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.

@Remaker i think you should disclose because if you come at it from the perspective of ‘and that has made me realise even within the cancers you have many different experiences’ that’s powerful among us survivors/rebuilders

@remaker good luck and another vote for share!

That research sounds interesting @TopOfTheCliff .

I must admit I did wonder about the value of my last follow up - just an internal exam which presumably won't show anything 'small' and just restarting. It means a day off work and a bit of a mission to our cancer centre which is a couple of hours by public transport. Next proper scan is July time I think which will be one year post treatment.

But I guess it depends on the cancer type and what options are available should stage four be reached; the balance of quality of life over quantity etc. That said, I'm sure we've all heard of people who were diagnosed as stage four and have been NED for many years - there's certainly a few on my cancer FB group

I’ll grill DD2 for more details when I see her as I don’t know the full details. She is also looking at cancer care in dementia patients because there are obvious issues about putting confused elderly folk through investigations and treatment that may not improve their quality or quantity of life and often it is their relatives who push for this. Interesting stuff!

Meanwhile we have full End of Life care set up for FIL, and MIL is admitting she is exhausted and needs help. It’s amazing what resources are out there waiting. Nothing seems to be too much trouble.

@TopOfTheCliff I think it’s an interesting area to discuss. Quality of life rather than length of life.

Was reading an article in national geographic about health span, rather than life span. I can’t help feeling I’m there at the moment.

I’m going through a sore and fed up bit. Swam gently yesterday but now have sore shoulders. Think the endo adhesions on my right side are pressing on my bladder area. Maybe it’s time to get back into the system for this issue but I don’t have the energy.

Phoned up re reconstruction yesterday. No idea when I will be seen because it’s non-essential. I think by going private initially to deal with the cancer I may have shot myself in the foot. I wonder if the public system would have done the reconstruction at the same time as I wanted. Could go back into the private system if desperate but don’t have that kind of money just lying about.

@remaker I’ve been considering this. I think yes at an appropriate point in recruitment. Possibly when you are offered it and are negotiating hours etc? Or keep it to yourself until you feel more comfortable.

I’m feeling the pressure to get a job (I put this on myself) but know that if I go back into teaching I am likely to crash and burn which will do my mental health no good.

A friend who I’ve not seen for years is coming to stay for a couple of days. I just wish I felt well at the moment.

Thanks everyone for your votes. I put the application in last night and yes I disclosed. I think it makes me a good candidate as I already have the right skills plus now I have the understanding too. Fingers crossed!

@FairyWren7 I’m so sorry you’re having a tough time. I have to say for my mental and physical health giving myself permission to not work or job hunt for the past 6 weeks has been very helpful. As for the medical stuff my treatment has been a mixture of public and private that I don’t fully understand. My hysterectomy will be private as I want some control over the timing given I’m job hunting right now. But all my liver investigations were public which I didn’t request - it just happened. We do have a strange system.

@TopOfTheCliff my last job was in aged care with a specialist dementia carer and dealing with families is one of the biggest challenges. My grandmother had dementia and when she developed a melanoma my mum and siblings opted for palliative care so she could stay in the care home with the same staff that knew her well. The extra distress of treatment wasn’t worth it.

@Remaker that's great news. Keep us posted of progress. You sound the ideal candidate.

Looking after FIL who has had dementia for 13 years has been a huge task for MIL. She is utterly devoted to him. If he developed a cancer it would be a way out of an awful situation which seems endless. The family has already turned down surgery for a heart condition he has. They love him a lot but it is awful to see him bed bound, incontinent, and sleeping 22 hours a day.

@FairyWren7 sorry you are having a down day. I find my aches and pains fluctuate and I can't work out why. Today is better as I have been resting a bit more.

I seem to have come good as the morning progresses. I took some ibuprofen and took the dog on a long walk before it got too hot. Now waiting to collect from friend from the airport bus. She had breast cancer some years ago so she knows what it’s like. She’s a bit of a character and I’ve not seen her for a few years. She’s one of the great ladies I made friends with whilst teaching in some weird and wonderful places.

My main issue is I need a job. I keep ruminating on it. I have two applications in at the moment that I would like to get. I’ve said I’ll do supply for term one. But after reviewing our finances my brain is saying - monthly salary! Job security! :)

@remaker I have no idea about the system either. Whilst I am grateful I was treated so well and quickly. The out of pocket costs were crazy and they weren’t explained to me. So I naively assumed my insurance covered it because no-one said any different. I won’t make that mistake again. Don’t think it’s worth paying the insurance because of this!

Good luck with your application!

Good luck with the job application @Remaker - I think I would have disclosed too, though I do worry that although a lot of organisations, particularly charities, make a big thing about "lived experience", they don't really mean it.

I still seem to partly be on New York time, I didn't properly wake up until 745 where it used to be 5am, this is good in some ways (more sleep), but not so good in others (starting work)! I feel like I need a bit more time to get going in the mornings than I used to. I'm working from home, but I'll go to a bodybalance class at the gym late morning, and maybe have a mooch into town in the afternoon in the strong winds! I enrolled yesterday for the last two taught modules of my M.Sc, I was a bit nervous at starting before I've had my scan results, but apparently I can get a full refund up until the 1st of March. I've had two years out already though and will only get more time out in exceptional circumstances. I find the studying difficult, but I think I just need to think of it as a couple of seasons of sacrifice, and I just need to cut out other things and focus on my study, knowing it will end soon!

I also find I need more time to get started in the morning. Though, as with many things about my body these days I guess it's a little hard to know how much of that is down to cancer and how much is down to general ageing and being 50 not 30. I used to be able to get out of the door within 30 minutes of the alarm going off, showered, breakfasted and dressed smartly enough for a day in an office.

I'm sorry to hear about your FIL, Top, that sounds very tough indeed.

Oh god I wake up feeling about eighty most mornings now! I used to be a proper early bird as well.

Hopefully not age at 36, but I think cancer treatment and early menopause are certainly playing a part

I also can't do too many things in a day, like go to the gym before or after work, I generally have to do one thing at a time. After it could just be normal menopause stuff though rather than cancer-related.

Also feel about 85. Think it's mainly the menopause insomnia that's kicking my arse. 5 hours sleep is not ideal, especially working full time. I've really not managed to get it properly together since the Xmas break.

I went for a pre op blood test today at the private hospital. What a contrast! I was called madam and offered a free coffee while I waited. The rooms are nicely decorated and furnished and everything looks new. Happily I was done and out to the coffee shop to meet my friend within thirty minutes. I am counting down and have two days left to do all the jobs I need to get done before surgery.
I am strangely excited to be finally getting this hip done. I can’t believe it will be any worse than anything else I have been through.

I had my tonsil op privately, DD thought the room was like a Premier Inn. I have to say I gave practically no thought to the GA or anything, it seemed like nothing compared to everything else, though the anaesthetic really hurt going into my knackered veins and the recovery was much more miserable than the hysterectomy! Good luck Top, it's like all these things, you just want them over and to get on with life.

I would definitely get seen City even if it is long-term side effects of cancer treatment there may be things they can do.

I am just on Tamoxifen and other than that I swim 3 times a week and take a wellwoman 50 vitamin around once a week. I can swim as well as I ever could, well apart from being lopsided with the one breast unreconstructed, have a few aches and pains but nothing much, a bit of tingling in fingers and face and insomnia and eyesight is blurrier since chemo but very rare for me to be ill or tired or weak now. Went swimming again tonight and did 103 lengths and the jacuzzi. I am really happy with fitness and energy levels. I still need to lose 6.3kgs to get back to pre cancer normal BMI but getting there, hair I want back to at least chin length and its only an inch below ears still. I do not have much of the chemo curls left, just a wave but wavy is fine.

Hope the op goes well Top My second mastectomy op was private on the NHS and it was so nice (esp as free) to have own room, own bathroom, lovely meals and be able to stay overnight and be given pain relief to take home. It was so nice I could have stayed longer. 😂

Good luck with the job hunting Remaker and Fairywren

I’m on various hip groups and the fuss these people make about one hospital visit for a simple orthopaedic procedure is amazing. When I think what us grizzled cancer veterans have put up with I want to say “get a grip” but I don’t. Thoughts and prayers people!

@TopOfTheCliff Absolutely - I feel I’m being quite ironic when I sympathise with other peoples (time limited) illness these days. Cancer is such a whole new ball game!
It brings less obvious issues too - I got the shingrix vaccine and was wiped out for two days. Didn’t see that coming as usually ok after vaccines. Without cancer there’d have been no need for the jag.
But obviously grateful they can do so much these days.

I did a spin class this week! Not as hot/ sweaty and about to have a cardiac arrest as some people there. But I still did it.
(I was once really scared the man beside me was going to arrest - but we got to the end with him still cycling away - grey and sweaty)

Love to all xx

I’m about 6 weeks on from active treatment and on letrozole and I’m exhausted. I barely noticed my natural, slightly early, menopause. I’m managing to do more, but still need to rest for about half the day. My brain doesn’t work properly either. I can’t imagine being able to function in my very demanding job. Is it still early days to be worrying about this?

@tam23 very early days Tam, I think it can take months even years to get energy levels etc back again. Each person is different.
I managed a good 5k walk with the dog today in the heat and then a rather lengthy shopping trip with a friend and I am exhausted and I’m months on from active treatment now. But on immunotherapy which I believe still makes you tired.

Be kind to yourself and don’t push yourself before you are ready.

Like @TopOfTheCliff says, cancer is a whole other ball game but I think we’re a bit of a merry bunch here who have high expectations for ourselves!

I can't concentrate on work at all today, I'm in my coworking space, I've done a bit but I've just been sat there for the last half hour, though I've come out now into town. I'm just too anxious about getting a call about scan results to focus. That's the other issue with work, even if you are feeling physically okay, there are often other things going on psychologically.

@tam23 As I’ve just posted - I do do exercise - but also listen to my body more, and there’s plenty of rest time too. I also just temper how much effort I put in - no reason to overdo it.
Our bodies go through a huge amount of punishment, be kind to yourself. But also do try to get some fresh air everyday- even if you don’t actually walk in it.

I’ve stopped organising anything first thing, no way am I rushing out the door for anyone. And if I don’t sleep well because of my poor painful feet (neuropathy), then I know I can rest a bit longer in the morning

Its about finding out the pattern that works for you, and what you want to prioritise- the days of just taking energy for granted are gone. Xx

Thank you @FairyWren7 @SierraSapphire and @RedRosesPinkLilies For your good advice. I’ve always been a person to just power through and it’s hard accepting I can’t do that. Your kind advice has made me feel better about that.

@tam23 I picked up a regular cold from DD about 2 months after chemo finished and it knocked me for 6! I ended up with a chest infection on ABs. I think I’ve only had one or two chest infections in my life before. It made me realise how patient I needed to be with my recovery. I’m now 6 months post treatment and feeling much better and stronger. Currently trying to dodge Covid as DH has it. He’s isolating in the spare room and so far the rest of us are ok.

My SIL gets the results from her second biopsy today. I’m nervous for her. She knows she has breast cancer but not the exact type or stage yet or what the treatment plan will be.

Top I know what you mean about people making a meal over medical things. Had a lovely weekend away with 3 gf - 2 of us have had cancer in the past 2 years. One of the non cancerous ones shared this verrrry long, detailed story about her ‘near miss’ with cancer. Complete with descriptions of her absolute terror and then happy ending yay no cancer what a relief! Of course I’m pleased for her that she’s not dealing with this crap but it did feel a little tone deaf under the circumstances.