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.

@Original2023 Welcome to this thread. Long may you remain cancer free but, yes, the nagging fear never goes away completely and it is important to remain vigilant after having had radiotherapy in your 20s. I hope our private message exchange has reassured you - at least that you are not alone with that history and wondering about the long term effects. It is hard with a busy life and children to remember to look after yourself, but important to do so.

Ooh yum!

I had a brain fog day yesterday. Which is always triggers anxiety.

It's those days I struggle to know what to eat. Dh was away and Dinner was salmon and mayonnaise for me 😬

Is it worth a separate recipe ideas/links thread? I have a few saved on Pinterest.

Thank you Isaxx, I appreciate you taking the time to reply to me. This thread is very helpful!
It is certainly important to remember to take time to look after yourself, sometimes easier said than done but I am hoping to make it a priority to at least help with sustained good health.

Hi all, can I join you? Many familiar names here from the cancer thread. I was diagnosed with triple negative breast cancer last October, had 12 rounds of chemo and immunotherapy, lumpectomy and radio, now have 4 more rounds of immuno to go. I lost a lot of weight as I couldn’t really eat much when on chemo so just trying to keep it off and recover my fitness now. I worked throughout but obviously at reduced capacity so also trying to ramp that back up now. I have some lingering side effects, mainly neuropathy

My first time on any of the cancer threads! I was diagnosed with lobular BC ER, PR positive in august 2022 at 46, 2 lumpectomies and lymph node clearance, 6 chemo sessions(EC and docytaxel) and 4 weeks of radiotherapy which finished in July this year. I'm now taking Abemaciclib which was pretty newly licenced for non metastasised BC and I take Letrozole as well as monthly zoladex injections to suppress my ovaries as I hadn't yet reached menopause- I will have my ovaries out soon to avoid having this and I figure it's one less thing to go wrong! Zoledronic Acid also to schedule shortly! It's s lot but my BC nurse said the oncologist likes to front load treatment to avoid reoccurrence and despite some side effects I'll take that. I found it hard during active treatment to not let my mind spiral if I read certain things so banned myself from google. However Im all for positive steps to recovery and enjoy picking up and sharing best tips. I'm also a huge ZOE fan but won't spend the money to get I suspect a rubbish micro biome report from all the years medications. I try to follow a diet with few UPFs and eat lots of kefir , kombucha etc. I have a prebiotic muesli most days that has 15 different plants in- it helps to hit the 30 a week! Weight wise I need to lose about 10lbs but despite all my medications having weight gain as a side effect it is remaining reasonably steady...

@myrosehasleftme Zolendronic acid is for osteoporosis I think? I was diagnosed with osteoporosis two years after treatment though I think it's unrelated. I take alendronic acid for it.

Diet wise I don't get too hung up on diet though I try to eat healthy foods I never ban anything. I eat a vast amount of fruit and veg, moderate amounts of sweet stuff and a bit of alcohol. I am not overweight and am moderatelt fit despite rheumatoid arthritis.

On reoccurance. A friend has recently been diagnosed witha new BC 14 years after her first one. They think there is a genetic factor.
On the other hand I discover recently that my 90 year old aunt had breast cancer 35 years ago and was on the original trials for herceptin.

@Skap yes zoledronic acid is the iv drip version of alendronic acid. They are giving it to prevent osteoporosis developing (due to oestrogen suppression) and also to stop any bone metastases. I've been told it isn't too bad just a couple of days feeling fluey and it's only 6 monthly. I have also started doing weights (online 'weights with Cee' as recommended on a Mumsnet menopause thread)- she's great to follow and I'm really enjoying that- taking it slow due to the lymph node thing but that with some yoga and brisk walking across the week feels totally doable , just got to stick with it...

Going to look at the big strong lasses content too

Ooh so many good ideas on here! I bought Caroline Garritts book Get your Oomph back ages ago but it has got dusty while I was going through IV chemo and surgery etc. Time to dig it out and to try some of her routines on You Tube I think.
I am so pleased this thread has taken off. It’s lovely to see some old names from the Cancer Thread too. Glad to see you are thriving!
I am still too tired to do much on Capecitabine and ducked out of yoga today but I have only got NINE days left now and I’m counting down.

Welcome to all the new people, or welcome back if you're returning. This thread is so busy!

Regarding chemo brain or general cancer brain, my own was caused by Epirubicin and Cyclophosphamide which were the first two chemos I was on, for 4 cycles. I was so mentally affected by them at the time I couldn't really understand speech or function at all. My brain felt appalling.

I was on paclitaxel and abraxane after EC chemo, but my brain started to improve somewhat on those; they didn't seem anywhere near as brain-toxic for me personally.

I didn't notice any effect on the brain from surgery, radiotherapy or the 18 cycles of two monoclonal antibodies, but they may have contributed somewhat without my noticing.

I enjoy my job, but it does need my brain to be functioning well eg analytical skills, general critical thinking, problem solving, creativity, communicating with people, etc are all needed. I finished EC chemo in the late summer of 2022. I'm starting to lose hope I will ever have my former brain back, and will need to see if I can do my job well enough. I'm years off the retirement age. My job are happy for me to start back part time in the new year. I'll try and see.

I always wondered if the memory effect was the steroids as I would have no memory of Mon to Wed steroid days on Thursday each week then things would improve a bit before relapsing.

I barely took my steroids so it might be that but not just that.

@Robotalkingrubbish - thank you. I have similar- but high grade, so I just wondered.
My friend had low grade ovarian cancer removed over 5 years ago - actually diagnosed at pathology - they thought the cyst was benign. But yes, you can never completely be in the clear.

@myrosehasleftme I was expecting an awful gut biome after three courses of chemo in three years but I think the fact I argued and ignored the neutropenic diet has stood me in good stead. I ate healthy fresh organic veg raw from my allotment and drank kefir and kombucha. The results were very good. It is annoying and a bit alarming to find I am so bad at processing sugar but my DF was a type 2 diabetic and I am overweight so fairly predictable. I know I need to take action and Zoe at least gives me some rational strategies for doing that. I have to avoid bread, rice, potatoes pasta and cake if I want to improve. I see a lot of lentils and chickpeas in my future 😂

@TopOfTheCliff that's really interesting thank you- maybe I will go for it in the new year when I can face the costs. You sound very similar to me in what suits you to eat and not. I do love pulses which is lucky but I will never not eat bread so go for the brown sourdough types (most of the time !!).

I’m just back from our first Skittles game of the winter. I didn’t play last year due to chemo and without me they lost every game. Tonight their Captain was back and rallied the troops against a tough opposition and we won! I scored a 16 spare which is my best ever score. It made me very happy.

In other news I made a Moroccan sweet potato stew with onions celery red pepper tomatoes and chickpeas and lots of herbs and spices. That is lunch sorted for a few days! Seven days of pills left….

That's good you're getting back to your old activities Top. I felt very tearful when I walked back into my old posh gym, when I cancelled my membership I thought I'd never be back. I still have a sense of how long is this going to last, but try not to think about it!

@TopOfTheCliff congratulations on the skittle win.

Do you have a recipe for the stew, sounds amazing.

Great to hear about all of you getting back to old activities. My gym membership starts up again on the 1st of November, after having paused it during my treatment. I look forward to swimming again, particularly as it might help keep my lymphedema under control. Still looking for other solutions however. I have an appointment for lymphography in 3 weeks. Very nervous about whether I will or will not be found suitable for LVA surgery. Also awaiting a further biopsy result of the nodule in my arm that has half a dozen specialists at the Royal Marsden baffled. The cytology suggested benign but didn't tell them what it was. So, they have now done a bigger punch biopsy. It is hard to feel like I have entered the great recovery stage while still going to appointments, having tests and waiting for results. This was not quite how I envisaged the post treatment phase to be like. Trying to juggle work with an ongoing schedule of medical appointments, managing swelling in my arm and uncertainty. But, at least I am not as tired and have swimming to look forward to.

A quick question about hair regrowth. I am almost 5 weeks post last chemotherapy and still no sign of new hair. How long did it take for you?

@JlL2013 here you are:

https://www.allrecipes.com/recipe/268687/moroccan-sweet-potato-stew/

@isaxx the hair thing is like the watched pot. You keep waiting for it to grow but when you forget suddenly you have a hairy chin and legs and everywhere! Mine started growing towards the end of the taxols but took a good two months to seem like hair not fuzz.

The physio has helped my shoulder impingement enough that I am trying some very light weights today. Only 2kg but that’s progress.

@isaxx I'm sorry to hear about the stressful business you're having with lymphoedema and the uncertainty whether you'll get the surgery you want for it. I really hope it works out for you. I've read it described as a "devastating" side effect, so they should absolutely act quickly. I hope they do.

You asked about hair regrowth after chemo. I had complete loss of hair on EC chemo, but noticed a tiny bit of hair growth during the taxanes, but it was rather sparse. True robust hair regrowth was noticeable by around 3 months after finishing chemo. I had surgery in between though, and didn't have a straightforward recovery, which could possibly have delayed the hair growth (I imagine). I no longer looked bald at 4 months after the last chemo. Eyelashes were slower, they have also grown at a much slower pace since initially appearing.

@isaxx I jlost all my hair by the end of chemo, I had a look back at my photos and after 2 months I had a full head covering like it had just been shaved off, by 3 months I had enough that I felt comfortable to go out and about with it. It's now coming back straightish on top, curly at the back and is hitting the hard grow out stage at 6 months after last chemo but looks more like a hairstyle choice than chemo patient. I think it's possibly growing very slowly due to the abemaciclib but as long as I have a covering I'm not too worried. My eyebrows are still very sparse and my underarm hair has not come back (even on my non lymph node side!).
I hope you get some good support/ treatment for the lymphoedema and enjoy your swimming.

@SummerCycling @myrosehasleftme Thanks for the replies about hair. It sounds like I should stop obsessively checking myself for signs of new hair as it could be a while yet. Patience is part of the whole experience isn't it.
The recipe looks good (as does your house)@TopOfTheCliff ! Must try it! With my sense of taste back after chemo, it is great to enjoy food again. I am naturally slim, but I may not be for long at my current rate of 'enjoying food again'..

Not really sure of hair growth as did equivalent of cold cap so kept around 40% of hair but was told chemo continues to work for 3 months after so would say it's normal.

Swimming is great. DH could not do it today so I could do more and did 150 lengths x15m and sauna steam room jacuzzi then DH said need to get out but was lovely and quiet. Here is Floof with cake.

Day 3 done on painting house and kitchen guys said back tomorrow or Monday should be final ones. Just drank rest of champagne so a bit woozy now, one glass does that to me. 😂

@ClashCityRocker Great News!

@isaxx I lost all of my hair but having quite reasonable regrowth now three months on, I’ve been taking biotin which I’m sure helps! It will come! Mine was waist length and very thick. I’m hoping I live long enough to grow it back!

@Silkiebunny that’s a great pic of floof! Such a great name.

I’m now on antibiotics for a sinus infection - deep joy, so no work this week. It’s turned hot here today so am having to walk the dog earlier. He’s had a haircut and leap in the lake this morning so is going in the bath later. Pic coz he’s looking dapper!

I’ve got a psychologist organised, have upped my antidepressants, and have started eating too much dairy milk again (whoops). The healthy eating (no chocolate/low carb etc) can restart on Monday. I may also have got the right piece of paper to claim back some of my out of pocket expenses from the surgery (it’s taken months - so complicated 🙏🤞If good thoughts could be sent out for that as it’s quite a lot of money that I need back!

Food sounds amazing @TopOfTheCliff - you must be within a week of ending your treatment?

Now it’s hot I’d like to swim, but only have the pad things you stick in your bra (or bralet in my case) I imagine you can get something for swimming. Any experience out there? I might phone up the breast cancer nurse and see what she suggests.