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.

@FairyWren7 i started nipararib a week ago, same sort of drug as olaparib- and I’m easily tired. I wake up feeling exhausted. Energy comes and goes during the day - and I can still walk the dog/ exercise - but I’m going to need to watch myself.
Im going to go with getting food / Christmas presents delivered to the house - I don’t think I have the energy to go round a supermarket
I was tired at times on chemo, but I think this is a bit worse as is more constant

@SierraSapphire have we bonded over useless brothers before? I love it when I visit my mum in her care home and she talks my ear off about how my poor brother is so busy at work but doesn’t ask how my health is.

I’ve been doing my exercises every second day apart from the day I had my hair done and didn’t want to make it all sweaty haha. We are having a heatwave in Sydney. I’m looking forward to tomorrow when it is only going to be 27. Back up to 40 on Tuesday. Makes Christmas shopping even more challenging when the usual crowds are swelled with people who are hanging out in shopping centres solely for the aircon.

School has finished here so I have DD17 and DS15 on holiday for 6 weeks. I’m teaching DD to drive. She needs 120 hours by Feb and we just crept past 50 today. I’m enjoying the normality of it all, despite feeling on edge quite a lot, like waiting for the other shoe to drop.

Possibly @Remaker, I have talked about the stress of looking after my DM with other things going on, and my brother's hopelessness has been mentioned.... Though on the list of "stressful things that might have given me cancer" teaching DD to drive is up there too 😂. I know what you mean though about waiting for the other shoe to drop. It comes and goes for me, depending on what else is going on, worse when I have physical issues as I do at the moment, you just have absolutely no idea what might be cancer, returning and what might be completely unconnected.

That sounds wonderful Top glad you have your energy up to full power again and enjoying life and being active.

Not too much here today, Floof has been very cuddly and tried to get under the fleece duvet with me but then got distracted by DH throwing a Christmas robin decoration. Chickens are set up for the winter. Collecting some photos of Mauritius from photo shop I took underwater and with disposable camera, have them already digitally, made me wish I was there now. 😂Couple of things for recycling at Currys and collecting Dunelm order.

Hi ladies, hope everyone is having a good weekend and enjoying the run up to Christmas. I've had more energy the last few days which has been good. I'm meeting my bestie for a pub meal and drinks tomorrow and having a day in London with my Sister on Monday. TBH I'm already not looking forward to radiotherapy starting on 2nd January, although I know I'll need to take it a day at a time. Fingers crossed I manage to work through it, even if I dont manage much else.

Have a lovely time on your trips out Octopus

Radio is really easy though start moisturising with something like Aveeno now if not already, you just lie on a bed for 5 minutes and don't feel a thing. It's a bit strange being topless with strangers but other than that was really easy. I had no side effects, most common one is tiredness.

Thanks @Silkiebunny I'm probably worrying over nothing. I'm using the Simple moisturiser at the moment, thanks for the tip.

The other thing is to drink at least 2 litres of water or similar on radio days helps. I had aveeno and a French burns cream Biafine and had no skin issues. You only need one or the other or any similar thick body lotion.

@RedRosesPinkLilies thanks for the response. I’m finding I’m having an energy dip the day after I swim but it’s like chemo loss of energy. Maybe it is the Olaparib.

Yesterday we went Christmas shopping and I came home very tired. But my leg is very sore with sciatica at the moment. So I’m taking painkillers for that too. Think GP and a physio referral are in the wind.

Been awake since 4am, I’m going to struggle today. Found a job I actually like the look of and have applied. Parents get here Thursday!

@remaker - enjoy your 27 degree day! :)

@Witchinawell - enjoy your cakes/cookies. I’d love some of those. I’ve thought about CBD oil but I’m already a bit fluffy at times. Still could be fun!

@FairyWren7 that’s how I feel too - it’s an overwhelming tiredness
That said - I know my haemoglobin is on low side - and iron stores were low before all this happened - so going to try and boost my iron intake just in case it helps. Also taking Magnesium and Zinc.

I went back to work on Monday after a chest infection and a severe asthma flare up. I'm now waiting to hear from the respiratory team about changes to my biologic injections which are given for severe eosinophilic asthma.

I struggled at work as I'm not sleeping well and my breathing is so bad. Luckily I'm now only working 4 days, so when I got home on Thursday my night was done.

I had to battle with my GP on Friday to prescribe some emergency steroids to take to Tenerife (we fly on the 23rd Dec for 2 weeks) he eventually agreed it would be better than me ending up in a Spanish hospital with a severe asthma attack.

4 more days of school and we get 15 days off.

Hoping 2024 brings me some relief from being constantly breathless.

Well done getting through the first week back at work @BG2015 . Lucky you having a hopefully warm sunny Christmas. Are you getting a feel for your new normal yet or is your asthma still holding you back? I hope the dose adjustment helps.

I have been a bit overexcited this week at how nice it is to be feeling well and doing normal things. Now I am calming down and recognising I’m still getting dry eyes and mouth, and stiff swollen aching joints. I think I have a form of autoimmune arthritis which has been lurking behind everything. My mum aunt and sister have the same. I have to talk to my GP for a medication review soon so will consider whether to raise it. I’m not sure it is bad enough to take anything poisonous for, I might just use paracetamol and the hot tub.

I am as usual pushing to get stronger but not trying as hard to lose weight. I enjoy my food and never miss a meal. Maybe I need to cut back to two meals a day. I am enjoying the Zoe project and all the delicious plant based meals but not losing weight. I’ve got five weeks till my hip surgery to do something about it and Christmas is in the way. It all seems a bit daunting.

Off to inspect the poor neglected allotment this morning then a gentle bike ride later. Try not to do too much Top!

Hello, I think I’m ready to join this thread if I may? I can’t quite believe I’ve reached the end of active treatment. Looking forward to sharing a good recovery with you all.

Welcome @tam23 just jump right in! You will find enthusiasts for yoga, swimming, cycling, and all sorts of music events here. Finding a new routine after cancer treatment and negotiating the return to work or normal activity is hard and it helps to have company I find.
I have been shattered today. I thinks it’s the result of a week of partying. I managed a non electric bike ride and even got back up my steep hill but I am feeling very tired. Luckily this week should be a quiet one.

Welcome Tam and congratulations on finishing active treatment.

Well done on all your activities Top I am also keeping up the exercise fine but diet is slower. First month (off Tamoxifen) lost 4kgs (though 4lbs by calories) then second month ill for a week and a half then back on Tamoxifen no change, last 3 weeks calories counting lost 1lb a week. 8.2kgs to go, 5.4kgs down of Tamoxifen weight gain to go. Urgh. But getting there. You can see the difference which helps. I saw your photo on the cancer thread and thought you looked a lot thinner Top, well done.

Good luck with the job application Fairywren

Enjoy Tenerife BG

Sleep was terrible last night but took anti-histamine and slept eventually. DH went to a Christmas party today then we've been sorting house, got a special collection tomorrow for old leather sofa and 9 sacks of rubbish. DD gone to London for the day. Will go swimming tomorrow, normally always go on Sundays but wanted to sort things in house for collection. I did though come across 4 champagne truffles I had got for Christmas and they may have disappeared. 😻

Hello everyone, can I join the thread?

I am 35 and have two children aged 16 and 8. I was diagnosed with triple positive breast cancer last October and will finish my treatment in Feb. Only three more phesgo treatments to go now. I had TCHP chemo and it absolutely floored me. I've lost weight (and am still losing weight which has surprised me because I've been on tamoxifen for 6 months now but oncologist isn't concerned) but it seems that I now have no muscle and my body is so weak and wobbly. I'm 8 stone 12 and 5 foot 6, so still within normal range but I feel like I'm looking so exhausted and gaunt with it.

I've built up quite a bit with basic things like walking and can now do hills again at a decent speed but what I really want is to go to the gym, get fit and start weight lifting. I want to feel strong after being so weak and vulnerable for the past year. I'm going to be on tamoxifen for ten years and I'm very concerned about the impact on my bones. But I also had lymph node clearance so I'm worried about developing lymphoedema. Anybody else in this situation and managed to start a decent fitness regime? I've never been to a gym before so have no idea where to start!

Thank you for the welcome @TopOfTheCliff and @Silkiebunny. I’m quite tired at the moment and it’s hard to figure out what’s radio and what’s Letrozole. I am a massive yoga enthusiast and it has been frustrating to keep going back to square one with my practice after each treatment. Although I know yoga is all about acceptance and listening to your body and where you’re at today - it’s been one of the challenges, I’ve found. I’m aiming to build up strength and maybe try to be a bit less sweaty! Got some aches and pains I never had before, so hoping it will help with that too. It’s really encouraging to see you all getting your lives back so thank you all for sharing.

Welcome @Sirprised and it sounds like you will fit in well. I was in your shoes after my first BC in 2021 and to make it more interesting I also dislocated my ankle during FEC-T chemotherapy. It might help you to find out whether there are any cancer specific exercise classes near you. Is there a Maggies centre or similar near you? They might have classes or lists of suitable ones.
I started with a physio as I was so wrecked then moved on to a personal trainer who is now my firm friend. She isnt a specialist in lymphoedema but in nutritional and rehabilitation. Also I have found a free BC yoga class and a physio running an online BC recovery course called Gentle recover which is excellent and covers exercise for lymph drainage.
Did you have a total axillary clearance? I did and get some swelling in my arm in the mornings but cycling and doing a gym class seem to clear it. Mine isn’t lymphoedema apparently just post surgical swelling. The knack is to start very gently doing your favourite activity and build up the resistance/ weights gradually. If you fancy trying out a gym why not ring a few and ask if they have anybody qualified to help you?

@tam23 the best thing my favourite BCN said to me was “You will get your life back. It will be okay” and she was right. Now I just have to do it all again after a second BC in 2022.

@Silkiebunny thank you. I haven’t lost weight but the shapeless sack of potatoes is morphing slowly back into a human form with muscles and a waistline! Patience is a virtue.
Nine sacks is awesome! I’m impressed.

Hello @tam23 and @Sirprised - this is such a great thread. It feels like friends who actually understand what you are going through!

I’m getting excited now as I haven’t seen my lovely Dad and stepmum since before I was diagnosed - they fly here Wednesday. It’s a big event for all of us. Dad is 78 and lives in the UK and they are coming out to Australia for the second time last time was pre-pandemic!

As I feel better, I feel less homesick for the UK which is good. Moving back permanently is probably not the right choice. But if I can visit every year I will be happy. As Dad gets older maybe I will try to visit summer and Christmas. See what the next year or two brings… just being able to say that is so wonderful.

Diet is going nowhere here at the moment. Been doing lots of house cleaning, shopping and gardening. But have started on a pack of delicious mince pies!

Joking aside, after Xmas the diet starts proper. I think I need to do an anti-inflammatory diet - will check out the FODMAP one again. My major risk factor I think is weight, plus I hate being bigger. It makes everything harder.

There were kittens at school on Friday. (Not as exciting as the snake and blue tongues lizard we had a few years ago! But still a lovely bit of cuteness!) Kitten pic and hair pic below!

I need to get my haircut - first one since losing it all to chemo. I’m starting to look a bit crazy around the edges!

Hope everyone is feeling as well as they can. :)

Oh my goodness, fluffy tiny kitten cuddles, thank you for sharing @FairyWren7, you have so much to look forward to. When our spaniel was that small many years ago, her little paws smelt of biscuit, wondering now if it’s the same with kittens?! There is no scientific basis whatsoever as to why I would stay put where you are but im missing sunshine and daylight at the moment, apart from the odd day, it’s decidedly grey and wet most days here. Regarding an anti inflammatory diet, since diagnosis last year, Im adding anti estrogen foods and building up my tolerance to fibre (which prior to diagnosis I hardly ate as it always irritated my gut..!). I now manage about 40 g of fibre daily and have two tablespoons of milled flaxseed and water every morning. Tastes like pondwater must, but the lignan content apparently acts anti-inflammatory and I haven’t (yet) had any of the aches & pains normally associated with my treatment. Working today but the countdown is on for our trip to Finland (24th Dec). Wishing you all a happy Monday.

Thank you for the welcome.@FairyWren7. That kitten is sooo cute and it’s lovely to see you looking so happy. Here’s a photo of my gorgeous ball of fluff. He’s definitely kept me going through all this, even though he’s very naughty!

Welcome Sirprised So sorry you got cancer so young. That sounds like you are already doing well if you are hill climbing. I think we have to remember that our bodies have been through so much and to be kind to ourselves and that recovery will come in steps. But its so good when active treatment is over and we can all begin to find a new normal again. I had full node clearance and no lympoedema so far (Jan 22) - I was told key to avoiding was exercise for rest of life though that can just be 5 mins a day of arm exercises when you haven't got time to do anything else. I swim 3 times a week which is said to be very good for avoiding it. I have lots of muscle, at least I think I do 😂though I've always been quite high on muscle with swimming and an asd child who required being carried a lot until 5 or so. Never really been a fan of the gym but worth going and trying. I am a member of a club with a small gym, pool, sauna, steam room and jacuzzi and a few classes but its the pool I go for and jacuzzi etc. Best exercise is one you enjoy but have found it well worth paying for membership, its not much more than a public pool but much better hours, warmer and cleaner.

Lovely to see a picture of you and the kitten Fairywren I have the big version. 1.2 metres of tabby. He really helped me through. I got him in chemo. I agree about it being a lovely thread.

Love you cat picture too Tam he is gorgeous.

Top We only made 5 sacks and one sofa in the end though they were 85 litre sacks. DD was supposed to be doing her room but got invited by a boy at school to a cat cafe in London and it was a much better offer, he walked her home and met Floof.

Witch Have a lovely time in Finland, is it Lapland you are going to. We went there over Christmas in 2012 with the children and it was magical.

Hello everyone, and welcome @Sirprised

I had BC, and full node clearance in Sept 2022, and like you have been worrying about lymphoedema ever since. I started noticing some swelling in my arm in August, and finally had my appointment with the lymphoedema clinic last week. Sadly, I do definitely have lymphoedema though it is early stage. The consultant I saw was extremely helpful, and probably the nicest, most considerate doctor I've seen all the way through my treatment. She said that while it's still not fully understood, the latest research suggests that you are more likely to develop it if you had bad cording - which I did - and that they are linked in some way as cording seems to be some sort of fibrosis of the lymphatics. That makes me feel a bit better in a way, in that there's probably nothing I could have done to avoid it. She encouraged me to do whatever exercise I wanted to do, bar suddenly starting lifting very heavy weights. (I mentioned that running seemed to make it worse and she said that will just be temporary because of the increased blood flow, but that the benefits outweigh the harms, and to just try to find a balance.)

I now have to wear a very ugly compression sleeve and feel a bit shit about that, as it's just another constant reminder that I will never be back to 'normal'. On the plus side, my arm is a lot less painful and a lot of the pain I thought was nerve pain has lessened or gone. The consultant did say that they used to put off giving people compression treatment for as long as possible, but now think that if they use it early it can help reverse some early stage swelling, and that I might be able to move to only wearing it some of the time if it improves. (I'm also exploring private LVA surgery, but it is terribly expensive, and the longevity of the benefits aren't known.)

Have been so busy with work and Christmas prep these last couple of weeks that I've done almost no exercise or active recovery, but I will aim to fit in some before Christmas and restart in earnest on 27th.

Loving the cat pics! Here’s my actual cat. She’s called Minnie. She was a rescue and was very timid spending a lot of time under furniture to start with. But now she rules the roost and meows for attention. She has very green eyes!

@tam23 what’s your cat’s name?
@Witchinawell your trip sounds great! I’m thinking of going back on hrt, as cancer was negative to hormones. I might try and see if it gives me more energy.
@Silkiebunny totally agree it’s about finding something you enjoy. Good to know about the lymphoedema - I seem to be ok so far. (Surgery was July). 1.2 metres of cat is impressive! The same thing has happened with swimming today, I was extremely tired but I went and now it’s midnight and I feel ok.

I’m getting on with booking a few bucket list things for next year. If my finances improve I hope to get some trips booked - I’d love to go to Central America. Might require some serious saving.

Swam, walked and gardened today. Cleaned the fence outside as well - lots of spider webs! My dad doesn’t like spiders, we had a large huntsman come in the house on his last visit. He was unsettled for days, so I am removing every bug and beastie I can!

Just gone online and got an online shop sorted for my Mum who will be in the UK for Christmas - I miss UK shops! Mum has now got a lot of cheese, chocs and drinkies coming her way!

Hope the compression things helps Dotty I also hate anything that reminds me of cancer which is still my hair and unreconstructed breast.

Lovely cat Fairy I think when you start swimming it is quite tiring or when you are increasing. I don't find it tiring now so hopefully will improve.

DD is now pestering for. Maine Coon from the cat cafe to be a playmate for Floof.