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.

I have also been out for a walk with a friend in the East Midlands, the snow is turning to slush very quickly though, it's quite wet out there. I feel knackered now though, I could quite easily just get back into bed!

Lovely your DD came out Dotty and good to have snow.

We moved the silkies this weekend as they have to be kept as dry as possible, no snow yet but could come at any time. This is the white one. Roast dinner and apple strudel and swimming, did 130 lengths (15m pool) and jacuzzi and sauna and a lovely toffee nut latte coffee with DH in the cafe. DD has her interview dates for Oxford as Wed and Thurs. She could also have following week if second college interview. I don't completely get the second college thing, at Cambridge it was if first rejects but at Oxford it just seems to be if second might want and first may or may not. And meeting with cahms on 5th for DS though they are the most useless organisation, so underfunded and they don't have a clue what they are doing. The lady I now chat to is lovely though and had breast cancer herself so like our chats.

@Silkiebunny When my DS went for interview at Oxford he had three. His first choice didn’t want him but the Maths department did and he was matched with Mansfield College which is tiny but has mostly state school students. He stayed on an extra day to look round and had an interview and had four lovely years there. He wouldn’t have thought to apply as he hadn’t heard of the college but it all worked out nicely. I hope your DD enjoys the experience and gets an offer she wants.

@Makemineadecafplease

I'm sorry to hear your LVEF has dropped to 37%, which is too low.

Great to hear that the oncologist was happy with the 12 doses of Herceptin you'd already had; I was told the number of treatments is not tailored to each patient but somewhat of a guess based on studies of very diverse patients (just all Her2+ of course in the case of Herceptin I imagine, but that is still a very diverse group of people with different genes, ages, stages, grades, even subtypes eg HR+ / neg etc etc).

I had a drop in LVEF on EC chemo but it recovered slightly after that (while on Herceptin and Perjeta). I have heard and read that the LVEF can recover after stopping Herceptin, so it is possible, but I can't possibly say whether it will for you of course. I hope it does.

My GLS continued to fall throughout and finished too low, clearly out of range. Because my oncologist only checks the LVEF, she considered my echo as acceptable and that is that, no more checks. I'm concerned about my GLS though and phoned the British Heart Foundation who said it is indeed too low and recommended asking my GP for further echoes.

I found the BHF helpful. Will you see a cardiologist? I won't be by the sounds of it with my oncologist only checking the LVEF and not the GLS. With 37% I think you should though, seeing as you'd get more expert help.

@Silkiebunny That is the sweetest chicken ever!

Thanks Top All online this year. Glad your DS got in and enjoyed it.

Thanks Summer The silkies are so pretty and lucky the cats have never realised they are chickens 😎

Didn't get to sleep until early this morning and slept until about 1.30pm. But at least got sleep at some point. Dh has piano lesson today and will then get a Christmas tree stand and come back with a Thai takeaway. Hopefully can put the real tree up tonight and hopefully Floof won't knock it down Already have the artificial one up and quite a few decorations and got a musical gramophone advent calendar, Floof loves that and bounces his tails to the songs. Its a bit loud but like it. Cheers up the rather bleak weather at the moment. Back on trying to lose the Tamoxifen weight and lost another kg but going 500 calories down each day is tough going. Its much better on days I swim, the other days I feel like a sloth through lack of calories. 8.5kgs to go.

Well done on the weight loss, Silkie. I weighed myself this morning (I have been putting it off as sometimes it just sends me into a spiral of doom and I end up stress eating…). I was shocked to see I’ve managed to put on half a stone so now have a whole stone to lose to get my BMI below 25 again. Bah. More positively, I fitted in a swim even though I’ve got loads of work on. I made myself prioritise it and felt better afterwards.

Thanks Dotty Well done on swimming. That's kind of what happened to me. Got through cancer treatment and at end BMI was just under 25, was about 19 until early 40s then went up in lockdown. Then after I started Tamoxifen but didn't weigh myself and first time they called me back had put on half a stone but just thought meh I will swim and then a year later weigh in and 13.5kgs up, yikes. I hadn't realised as DH kept reassuring me I wasn't putting on weight and was swimming but we were getting KFC etc after swimming when visiting DS in hospital. 8.5kgs of that to get off still but at least have made a start. It's hard going though as I need to be at 1100 calories to lose 500 a day and I feel so weak like that though swimming days are better as I can swim for 400 or 500 calories and eat more. I might switch to just swimming days but that will take over twice as long. Argh.

I think with the lumpectomy your appearance will be a lot better than mastectomy no reconstruction as they try to put things back. So you can probably wear anything after with the post surgery bra at first. I also have a lovely swollen neck on Tamoxifen just to add to the look. Sometimes swollen ankles and hands but that's not too bad. I used to look nice pre cancer treatment, hopefully one day will come back but currently looking like 2027 for that, argh. Though 2025 will be better. My hair is still only at ear length as it keeps coming in so curly and growing out rather than down. So will be another year for hair back and it's been a year already.

I've found exercising really hard as my breathing issues stop me doing much. Pre cancer (&during it ) we were avid hill walkers and it was a big hobby of ours. We live near the Peak District and would often walk 10-12 miles on a Saturday. We also used to go to the gym a couple of times a week but sadly I struggle to walk around Tesco now unless my asthma is going through a well controlled phase.

My weight has also gone up from taking steroids and Anazstrozole. I'm hoping the Exemestane is a bit better.

Cancer certainly leaves us with its legacy doesn't it.

My GP has signed and sent off my form for the cancer recovery exercise classes 😁. It is thanks to this thread that I found out that there are such things as post operative exercise classes & yoga. I had an email back from the person running the yoga classes and I'm going to be starting those after Christmas.

@MissMarplesNiece that is good news! You will meet some lovely people at the classes too. I’m glad this thread has helped. Between us we have a lot of experience to pass on.
Feet aching after walking round Railway museum and Minster this morning. Time for a rest methinks.

It does BG the whole cancer plus cancer treatment effects feel like I was half run over by a bus at times. 😎I went through a phase of asthma like symptoms and struggling to walk when normal BMI and mine got better with swimming and once I had built the swimming up I could then build the walking up. Now I am still weaker at walking but walked 6 miles the other day on a boat trip. Though when I said that to a doctor I got a strange look like I was some kind of medical mystery. 😂

That's great news on classes MissMarples Hope they help. Sometimes it takes a few but it is worth keeping on, made huge difference to me.

Glad you are having a nice time Top

Went to cafe with DH and then swimming and did 115 lengths and jacuzzi and lovely time. Real Christmas tree up though need to decorate and gramophone musical advent calendar on each day. Cahms meeting for DS.

Thanks @Summercycling I aim to see my cardiologist soon. Yes it is too low and I do blame myself a bit as when it dropped to 57% back in September I should have requested for another echo in October. At least a drop to the forties is better than thirties. I also heard it recovers after Herceptin so fingers crossed for that.

Thanks for the advice, I will speak to BHF too.

Good luck @BG2015 whatever you decide, as others have advised maybe some volunteering may help to keep the boredom off a bit or maybe you could consider some online tutoring? I wish i could stop work but sadly we need the money.

Have a good day everyone.

Feeling my workout from yesterday!
Had bloods at the chemo unit today ahead of my penultimate Zoledronic acid infusion. Feels weird going there but it's a safe place and the staff are lovely. I always end up chatting to someone who is near the beginning their treatment. Whether what I say helps, I don't know but, I remember being that person terrified of chemo, and one woman who was having her last chemo had a lovely chat with me.
I then went to my weekly volunteering at Cats Protection and at 2pm, I sat down in a pen with an elderly cat purring on my lap to think of Fay 💐

I finished my job yesterday. Will spend my first day of unemployment today at the hospital for my 3 mth post chemo check and will get the results of my liver biopsy. I’ll fit in a walk as well. From tomorrow I will do my exercises every 2nd day as I am supposed to - no more excuses!

@Remaker I’m currently doing exercise every second day. Swimming 40 lengths at the moment.

I got home afterwards yesterday and was so ridiculously tired that I had sugars in my coffee when earlier I’d been thinking about salad for dinner! Grrr!

I did supply teaching on Monday and found out the teacher I really get on well with has been punched in the face and is now off sick. There was also a massive fight between two kids and one of them was banging the walls. The week before one broke the reinforced front door to the school and we had to do an emergency evacuation to leave the school.

Plan is to put energy into finding a new job in Jan for when parents leave in early Feb. (Might be in a mainstream school if I have to but hopefully not in education.)

@BG2015 and @Silkiebunny glad I’m not the only one who feels like they’ve been run over some days. I’m now on the ibuprofen for sore joints and siatica - I’m enjoying the swimming but I always get issues with my right leg, hip and knee when I start it again. Plus have nerve issues in that foot too from chemo so my entire leg is now unhappy. If it doesn’t settle soon I will go back to the Dr.

Good news referral is in, but may take time as it’s the public system here. Also have a bone density scan booked in for the new year. Oncologist has said I can go back on estrogen hrt and see if that helps my energy levels (Cancer wasn’t hormone based).

My weight has stayed the same - which is something because now it’s hot again here we’ve been having a few ice creams! Vanilla icecream and fresh sweet strawberries! Delicious! As I get older I just want the stuff I had as a kid - prawn cocktail, beef, Black Forest gateaux for Xmas lunch! Such an eighties meal! (Black Forest might end as either a Caprese cake or a chocolate roulade depending on how I feel!)

So realistically the diet will be paused for Xmas with my parents. I’ve not seen my Dad since before the cancer, so I can’t wait to see him!

Great to hear that we are all plugging away - small steps will get us where we want to be.

In my case lighter by 20kg, with long hair, in a non-education based role, travelling to the Med with friends at 50! That’s my aim and I really hope I get there. (I lost a friend on the 24th to secondary cancer - we’d travelled Cambodia and Vietnam together. So I’m being positive for her.)

Be lucky! X

I feel very proud of you all working hard at making a better life. Well done everybody for swimming, exercising while in pain, and looking forward with optimism.
I am home from my mini break with some lovely memories. On the way home ( a day early to get back for pre op CT hip scan) the hospital called. They have introduced a new policy this week and only scan people with an op date and a pre op medical check. I therefore can’t have my scan today. The girl who rang was very junior and apologetic but FFS! I was booked in two months ago before their stupid policy came in. It is so ridiculous. I cried on the phone which upset the girl but she couldn’t go against the policy. Waiting for news now. Grrr.
Top

Oh that's completely rubbish @TopOfTheCliff , particularly when you had planned your mini break around it. I hope you can do something nice today instead. Or maybe borrow the Rage Room from the other thread and smash something?

@dotty2 thanks, it’s not a big deal really but I am trying to tee everything up to have the op in early January so I can go to my mums 90th party in early February. I think it is the lack of control over life that upsets me. I have been a very patient and obedient parcel on the conveyor belt and I hoped I could recover some agency and going private seemed to offer that. Instead I am back to being a passive recipient of disorganised care by people who don’t know what they are doing. Pained resignation is flavour of the day.
Never mind, the cancelled appointment gives me a chance to go to get the Christmas tree and some new baubles.

Glad you had a nice break Top but sorry you had to come back early for a cancelled scan. I guess its all the delays at the moment but sometimes it feels like if its not classed as urgent you need to go private now. Feel for the girl who has been given the job of phoning everyone telling them their much needed scans are cancelled. I have told them not to contact me now unless they have a date for reconstruction as they were calling me every few months to go in to tell me there were longer delays and it made me cry and that's just hard for everyone.

Yes definitely feel like half run over by a bus, think its the right side of me it ran over, the cancer side, though physically I feel as strong as I've ever felt thanks to swimming and mentally I am emotional but fairly resilient now as had to face so many fears and just carry on. When I am swimming even with the prothesis for the unreconstructed side I can sink on the right side swimming a bit, its still fine to swim but its a constant reminder. But I love the swimming so much as I may have mentioned before😂Should go again tonight. Swimming really helped my energy levels Fairywren though you build up but going a few times a week really helps with that. After swimming could do more walking again and can now walk better though walking is not as good as swimming for me, get aches and neuropathy walking. Nothing too bad but like I aged 20 years overnight walking whereas swimming don't feel older.

DD had her first Oxford interview yesterday, second today and they can get called back next week, though quite a lot don't get called back. Have the real Christmas tree up and will decorate soon. Floof loves the musical advent gramophone.

Liver biopsy showed some mild inflammation of no known cause. No fibrosis or anything of concern. And my liver function tests are actually improving on their own finally. They’ve put me on a medication to improve the flow of my bile which might speed up the improvement and I’ll have a checkup in 6 months but I’m free to live life and drink alcohol (hooray!). 3 mth post cancer check was uneventful, just some blood tests. Will have a CT scan at the 6 mth mark. Got a referral for a hysterectomy next year to eliminate the risk of gynae cancers due to my genetic syndrome.

So happy and relieved. Feel like the recovery can begin in earnest now!

@remaker - that’s wonderful news!
You’ve got some time now and nice weather to start relaxing and enjoying life!
:) x

Thanks @FairyWren7 Forecast is 41 degrees tomorrow - will be exercising at home with the aircon on full blast!

Hooray @Remaker you are officially on the Recovery project now.
My day turned weird as we were choosing our Christmas tree in driving rain. DM89 had a power cut and was without phone or heat and light or a cooker. While I was getting ready to go over there she pressed her pendant alarm and I couldn’t phone her. She forgets she has a mobile for emergencies 🙄 So I rang a neighbour to ask them to check on her and drove over. I arrived to find engineers everywhere and mum sitting serenely chatting to the.neighbour by candlelight. We ended up having a roaring log fire and a hot dinner and all is well. Power also restored! Phew

@TopOfTheCliff my mum once had a fault with her phone that was taking a few days to fix. She used the neighbour’s phone to report the fault but didn’t let anyone else know. After a couple of days of her not answering I called the police to do a welfare check as she lived a couple of hours away. Apparently she had sent me a letter to advise that the phone wasn’t working 🙄. I got her a mobile after that!