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

Well done @demivolte it is a step towards the new you! I try to do at least one thing every day to help my recovery.
I took DH in for his skin cancer surgery today. He was really anxious so I taught him some breathing exercises. It felt weird because I have had 16 operations in my life so far and he has had none and hates hospitals. I have been to the dentist, then physio in a bit, then will go back to collect him.

KBO folks
Top x

I hope your DH's surgery has gone well @TopOfTheCliff and that your DD's latest exam has been good @Penguinsa

@demivolte - I think ultimately the best exercise is the one that you like enough to stick to and which fits best into the rest of your life. I agree with @Penguinsa - start small and be kind to yourself.

But if you do fancy running, don't assume Couch to 5k would be too hard. I've done it several times, including when I was very unfit and hadn't exercised for ages when my DCs were small. I also did it while I was having radio as I wanted something I felt in control of at a bit of a crappy time. It is designed to allow for steady progression and you can always repeat weeks if you are finding it hard. I'm prioritising swimming at the moment (or will be when I'm allowed) as it's good for lymphoedema, and so haven't been running much, but there have been times when I've been more into running. It is easier to fit in around other stuff, and I do really love running on holiday when we go away to the seaside. Nothing as lovely as an early morning run by the sea and coming back to a nice big breakfast.

I got weighed at my lymphoedema appointment yesterday and have indeed put on weight but the nurse was so lovely and said 'I'm confident you will lose it - you're very active and motivated'. I thought that was a very helpful and encouraging way of framing it - not 'you must' but 'I'm sure you will'. I am holding on to that thought!

@TopOfTheCliff hope your dhs surgery goes smoothly. Gosh you've both been through a lot of late!

@penguinisa glad she's getting a break after this one.

@demivote totally agree that the best exercise is one you enjoy and can stick to. I'm quite crap at putting in hours on the cardio machines, or running in general, so swim, kayak and play padel, plus do circuits once a week with a PT and a wee bit of weight training. Oh and I've started boxing again - only pad and bag work, think my heamotologist would have a fit if I was actually sparring!

Well DH had a stormy day. He had left his Basal cell cancer too long while I was having cancer treatment and the surgeon ( who is very experienced) said it was the deepest he had seen. He was worried about damaging saliva ducts and facial nerves so some cancer may be let behind and DH may need radiotherapy. He is home, with a face like half a football, and a black eye. I feel bad about leaving him but I am going to help my brother move his boat tomorrow. I can always come home if he is struggling.
I had a really good physio session today. It was the end of a course of six sessions so we did a video and compared with the first session. I look so much better! Less flabby, more active and walking well. Hopefully another six weeks will see more progress.

Sorry about your DH Top

Thanks Dotty and Clash Yes very glad she gets a break for a week and a half after the one tomorrow and today's went very well which was a relief.

Meeting with cahms was challenging they were trying to discharge DS to nothing but GP with a letter despite him not talking or writing or leaving house and also still a little catatonic at times. But managed to argue we can move to keyworker autism service instead though that apparently requires a best interest meeting but looks like that will get sorted.

Then went swimming which was good to do.

@TopOfTheCliff So sorry to read about your DH. I hope it all turns out well for him.

@dotty2 The nurse you saw sounds very kind and encouraging.

Gosh - sorry to hear about your DS, @Penguinsa - that sounds very tough. And your DH, @TopOfTheCliff

I sometimes find myself feeling almost nostalgic for when I was having chemo and I had a 'get out of jail free' card for all of life's other challenges, and could just abdicate responsibility for nearly everything else to someone else. I think one of the tough things about recovery is finding a balance between going back to supporting others, but still making enough time for yourself. Sending strength to everyone.

Thank you @dotty2, you have reminded me that I did used to like running although have barely done any since having DC. I think the difficulty is going to be finding time once I'm working again, though I'm not likely to be on full hours for some time. At the moment I walk quite a bit but would like to do something a bit more intensive.

I'm sorry to hear about your DH @TopOfTheCliff and your DS @Penguinsa, that sounds very challenging.

Thanks Dotty and Demi Another A level exam done today fine with lucky purple socks and now a break for 1.5 weeks, very glad of though DD is cheerful and calm.

Well I woke up feeling very grumpy. Had my routine echocardiogram yesterday which was quite painful over the mastectomy scar and then I kept accidentally rolling on to that side in the night and it was sore this morning. Anyway I went and did a yoga class and then had a big slice of cake and feel much better (not sure if I can thank the yoga or the cake!).

Glad you feel better now Demi I think its quite common to feel grumpy after cancer treatment / unmedicated menopause but I am the same it normally passes quickly and feel cheerful again, exercise and things like trash TV / music / distraction do help.

Break from A level exams for week and a half so DD out with her boyfriend for dinner. DS seems to have added toasted cheese sandwiches to the range of things he makes.

Hope everyone has a good Bank Holiday weekend. Really rubbish weather forecast though hopefully will get more gardening done when there's a break in the rain. If not it'll be swimming.

Good you've got an appointment with the breast clinic @Penguinsa - hopefully it's nothing and maybe they can follow up your other monitoring (or lack of it) too.

How's your DH @TopOfTheCliff ?

I agree with you @dotty2 about the run by the sea, I did a lot of running over the years on the cliffs between Watergate Bay and Bedruthan Steps. Haven't been to Cornwall on holiday for ages though, and I can't run any more because I've got a hamstring injury that just refuses to go away, though once I can afford to pay for physio, I'll get it looked at.

I just got undressed to get into bed to read at 8 pm last night when I got a call from my mum that she wasn't feeling very well, so I went round, the paramedics came and she was blue lighted to hospital (though I beat the ambulance by going a quicker route, maybe a missed vocation there 😂). I stayed with her till about 1:30 am, I haven't heard from her or them this morning, I've texted her but she's not replied so I'll call in a bit. I actually don't think it's anything in particular wrong with her, other than her ongoing heart failure and general everything falling apart because she's nearly 91. They were going to do a CT scan of her head, which I thought was a bit superfluous (from my now what feels like extensive medical knowledge!) given her symptoms didn't indicate a brain bleed and that we went in a few months ago with exactly the same thing and they did the CT of her head which showed nothing, but I could be proved wrong. It's tonight I'm supposed to be going to Manchester to see Girls Aloud, so hopefully that's still happening, but I'm not going up early to spend time with DD during the day, and I think I should leave tomorrow before the cup final, some people might be a bit overexcited (though perhaps it will be okay in John Lewis and Marks & Spencer's in the Trafford Centre!)

@TopOfTheCliff hope your DH is recovering. Was it Mohs surgery? Have always found dermatology surgeons to be so good at what they do.
@SierraSapphire hope your mum is ok
And hope you enjoy "girls aloud"!
I'm going to a big Kpop concert with DS This month, not sure what to expect..I probably should listen to their music or buy a large pair of noise cancelling headphones. It will be good to watch him being excited though!
@Penguinsa @demivolte agree re grumpy, think of we didn't on occasion that would be weird. Am sure it's also a form of grieving in a way. And tbh I also get tired of trying to keep the I'm fine front, when i know that I've taken lots of of pills to be able to just plod off to an appointment and lie down to have radio. All this stuff goes against normal, you're completely allowed to be normal.
Had a wonderful chat with GP the other day, had asked for some Valium for future scans and radio remaining as was getting into a bit of an anxious state. And felt very silly. I was told that I shouldn't belittle my anxiety. That Id got myself through a very arduous process and was on hopefully final stages... Exactly what I would have told someone else but how hard is it to see that about yourself and yes of course you can have some. Felt so much better.
Better go swallow the pills, take the inhaler and get plodding off to hold my breath and be zapped!!!
Have a fab day you all x

I'm off to Chelsea Flower Show with my DSis. Looking forward to it, just hope I can cope with crowds. That sounds so wimpy - I used to be a person who was down in the mosh pit at rock gigs, now I'm wondering if I can cope with a genteel crowd at a flower show, lol.

Ok now.... Someone is at this time eating cheesy Doritos on the train. I think I've become seriously hyper sensitive to some noises and smells.. Would it be unreasonable to wrap the packet round his head.. The crunching and stink is just awful 😁

@nappybrained cheesy Doritos in public are antisocial at any time of day. I hope the radio goes okay.

@SierraSapphire I hope your mum is okay and you get to Girls Aloud. Well done on beating the ambulance, you missed a calling there.

I hope you enjoy the flower show @MissMarplesNiece and the weather is better than it is here.

It's reassuring to hear it's not just me feeling a bit grumpy from time to time. It's a bit of an odd one as everyone around me seems to think I should be really happy that chemo is over and I've had a good outcome. Whilst I am happy about this, and realise I'm fortunate in many ways, I'm also still dealing with side effects and recovering from surgery. I didn't have reconstruction as I didn't fancy an implant at the time and didn't have enough tissue for DIEP, and a small part of me now wonders if I should have opted for reconstruction. It is though early days and I may well get used to it. I had been wondering if I should do anything about the menopause situation and will speak to my nurse next time I see her.

@demivolte yep but we wouldn't say to someone who'd lost a limb, sure you're fine you've got three others , thank your lucky stars! The after effects of this rollercoaster continue, the treatment is only a wee bite.
I was too lardy for a reconstruction and now trying to figure out how I can be less so while taking the AIs which usually make you put on weight. It's a shame given all the Dosh spent, and the fact there is a 30%decrease in recurrence if can bring weight down that there isn't more input as part of the cancer process to do this, as long term reduce recurrence save money and anguish. I'm not lardy because I eat family packs of crisps, I just have a mobility issue. Anyway, need to take lardy self off for a nap! Enjoy some sunshine !

It's a shame given all the Dosh spent, and the fact there is a 30%decrease in recurrence if can bring weight down that there isn't more input as part of the cancer process to do this, as long term reduce recurrence save money and anguish

I think it's shocking there is no follow up programme for us to optimise our health after cancer, they just wait to see if it recurs then treat if it does.

I've remembered today is two years since my hysterectomy. Median recurrence time of endometrial is a year. I don't feel out of the woods yet, but I can see sunlight!

Went to the hospital again, they don't know what's wrong with my DM but don't think it's immediately life threatening. I've escaped and am on my way to Manchester.

Yep, I was quite surprised at how proactive I had to be post finishing treatment and that more wasn't given to support exercise and eating well - several studies suggest it can make a huge difference in recurrence rates and of course overall physical and mental health.

Ooh I've had a round of the grumps lately. I'm better at recognising it and realising that it will pass, so that's one thing I guess.

Well it’s been quite a week here. I’ve just helped my brother move his sailing boat from Weymouth to Falmouth over three days. We’ve had quite a few adventures but at home poor DH is struggling post skin cancer surgery. His head is swollen and he is feverish. I decided to jump on a train home tonight so after some heroic rowing ashore by my brother I’m on the sleeper train now. While I am worried about him there is a teeny part of me that is relieved that for once I can look after him and not vice versa. I am healthy and cheerful although lots of me aches from hoisting and winching things!

@ClashCityRocker I see this time after treatment is over as Project Me! While I have lots to keep me busy there is nothing that matters more than regaining health and strength to be able to live the rest of my life, however long or short it will be. I don’t eat perfectly every day but I avoid alcohol, try to stick to a healthy plant based diet, and be as active as I can. It’s a slow process but it’s beginning to feel like I’m getting there.

That's great you are getting back to fitness and health Top and boating adventures. So sorry about your DH, hope he improves.

Hope you got to enjoy Manchester Sierra

Have a lovely time at Chelsea Flower Show Missmarples Would love to go (apart from crowds) but have just been watching it on TV instead. Inspired me to do more gardening but the weather seems to be saying no. Our garden is looking very good but still lots to do once this rain stops.

Yes I am another rather shocked at the lack of follow up and advice considering cost to NHS if you get reoccurrence and risk of death but I have got used to it now and just decided that I will look out for me. I do feel so much better physically and mentally for the exercising and garden is looking better for that addition and getting to enjoy it rather than see it as a chore. Love the little robin and blackbird who come with us each time and nice to have DH with me each time and can chat out of earshot as well (though DH is not great for hearing).

Swimming again yesterday with sauna, steam room and jacuzzi, pretty empty - didn't do as much as usual as very full on week but was great for relaxing. Spent all Friday making phone calls and filling in forms re DS, will need to continue next week but hopefully will achieve something. Weather forecast looks pretty dire, 13 out of 14 days of rain. DH has also had a nasty big toe infection where his toe doubled in size and made my post chemo big toes look very minor by comparison, mine are nearly fixed now. Just filled in a form for him to get more antibiotics. DS has started watching films now with headphones which is better than the max volume before and making cheese toasties though DD is getting fed up with him taking her oat milk, quite surprised and we are now getting industrial quantities in so they have 2 pints each a day.

DD was out with her boyfriend and next two days will be doing punting tours for her work in the rain. Then back to A level revision. 3 exams following week then just two to go, one a week finishing on 20th.

Ah, Penguins - having a DC needing CAHMS support etc sounds like a full time admin job. I am full of admiration for your stoicism.

Well done on the sailing adventure @TopOfTheCliff but I hope your DH is feeling better?

It's been a rough few days for me. My DDad has a blood cancer which has been a slow-progressing form, but he had a consultant appointment this week and the latest blood tests suggest it has turned more aggressive (and he has been feeling rubbish, so it's not a massive surprise). He needs a bone marrow biopsy to be sure. There is a palliative chemo option but he is reluctant, says he misses my DM and has had enough. He's 3 hours drive away from me and I do have a Dsis who is nearer but she is not great at providing support. Anyway, this is a thread about us and our recovery, so I don't want to derail, but my challenge for the next few months looks like it is going to be finding enough time for Project Me while supporting him. I suspect the answer could be to step back from work for a bit, but I do find work important for my sanity and sense of identity. More positively, although I need to work this weekend to catch up on time I've lost this week, I did make myself go for a long walk first thing when it was lovely and sunny, and I have booked myself in for my first post-surgery swim this afternoon. Wish me and my recovering arm good luck.

Ah, sorry to hear about your DH @TopOfTheCliff and your DF @dotty2. I tried to do it all when my DF was dying (and my DM had just broken her hip), which coincides with the period my consultant estimates my cancer probably started - so important to look after ourselves, I still struggle with balancing my needs and my DM's I feel constantly guilty though my DB does naff all and doesn't seem to struggle emotionally. It's perhaps better to make a conscious choice about stepping back from work for a bit if its likely to be time limited and you can afford it, or make a conscious choice you can only do a limited amount for your DF. Don't do what I did and try to do both! It's hard though when you're self-employed as it's not just losing immediate income, it's having an eye on what it means for business into the future. I'm still struggling from two years away from networking and marketing whilst I was just ticking over with existing clients.

I got to Manchester yesterday after driving to the hospital to try and chase things up for my mum (she's home now and another false alarm), with a Friday afternoon trip along the M6 that took twice as long as if I'd been able to leave at a sensible time (5 hours!) - we saw Girls Aloud, they were great, and DD was really excited as she feels she grew up with them! Doing a bit of holiday shopping now.

@SierraSapphire - thank you, and I'm glad you got to see GA. Fantastic photo - is that at the new Arena? I was also on the M6 yesterday and it was not nice at all! Planning to drive nowhere for the rest of the weekend.