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 my bc nurse is also very much of the opinion that sugar can exacerbate menopause symptoms such as hot flushes and insomnia. So much temptation around at this time of year- thank god I can't stand mince pies!

Sugar is the most consumed, addictive substance in the world ! Once I start, can’t stop and will easily polish off a whole bag of sweets in one day. I’m using date syrup (which is essentially still sugar but just slightly better than the candied upf stuff) and I’ve weaned myself into drinking tea and coffee with none added. @FairyWren7 I’m up North, near Blackpool but the cosmetic surgeon I’ve booked is in Bristol. Weightlifting @SierraSapphire Chemo is traumatic enough without having to deal with all the admin cock ups you had to endure. I was crying inwardly when they couldn’t find a vein a few times and that’s nothing compared to going in to be told not today !! The first oncologist I had was the same re fasting. His reasoning was that they didn’t want to compromise or delay my chemo course due to any complications that may have arisen due to fasting. The second oncologist (I discovered I had private health care through work which covered chemo at Christie’s) was more understanding but just warned me regarding excess water consumption.

… meant to add @FairyWren7 weightlifting gets a bit addictive, if you do it regularly you’ll see results quite quickly!

That's good you have a date for surgery Top though probably the last thing you feel like doing after 2 lots of cancer treatment but hopefully will improve things for you.

Bookist I also would not bother with Tamoxifen for a 0.5% benefit if that's over 10 years or 15 years or its not much different at 10 or 15 years. As would imagine risks are similar. Though if would be good if they could quantify risks like they do for chemo (mine said 3% risks chemo for Predict though checked and it wasn't risk of death but risk of serious issues from chemo like heart issues). I did look up Tamoxifen and weight gain and although lots of women like me seem to gain weight on it (for first time in life) the studies claim its because you are going into menopause at the same time not due to Tamoxifen. My own results now I am weighing myself I think the Tamoxifen weight gain is fluid / inflammation only and my oncologist said takes 6 weeks for Tamoxifen to be out of body and presumably same length to be back on it at full amount. For my doing this once I found the only difference was the fluid which went off when off Tamoxifen and came back on after it and my weight loss was always equal more or less to calories consumed (exercise adjusted for calories) both on and off it but first month off I lost an extra 2kgs which I think was fluid. But after that no different on or off it. Though 2kgs seems too much for fluid. And I'm no expert just trial and error.

Edema I first got in lockdown and doctors did not know cause, in lockdown just in ankles. In chemo it went into face and neck, assumed steroids as up until this point normal BMI. But I saw some improvement after stopping steroids but restarted on Tamoxifen. Improved off Tamoxifen and went, reappeared when Tamoxifen restarted after a few weeks. I'm only guessing here but only so many possibilities. I hate that the most of everything as you can't hide your face. I looked normal again the time off Tamoxifen and people were so nice to me and I just wished could be off it forever. Other possibilities are sugar but does not correspond with sugar intake at all. Kidneys could be possible as kidney disease stage 2 was detected in chemo bloods but not before and been there ever since though they don't seem to care, very serious kidney issues for my Dad and also CT showed things on kidney. Also they think I have adrenal condition possibly as a mass there for years and cortisol too high in tests but meh I think that's just stress. Its all benign which is main thing. I have been endo test avoiding but just did it a week ago or so. I would love to know what causes it and solve it. Atm just continuing on weight loss and Tamoxifen and its very much there on the neck. Pre chemo I look fine then I aged 10-20 years overnight. I always looked younger so its not that I look old just I don't look attractive like I used to. Especially when added to 1 breast cut off. It gets me down at times not as I'm very vain but its just one more thing and people treat me quite differently. And seeing old photos, current photos, mirrors, people who look like I used to all can trigger that. Oh and hair is still trashed after chemo, had lovely long hair before, came back curly and growing out a lot and so thick and it just screamed chemo at me with the curls. I am getting less down about it and generally am quite cheerful now just need not to think about it and avoid cameras and mirrors for another year until my hair is back and the post menopause weight has gone.

I really hope the inflammation can go too, actually atm I am on a much lower sugar diet and neck is as bad as ever but ankles are normal. Fairy I went cold turkey to cut out sugar totally for a week, this left me feeling like death for a week, shaky, hangry, flu like but it did stop a lot of cravings and hunger. But it wasn't sustainable but did cure me of a few things. I now have no sugar in tea, don't drink coffee (except for 1 before swimming pool at cafe but then am going swimming) and zero alcohol and no sugary drinks. I just drink tea with milk and no sugar and water with lime juice, that's it. That cut down sugar a fair bit as before I had sugar in tea and coffee, a tiny amount of alcohol and lots of elderflower cordial and coke sometimes. This helps with calories a lot and imagine dentist will be happy too though no major dental issues. I have gone back to some sugar in diet otherwise I get like blood sugar crashes but being calorie aware and not just doing a just cake diet. I do try to do days with no sugar but if I feel I am crashing I have something with sugar and then I feel so much better. I have things like bananas, lemon curd yoghurt, a few biscuits and the odd slice of cake. Normally days with biscuits or cake I don't lose any calories unless swimming but that's OK. I am no expert though and its the first time in life been able to cut sugar this much. The whole female side of family has sugar addiction but oddly I am the first female to have cancer and oncologist said no link to sugar. The rest of the females live a long age in good health and its the males who die very young but don't eat much sugar. But sugar isn't great. I do love my sugar though, had an interview once to be a sugar economist and that was such a great job, high pay, tax free, lots of overseas travel to exotic destinations staying in fancy hotels, lots of parties but sadly didn't get it.

Hi ladies, is it ok if I join you over here? I'm not quite in the after part yet cause I've got 10 days of radiotherapy starting on 2nd January.

I've just started on Tamoxifen, side effects I'm noticing so far are hot flushes and increased hunger, but tbh that could just be me. I'm trying to increase my activity on days when I can, luckily I walk quite a lot in my job, yesterday managed 18,000 steps (including a get fit with Rick workout), but today only managed 6,000. Onwards and upwards.

Welcome @Octopus45 of course you can join us. I started this thread just before I finished capecitabine and was still under the cosh but it helps to look forward and begin to see what Life After will look like.

I have trashed myself as usual. After yesterday's bike ride and yoga I should have rested but instead went to a gym class today and did some resistance training. Fun but I am exhausted and aching! The good news is that I am much stronger than I was even a week ago and most bits seem to be working!

I nipped out to the garden centre to get some bulbs and ended up doing about 50 percent of my Christmas shopping. Now trying not to go mad online with bargains! Rest is important. Repeat Rest is important!

Well done Top on doing all that.

Welcome Octopus

I did manage to get almost 500 calories under today despite DH's work Christmas hamper arriving and no swimming as needed to do house, swimming tomorrow. December is definitely not the easiest month to diet! Though at least all the food is extra nice.

I did have a lovely and healthy meal at the Thai Pak Pad Med Ma Muang vegetable stir fried with spring onion, red pepper and garlic topped with cashewnut which would recommend.

One of the research papers that I found whilst searching around diet and endometrial cancer was that there is a link between lower fat milks and endometrial cancer, but no link between whole fat milk and endometrial cancer. Having done the Zoe program. I think this is probably because the sugar in semi skimmed and skimmed milk is absorbed much more quickly into the bloodstream causing a sugar spike whereas in whole milk the fat in the milk slows down absorption so a lesser spike, and insulin resistance is the link. I always have whole milk now in my coffee. When you dig into it, it's fascinating that the things that you think you are choosing because they are healthier in fact turn out not to be.

I got back from Manchester last night, but I feel absolutely exhausted, I've had what is for me a lie-in till 7am this morning, and I've got meetings all morning, and I really don't feel like doing any any more work. Maybe I'll have the afternoon off. I've got some company with my morning coffee, she's very affectionate in the mornings then ignores me the rest of the day!

@SierraSapphire it is very interesting. The whole fat versus sugar issue has been well documented.

Love the cat pic! I’ve just given my cat a large prawn! It’s basically her most favourite thing to eat! She’s spoilt!

Love the cat pic Sierra and your cat is very lucky Fairy Floof also loves prawns though will only eat them uncooked.

That's interesting about the full fat milk. Though I have a DH who leaves the milk out of the fridge half the day then is completely oblivious that the milk has gone off so we do have semi skimmed now. I have to be careful on the calcium on a diet as have osteopenia but we have a fair amount of cheese (like yesterday had beans and cheese on toast for lunch and mashed potatoes with cheese and brocolli for dinner, with lime juice and water and tea with milk to drink though did also have a bit of popcorn and 2 pieces of fudge from DHs hamper which arrived yesterday 😂) and I take a lot of milk in tea. So I think I am just OK still on calcium.

@TopOfTheCliff glad you've got your appointment through, sorry about the timing. Your energy levels amaze me, some days I'm fairly energised, but other days (like today) I just feel flat and exhausted, didn't sleep well last night and ended up having a hissy fit on DH in the wee hours, not great I know I have apologised. Interesting about the Tamoxifen, tbh I dont relish taking it for a year, followed by 4 years of Letrozole, on the basis of how I'm feeling 2 weeks in, we'll see.

I found the first month on Tamoxifen by far the hardest when I ached, got hot flushes regularly, felt sick but my first month was after radio when effects hit after (though don't think any effects from radio), chemo were effects can peak 3 months after as well as going into menopause from chemo unmedicated so was hard to tell what was causing what. But after first month had hardly any hot flushes and a few aches but manageable, swimming though was much easier than walking, walking has improved though. I did change brands as well which oncologists say doesn't make a difference but lots of patients say it does and second brand was much better than first but could have been timing. It gets very hard to get same brand each time though but I insist as I am super sensitive to med changes. Our village chemist would not help with that but a lovely chemist in the nearest town helps and I am so glad for them. It doesn't help the NHS rule 1 month of meds at a time. Though after a few distressed calls from me on that they have backed down and I now get 3 months at a time which probably makes easier for chemist as well.

Thanks @Silkiebunny hoping it would settle down.

@Silkiebunny yes Minnie loves prawns. She goes right up on her toes when she smells them in the kitchen.

I’m going well. But I’m really noticing the tiredness and the need to eat for energy after swimming especially the day after. I’m going every other day at the moment.

I did a days supply yesterday, it wasn’t a particularly busy day (did two this week) but I came home and just sat on the bed. I was so tired and drained. It’s now 9am the day after and I’m still exhausted. I’m taking an immunotherapy drug for a year Olaparib and the oncologist has said I may feel tired and get nausea. Does anyone know if that is a major factor with energy?

I suppose it’s to be expected and from what everyone else is saying if you do a lot you crash, so I suspect this is relatively normal.

My Dad and step-mum get here next week. I can’t wait to see them and hope they manage the flight ok. I now need to deep clean the guest room as husband has got all of his stuff in there so it’s going to need a lot of switching stuff around for wardrobe space!

Happy Friday everyone!

Lucky cat @FairyWren7 . My two haven’t had the chance to try prawns as I am allergic.

I hope you have a lovely Christmas with your Dad and step mum.

Hope you have a lovely Christmas with your Dad and Step-Mum Fairywren I found after the intensive part of treatment had finished (surgeries, chemo, radio) I built up though was able to do well at swimming very quickly, I was just on Tamoxifen not immunotherapy and also did not return to work so could rest when I felt tired. I think crashing is normal and very hungry after swimming is normal. Its just getting into a pattern that works for you and over time you find that. I think you are doing really well and there's nothing wrong with rest days.

I wasn't crashing until started trying to diet as well and I do get crashes on that, seems to be when my calories are too low / sugar type crash and I don't have the balance right on that yet. But I have made progress and kept exercise up and think I am getting enough vitamins etc so overall I'm very happy with it. Yesterday swimming I was crashing which is really rare for me - I did 63 lengths of 15 metre pool plus jacuzzi and sauna but stopped there and normally do 100 without too much effort. Wasn't helped by a large group of elderly people swimming like sloths chatting as they swam walked and a few very loud hyper kids. 😂I gave up at that point. Though I had done 30 mins hoovering and a kitchen clean that day so wasn't too bad. Normally the pool is empty this time of year though.

Couple of cahms calls for DS online though they have largely given up but won't sign off as part of some box ticking exercise. Then headlights went on DHs car so couldn't pick up Sainsburys order. Then mended DSs remote only to find his TV is broken. Then DH made steak fajitas which were lovely but fairly high on calories though still under for the day. I felt fairly deflated after that then Floof came on the bed and DH came to see why I felt deflated so I felt very loved. And I have a spare TV and hopefully headlights can be fixed tomorrow.

DD came back full of energy as ever, certainly don't have her energy - out at school all day then a dinner party until 1am then 7am leaves house for work next day and works a full day as well as studying. DS, on the other hand, makes sloths look energetic. Have a good weekend everyone. We have been invited to a street party.

It sounds like this week is a little jinxed for you & I @Silkiebunny - went Christmas shopping in Manchester on Weds and on our way home, a lorry went into the back of our car. It was crawling along as heavy traffic so no injury to us but the back of my car / wheels are ruined. Had to wait 2 hours for the AA to arrive and it was chilly but arrived the did and the lovely Finnish AA man drove us home. Happily (!) the insurance have deemed it no fault and we’ve already received a hire car. DHs eldest is here to visit and I’m munching on a breakfast / lunch of sautéed mushrooms, lambs lettuce, sauerkraut and seeds in a miso dressing. Going to complete the predict test later to see what tamoxifen % I get and load some stuff on Vinted.

I meant to add, I’m usually ok energy wise throughout the day, however do get to bed at around 8/9 as exhausted by then.

I’ve just done the predict test, my 15 year prediction apparently would be surgery only 53%, + tamoxifen 63%, +chemo 73%, herceptin +79%. Given we could have been squished by a lorry Weds eve; I can live with those odds for cancer reoccurrence. Weird that it doesn’t include sport / activity levels or diet so I’m being optimistic and giving myself another 10% in my head if I keep the activity and good diet up. Alcohol - I now drink Rose or white heavily diluted with soda water or a g&t two nights a week. As I don’t want to drink anymore but need a „hit“ of some sort, I’ve procured cannabis from a v reliable source and going to melt some into butter and make cookies with it. In contrast to alcohol, it’s very anti inflammatory. I will make these over the weekend and report back my findings !

Sorry to hear about the accident Witch My 15 year ones are similar, surgery is 50% for me and no herceptin so overall is lower but the average person would still be alive and I hope the exercise will maximise my chances of being in the better half. It's interesting as well they put hormone therapy in model before chemo whereas would make sense other way round and there's about a 2% overlap on mine if you take hormone off. Think mine is 71% at 15 years with everything which is a bit meh but I have done most of what I wanted already so what will be will be, it's mainly for my DS and DD and some more travel.

DH did manage to get Sainsbury's order today so hopefully luck is back improving from a very low point again.

Much better day and getting back to fine again. Swam 100 lengths, jacuzzi steam room and sauna and coffee with DH. Gave DS my TV as he's broken his and I don't really need or use my pretty new one. Tidied up a bit. Got Sainsbury's order and cat loved the wild rose bath foam, he loves the old ladies scents.

Ooh @Witchinawell can you drop off some special cookies at our virtual pub the Patience Inn? I’ve always wanted to try them.

Well done @Silkiebunny you are doing well!
I have been throwing myself into Christmas celebrations this week. I’ve had two sports club dinners, a Christmas draw, and a yoga tea party. My diet has gone out of the window but I have been very sociable and it has been lovely. Now I am going into hiding to avoid catching anything before Christmas. No more parties, just outdoor socialising. I’ve been happily cleaning and tidying up my house and garden and with another ten days to go it should be nearly normal by the 25th. It makes me happy being well enough to spring clean. I’ve got some garden centre vouchers hoarded so might treat myself to some more decorations. I am finally feeling like myself again. Hooray!

I went to a yoga class and then the spa and had a lovely outdoor swim in the heated pool in the dark, I'm dressed in my gym stuff right now and I'm going to do 45 minutes of cardio when the gym opens.

I've been feeling a bit down this week, I have had some digestive symptoms, which I think perhaps come from the throat operation, and the fact that I was taking a shed load of painkillers, but could also indicate a recurrence. I found the nurse specialist, but they weren't very helpful and just seem over stretched and was told to go and see the GP, so I have an appointment next week, it's probably nothing, it's just a more severe version of how I've been since chemo, not a massive change, but it's difficult to stay positive sometimes . I also had a big row with my mother who is increasingly confused but still refuses to get carers, not for any personal care stuff but just to keep track of all the admin. This week she'd lost her purse, she had no idea what week it was, she knew my brother had been up to visit her (for the first time since the summer mainly to moan about his own health, he never does anything useful) but couldn't remember what day, I mentioned we'd seen my cousin, but she had no idea who I was talking about, i'm just waiting for the next disaster to happen and I'm sick of being the only person she can call on, we've had this conversation over and over again about there needing to be someone else and I've told her on occasion I'm worried about my own health but she doesn't seem to care or take it in (though she is very worried about my hopeless brother).

Anyway, DD is back later and we are going to a fancy dress Christmas party and I will be eating pizza, which is a rare treat these days! Though I will be drinking fizzy water rather than alcohol. It's pretty unusual for me to go out on a Saturday night.

Swiming in the dark in warm water sounds lovely @SierraSapphire. Im going to the gym this morning too. Adapted a „healthy“ cookie recipe yesterday eve and tried my first space cake. Very low dosage but just enough to make me feel wrapped up in a lovely warm blanket not fuzzy just very comfortable. No hangover this morning and my sore knee from over doing it with exercise is gone (this may be placebo though). Id love to drop some off at the Inn @TopOfTheCliff. Meeting a friend for afternoon tea today.