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.

@ceecee32 Welcome to the new thread. How would your life look if you could magically change it? What steps do you need to take to get there? When I was at rock bottom unable to sit up in bed or get up off the floor I found a personal trainer who specialises in recovery (and old age!) and worked with her. She has lovely groups of oldies who have had a stroke or broken a hip. I think I should probably join them! The 60 year olds are a bit energetic for me.

@SummerCycling the Zoe project starts with an assessment of your family history and your lifestyle, then you have a 2 week blood sugar test and fat test and a poo analysis. You get results that tell you how well you process sugar and fat and how diverse your gut biome is. That leads to a rating on all common foods to see how well they suit you. I’m at risk of diabetes so I am banned from anything sugary or starchy, and even rice and pasta don’t suit me. I basically need to live on green veg and nuts and beans but luckily olives and red wine are okay so I will survive. My meals are a big mixture of onion, peppers, celery, green things like broccoli and kale and asparagus and lots of lentils chickpeas and beans with herbs and spices. I can eat lots of fish and seafood and cheese and a little chicken. Yesterday I made some lentil and cauliflower soup and it looked like compost! DH is being very tolerant of the weird messes but escapes for a “ dirty kebab” every now and then.
My gut biome is good but the processed stuff and sweet things suppress the good bacteria. It’s all very logical but takes a while to learn new habits.

I had a lazy afternoon after chauffeuring MIL to outpatients this morning. She is a lovely lady and a good role model at 90. I’m just counting down the clock to the end of treatment now. My feet are quite sore and energy levels 10 percent of normal but I am nearly done!

@thesandwich my poor boat has been neglected all year. She is out of the water for the winter now so I aim to get fit enough to sail her in April. That solo trip round Lands End with sunset at Minack was truly magical. There are places I go to in my head when unpleasant things are occurring and that is one of them.

@TwoBigNoisyBoys welcome and just lurk for as long as you like.

👋🏼 hi @Silkiebunny and @TwoBigNoisyBoys

Yes, five kids, two have left home now, good to catch up with you all again x

Hello and thanks for the thread Top.

I’m 55, married for almost 20 years with two kids 17 & 15. I live in Australia and was diagnosed with bowel cancer stage 3A in Feb 23, caused by a genetic syndrome. I had surgery in March to remove 80% of my colon plus about 50 lymph nodes, of which just one contained cancer cells. So I was recommended chemo, 12 weeks of Oxaliplatin infusions (x4) and Capecitabine tablets.

I finished treatment in late August, after a delay when I was hospitalised due to chemo side effects. I have now returned to work, driven purely by financial necessity. I worry every day that the stress of work is increasing my chance of recurrence, so now I’m stressing over my stress!

My surgery and treatment side effects have seen me lose 15kg and where I have landed is a healthy weight so I am trying to maintain it. Having very little colon means my body can’t cope with much fibre so where other recoverers are on organic vegetables I can mostly only eat protein and white carbs with a very few ‘safe’ fruit and veg.

I’ve started seeing an exercise physiologist who has designed a program for me to increase my strength and fitness. I’m also going to try acupuncture for my peripheral neuropathy which along with diarrhoea is my most significant post-treatment side effect. Coincidentally I’ve been identified as having ongoing liver inflammation which is believed to be unrelated to the cancer so I am having tests for that. I also need a hysterectomy early next year as my genetic condition puts me at risk of reproductive cancers. I seem to be unable to escape the clutches of doctors and hospitals!

Hi All,

I was diagnosed with TN breast cancer (BRAC1) both sides in Nov 2022 after having a full hysterectomy in Dec 21 (two surgeries close together after precancerous cells were found. All this after years of gynae issues). I then travelled for six months after the hysterectomy and thought I’d sprained my pectoral muscle.

I’ve got through the chemo (ended up in ICU with DVT and a PE). Surgery to remove both breasts. Radiotherapy. Now doing immunotherapy for a year, hopefully get into the public system for reconstruction.

I’m in Australia, with husband, dog and cat.

Trying to get fit. I’ve gained a lot of weight over the treatment. Back to walking loads, yoga and weights at home. Every I feel a bit better I seem to pick up a bug as I am working p/t as a supply/crt teacher. Doing a diploma in Community Development as hoping to change roles (and not pick up as many bugs) in the future. Feels like a lot is going on in my head. Getting a referral for counselling with a psych who specialises in cancer and will share any insights I get.

Keen writer, historian, traveller and worrier.

Lovely to have this thread. :)

Excellent thread thank you so much! Place marking!

Can I join. Breast cancer in 2020. Keeping reasonably fit and weight ok but alcohol intake increasing again. Seeing this thread on my feed will remind me to keep away from it. I feel DH almost encourages me as he has a drink or two every evening and elikes me to join him. At the time I think oh, well, just one glass - but it's every night!

Nice to see old and new names!

When I said yesterday yesterday that I've been relatively uncaged, I forgot to say that I do have some short-term memory issues now! And thinking about things more widely. I don't know whether that's the surgical menopause, the chemo or just the stress of the whole thing, but it reminded me this morning when I put a load of stuff in the washing machine and it didn't occur to me to check my gym bag and various places around the house where I've discarded things that needed washing, which I always would've done before. or I go to the supermarket for something specific and it doesn't occur to me to look at my shopping list for what else I need. Also, if I have an email that I need to respond to, previously I would've just remembered that it was there, but now I totally forget, so I have to have various written systems to make sure that I don't. My work involves a lot of thinking, and fortunately it doesn't seem to have affected my ability to focus, although I'd imagine that there has been some effect from not being able to keep things in my head for so long. It's frustrating, I thought it might get better, but nearly a year out and it hasn't done so far.

Reading through thread, thank you again, so helpful.

I'm mid 40s, two primary children and a DH. Diagnosed with stage 1 grade 2 hormone positive, her neg BC in the summer, I had surgery on both breasts for symmetry. Hypothyroidism, asthma and am hypermobile which I do have to keep an eye on or I decondition badly.

Peri was hell partly as I wasn't looking after myself and had a toddler. plus pandemic. When I finally went on hrt it was really helpful so it's been v hard to give it up and re boot myself without it and on tamoxifen. After talking to BC nurses i decided to take a chunk of time off work to work on "The Great Recovery" after my surgery and while starting tamoxifen. I wasn't in the best health before cancer so it's about that as much as my specific cancer treatment.

There's a bit of a ping pong game going on with hormones at the moment. Symptoms have been a bit shit. My great recovery tool kit is brisk walking (the dog), bits of aerobic exercise where i can (dancing and rowing machine, attempting to rope skip again when my feet allow). I'm following a lifting weights programme from www.movingthroughcancer.com/ (I have the book but it's free on the website) which has been amazing.

I'm not doing tonnes though. It's now about 20 mins now on the rower, weights take about 15, 3-4 times a week.

I'm also trying to do do Zoe inspired stuff from his interviews here and there but not the actual package. I'm basically mostly eating as @TopOfTheCliff describes as much as possible.

I found listening to ultra processed people on audible helpful and I do listen to Take One Think by Michael Mosely on radio 4, taking bits that I find helpful. He did an extended one with Tim Spector that's worth listening to.

Radio therapy in a couple of weeks.

@Ikeameatballlunch wow that’s a lot of progress.
Tim Spector was on radio 4 this morning on the Food programme talking about the Wild Biome. Some chap kayaked 2000km eating seal meat and whale blubber 😳 I’m not doing that for anybody! Some of it was fermented seal blubber and he said it was like an overripe blue cheese. Ugh!

@SierraSapphire I can relate to your cognitive loss. I decided not to return to work as a GP because I couldn’t remember proper nouns. I have lost place names, people’s names and the name of drugs. “ Sorry mrs thingy I have a great cream for your eczema but when I remember what it’s called I’ll send a prescription to the pharmacy!” I can sometimes remember the initial letter so it would be a cream beginning with B. This time round I’ve kept up with crosswords and sudoku which has helped my brain.

I am pleased to see we have a nice gang here. I think there comes a point during recovery that you don’t want to talk about biopsies or chemotherapy or other stuff from the sharp end. This is for looking ahead. I’ve booked my hip replacement for January but am a bit disconcerted I will be having a bone transplant to build up the socket. I think they use offcuts 😂
I’ve booked in to a Body reboot class in a couple of weeks. I hope I’m ready for it!
Top

Oh @LuisVitton I forgot to say welcome! I find buying some nice drinks like fevertree soda or alcohol free beers means I can join in and be sociable and not stand out from the crowd. Does DH need you to drink from the same bottle? Or could you have your own stash?

Nice idea for a thread @TopOfTheCliff .
The other thread was a life saver for me four years ago (3am chemo dexamethasone insomnia anyone?). After treatnment though I left the thread then and avoided all "cancer" forums.

I had breast cancer ER- HER2 +, lumpectomy, nodes, pacltaxel, radio and herceptin. My treatment ended in early 2020 so all the travel an fun I had planned disappeared into covid. My herceptin was also cut short by the pandemic so I felt cheated there. I also had a massive relapse of Rheumatoid arthritis because they stopped the drugs during chemo.

I just got my mammogram results from my four year check - NED.

I don't dwell on it but it never leaves you completely. I've just been through the rounds of 2ww for ovarian cancer - it wasn't, thankfully.
One thing I do keep up is a small group of local friend I made who all had BC. It stands out to me that they live with the aftermath more than I do because of tamoxifen and the like.

Great idea for a thread!

I am dipping my toe in tentatively as I am awaiting results for my first post treatment scans but I am feeling well physically.

Stage 3 cervical, seven weeks of radio, chemo and brachytherapy. I was going great guns with no side effects at all when suddenly I developed a DVT, apparently a side effect of the chemo I was on. That set me back hugely both physically and mentally - I went from walking and cycling ten miles a day, kayaking weekly and a few decent gym sessions a week to not being able to walk more than twenty yards without stopping.

Treatment finished in July, although I am still on blood thinners until December at least.

Physically, day to day, I am 'fine' - have been on 12 mile hikes and it doesn't interfere with my daily life anymore. But I am nowhere near my old fitness levels.

I also have early menopause to contend with due to the treatment, and am trying to get fitter because I understand this is helpful not only for this, but in preventing reoccurance (touch wood my scans come back clear).

My short term goals are to get back in my kayak and improve my muscle tone as I suffered a lot of muscle wastage during treatment. I have booked a week long sea kayaking expedition next June in the lofoten islands so want to be strong enough for that (and god willing, well enough!).

@TopOfTheCliff Thank you for the very helpful info about Zoe. How amazing they can see all of that about your body's metabolism of the various foods and advise you what to eat / avoid etc.

I'd find it impossible to avoid chocolate / chocolate biscuits, so I don't think I dare find out how my body deals with them. Good news you're fine drinking red wine! 😃🍷Thank goodness for that or it'd sound like punishment rather than healthy eating. Compost soup, I can't say that sounds too appetising 😂but it makes sense I suppose that ultra processed and/ or sweet food is bad for the biome. You didn't mention meat, would they advise against eg a fillet steak or lamb shank - or does that depend on the individual feedback depending on your own body?

@Ikeameatballlunch Snap, I also have hypothyroidism, asthma, and hypermobility. Are we twins? 😂

My body seems to think it's fun to collect conditions: I have various others too. Chemo added some of them 😡just as well my cancer responded to the chemo or that would've been very hard to accept.

That's interesting you're following a similar diet to what @TopOfTheCliff described on the Zoe plan. I'm going to try that too - at least the part about making sure I eat lots of varied vegetables each week.

I gained around 2 stone throughout my cancer treatment, and I'd like to lose it again, or most of it. I'm now about 2kg into the overweight category, but I've got small bones so actually still feel and look chubby at a weight lower than that.

@SierraSapphire I also have a lot of problems with short term memory after EC chemo. I had other chemos too, but my feeling is it was the EC that damaged my brain. It's horrible and I need my brain to work in my job, there's no way around it.

Sorry to hear you've got the same problem; they're not open about it and MacMillan even said 2 weeks after chemo ends my brain would be back to normal. It's over a year now since EC chemo and still the same memory, focus and cognitive issues. The medical world need to listen to and believe patients more by the looks of it.

@Silkiebunny That's lovely how that all happened in the Azores, and probably the best time for it too after your cancer treatments.

@SummerCycling there is a lovely snack recipe with 85 percent cocoa chocolate and almonds or pecans with sea salt. I enjoy that instead of cake with coffee. It’s easy to make too.

Oh and meat is okay as long as it’s lean cuts and not too often. We have steak as DH is low in iron.

Sorry Top I had to laugh at your description of the effects of brain fog even though it's not really funny. I looked at the research though Summer and it seemed to conclude that it wasn't specifically chemo as cancer patients without chemo described it too, though I felt that was what caused mine, but who knows. My eyesight for reading got worse during chemo too then sorted itself out. I've been having a slightly bad tempered discussion with oncologists because my iron was low for a really long time after chemo but they kept telling me it wasn't a problem so I kept telling them it was a problem for me but all the letters I've received just tell me again that it's not, so I goes the official view is that I don't have a problem with iron 🤷‍♀️. So what's the point in mentioning anything? I read a study that said patients reported side effects at twice the rate than when they asked oncologists.

@TopOfTheCliff I would definitely take that from you as a GP - if I knew it meant you were listening to me. Think all women of a certain age get the brain fog, chemo or not. My friend is certainly retiring because she’s experiencing similar, and she doesn’t have cancer.

I was just very lucky my GP did the Ca125 test even though he thought I was being over anxious.

But I also get how stressful NHS work is, and I wouldn’t want to be there now. You have to think of yourself.

I will need this thread!
Was good with food up till now, but on second last chemo, bored and generally sore. Comfort eating. Online shopping (most will go back, my feet are numb and I feel I need some nice flattish shoes). Now had crisps and a glass of white wine, pretty sure my oncologist wouldn’t approve.

I went a bit mad with shopping and concerts and trips away in the last year, I think it's a common thing from what I've seen from others, I need to settle down a bit though and stop spending!

@SierraSapphire my eyesight definitely took a dive during chemo and still hasn’t recovered. I wear glasses but they are just not strong enough atm. I’ve been holding off getting them tested in case they improve but now I’m back at work look at a laptop all day I’m getting headaches.

Any tips for building up your immune system? (I’ve had lymph nodes all removed on my right side. And a couple on the left).

I’m eating reasonable amounts of fruit and veg. Orange juice this weekend because of the head cold. I’m taking a multivitamin. What else can I do? I seem to get every cold going and they just knock me out which means I go back to square one.

Weather here is wet and wild which doesn’t help either!

Could you try gentle swimming? Preferably somewhere where there's also a steam room and cold shower - the cold shower in my experience in the past is the main event as it helps get your circulation moving.

I can struggle a lot with picking up multiple colds from kids at work; the years I went regularly swimming and did the cold showers I was definitely better.

I would pace carefully though. Let your body adapt over time slowing increasing.

Also finish your shower with a cooler blast, Slowly increasing.

Only issue can be picking up a bug so go when it's quiet.

Or Regular brisk walking?