quite like Ascension Islands too. Though often they want a biology degree, hmpf.

How totally disempowering @BG2015, especially when the rhetoric of healthcare is around people being involved in decisions about themselves, do they even get your opinion?

I work, mainly because I have no choice, I'm self-employed, and my pension isn't good enough to not work. I am pretty much physically fine, but mentally it's a struggle to motivate myself, especially as I'm working on my own a lot. There are a lot of women that say that after the menopause though, so it is possibly not specific to cancer. Chemo brain really isn't helping either!

@SierraSapphire I think if you know your consultants well enough to have a conversation with them (I do with my cancer drs but not respiratory) you can discuss with them how they can potentially word their findings/ conclusions.

I can't teach in my current state but when my asthma is well managed I'm fine.

I know a lot of my colleagues agree that they struggle menopause wise and I do have some brain fog and low mood stuff going on but the majority of my difficulties is my asthma.

I was forced out of work as a GP in 2020 by cancer no 1. I turned 60 and got my full NHS pension after 37 years so have gleefully removed myself from the medical register. My goldfish brain after 3 courses of chemotherapy is incapable of remembering things for more than 5 minutes so I wouldn’t be safe. I have a very busy and happy life outside work running two sports clubs, one is my hobby and the other is DHs ( we do both sports) I have a very long way to go to get fit again with yoga gym and swimming and cycling. I have three 90 year olds to look after, and six DC between us. I have been in the board of a local charity and might go back to that or maybe volunteering for a cancer charity. I can’t imagine having time to work now and the environment is so toxic it would be very hard. I was never defined by my job but my hobbies and family. I feel very lucky to be financially secure, much loved and useful to other people.

One thing that is a bit odd is that of you stop work at 50-55 around 80 percent of women are working then hence the where do you work questions though that is twice in a year and you find most other people not working are either retired in 70s and 80s or in 20s or 30s with young kids and it does feel strange, like you have to reinvent yourself and make a new normal. As DH works from home and kids are home that has been much easier for me than say if it was just DH and I and he was out long hours. I am fine with different age groups but sometimes it's more relatable to have your own age group though I do find them in swimming pools. I don't have brain fog anymore, that's back to pre cancer now but emotions are tricky with unmedicated menopause etc.

I wasn't working when I was diagnosed as I quit my job when DD started school (inflexible employer and no family support nearby). I started looking for jobs at the beginning of 2020 which obviously stopped due to lockdowns.
I couldn't do anything high pressured now due to menopausal brain fog or if I have a series of nights with little sleep.
I work as an exam invigilator on a casual basis. Obviously work is only at certain points of the year and the money isn't great but it's something. We're asked which dates we're available over exam periods and are given shifts accordingly. I don't have to play catch up in an evening which I used to do in my last job.

We had proper snow this morning by the standards of my flat but of the East Midlands. We went for an early walk before it got slushy and DD16 who rarely wants to walk surprised me by saying she wanted to come. So that was a lovely start to the day.