The Great Cancer Recovery part 3

[TopOfTheCliff]

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.

@AndTheyWent I don't tell people about my cancer (ampullary, not CC). I usually say "I had major abdominal surgery" without going into detail. I don't want to have to start explaining where the Ampulla of Vater is. But also I wonder if I'm in a sort of denial that I had cancer.

I don't tell people either, I just refer to "health issues" or sometimes that I had a hysterectomy. I don't want cancer to be the first thing that people think about me. And I mostly don't want to talk about it. The only time I'd mention it is if I came across somebody else who'd had cancer.

@AndTheyWent I'm cervical too, and don't go into details, leads to Too Many Questions. Glad to hear you're 15 years NED though. I'm 12 months from treatment and just had a check up scan so of course I'm hyper aware of every twinge everywhere at the minute!

Hi @Acinonyx2 Nice to meet you!

Interesting to hear you lost so much weight on Kadcyla. Presumably you were HER2 positive? Was that also hormone positive or were you negative?

Mine was HER2+++ ER-0 and PR-0. Grade 3 stage 3. Original tumour over 10cm (over 100mm) with multiple cancerous lymph nodes.

But I stayed on Phesgo for a year instead of switching to Kadcyla - despite having DCIS in histopathology (oncologist told me DCIS "is not cancer"). I really hope they were right not putting me on Kadcyla; no idea if other oncologists would have done. Did you have residual invasive cancer after neoadjuvant chemo and MABs?

I also gained weight. I am about 11-12 kg heavier now than when I started cancer treatment. I need to shift around 5kg of that I think to get into the normal BMI range, but I enjoy food and lack discipline with food these days. I am exercising quite well. Good luck with your weight loss.

@Penguinsa Great news about your surgery! Fingers crossed it goes ahead now as planned.

Hello and best wishes to everyone else.

@AndTheyWent welcome to the thread, it’s lovely to hear from somebody 15 years on from diagnosis. It sounds like you have been through the mill though. You are in our infamous Low Odds Bin. “That’s incredibly rare, we never see that!” We have all heard it!
I like the way you and DH worked together to improve your lives after cancer. I already blew my life up at 50 when my first marriage ended, so my life now is pretty much how I want it to be. But DH has just lost his parents so we are having a rethink. It makes you consider how to approach old age once you are the oldest member of the family!

@SummerCycling sounds like we had twin cancers! Yes, Her2 pos but hormone neg. Yes residual cancer so went on Kadcyla - I was her first patient to do that at stage 3 rather than 4 as a new protocol. But I only did 5 of 14 rounds as I reacted badly to it (hence the months of steroids). Discussed switching to Phesgo but I really needed to just get off everything and recover at that point. People assume I got the all clear but of course never did - about half of all cancer patients don't and you just sort of wander off and cross your fingers. Honestly I'm surprised I'm still here to complain about it. Now I'm 2 years out I'm starting to think about maybe getting old.

Similar - about 2 lb would get me in range but 10 lb and I'd be happy. Food and drink are my daily bits of joy and it is so hard to resist. I know I absolutely should not drink so much. I think that every morning - then 6 o'clock comes round....

Dh and I are early 60s and will retire in a few years and we're not sure about moving somewhere. We're in a village near a city and in theory we'd love to go more rural (I'd love to be by the sea). He has a laundry list of health issues though and between us I'm reluctant to move away from the top hospital we happen to have 20 min down the road. Thinking we'd like to spend part of the year overseas when dcat snuffs it - but I'm not sure we can live without cats so that might not work out.

Thanks Summer

Hope your event went well Top

I am now back to pre cancer normal BMI but right at top of it and more want to be in lower half but very happy with that. Since Borneo I've been much better on exercising than dieting and have more maintained weight than lost it, end of covid has not helped. I have done 4 hours gardening with DH tonight and we are both worn out but now both green bins are full, we cleared lots of garden and got 8 new plants planted and looks much better. Garden also looks better now old items collected yesterday and the old bench, table, 2 chairs and 8 sacks of rubbish / garden cuttings are gone. Every time you go in you spot more things though. It'll be perfect by the end of summer 😂I was hoping to finish and have people round but op on 6 August and DH away 8 days before then makes that challenging but never mind always next year. Or maybe all the sun has been delayed to November this year. Certainly had the year's rain already.

DD has done her punting job and out with friends. Tomorrow have a long form to finish for DS and get off, may send recorded on Monday. 24 pages plus additional evidence. Yikes. But this was the last gardening we had to do pre DH going away and both green bins full and so next gardening will be when DH is back from France.

Welcome and well done on 15 year NED Andtheywent

Oooh my feet ache! I had about 100 guests in the end and all went well. The jazz band was very mellow. and the weather lovely. The only negative was the caterers were very slow serving so they hadn't fed everybody by the time the band wound up. Luckily they left some music playing on the PA system. I made a decent profit and served my Club well. DH worked really. hard on the bar all evening! Next week we switch roles and he organises his event while I serve cream teas to 150 finishers. We make a good team!
I do find volunteering gives me satisfaction and purpose but it also stops me going away when the weather is nice. It is a mixed blessing. I am never bored though. Really I should be gardening like @Penguinsa but when?

Penguinisa and Tops you both sound as if you had an energetic and fulfilling day yesterday. I'm afraid I lay on the sofa all day reading. I must put some time and energy to my garden next week.

@Acinonyx2 Hello twin! I'm younger than you but other than that we share a lot of the same things don't we.

I read that our subtype of breast cancer is hugely over-represented in the number of patients diagnosed stage IV at first diagnosis of cancer. That despite only about 4% of breast cancers being our subtype. (I realise more than that are Her2+ but I mean HER2+ Hormone Negative).

Mine grew to enormous proportions between mammograms. I detected it myself and struggled to get an appointment. I was on a 2WW referral but was made to wait for weeks.

Breast cancer is so incredibly heterogenous and it's extremely frustrating how everything always focusses on oestrogen positive cancer.

Anyway, thank goodness we were stage 3 and not 4 so at least we were given the full treatment.

Sorry to hear you suffered so badly on Kadcyla. I suffered terribly on chemo too, and stopped it pretty early, so I do sympathise with the horrors of chemo and of having to make a decision like stopping it early bearing in mind it's possibly potentially a life / death decision. I was advised by a medical professional that the number of cycles prescribed isn't personalised but is still guesswork based on studies, but sort of arbitrary.

I haven't been given the all clear either or in fact been told anything. My oncologist said I'd had a pathological complete response to neoadjuvant chemo and MABs, but the Open Access nurse said I'd had a good partial response. I asked if I was therefore in remission, cancer free or what. They all just said "no". But I'm not on any treatment now because there is none available for our subtype ongoing, so what is my cancer status? I suppose it's "wait and see; keep your fingers crossed".

Where overseas would you like to spend some of each year? I used to think I'd like to live somewhere warm and sunny for 3-4 months each winter. Pity the Canaries are now so overwhelmed with tourists, that could have been a good location; easy with it being in the EU. I also really love the sea. But we are at least near a beautiful river.

That sounds lovely Top Hopefully you and MissMarples will find some time to get some gardening in as well though can be quite tricky with the fine weather we are having. I have found it very good exercise and we have both got stronger with it, the garden did have a very keen gardener pre us who then got elderly (mid 90s) and has been a bit of a wildlife jungle to work through hence the long time and we are needing to dig up some very big things and get rid of lots of ivy. Its so nice to see it getting to be really nice again, still more to do but can see the end in sight now. Filled in the 24 page form for DS and all additions today so can post tomorrow, just had a Sunday roast - quite worn out after yesterday. DD was out for over 24 hours solid doing things including 5 hours sport, an impressive amount of energy. Got hospital on 17th re operation, not sure if its pre op but could well be. I am still a bit covidy but hopefully if they test would be clear, I never tested but lost smell and taste and very dizzy, lost appetite then got massive appetite. Just feel a bit weak and reduced taste still, it seemed to have gone but then seemed to come back though did have neighbours party after I thought it had gone and someone there said they just had it after we had all had communal food plates so maybe we swapped bugs. New garden table and chairs arriving on 18th.

Hello all, just found the new thread.

I’m back in the UK and I seem to have brought the sunshine back to Margate with me. Lovely to be home.

For those new to the thread I had Brac 1 gene, lots of chemo, total bilateral surgery awaiting reconstruction. The chemo gave me dvts and pe. Very traumatic. Radiotherapy. Now got about another 4 months of Olaparib immunotherapy drug. Consultants are all pleased, slight inflammation markers coming back in blood tests as I seem to have a sinus infection to shift.

Did a stint as head of department, teaching exam classes in a private school in Melbourne but decided that the workload was too much and too much stress so I’ve left. I’d be back at work today if I hadn’t resigned… it was giving me very bad anxiety. I got through cancer without Valium but not a term back at work!

I was very naughty today and sat in the sun here with my Mum and chatted and drank a bit too much cider after a 24 hour flight! Today I will rest hopefully.

Hello to all and any newbies :)

That's so lovely to be back in the UK with your Mum Fairywren Hope you have a great time and enjoy the sun whilst it lasts.

How lovely @FairyWren7, I hope you have a relaxing time.

Good luck for Wednesday's appointment @Penguinsa

Hi @Acinonyx2, I'm another HER2 positive/hormone negative patient, diagnosed last year after finding a lump. I'm coming towards the end of treatment now with a few more rounds of phesgo to go. I haven't been told anything about status, most people assume I'm cured but I assume in remission is more accurate. I also can't really get a straight answer about recurrence risk but I suppose that depends on whether I complete the full course of treatment.

Thanks Demivolte

It's hard to know reoccurrence risk, there's Predict Breast but that is who is alive and who is dead rather than who has reoccurrence when I asked them. I don't think they ever give the all clear either as they don't know whether cells not visible on scans have gone around body and people can get reoccurrence 20 years down the line. I had 3 areas of cancer which make it harder to use Predict Breast, it says just use the largest but surely multiple would have worse odds than one. When I put that to oncologist she said sometimes they add them together and sometimes they don't. She said they don't really know who will get reoccurrence and said to ignore the fact my report said high risk for reoccurrence as she had a feeling I would be lucky. Though I then became very laid back about follow up and next time it was like why have you not done checks you could have reoccurrence so she obviously didn't feel so lucky that time. With lobular it's normally 5 to 10 years it reoccurs at. As I had 3 I am expecting reoccurrence but last scan showed NED but they used the same scans which missed two out of three before. But I want to believe I am NED so I believe it. I try not to think about it and just be la la la and live in the moment and do things now. I am not that bothered about surviving for me as done most of what I wanted to, it's for the kids, mainly DS as DD is super capable but DS is definitely not and I want him back on track before I die. Just signing him for universal credit but whilst that helps now it terrified me with the talk of it, he's so vulnerable on it if I die. DH is great with things like cooking but not great with anything else re DS. They would just kind of grunt at each other, think they maybe both asd, love my boys but 🤔Filled in the 24 page form for it plus additions and just sending back recorded.
Someone said after 5 years you are classed as all clear though that seems pointless as you don't suddenly become all clear on year 5, it's still the same and they don't know. Lovely lady on here got it back 19 years to the day as pancreatic after breast. In Germany so excellent healthcare though at least that gave her time to see her kids grow up. She also had SN kids though and a very academic but not very practical husband.

I try to focus on enjoying life now though and not think about it.

And DH went to post office saying he was going to post the letter for DS and sends me a message saying you haven't memorised where I am supposed to send this letter to as I have no idea. 😂Sent him the address but then he came back still not having sent it. Went again with details and sent it now.

@Penguinsa that sounds an exhausting process just to get a letter posted! I think in hindsight both my genius first XH and my current lovely DH are neurodiverse as neither are very conventional but I didn’t make any allowances for XH as I thought he was just being unkind and selfish. Nowadays perhaps I am more tolerant.

Im glad to hear you have reached family @FairyWren7 it will do you good! Have a lovely time over here xx

I spent yesterday with a good friend cycling and chatting and stayed with her to watch the football. She had a bad time with her XH who has destroyed all her stuff after she left to go to a refuge. I am very grateful for my life!
I don’t try to guess the future with recurrence. What will be will be. I’m busy planning our Canada trip with possible whale watching and sea plane rides. It’s getting closer now!

I am the same Top with reoccurrence, try not to think about it and what will be will be and just try to live life to the full now. Your holiday in Canada sounds wonderful. I want to put cancer behind me. Its probably delusional but prefer being delusional and happy than anxious all the time. Talking of delusional things I applied for a great job on a remote island not expecting to hear back but just heard today have an interview end of the month. DH is quite enthusiastic which I didn't expect, he's quite keen to retire and also works remotely already so maybe could carry on just very, very remotely. Need my op first and recovery. Very much doubt I will get it but we will see.

A remote island sounds good, @Penguinsa , but I've been put off going anywhere remote after the experience of looking after my elderly parents and my own surgery & treatment. My parents retired to a remote part of Wales and it became very tough for them when they got older and needed more medical care - they were miles from a decent hospital and it was difficult to visit them to help them out. My own surgery could only be carried out in a few specialised centres around the country. Fortunately my city hospital was one, otherwise it would have meant DH and visitors travelling miles to see me. It's made me cautious about where I'd live.

That sounds exciting @Penguinsa and if we are going to put cancer behind us and live life to the full I think we have to take some risks. My friend in Shetland has had awful medical disasters but she gets flown down to Aberdeen for amazing treatment. Friends on Jersey go to Southampton. Most islands have an arrangement somewhere!
The advice I give my DC is that no decision has to be binding forever. You could say “We will try this life for a year/ two years then evaluate whether it works for us” rather than worrying about what would happen ten years down the line. I have no idea whether my DD will stay in Africa or my DSD will stay in Canada but they are loving it right now! That’s all that matters.
How would your DS cope with remote living? I imagine a small safe rural community might suit him well. What an exciting prospect!
I’ve just discovered one of my DFs first cousins in Ireland has died. He had no contact with them so I am going to post a small olive branch and see if they want to know us! Off to get a suitable stamp now.

Sorry to hear of the death Top.

Thanks Top and MissMarples. The healthcare I think if there’s any reoccurrence you have to return to UK but I think that is doable, no sign of cancer on last scan and I think could get back in UK system quickly so am OK with that. Can get mammograms over there. Re DS I think it would do him good and he’s being offered nothing here and loves remote places but whether he would leave house remains to be seen. DH and I have been discussing it and thought maybe I could go for first six months alone then they join me if everything OK. We will see though and may well not get offered it. DD has come round to it being a good thing from 101 reasons I shouldn't do it. Now she’s saying she’s coming for a year too after university. Financially the pay is good but it would means running 2 houses and losing uk benefits so there may not be too much in it initially but wonderful and unique opportunity. It seems like something out of the 1950s and is very remote. I have done very similar work before and love the work. Also have the op and recovery first. Just been to rhs Wisley. Tomorrow is pre op.

Wow @Penguinsa - that sounds like a real change! I used to think about doing something like that, but never got round to it.

Good you've made it back to the UK @FairyWren7 - I went to Margate last year when staying in Whitstable and I really liked it, hope you enjoy your time here.

I'm taking DD's stuff back to Manchester today - DD is also driving separately, she has more than one car worth of stuff! She's moving into her new house and on placement for four weeks before she finishes her nurse associate course and will then be back here for a month before going back up to Manchester to work for a few months until she starts her nursing top up. Shame we finally get some nice weather and I will spend it walking up and down two flights of stairs! I'm gonna stay over tonight though and have a wander around Manchester tomorrow before I come back down for tennis in the evening. Still no idea when I'm starting my new job.

Thanks Sierra Have a nice time in Manchester.

Just had pre op took about 2 hours and fine but shame lovely sunny day.

Thanks @Penguinsa this is a relative I think I met once in 1972 so the grief is more for his own close family who seem very warm and supportive. The obituaries all call him a gentleman and “one of the good ones” so I am a bit sad my DF lost touch. DH and I are rapidly becoming the oldest generation in our family.
Glad your pre- op is done without a hitch.

Today I cashed in a birthday treat from a couple of years ago that had to be postponed, and a christmas spa voucher. DD and I had a fab day out on a 4 wheel drive obstacle course then had lunch and a massage and spa session. She shared some medical stuff she is going through and we had a lovely bonding time. I think officially she can stop worrying about me and I will mother her a bit now. Nice to be back on track! Im exhausted though so early bed for me.

Hi all, just found the new thread. Thanks for starting it @TopOfTheCliff. Nice to see the same and some new (to me anyway) names.
Just back from a nice break. Have decided to go for LVA surgery for lymphoedema for better or worse at the end of the month. Quite ambivalent about it. Have found this thread incredibly useful as I have struggled with all the uncertainty surrounding bc, its treatment and its side effects, not to mention constant scares, etc.