The Great Recovery part 2 - After Cancer treatment what next?

[TopOfTheCliff]

You may have finished treatment for cancer, be NED or in remission, or it’s just a lull between storms. You don’t want to dwell on the past but look forward to the future. You know you need to eat well, get fitter and pick up the strands of life again. This is the thread for you with fellow travellers. Join us!

There is the General Cancer thread for those in active treatment:
https://www.mumsnet.com/talk/general_health/4969445-cancer-support-thread-92-christmas-happy-hour-at-the-patience-inn-7pm-tonight?page=10&reply=132553156

And there is the Stage IV thread for those whose treatment is ongoing:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=132555664

I don't really mind discussion around lifestyle measures, it's talking at a population level and there will always be outliers for whom it doesn't apply for genetic or other reasons, and I don't take the conversations personally. There are clearly links around alcohol, smoking, lack of movement, weight, and I know that insulin resistance is a factor for endometrial cancer, and there are lots of supplements that have a an effect on the risk of recurrence. Lots of us have done things, particularly exercise, to recognise our health could be better. I think chronic stress contributed to mine.

Talking of chronic stress, I am still flat out with work though taking some time off tomorrow to go to the gym with DD before she goes back to university.

That thread several posts were not talking at a general level, it was naming cases with cancer saying they had caused their own cancer and gloating about how they won't get it as they have a upf free diet or whatever. Saying even people with genetic cancer caused it themselves. Saying exercise causes cancer. Saying you don't need to follow oncologist advice just eat a plant based diet. It's eating disorder based advice largely and think should be taken down. I was upset by it as it taints the memory of the lovely people who died who did nothing wrong. Don't want to discuss it further just want to block the nasty posters. A population general discussion based on fact would be fine but that isn't possible on MN.

@Penguinsa I agree with you. I was going to say more but I don’t want to give the unhelpful views oxygen. 😊

I think letrozole is causing me some weight gain round my middle. I’ve always carried weight around my hips and thighs so this is a new experience for me. I’ve been doing lots of yoga and walking lots, as my Dexa scan revealed osteopenia. I’m also trying to eat smaller portions now. Any advice for targeting belly fat?

Hello everyone, please could I join this thread - I've recently completed the bulk of treatment (chemo and a mastectomy) for HER2 positive breast cancer, and have a few more months of phesgo treatment to go. I'm 41 and have a reception age DC.

I've recently had the good news that I had a pathological complete response to chemo, which is a relief. I'm wondering what to do with myself now. I'm thinking about a phased return to work although people keep telling me not to rush.

I'd also like to make some lifestyle improvements although my digestive system is still fairly unhappy post chemo and fibre is definitely not my friend. The never ending rain is also not helping with my exercise plans. I don't think my lifestyle was terrible before, but this seems like a good opportunity to try and make it a bit better.

Hello @demivolte and welcome!

Great that you had a full metabolic response to the chemo and the finishing line for treatment is in sight. I'm similar as in I didn't live a terrible lifestyle before but have definitely become more conscious of what I'm putting in my body and what I give it to do. I feel like I owe it one as it got me through treatment in more or less one piece!

Hi @demivolte good to meet you. I'm so sorry you've been hit so young, with young DC to care for; it must be hard. But glad you're as cured as can be! I was told that it takes at least a year to recover from chemo, so I hope/trust things will get better for you (and the weather of course!). I will join the chorus telling you not to rush back to work...

Welcome aboard @demivolte I am so pleased for you about the PCR. Joining this thread is a statement of intent. Even though there are still some mop up and preventative treatments left to complete you are now Cancer free!
Are you still on full pay from work? If so then don’t rush back as you have been through a very gruelling experience and it takes time to process mentally. The Breast Cancer Now Moving Forward course is well worth doing if there is one near you.
Obviously if money is tight then it may be better to get back to earning. But do try to allow some time for self care, exercise or yoga or something that nourishes your soul.
I have been in boat maintenance mode today, getting my pride and joy ready for launching. Still trying not to overuse my right arm, but the scar revision is healing nicely.

@ClashCityRocker @sorrynotathome @TopOfTheCliff thank you for making me feel so welcome, and good to hear the scar revision went well. It's quite strange to think that I don't have cancer currently as I had only just got used to the idea of that I did have it.

It has been a difficult few months, and the childcare logistics during chemo were challenging, but I suppose in some ways it was easier than dealing with older DC who would have had more understanding of what was happening.

My pay is about to run out which adds a bit of pressure to get back to work. I think however I need a bit more time to recover from surgery before I make any decisions and I would probably also aim to reduce my hours when I do go back. I'd like a bit of time to do things such as exercise.

I will look into the Breast Cancer Now course and I think Maggie's also run something similar. It's always good to have a plan.

The weather forecast is also looking better - 17 degrees tomorrow apparently.

Thanks Tam I am not sure if you can just target belly fat though maybe some stomach exercises or a sport that helps the stomach might help.

Welcome Demivolte Sorry you got cancer so young. I was 48 with 2 older kids, back in Nov 21. Also similar a fairly healthy lifestyle before but am doing the 3 to 5 hours exercise a week that is supposed to halve the risk of reoccurrence for breast cancer though you build up to that. I do swimming mainly but walking also counts. I think any activity probably helps like gardening or housework. I'm not an expert but I think you may be eligible for benefits like ESA or PIP - I get ESA the non-income based one. Its not that much but it makes a difference. If you do chemo you go in support group. Macmillan can apparently help. And days out there's a lovely charity SomethingToLookForwardTo which gives things up to a year after treatment ends.

Just been swimming and did 100 lengths. Our membership ended last month but DH rejoined, they let him have old price and gave guest passes and let me in for free and gave me a free Starbucks coffee. Have 10 guest passes. I should have DIEP later this year.

Are you going on a sailing adventure soon then Top? I will get back into visiting gardens soon, have tickets to the tulip festival at Tulleys. Bone scan on Monday. Still no MRI letter.

Welcome @demivolte to one of the most supportive corners of MN. Congrats on the great response to chemo. I remember the first time I saw my lovely oncologist after I’d had surgery for bowel cancer and I said something about having cancer. She corrected me - you had cancer. You don’t have it any more. That was a nice realisation.

I’ll join the chorus saying don’t rush back to work. I thought I wasn’t rushing back and was made to feel like I was being pathetic taking 6 weeks post chemo before I went back. I lasted about 3 months before I resigned. Chemo is a huge thing to recover from, give yourself time.

Im recovering pretty well from my hysterectomy but I’m so bored! Can’t drive yet or walk any distance so I’m stuck at home watching Netflix and reading books, which sounds lovely til it’s all you can do.

@demivolte I truly believe that spring is about to crash land with glorious sunshine and warm breezes wafting gently. I’m ready for it!

@Penguinsa before I go boating I have the much anticipated trip to Normandy with my cycle club. Lots of my best cycling buddies are going and we have five nights in France touring the Cherbourg peninsula, D Day beaches, Pegasus bridge etc. I am going on my ebike to make life a lot easier and I am pretty confident now that I will manage. Tonight I went out on my bike and joined DH and his gang at the pub. DH was so thrilled he took me for a celebratory McFlurry on the way home 😂 When we get home I will start back on my road bike on the slow slog back to Audax fitness. I am so happy to be finally past all the hurdles and getting better.

Welcome from me @demivolte - I'm self-employed and I worked all the way through chemo so I had some income and to keep my business going, only really taking the day of the infusion off, but it took me over a year to start to feel normal again, so I wish I'd been able to recover properly.

I went to swim club last night and belted up and down the pool after a day delivering training, and now I'm not sure if I can get out of bed 😂. Supposed to be taking DD to the gym today, but it might just consist of sitting in the spa and eating lunch. Have a funding application to finish first though.

Welcome to the thread @demivolte .
@Penguinsa I've booked to go to a tulip festival too - it's in aid of the Royal Shakespeare Company costume department and I think there will be costumes to look at, as well as tulips. It's on May Bank Holiday, plenty of time for the weather to improve.
@Pramodshahi - lol. If only sitting about for 3 hours, cross legged on the floor or otherwise, led to weightloss. I'd weigh about 7 stone.

Morning all! I have a padel match today and will go for a swim after. Feeling much better after my bout of sepsis - the original infection must have been brewing for a while as I was feeling quite run down but it down to changes at work.

Still having the odd flashes of 'what if it's cancer related in some way or other' but trying to apply logic; I had an infection, it turned to sepsis, antibiotics treated it, I am feeling better.

Off to Barcelona next week, hurrah!

Also have a trip kayaking round the lofoten islands booked in June which I'm considering postponing...I'm not sure I'll be fit enough and the thought of being up in the arctic circle far from any medical care is a bit daunting. If I postpone I'll lose about £400 which whilst a pain is ok. I have to decide by the end of this month or I'll stand to lose a further £1,000. Postponing seems like a bit of an admission of defeat and I'm worried that if I don't go something will crop up in between. Gaah! Realistically I think I should be fit enough by mid June, I'm improving week on week, but that's provided there's no more medical set backs .

God to go back to the days when I didn't even think about such possibilities! If I postpone, realistically it will be next year I think.

Thank you all for the kind words, I note the general consensus is that it's probably not best to return quite yet!

@Penguinsa good point, I had forgotten about contribution based ESA but should be eligible as far as I can tell. Swimming and a Starbucks sound lovely.

@Remaker I agree enforced staying at home is no fun! I hope your recovery goes swiftly and you're able to do a bit more soon.

@SierraSapphire I'm sorry that you had to work through chemo, that must have been incredibly tough. I'm lucky that my employer has a decent sick pay policy. Enjoy the spa and lunch.

@ClashCityRocker your trip sounds amazing! Could you see how you feel over the next couple of weeks or look into whether a shorter postponement would be possible? It would be nice to rewind to when medical care wasn't something I ever really thought about.

It isn't raining here and it looks like the sun is trying to come out - I think I have become mildly obsessed with the weather.

Hello there! I didn't know this thread existed until I started exploring this section (thanks to the delightful cancer risk thread that appeared recently). I'm so pleased to have found you all.

I'm currently NED having had a bowel cancer met surgically removed from my lung earlier this year, along with a largeish chunk of said lung. I've been told that the cancer is more likely to return than not, so I'm simultaneously preparing for that possibility mentally while attempting to live my best life. Or at least figuring out what that might look like.

I read through the whole thread and saw a few PPs mention ongoing peripheral neuropathy. I had 4 cycles of CapOx back in 2020 and the peripheral neuropathy was quite bad. I remember the following summer I kept thinking I had sand in my sandals but it was just the loss of feeling😬It came and went a little but now, almost 3.5 years later, I think it has almost completely gone. I've heard of people having improvements for 5+ years afterwards, so don't give up hope! (A nurse told me to accept that it might never get better; I ignored her.)

Feeling rubbish today, I've taken one of my migraine pills and will probably need another. It turns out my body really doesn't like sitting on the sofa for 6+ weeks, who knew! My back is creaking and groaning as well. I'm gradually getting moving again now that the pain from the operation is less, but I think I'm going to need physio to build up my arm strength again.

Anyway enough rambling from me for now!

Hello @LucyWarlowRidesAgain . I hope you get as much out of this thread as I do - it's a lovely supportive place here.

Welcome to @demivolte and @LucyWarlowRidesAgain. This is a lovely supportive thread.

I’m still learning to pace myself. Yesterday walked around 5000 steps and swan for 40 minutes. This morning was sorting out my admin but had to stop after an hour and a quarter as my brain only works for that long now!

@ClashCityRocker Your trip sounds really exciting but I understand why you feel you need to postpone it. I think leaving it till the last point you only lose the £400 and seeing how you feel then is the best option. It sounds amazing!

@MissMarplesNiece maybe if we sat on the floor cross legged instead of raiding the kitchen for snacks we would be thinner? I’m sorry I missed the deleted nonsense.

Welcome @LucyWarlowRidesAgain we are all trying to recover strength and fitness. How is your lung function since the surgery? Do you get breathless? I have a good friend who had radiotherapy to her oesophagus and it damaged her lungs. She rides an ebike now and it helps her a lot.

Im back from a morning at the Eye Clinic. It was all very interesting but I didn’t learn anything new. I just have blepharitis and need to use drops 2 hourly. At least I will get them on prescription now and it was confirmed I haven’t inherited glaucoma or wet macular degeneration from my parents yet! I came home on the bus and walked up to the Top of my Cliff so am feeling virtuous!

That’s good news @TopOfTheCliff. Pleased you don’t have any extra nasty eye disorders. You’ve definitely had your fair share.

That sounds lovely MissMarples with the tulips.

Enjoy Barcelona Clash Yes know what you mean about the kayaking trip though Scandinavia has excellent healthcare, its just the price would scare me. I looked it up and someone said they helicopter rescue you which sounds fun but not if you get the bill. I would probably go ahead but I'm not the most sensible person.

Demi Hope you can get ESA and pressure off having to return.

Welcome LucyWarlowRidesAgain and hope you are feeling better today and stay NED.

That sounds nice to go cycling with friends Top You just missed more top quality advice in the deleted post.

I’m so annoyed with myself. DH is happily pedalling round the Scottish Borders so I thought I would catch up on boat jobs. I managed to fall about four feet off the boat roof into the cockpit and landed on my back and bruised a rib. It hurts to move, breathe, cough etc. I don’t think I have cracked it and there’s no visible bruising but I can’t do very much. I am such an idiot! I’m dosed up on lots of painkillers tonight but will have to change my plans for a few days. He is right I am not safe out on my own.
I hope the rest of you are doing better. And at least it has stopped raining for a day.

You poor thing Top hope the pain starts to improve and get properly checked out at hospital if you need to, am sure you know better than me where to go. Maybe take those men up on their offer to help with your boat.

Booked a garden visit for Sunday and may do some gardening or swimming tomorrow, need to plant the magnolia tree. I am enjoying watching lots of the train programmes with Portillo on the BBC iplayer. DD has told me she will go on holiday in the summer with her boyfriend and told me to choose where they go from the TUI site. I asked what the boyfriend liked doing and got he likes doing whatever I want to do. 😂Then what do you want to do, don't know, swimming, I don't know if he can swim, yes I bet he can.