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.

Thanks @FairyWren7 Nice pic of your dog.

I use this for swimming https://www.amoena.com/uk-en/breast-forms/leisure-and-swim-breast-forms/aqua-wave-swim-breast-form-clear-1149/ and they are great. I actually use it all the time as looks a good match, feels ok and washable in bath. They last well.

I have had constant sinus issues since Jan, first got in chemo, the steam room or sauna is only thing found that helps.

Snap on the antibiotics @FairyWren7 though mine is a chest infection. I only managed one day of work this week instead of three. My GP wagged her finger at me and talked about pneumonia in an ominous voice so I paid attention and rested.

I had my first acupuncture treatment for my peripheral neuropathy today and I’m feeling quite optimistic about it. For the first time in weeks my feet feel ‘different’. I can’t really describe it but I definitely have improved sensation. And they aren’t cold! I’ve been getting around in socks and slippers even when the weather is warm - DH is particularly fond of my shorts and ugg boots combination haha - and for the first time in months they don’t feel freezing. I feel a bit emotional about it all actually.

The only downside is I need weekly treatments but was only booked in for one so I now have to wait til 10 Nov for my next appointment but then I have weekly bookings after that.

Sorry for those struggling with infections. @FairyWren7 you are right I only have five days of pills left. 50 to go. They are wreaking a final round of numb and peeling hands and feet but I will make it to the end regardless. Planning the healthy meals and cooking them is making me feel better and more in control. I have even lost some belly fat without starving myself. As ever I am so impatient to be stronger and fitter and have more energy but I am convinced that will happen.
I had coffee with a good friend on Wednesday. She is only 5 years older than me but has early type 2 diabetes and does no exercise. Her partner is cheating on her and she doesn’t have a decent pension and says she is not fit enough to work. Her options are very limited and she doesn’t believe she can do anything about it. It made me realise how important it is to keep control of your life and not give in. I am also lucky in so many ways other than my health record!

Has anyone listened to the Kate Bowler podcast Everything Happens? I only dip in and out depending on who she is interviewing, she had stage four bowel cancer, although the podcast isn't about cancer, but she announced at the beginning of this one that she is now NED. I think she might've been on a trial, but it made me feel a bit tearful and also more hopeful as I've been feeling a bit miserable today katebowler.com/podcasts/the-cost-of-survival/

I listened to that podcast and enjoyed the cute girlyness of the chat. Ow my Gaad! Her guest was amazing and had realised that even thought she had overcome horrible things by hard work and determination she didn’t have to keep smiling gratefully. She could still be angry at the failings of a system that had put her through hell. She has validated my Virtual rage room which is a vital part of coping with the dreadful ups and downs of cancer treatment. Being a grumpy survivor is allowed. Thanks for the link @SierraSapphire

I posted on the other thread that I found out why I haven’t had a bone scan after 2 months. Apparently The machine was broken 4 weeks ago and they aren’t doing any scans unless it is “urgent urgent”, when you get sent to Plymouth. At least now I understand. I’m not sure of my next step. 1. Sit and wait as I’m fine and my shoulder is getting slowly better. 2. Kick up a fuss and get referred in front of some more urgent cases. 3. Pay to get it done privately. I shall wait and see what my surgeon thinks I should do.

Glad you enjoyed it Top - I listened to it, mostly because of the guest, I have a whole history of childhood trauma and chaotic early 20s, and I am very suspicious of the whole "what doesn't kill you makes you stronger" and toxic positivity narrative, I do really identify with not just a societal but quite a deep psychological need to prove that I am okay, but I'm not and I do think those experiences are why I ended up with cancer. I've studied issues around resilience as well, and it clearly shows that for kids that are thought to be resilient, it does come with a personal cost either later down the line or in physical stress in the body. I've had counselling various times but I don't think that any of it has really unpacked what happened to me, so it was thought provoking to hear her viewpoint.

Sorry about your scan, that's terrible. Paying privately probably wouldn't be prohibitively expensive, though doesn't the NHS do that when it needs extra capacity? I've visited a private hospital on the NHS. They need a plan! It made me think the year that I was diagnosed with cancer, I had a brain scan in August to check to see whether I might need vascular surgery, and I didn't get the results until December because they didn't have enough staff to analyse them, it was awful waiting though ultimately it was fine, and it overlapped with me going to the GP with what turned out to be the cancer.

@TopOfTheCliff thank you for the thread! I was diagnosed with BC in June 2020 and was on the cancer thread at the time (was living overseas and have changed user name) but since the end of my main treatment have felt a bit lost! I still have 6 monthly zometa injections and currently on letrozole (did not do well on Aramadex!). Not sure about the letrozole either!

I am very keen on diet and exercise to and yes to lots of (homemade) water kefir and pulses!

@Silkiebunny i had a double mastectomy and agree the amonea swimming breast forms are brilliant and what I use everyday (very natural!).

I should add re the silicon swimming forms, they do last fairly well but I am on my second pair. I actually think my new ones are by Anita - these updated ones have a slightly better nipple effect! Oh how I still miss my nipples!

Regarding hair growth - I lost every bit of hair (although eyebrows and eyelashes the week after finishing 16 rounds of chemotherapy!!). I also no longer have any underarm hair (yeah!) but scalp as thick as it ever was! I was distraught at the fact it might not regrow - but it did (and no hat required 3 moths after chemo finished)!

She has validated my Virtual rage room which is a vital part of coping with the dreadful ups and downs of cancer treatment. Being a grumpy survivor is allowed.

Thank you so much for this idea Top; the whole smiling gratefully cancer aesthetic is something I've struggled with despite genuinely feeling that way most of the summer. A virtual rage room sounds extremely healthy.

My other battle, but probably one I bring from elsewhere is shame. (I've been talking to the amazing macmillian counsellor a lot about this but it's still pops up where I Lear expect it.)

I had my CT scan yesterday and I've been having issues with circulation since I came off hrt and started tamoxifen (thyroid check Monday.) my arms started loosing circulation, tingling and shaking (I think the cold didn't help) and they had to abort and pack me off for a mould.

I felt a total abject failure. These lovely people trying to cure me and protect my heart (it's left) and I just couldn't lie still.

the merry mould room people cheered me tremendously and reassured me they do it a lot. I could just feel the stress and regret making a few light hearted banter comments about all the art materials I was taken by (art is my background, loved the wire and mould room!)

Anyway, the mould was brilliant. Breathing was good. And all done. Just my mindset to work on. I hate being a problem. I'm extremely worried about the radiotherapy and my heart.

Anyway, onwards and upwards; on the sweet potato theme, this stew was unbelievably good!

healthylivingjames.co.uk/sweet-potato-black-bean-stew/

I didn't add the chilli and tumeric and I think I'll add more black beans next time (did double proportions for freezer, would add an extra tin.)

Haven't had it with quinoa yet but I've been using the merchant quinoa bags for several years for protein rich lunch salad things which would be v quick

Four days left now top!

Pre cancer i'd have said the finish line was in sight, but of course finishing a treatment is more the end of a chapter.

Still processing my NED and really want to focus on exercise and getting back to my old level of fitness. It's funny the number of people who've said 'thank god it's over'. I don't think it'll feel over for a long time yet, and staying NED is a different kettle of fish too...but I want to give it my best shot and then at least if the worst does happen I'll know I did what I could and it's just one of those things.

I eat quite well at home but my downfall is lunches in the office - I tend to just grab something from the van. I have access to a microwave so may start making things to take. Soup might be good in the current weather!

Going to go kayaking on Wednesday night, just in the pool but will be glad to be back in my boat. Will also book in some sessions with my PT too as without him I tend to pootle about at the gym.

Kayaking sounds wonderful Clash

Its strange am 3 weeks off Tamoxifen to wait to see if change to Letrozide so 6 week off though bloods though not sure now but the scales are saying I have lost 3.3 kgs but my calorie counting is saying should be half that more like 3 pounds. I always thought Tamoxifen made me retain water especially in neck and face which I hated as you can't hide that, that has improved quite a lot but strange this is weight loss has been even throughout whereas if it was water would it not clear straight away. My oncologist also looked rather puzzled at my water retention suggestion. But my calorie counting won't be that wrong. Weird. Though it's first time done a diet so maybe something I am missing. Am doing 500 deficit a day, lots of exercise which is included in 500 deficit, lower on carbs than was and trying to ensure lots of vit C and some iron in. Trying to do more veg but nothing strict.

IKEA It's horrible to feel a burden, I felt like that but that's what a good society does, helps people when they need help and some people often enjoy helping. Its quite normal to struggle to be still, be kind to yourself. I have never been the smiling cancer patient but as long as you get through treatment whatever way you can that's OK and I don't always think that people smiling at whatever is thrown at them like massive delays is helpful for those behind you as it sets the bar very low and sub optimal for survival. Its a balance of trying to be polite and ensuring you get good care, but it's such a rollercoaster of emotions and drugs it is hard.

Welcome @MarjorieDanvers we must have joined the thread together as I was diagnosed with cancer no 1 in June 2020 too. I look forward to hearing some of your recipe ideas. I’ve got to have a conversation with my oncologist about the last two years of anastrozole. I’m sure the first cancer has had a thorough pasting with three courses of chemotherapy so I may not be inclined to take more drugs.

@ClashCityRocker thanks I am counting down. The toxicity has really built up with this round and I am feeling dreadful but I can cope with a few more days. I didnt sleep last night due to neuropathy so I am off for a nap now.
Are you one of the amazing kayakers that can do a full Eskimo roll? That scares me a lot so I paddle a surf kayak so I can just fall off and swim away instead of going underwater. Ooh there is something I am scared of after all!

@Silkiebunny your DD sounds great. I hope she has got a good score. My DD1 went to Oxford and read PPE and loved it. I still expect her to become dictator of a small third world country one day. She is awesome!
I think I am going to chill over the scan and see what happens. I am not too concerned about bone mets and I want to get my hip fixed regardless.

Welcome @MarjorieDanvers I did not know about the Anita ones, interesting. I have two of the Ameona ones which I love though DH lost one of them, he told me once he had packed it for France but in the end I could not go as DS would not go and can never find it now. I did get them in the sale so we're about £33 each, weird they had a sale. Much prefer them to the much more expensive one hospital eventually gave which if you get wet disintegrates as I like to clean everything.

Lovely your DD went to Oxford Top DD visited some colleges at Oxford for Economics and Management, I read Economics at Cambridge and DD was adamant she wasn't going to do same as me 😂 and I told her I am sure I had a friend who did PPE at an Oxford college she visited but not sure which friend, have three I know. And DD replied oh I know which friend it was her picture is on the wall there and when one girl saw it she said Liz Truss no and walked out. 😂 That was a bit embarrassing as I thought it would just be one of the two others. We all got invited to a party with Liz just a few months before she got to be PM and DD refused to go saying all my friends would be boring then regretted that after. I hope she gets into Oxford though latest she told me is she has just applied for a second weekend job in a nightclub and cocktail bar. 🤔

DS has eaten an impressive amount of her birthday cakes in 3 days, around one third of the big cake and 8 big cupcakes all red velvet with masses of buttercream. He's quite low weight so it's good but no idea how he can manage so much buttercream.

@TopOfTheCliff before all this I could indeed pull off a slightly messy Eskimo roll. I suspect I will need to work on my core strength a bit more but hoping a few sessions in the pool will help. To be honest I much prefer sea-kayaking to white water as more chance of staying upright! It's not so much going under that bothers me but the utter faff afterwards of having to rescue and then drain the boat. However, as most of my pals are more into white water I tend to go along for the ride.

Well I overdid it today. The toxicity is building up and my feet and fingers are sore but I went and organised a sports club supper and we made £300 for charity but my feet are blistered. Bed rest for me tomorrow unfortunately. Hopefully I will sleep tonight. Must be patient! Grrr

@TopOfTheCliff yes I think I joined shortly after you! You were an inspiration, particularly on the exercise front. Please don’t overdo it though - chillin’ is good too!

Apologies @Silkiebunny I have checked and both of mine are the Ameona ones (with lovely drawstring bag!) and yes I love them (and yes bought in their sale!). They definitely look really natural. I have still not told some friends (and family) about having bc (covid and living thousands of miles away made this easy!) but none have noticed - even when on holiday with them!

Off to listen to the podcast and order the book - I need some oomph!

After feeling so much better this last few weeks and starting to get some real life back I managed to fall over whilst holding a wriggling cat yesterday and smash my nose up. A&E were great as I'm receiving active cancer treatment I was seen quickly (one perk?). Maxilla Facial cleaned and stitched me up - nothing broken but I look a sight and will have a scar. Tetanus jab and antibiotics now added to my enormous list of meds so there's the gut microbiomes shot again. Feeling super sorry for myself and pretty ragey at the world even if it was my own stupid fault

@TopOfTheCliff hope you're having a restful day (and not sitting fuming like I do when I've overdone it!). I don't know about you but I find it very hard to know when to push through and when to accept that I need to recuperate a bit.

I feel like if I listened to my body all the time without giving it a gentle kick in the right direction I would never get anything done when eight times out of ten once I'm actually on the go and moving I feel better for it and my energy levels seem to catch up.

Then there's the other two out of ten times when I really should have taken heed and end up with all the charm and dignity of a two year old who's missed her nap, been overfed sweets and has just been told it's bedtime right as her favourite episode of Peppa Pig has come on...

I get the spoons analogy, I really do, but I never seem to know how many spoons I'm starting off with.

I am trying to see it as getting into good habits long term though - I do need to learn to relax a lot more.

Had a gorgeous open air swim this morning, really feel it's done me good. Got a stew in the slow cooker and am going to have a relaxed afternoon doing a bit of tidying and then maybe some trash TV. DP is at work and it's actually nice to have nothing on.

@myrosehasleftme I am so sorry to hear about your accident. It’s so annoying being off balance and clumsy I understand totally. My DH is scared to leave me alone unless I promise to stay in one place. During first chemo in 2020 I fell and dislocated my ankle and scared him. Last weeks knee injury reminded him how useless I am. Poor man, having a disaster zone as a wife.
I hope you mend quickly.

@ClashCityRocker you are doing brilliantly. What an ace day! Just do what you can and it will improve.
I have watched about ten episodes of Mallory Towers with my blistered feet up. I’m going backwards on the last few days of these vile pills. I’ve been fed up and feeling ill all day. It’s going to take a while to recover. I’m not ready for the Great Recovery even though my mind is running ahead of my body.

I'm having an op on my throat this week to remove a bit of tonsil that got left behind when I had my tonsillectomy a few years ago. I'm actually expecting it to be more painful than my hysterectomy, I got out after three days after that, but it was 10 days from my tonsillectomy, so I will be looking for some TV viewing, I don't really watch much normally so I might try Mallory Towers! I'm trying to decide whether to do some exercise this morning, I did six days last week and on the one hand feel as though I need a day off but on the other hand want to do something! I'm currently sat on the sofa with the kitty though, so it feels difficult to move!

Sorry to hear about accident/feet side effects/tonsil operation, etc. Let me add to our collective list of unwelcome extras: covid. Just tested positive this morning. Had to cancel a physio appointment which I was looking forward to as well as my covid vaccine (yes, finally got around to booking it...should have done it months ago when I first started getting reminders).

My daughter had it last week so no surprises there.

Have any of you had covid while on / soon after chemotherapy? I finished 5 weeks ago and am wondering whether I should call my gp to ask for antivirals? Has anyone had them? I have had 4 covid vaccines and covid once before, but the last vaccine dose was over a year ago. Still, I suppose it could still get bad (not too bad at the moment).

I finished chemo last November and I got Covid just after Christmas, I wasn't particularly ill with it, but it did take a long time for my bloods to recover, including iron and white blood cells, and I do wonder whether it was a combined effect of chemo and Covid. It actually didn't occur to me to get antivirals or anything at the time, but it definitely might be a good idea to have a conversation with a medical professional @isaxx - I also had a cough that dragged on for quite a long time, I wasn't ill, just coughing.