The Great Recovery part 4

[TopOfTheCliff]

Time for a new thread. Welcome aboard!

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!
Here are some resources we found helpful:
The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/
Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward
Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html
Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/
Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients
Any more suggestions? Post them below
There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

Thanks for all the good wishes - I've been a had an exam by a surgeon, mammo on left side, ultrasound on reconstructed right and its all clear both sides. Just have some scar tissue on the right side so that's 4 years all clear now from the date of first surgery in Dec 21. Just back home and had a bath but still feeling a bit did that just happen. They also weighed me with clothes and shoes on and I was normal BMI at 24.

I hope we all continue to have good luck re the tests and hope yours come back all clear too @TopOfTheCliff I also don't get anxious most of the time but only have two modes of la-la-la cancer, what cancer, never had that or just before test of I think I am going to go into long-term hibernation so I don't have the test. Hope you can sort through the rest quickly. I am also finding 2026 mixed so far but now I have the all clear and the days get a bit lighter each day am hoping can be another good year. Hope its good for us all.

DD is now back at university, miss her chats but it does mean there's less stuff all around the house and we can get it all perfect again. About 20 plates / dishes / cups have reappeared. DS made himself a cheese toastie whilst we were out and also took a bath with mud trail to the bath. Will recommence house and garden projects now. I can't wait for end of March when clocks go back.

Thanks @Littlecaf definitely worth doing the exercising.

One thing that was amusing was the lady ultrasounding me was saying how great the reconstruction looked inside it on her ultrasound and was much better than the typical reconstruction. She said inside you wouldn't even know there's a scar you only see on the outside. Definitely in a job she loves. 😂

I’m so pleased to hear your news @MrsSPenguins What a relief

I really need to start eating healthily again. I was doing well before Christmas but the last few weeks have been bad. Onwards and upwards!

Thanks @dotty2

Our diet also needs less sweet things in after a month and a half of cakes for Christmas and DSs birthday. We've kept up lots of fruit and veg and weight has been stable but would ideally like to lose another stone. Though now BMI is at 24 not sure I will, I feel quite weak on a 1,200 calorie diet (plus exercise calories) but otherwise I don't lose weight. Though days I exercise a lot is fine so that's probably the key but meh.

I've just taken one for the team and polished off the last of the chocolate log. There is still some stale stollen but I may just chuck that out now. I haven't lost or gained any weight for a while, and am cranking back into normal activity after mild Covid and Christmas disrupting my routines. I went to a Pilates class which involved dumbbells this morning, and got a nice "well done" from the teacher at the end. She has known me since I was at rock bottom so she understands my glee at being even halfway fit. Why is exercise so hard though? I don't think my DH understands that for me to ride my bike up a steep hill is a major effort while he soars up chatting. I guess most 65 year olds find exercise harder than they used to.
I spent this afternoon crafting a masterly letter to HMRC about my tax affairs. I have been spending ages on phone lines and everybody I have reached has been really kind and sympathetic but haven't known what to do and passed me on up the chain. The next stage is a written submission which will take 4 months to produce a result. At least I can forget about it all until May. Bah!
DH still has no news about his broken van. The insurance company seem to have lost it! Last seen on a low loader in Shropshire. Life isn't meant to be straightforward is it? We are having an eventful month doing life admin while our friends are all jetting off to sunny places.
DM is getting more muddled and frail. DB is struggling with decisions for her so I am going to have to support him more. He is doing a good job but lives further away than I do. It may be time for a live in carer.
All this life stuff is distracting me nicely from my impending annual review. It Will All be Fine...
Okay folks - go and throw out the old stollen, the stale cake and the last of the Quality Street nobody likes. It's time for veggie soups and healthy stuff! GO!!

I can’t quite bring myself to throw away the remaining Quality Street but I did stop myself buying more when I saw they were reduced to £2 in the supermarket earlier in the week. DD2 back to uni tomorrow and we are going to have a big diet reset then. Much easier when just the two of us.

I had my last zoledronic acid infusion yesterday. I am always hard to cannulate and the lovely nurse asked me if I thought I had PTSD from my treatment as I was so tense. I do think that’s overstating the case but I’m certainly glad to put that behind me. I have an oncology appointment next week for blood test results to see if I need to go back on ovarian suppression. And if not, that’s me done. Apart from the letrozole and lymphoedema appointments for the rest of my life 🤷 But it still feels like a milestone

I had a bit of a headache after the infusion and decided to take it easy and spent the rest of the afternoon on the sofa. I watched the new Seven Disls adaptation on Netflix which is objectively terrible but also quite fun. I feel ok today and was back in the pool at 7am. 10k so far this year which feels pretty good for 16th Jan. Go me! Hope you all gave happy, active weekends.

Hope DD2s return to university went well @dotty2 Hope the oncology appointment goes well and they sign you off. 10k this year swimming is very impressive, well done.

Hope your review goes fine as well @TopOfTheCliff

Also trying to reset the food here - luckily since the sugar tax I don't like most chocolate so that's not an issue but we had lots of cakes, desserts and biscuits from start December to early January. Am on day 3 of detox. 😂We kept up lots of fruit and veg so that part is fine though farm shops closes for a few weeks so we are getting weird and wonderful fruit in from Waitrose. DS is trying almost all of them including dragon fruit, passion fruit etc. I am partly getting them as this time last year I was in 30C sun for a few weeks but it was hard to get fresh fruit and veg. I was feeling rather meh with the weather, lack of daylight and global news but last 3 days I have been doing things each day and that is really helping as well as the cancer check being clear and one other issue resolving easily. I have cleaned all upstairs including DDs room, cleaned the floors downstairs, and been in the garden with DH for 4 hours today and we cleared the leaves, put a few metres of a new path down and took up old one, cleared shed gutter.

Hope everyone is having a good weekend.

Please may I join you as getting desperate.

Had lumpectomy in August and sentinel Lymph node removal (all ok) and then radiotherapy in November.

It feels like that was the easy part now compared with the side effects of tamoxifen! I should for my age be on Letrozole but they pulled me off after 1 day when they realised I had bone issues already. I’ve come to terms with being thrown back into menopause so the hot flushes and insomnia are bearable but the gastric stuff is truly awful - bloating/gas/constipation. I had to have a transvaginal ultrasound this week referred by oncologist bc of risk of cancer there and radiologist said what she could see looked ok but there was so much gas she couldn’t see my ovaries even. Has anyone had this and found a solution or does it settle down or is there a brand that’s better? I’ve had Tilomed for 2 months and then RenoChem (which is so so much worse but Tilomed wasn’t great) but pharmacist have given me Mylan to try which I’ll start tonight.

I don’t know if it’s worse bc I’m lactose intolerant (altho I can normally have a tiny bit) and every tablet contains lactose the breast cancer nurse tells me. There’s a liquid version that doesn’t which I could try but not until next month now.

Has anyone any experience of the gastric issues please? I’m burping every few minutes and it’s so embarrassing. I’m keeping v active so it’s not that.
Many thanks

Welcome @ineedlight I have been on Tamoxifen since August 2022 - I also could have been moved to letrozole etc but my oncologist thought better to stay on Tamoxifen as others are much worse for bone pain. Its a marginally lower success rate but I exercise a lot to hopefully balance that out.

I thought at first brand made a difference but oncologist was adamant it did not. When I first tried Tamoxifen I felt brand did make a difference but when I tried different brands later all where the same for me (but not lactose intolerant). I think the initial ones were as chemo effects go on for 3 months and going into menopause. I did find hot flushes only lasted a couple of months, I swam a lot which may have helped. Insomnia have just come to terms with, if really need to sleep an anti-histamine helps. I normally sleep at some point and get enough sleep mostly.

I don't have gastric issues so maybe that is lactose intolerance, would discuss with oncologist. I would be tempted to try the liquid one to rule lactose intolerance in or out. If its really unbearable then you can take a short break before then but discuss with oncologist / GP. I thought at one point I had water retention with Tamoxifen but it was weight gain for first time ever taking me to overweight and think it was after treatment finished and my son was ill I eat more than I should. Now that has all gone again and feel and look so much better for it. I try to eat a lot of fruit and veg now. Hope you can find a solution.

Thank you for your reply @MrsSPenguins - the weight I’ve gained isn’t great but a little of that could be bad eating in Dec but I definitely feel I have water retention. Was anything suggested by gp for that before they discovered it wasn’t that?

I saw oncologist and she said its often as people go into menopause there's an adjustment in calories needed and that's why people think Tamoxifen causes weight gain / water retention. She said it was menopause. Once I lost the weight again and got back to normal BMI I could see she was right for me at least. And the studies seem to show the weight gain on it is women around going into menopause age. I had to go to 1,350 calories to maintain weight and to lose go on 1,200 and cut sugar not completely but mostly though I found best way was to exercise and not eat those extra calories back. It could be if you have lactose intolerance its different but I found once I lost the 14kgs I put on when I first went on Tamoxifen I felt so much better and looked better. It was challenging to do but I read exercising 3 to 5 hours a week cuts reoccurrence risk 30% to 50% so that helped and exercise part I enjoy.

I just looked it up and it said Tamoxifen can cause fluid retention but your body often adjusts over time - that could have happened too as I did have puffiness which has gone. It recommended cutting as much salt as possible out and exercising.

Thanks again - definitely puffy especially the lower abdomen which I’ve never had before. I do strength training 3 times a week, 2 yoga and 2 Pilates and walk miles a day. But need to cut calories and add some cardio. Did you find any type of exercise more effective than others?

Maybe 3 months isn’t long enough to settle down.

That sounds like an amazing amount of exercise so its definitely not that then and well done on doing all that. I've been on Tamoxifen for 3.5 years and don't have any puffiness now but do remember puffy hands and puffy feet and that would have been after 1.3 years on it. I then lost the 14kgs I had put on since starting Tamoxifen / going into menopause over the next year and when I did that all the puffiness went too. I did swimming initially but that was just as it was my favourite sport and I don't think it will be that which helped with puffiness as I did it throughout except during chemo when it wasn't allowed.

The hot flushes etc for me went very quickly like 3 months in but it varies person to person. I thought swimming may have helped with that as its exercise and its cold. 😂I'm not sure its better than any other exercise though. I initially struggled with walking after the chemo but as I built fitness up swimming I could walk more and more but sounds like exercise is fine for you. I did find being lighter exercise was easier and also I think it may help with bone pain. My BMI is 24 now (since Oct 23) but I still have aching hips and ribs sometimes, just slightly annoying level of pain rather than painkiller level and I will try this year to lose another stone and hope it helps my hips.

@TopOfTheCliff will know far more than me as she is a former GP. I just go by trial and error and muddle through. I do a lot of gardening now and that is good exercise though does sometimes cause me strained muscles when I've carried things that are too heavy as I had DIEP reconstruction in Sept 24. The only other thing have found helped is sometimes take a Wellwoman 50 vitamin (name makes me laugh after cancer) and something in that can reduce aches and pains in me, not sure what it is. I was told to take vitamin D and calcium daily by oncologist to help bones which may well enough but never do that. I do have lots of calcium in my diet. Its vitamin D I probably should be more careful with this time of year.

I take Tamoxifen with evening meal mostly. It says for acid reflux (I never had any) take with meal and sometimes time of day can affect though you are supposed to take it same time roughly each day so either do with breakfast or with dinner.

I’ve just swapped to taking it at night to see if it helps.
Sorry to hear you’ve really been through it - I feel bad complaining about the gastric issues as can live with the other side effects at the moment. Yoga and Pilates may help you with the joint pain so may be worth a try

Its fine, mine was a few years ago now so very difficult year but over it now and enjoying life again.

My bone pain isn't that bad, more niggling but you get used to these things. I did try yoga but one was a cancer yoga class online which was so slow and one in person but my balance isn't that great. I do aqua yoga when I have a spa day and that's much better for me. Though maybe if I did more of it my balance would be better.

Trying to work on my balance but you can do that at home easily enough but start with static positions at first and near something to hold onto

I am not an expert on cancer drugs as GPs have no input into cancer treatment. My experience has been that if the hormone blocker you are taking causes issues they let you stop it for a month to see if you are any better. If so you get to try another one. I moved from anastrozole which made my joints hurt a LOT onto exemestane which only made them hurt a medium amount! Now I am off it I am waiting to see whether things improve. So far so good.
I am staying with DM91 this week while she has a new gas boiler installed. It is restful/dull which is nice.
@ineedlight you have reminded me how much I benefited from Yoga. I will find a time to restart as it really helps my balance and calmness.
Later in the week I am off to London for a couple of days, then coming back for the mammogram. No time to ruminate luckily!

Thank you @TopOfTheCliff - it’s good to know that it’s not set in stone that I’m on this drug for the duration. Things were so bad a few days ago that I unwisely mentioned to my DM who’s a long retired GP that I was tempted to come off it and she was horrified. At least I can tell her I have other options. My DM is 90 and it’s quite hard with them being this age isn’t it but good on them still living independently.
Good luck with your mammogram and have a fab few days in London. Your mat will be waiting for you when you get home.

Enjoy your time in London @TopOfTheCliff

I just did some balance exercises quickly at home - good idea @ineedlight The one where you go from sitting to upright with no hands is fine, the stand on one leg I am fine on the left leg on the floor (about 1 minute) but the right leg only last s 10 seconds. I need to work on that.

DH has his piano lesson tonight and hopefully will go via the close to us garden centre to pick up the stepping stones I ordered. I am hoping he's having tomorrow afternoon off work so we can work on the garden path as the forecast is reasonable. DS is eating an impressive amount of fruit - since Saturday he's had all of the plums, passion fruit, tangerines, kiwi and lychee. Luckily the pineapple was left so had some of that with greek yoghurt.

1 minute is seriously impressive @MrsSPenguins. Try it with your eyes shut whilst you build up on the other side.
Greek yoghurt I’ve always been able to tolerate - something about its processing does something to minimise the lactose - I’m missing it as not risking anything dairy atm altho I see Fage does a lactose free one so may try that in a few weeks. I really need to eat more calcium/protein and fibre!

Tentatively dipping my toe in ...

Thanks @ineedlight I will try with eyes closed.

Welcome @AlwaysALargeSauvignonBlanc

DH has had the afternoon off and the weather has been good here for January so we've been gardening for 3 hours and then did inside house for 45 mins. Got a new garden path almost laid now. Our silkie chickens tested it. Cleared the leaves and cleaned the outside of the chicken's cottage and run and their 2 shelters and the plant pots and the shed. Then the floors inside. Then a lovely bath and now just having dinner and a cup of tea and watching Below Deck.

Welcome @AlwaysALargeSauvignonBlanc the water’s warm!
How far along the road are you?
The weather today was shocking so we stayed indoors and I blitzed the floors. After lunch my kind DH agreed to come with me to fit the replacement 12v batteries to my boat in the pouring rain. As we arrived it dried up and the job went smoothly. One step forward again! There is always something to be fixed on boats 😂
On the way home we went back over the moor to look for the aurora but didn’t see it. DH treated me to scampi and chips. To be honest I am very happy pootling about mending things and loving my house and don’t feel any envy of my friends and DSIL who are all abroad in various sun spots sending photos of drinks by the pool.
DH pointed out how lucky I am to be able to drive over for coffee with DD and DGS and then have lunch with DM. He would love to see his DD (who lives abroad) and has lost his DPs.
We are taking folding bikes on the train tomorrow so we can cycle round London. It will be a jolly jaunt! When I get back I have a posh dinner dance to prepare for. Life is quite fun without needing any big ticket expensive treats.
Does having cancer treatment reset the baseline so that everyday life seems rather lovely in comparison? If so that is a bonus.