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.

Everything crossed @Penguinsa sounds v exciting! Were you as keen post interview?
@FairyWren7 enjoy the being wafty! Sounds great. Enjoy.
@TopOfTheCliff your evening sailing sounds wonderful.
@SierraSapphire another vote for home instead - they are a franchise, but far more flexible than others. And reliable.
Got review with onc tomorrow- have just had a joyful 4 week break from letrozole, so will see what he suggests next- my oncs have refused topical oestrogen but the side effects of anastrozole/ letrozole are becoming unbearable. I’ve done nearly two years now so debilitating I wonder what he will suggest. I want to do everything to minimise recurrence- but the impact for me of side effects is really tough.
Anyone any experience of exemestane?

Thanks Sandwich and Sierra I am really keen on role and island, it's just making a viable plan for all of us but my DH is keen for me to do it. It seemed to go well but I am not good at predicting and they just said asap for hearing. I was glad they were ok with waiting for after op recovery and said they are used to waiting that long and sometimes longer. Interview was originally set for Fri then moved forwards so could be someone else then. It was delving into the depths of my degree and quite technical questions and had to dust off bits of brain in there but got there.

Sandwich I have only had Tamoxifen but found that fine though prefer Relonchem brand to first one, Tamoxifen is very slightly lower success rates but less side effects though after 5 years ovarian cancer risk doubles so 5 years is often recommended. I think if that means a lot less pain and you can exercise more and enjoy life more it might be worth trying. My oncologist was anti moving me to AI as doing very well on Tamoxifen.

Thanks @Penguinsa - really helpful. So glad you felt interview went well.

@thesandwich I had a year on anastrozole back in 2021, and suffered badly with joint and muscle pain. After a month off I was switched to exemestane which I have taken since (apart from during chemotherapy in 2022 and 2023 when I had no joint pain at all). Back onto exemestane last November and initially no pain at all but recently my hands and feet are hurting again. Also I have had minor tendon injuries/tendinitis which are a recognised side effect of AIs. I also have finer hair, although there is still plenty of it.
I suppose I am 3.5 years on now from BC1, and initially it was a 5 year course but seems to have become a 10 year one now.

Today I am locked in battle with the local private skin clinic over a wart on my nose. They are driving me nuts!

😂😂😂 Absolutely!

It's my birthday this week and then I'm off away with dp and his little girl soon after. Cancer stuff can wait!

Ooh living on a remote island sounds bliss and such an adventure! I don't know if I could do it full time but would love to try it for a year.

Thanks Sandwich and Clash Happy Birthday Clash

I’ve been lurking and thinking of you all. I’m struggling as my DF has deteriorated very quickly and his blood cancer has now transformed to AML. It could be as little as two weeks or possibly a couple of months. He’s in hospital at the moment but they are hoping to get him home with hospice support in the next day or two. I have no idea if he’ll be able to cope alone. I’m alternately quite calm and reeling. And I have a holiday dilemma too. We are supposed to be going to the USA in 3 weeks for a special family holiday, planned to replace the holiday we had to cancel when I had my own diagnosis as a chance to celebrate and look forward. The dr today said wait a week and see how things are going before making a decision but I can’t see that we can go. I don’t mind for myself but my DDs are very sad about not going (though they understand) and who can blame them. They’ve had so much to cope with, with mine and DH’s health. I realise that sounds v selfish but it’s what’s preoccupying me right now. I feel so caught between them and him.

Happy birthday @ClashCityRocker
Sorry to read about your df@dotty2. So difficult. Is there anyone else who can sort out stuff for Df?

I am sorry things are so difficult with your DF Dotty and I really hope you can find a solution to the holiday so you can still go on it at some point. If you had to cancel would it be moveable or refundable? Or is there anyone else who could be there for your DF?

Oh @dotty2 I am sorry to hear that. Can the holiday be moved? Sorry you're going through this and hope your df can be kept comfortable.

Oh @dotty2 I am so sorry about your DF. I understand your dilemma too. DH and I were stuck for 14 weeks while his DF gently faded away at home. Eventually DH booked us a short trip to Italy and his DF passed away the night before we left. I think you need to decide how you would feel if you went to the USA and your DF died while you were away. It wasn’t as hard for us because DF had dementia and didn’t understand who was with him or what was happening. I expect your DF would want you all to go and have a wonderful time! Could you talk to him about it? Are there other relatives who can stay with him at all? The main thing is you want to be able to look back in a year and feel you did the right thing for everybody. That may be taking the DC on holiday.

I had another lovely evening racing on the river. There were curlews and oystercatchers and it was magical. The big spinnaker served us well and we got 3rd place.

Really sorry too @dotty2 - the holiday uncertainty is shit, we had that too with DM in June, she was okay in the end, but it just spoils getting excited even if you do actually end up going. Waiting a week seems sensible, but that's harder in some ways than knowing one way or the other.

@dotty2 So sorry to read about your DF. I hope he's being kept pain free and is surrounded by love.

I'm very sorry to hear about your DF @dotty2 and it sounds like a very difficult situation regarding the holiday. I agree it may be an idea to speak to your DF about it if possible as he may have views about what he would like to happen. I hope you are able to find a solution.

Congratulations on your interview @Penguinsa, it sounds very exciting! Let's hope they get back to you soon.

Happy birthday @ClashCityRocker

Thanks Demivolte They actually did just get back to me with a written assessment to do tomorrow.

Operation has been pushed back to 13th from 6th.

This is probably especially for @TopOfTheCliff
I’ve popped back from Stage 4 incurable, as that’s what I am, but still well in myself. Can still exercise fine, look very well etc

Have High Grade platinum resistant fallopian tube (ovarian) ovarian. Parp inhibitors didn’t work, so now on letrozole - which is used more in breast cancer (stops the body making oestrogen). This drug does seem to be working - my Ca125 dropped from around 3000 to around 2000 in the first four weeks. I hope that’s good!! Other bloods are fine, although white cells (don’t know which ones, run just below normal)Next blood test 5/8 or so

Anyway - I was reading the book by Jane McLelland ‘how to starve cancer etc’ and was wondering what @TopOfTheCliff or anyone else’s take was on it. Won’t see my oncologist for a few weeks - I imagine he’ll be neutral/ negative. Has already told me my prognosis is 1-1.5 years. I don’t know if letrozole working improves that prognosis

Loratadine is mentioned in the book, and I do remember another poster mentioning this on a thread, probably last year.

The book can be hard to follow, even when you think you have a science background. I find some of the sentences to be ambiguous. The author is clearly passionate about this approach, but also is an advocate for mainstream medicine. She’s just saying we can use other medicines to subdue cancer in other ways (mainly through its metabolic pathways), and diet/ exercise/ reducing stress etc.

So there’s no chance I’m coming off letrozole and I’m not advocating for anyone to do that. I just think Top might have a take on this, and am interested to hear.

Thanks x

My oncologist was anti any special diets and didn't feel they had value. There was a Netflix programme, how to live to 100, difficult title when you have cancer though never wanted to be 100, which was about what people in that group round the world have done differently. Might still be on there. That was largely keeping very active, either through exercise or through things like gardening, or both, anything where you move a lot each day. Diet varied but was generally heavily or all vegetarian and generally cooked from scratch. Social connections also helped, not necessarily friends but people to do things with or chat about them with and a sense of purpose, these seemed to be to motivate you. None of these obviously as you say instead of oncologist methods and best to check with them. I know there was research for breast cancer showing 3 to 5 hours exercise a week reduced reoccurrence risk by 50%, am not sure if can do anything once have cancer but if capable of that worth a try. Sorry you have this prognosis and hope you can defy the odds as long as possible.

It was me that mentioned Loratidine @RedRosesPinkLilies - I took it for the first year or so after my hysterectomy. There is peer reviewed evidence for it reducing tumour growth in certain cancers. I have used various supplements to address factors that influence cancer risk / recurrence / spread. For mine (primarily endometrial but a spot of ovarian) we know that there are links with obesity, inflammation, insulin resistance, oestrogen etc. so the terrain approach (Dr Nasha Winters is another proponent) is to look at how to reduce all of these to give your body the best chance of having a strong immune system and tolerating treatment and staying as fit as you can as long as you can. To look at evidence and interactions I use Google Scholar, the Sloan Kettering website around herbs and interactions, and Cancer Active. I've also worked with other practitioners in the past to make sense of it all as it is confusing to begin with, if you want to DM me I can send you more info. Does it make a difference? I don't know, but I have seen evidence that taking a proactive approach does improve outcomes, and being as healthy as possible is good for anyone!

I was supposed to be going to London today to visit a friend, but my car is now in the garage since I went to get tyres changed yesterday and there's a broken stud on the hub. Not sure what I'll do instead. Bit annoying as she's away next week then I start my job. We were going to go to the lido then potter around Hackney.

@SierraSapphire I’ll dm you
I'm away in Greece on holiday just now, with my family (4 young adult children and DH - lovely to be together, but enough space not to fight!)
So I will be able to look into this more when I get home. I’m currently thinking any small simple thing I can do to help myself is worth it, without going overboard
I completely agree with you @Penguinsa and I think I’m doing all these things

I do think it helps to think of cancer as something that we manage, rather than give in to. I’m well aware that I feel written off by medicine, but there are always patients who surprise Drs.

How lovely to be in Greece with the DC @RedRosesPinkLilies . I’m visiting DM and as DH says, we have fallen into the giant blancmange! Life at the pace of a 90 year old is stifling. Home later.
I haven’t read that book but will see if I can find it. My natural instinct with people who promise cures without drugs is to shout Bollocks but there may be some truth in the premise that reducing inflammation helps. If it worked then blood markers would drop and oncologists would be promoting it. Another way to look at it is whether it is harmful to follow it, as it might help. I hate the idea of people profiting from desperate Stage IV cancer patients who will try anything to survive. @SierraSapphire has thought through all this much more rigorously than I have. All things in moderation.

Have a lovely holiday Red I do take anti-histamines though to help me sleep and reduce hayfever rather than stop cancer but oncologist was fine with them. I looked up weight for breast cancer and the highest death rates were in obese and underweight in study I saw. The lowest was actually overweight but it was said to be statistically insignificant and I think recommended is normal BMI, maybe top end of normal is optimal. I went into overweight for first time ever with cancer treatment (Tamoxifen) and have since lost it and back at top end of normal BMI and it does feel a lot better, things like walking up stairs / walking are much easier. Though was quite hard going at times to get there but the veggie or veggie and fish diet helps with that. I do find since cancer treatment I get inflammation from sugar and salt which I never got before so I try and limit them, salt is easy for me but sugar harder.

It does seem a genuine book, but I completely agree with you about profiteering. This woman doesn’t seem to be doing that.
Trouble with the NHS these days is it does seem to be all about following algorithms, and maybe this thinking out of the box isn’t happening so much?
I won’t be trying anything that seems a bit too mad to me, I have enough vestiges of common sense/ ancient medical knowledge left to know that!

You seem to have a very sensible approach Red I think its also worth trying to get pain management in place or ready before its needed or immediately as needed as pain makes being active more difficult.

Had my hair coloured today.
It was another step towards the new normality even though it's still VERY short.
Think I will continue to wear my wig for now though.
CT scan on August 5th for breast markers prior to radiotherapy which should begin in the next couple of weeks for 15 days (gulp!)
Really want to get through this asap as I want to visit my son in France whilst it's still summer so fingers crossed.

I need you all to talk me down. DF continues to deteriorate very rapidly and is very tired, quite confused and quite distressed. I have cancelled several things this week to be with him. He is moving into a nursing home for end of life care tomorrow. DSis and I chose the home today and got his room ready. I am at a motorway service station half way home as tomorrow is DD’s birthday. DF when himself would definitely say I should be there for her. I can go back in Sunday. But DSis is going home too (she has theatre tickets) so he will be on his own for a day, though looked after by lots of HCPs. I feel an utter heel, so shitty and guilty. But if I stayed I would feel guilty too, because of DD. I am also a bit pissed off with DSis too because she could have cancelled her theatre trip… But then, is it fair of me to say my DD’s birthday is more important? I feel utterly wretched just now. I am contemplating doing birthday breakfast and heading back.