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

@ClashCityRocker Wishing you a much better year ahead.

@demivolte Your post made me laugh. My joint stiffness from letrozole is obviously worse than I thought. I was offered the disabled toilet in a restaurant yesterday to avoid the stairs!

I'm sorry to hear about your FIL @Top, enjoy your holiday.

Glad to hear you are doing well @Clash, I feel the same about internal terrors which I can't share with others. Wishing you more and more positive news.

@Penguinsa I hope things with your DS continue to settle and your DD passes with flying colours.

I have recovered from the flu which doctor said it's bronchitis. Cough still unsettled so I am now having steroids, weird thing is i dont cough during my sleep but I am beginning to get these slight chest pains which is a bit worrying. I just want to go and enjoy my holiday. At least I am not breathless, which I hope is a good thing. For all I know it could be the increase in my ramipril dosage which is causing the cough.

On a more uplifting note, I went shopping in Central London today. I couldn't decide if I am a size 14 or 16 and bought both sizes. I hope the weather keeps up as I bought a lot of dresses.

Top reporting in from sunny Italia: Today we climbed the Campanile at Florence Cathedral, and lit some candles for departed parents. I have walked over 15000 steps today and my feet ache. It has been wonderful being away, seeing new things, and exploring. Yesterday we hired bikes to go round Lucca city wall. I am well and have energy but my hands and feet are burning. I wonder if it’s neuropathy rather than arthritis. Walking actually helps the pain strangely. We have two more days here and it’s wonderful.
Sending positivity to all
Top

Sounds enviable @TopOfTheCliff. As to shopping @Makemineadecafplease the only time I tend to shop (I am not usually that into clothes shopping) is in the summer. This lands me with a disproportionate amount of summer clothes relative to winter clothes. Makes no sense given the British climate..
Have a holiday booked in a couple of weeks. Before that however, I have my dreaded 1 year post diagnosis MRI and mammogram. Also have to decide weather to go ahead with lymphoedema surgery. Thyroid issues also to deal with (wonder whether my fatigue is just due to my hemithyroidectomy a few months back - I would not mind if it was that as at least something can be done about it). Will this relentless medical nonsense ever end? Hope everyone is holding up OK. Haven't fully caught up on the thread.

Thanks Demi Hope you are feeling OK after the covid vaccine.

Glad you have recovered from the flu / bronchitis Make Clothes sizes are all over the place I find.

Glad you are enjoying Italy Top

Hope you enjoy your holiday Isa I also have to organise a check for cancer.

Got DD the noise cancelling headphones yesterday evening and she had another A level exam today which was weird but good weird. 🤔DH has got his big toe swollen to twice its size so on antibiotics and hobbling but hopefully will start to have effect soon. Just done cleaning and hoovering and bank admin and ordered some summer clothes and hat. DS is still watching TV on maximum volume but good to see him watch TV. Nails are getting quite a lot better.

Hope everyone has a good weekend.

@TopOfTheCliff I am so jealous! I loved Florence!

Glad that so many of us are acknowledging anniversaries of diagnosis etc and are counting our blessings.

Work is crazy… It takes up way too much time and headspace for me. New specification for VCE is a nightmare in terms of marking and assessment. Lots of internal politics at work and staffing issues. Still I’d like to finish the year Dec here and will then review it.

Saw my blood Dr, she has said the last scan showed the clot was nearly gone, stay on the blood thinners until after the diep. I’m extremely lucky.

Last weekend we went away, it was so lovely. I’ve been exhausted this week though.

Have a good weekend!

@FairyWren7 yay for the clot being nearly gone! My one on my leg has shrunk but is deemed chronic. It doesn't bother me too much - the leg swells slightly under exertion but I have been informed that's normal and the body has built lots of shiny new veins around it. Bodies are really amazing things. I'm probably on the thinners for life, or at least the next five years, but as I'm now on oral ones rather than the dreaded injections it's fine.

@TopoftheCliff, sounds amazing, somewhere I've always wanted to go and I'm glad you've recovered from your wee incident so well.

Early to the gym this morning, really seeing tangible improvements now month on month. Going to treat myself to a nice breakfast now before calling in to see the mother and then hopefully just sitting out and enjoying the weather for a bit. It's going to be a late one tonight as we're off out for tea and staying out to watch the boxing - not something I'm hugely into but dp wants to! I may even get a little bit tipsy, something I've not done for a good while.

Hope everyone has a good weekend whatever you're doing.

Hello all, I hope you don't mind if I join in.
I ve moved over to recovery thread, as that's where I need my head to be.
I drifted around the treatment threads but got overwhelmed a lot, just a lot going on generally in my life.
2 out of 15 radio sessions done, counting not I. Started out with chemo , which had a partial response to, mastectomy and clearance and now the zapzapping.
Letrozole makes joints feel like crap, and they were not especially fab to begin with and have added another diagnosis of sarcoidosis to the list!
I need to lose weight, not just because too Lardy for reconstruction but OBS because want to improve my odds generally. It strikes me though that we end up taking these drugs that increase weight gain in many, not just because of action but unless I get moving soon... but doesn't appear to be any formalised help to work against that. Correct me if I'm wrong. I'm going to try some swimming after radio... If I can find a cooler pool.
Sending lots of love to all x

@nappybrained welcome. I think it is sending yourself a strong message to move over here to focus on recovery. After all the grim rounds of treatment it feels good to look ahead and see the open fields of green stretching out ahead. Life after Cancer is going to be different, but with gentleness and self care you will find your way. Do you like swimming? I think it is important to do things that make you happy.
I just got back from my fabulous Italian mini break. My feet are blistered and my knees ache from all those towers I climbed but it was magical. DH is coping with the loss of his DF91 and impending face cancer surgery. We are almost out of the swamp now! I need a couple of days rest, and gentle swimming will fit the bill nicely. There are lots of jobs to do but I wouldn’t have it any other way.

Hello @nappybrained, I'm about a year out of treatment for stage 3 cervical cancer. This threads a great place to be and to follow the many twists and turns of rebuilding after a cancer diagnosis. Recovery for me has not been very linear - there were times when I felt worse than I did during treatment, although they were thankfully few and far between. I'm very pleased with where I am at now both physically and mentally.

Welcome @nappybrained. This is a good place to be, as you build a life post treatment. I’ve taken a lot of joint care supplements and am very active, but my joint pain started with letrozole 6 months in. Ibuprofen helps, but I don’t want to take it every day. They did say I could switch to examestane, which is apparently kinder on the joints, but I’m going to give it a while and see if it improves. I’ve got a nice podgy tummy, which I’ve never had before and debating whether it’s worth starving myself to try and get rid of it! It took me a while to regain energy after radio, so make sure you are kind to yourself in the coming weeks.

Welcome nappybrained Its good here for recovery. I was another one who went from normal bmi pre cancer to putting 14kgs on with treatment (Tamoxifen) but now have all but 1kg off which feels great. I love swimming and found that great for recovery, if you enjoy swimming would recommend it.

Been gardening again today with DH, 1.5 hours each and got a fair amount done. DD is mid A levels, 2 down, 7 to go with 2 next week then a week off and coping well. Her brother has become rather loud but noise cancelling headphones are helping a lot in the day. He watching a lot of TV. I finished radio in Aug 22 so nearly 2 years out now and feel great, physically fit and mentally strong, and back to nice days out, holidays etc. Appearance is getting back.

Welcome nappybrained, you will find loads of support on this thread.

I get joint aches from the Tamoxifen, still trying to take up swimming like @penguinsa, but exercising is so much work. lol

Thank you so for your lovely welcome.
It all has been greatly like one big plod, so will plod through the last bit and get ready to rumble!
I like swimming once am in, just all the faffing with clothes on, sticky clothes after. I probably do Feel a bit self conscious, although realise most people don't give a crap, as soo busy trying to get through their own stuff. As long as I start something, it's ok as can change and adapt. Can't do nothing!
But you're all right there is a sense of being able to take a slightly longer breath and I want to be better!

Hello @nappybrained, I think we had surgery around the same time. I hope the radio is going as well as it can.

I keep thinking about swimming and really need to buy a new swimming costume and prosthesis. And then actually go swimming.

@tam23 which joint care supplements do you take and do they help? I'm not on any hormone treatment but am very achey.

@demivolte I think we did too! I had this fab idea of buying a coat , similar to a dry robe so could just throw it on and deal with the changing when I got home after a short drive. But realised that ain't going to work over this short warm weather spell , as DD reminds me it's only a month or so!!! Although I could just throw on a Kaftan type thing and leave like that, I always feel like I never dry properly anyways! I wonder if procrastinating is an issue lol
Hope you're doing ok

@demivolte I’m taking a combined omega 3-6-9 once a day and glucosamine and chondroitin once a day. There is some evidence they are effective. I didn’t have any aches for the first 6 months but they have started now. I don’t know if they would have started sooner or been worse if I wasn’t taking them?

I always bathe at home rather than the pool and just put like a hooded fleece/towelling dress over swimming costume after a very quick shower at the pool and that works well. Prothesis I got the swim one from Ameona and they are excellent, I got 2 and use them all the time as they are washable so take them in the bath with me. Swimwear George range post surgery is a very cheap and good value option though sometimes have to make pockets bigger but that's easy just one scissor cut.

I am not too bad on aches and pains on Tamoxifen - first month was bad but they said chemo effects would peak 3 months post chemo so had Tamoxifen plus chemo and radio hitting at same time. Also changed brands after though don't know if it was that or not.

I go to a private pool (Holiday Inn) which is nicer and not that different in price to the public ones but better hours, warmer and cleaner than our one and nice jacuzzi, sauna and steam room. You need to build up if just starting after treatment but it comes back fine. I do find front crawl strange now as lymph node clearance but can do all the strokes fine.

I have a loose maxi style dress that I just whack on over the top after swimming and drive home like that. In the winter i have an old jogging suit that I stick on. I can't be arsed hauling all my wash stuff to the gym and showering and changing - plus the hair dryers take years to even get it semi dry.

I walk to the pool so do shower (in my costume) and change but I don’t find it too bad. Being low maintenance and having post chemo short hair helps.

I’ve been feeling a bit low the last few weeks. I had my LVA surgery for my lymphoedema and haven’t been able to exercise. I have also had some stressful work and family stuff and the enforced rest has made me realise how much better exercise makes me feel. I have also been quite shocked how quickly I have lost fitness not even being able to walk. But that’s motivating overall, a good incentive to get back to it when I can.

In the meantime, we had the most beautiful day out yesterday, a stroll and a picnic for DD1’s birthday. Not a cloud in the sky all day.

Happy birthday to DD1 Dotty I think exercise will come back pretty quickly, its a lot easier to get back than just after cancer treatment.

I phoned to get more Tamoxifen and prescription is with chemist and they are doing an order to get it in and should be there tomorrow so that's good. And GPs have backed down and doing 3 months at a time which is a lot less painful than the monthly.

I phoned the hospital as my mastectomy breast does have a lump along the scar and also is going in around there and also have not had any checks on good side since chemo / radio in 2022 so need to get that done. My trying to get an MRI completely failed and if I need both sides checked its going to be pricey privately if biopsies needed so I will go with this. I just hope they actually book me an appointment. Good side can't see anything wrong with, other side it might be scar tissue, it was there in Jan 23 when they checked me for diep and they didn't say anything, might have been there since surgery not sure. Hoping the indents is as I have lost the cancer weight gain, have lost 2 stone though not got any issues elsewhere with skin, its much better, but maybe the surgery restricted were it can take from. Not sure how long will have to wait but at least I did the call. I get a bit la-la-la about it as I can only do la-la-la or I panic. But now will forget about it until they hopefully give me an appointment.

DD has 2 A level exams this week Tues and Wed, then a break for a week and a half which is good. DS is being discharged from cahms tomorrow so I have a meeting with them as apparently they are a short term service. 🤔Though they have been beyond useless so it probably makes no odds, just odd to discharge when he can't speak, write or leave house or do education and is freezing at times unable to move his arms. So we are just back with GP who is very difficult to get hold of and a different one each time.

Garden is looking lovely, still needs quite a bit more work, it was a perfect garden by a gardener when we got it but it needs restoring to its former glory. Getting there. DD is very chilled at least and cheerful and DS is improving and watching TV a lot now.

Got an appointment through for 2 weeks time for breast clinic so at least that's quick and made.

DD has gone off to A level exam, one today then one tomorrow then week and half off.

Well done on making the appointment @Penguinsa and fingers crossed it is confirmed as scar tissue or similar.

Thank you for the info @tam23

I've ordered a swimming costume, so one step forward. I was also thinking about trying couch to 5k but that may be a bit ambitious for the time being.

I hope your recovery from surgery goes smoothly @dotty2 and you are able to be more active soon.

Thanks Demi I found walking much more challenging than swimming after treatment but found as I got swimming back to normal gradually could add in walking and improved in that. It's finding what works for you but gradually building up generally works well and it can be a bit bumpy at the start so be kind with yourself as you and your body have been through a lot. But I feel so much better mentally and physically for it and would recommend trying to do it gradually.