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.

Yes I know @ClashCityRocker ! I did say to somebody yesterday I feel like I attract more than my fair share of drama 😂. Anyway, mum's gone off to hospital in an ambulance and I'm going home!

Absolutely @ClashCityRocker When do things get easier??? Sorry you are having such a hard time @SierraSapphire Such crappy luck on the car. And solidarity on your DM situation too. I am back at DF’s having once again abandoned plans with the DDs and DH. He was very poorly last night so I dashed back in truly awful traffic earlier but he has rallied. I’m now frustrated, exhausted and oddly bored. I need to keep something in the tank. I’ve driven over 1000 miles in the last few days.

Massive congrats @Penguinsa How exciting

Thanks everyone. So sorry to hear about your Dad Dotty and your Mum Sierra

Glad you are making progress Demi

My DF was in hospital for about three or four weeks in a will he, won't he dance @dotty2. It looked like he was about to die so they pumped him full of some sort of shit and then he'd rally and he'd be alright but they were just artificially hydrating and feeding him really, he wanted to die anyway so they kind of prolonged it I think longer than was necessary. It is a weird time though. I missed his death in the end at about 1am, in retrospect it was pretty obvious he was going to go but I missed it in all the going backwards and forwards, I was cold but by the time I got there he'd gone. I was having to take DM too as she'd broken her hip a few weeks before. I was most traumatised by trying to find spare wheelchairs. The things we remember....

I'm cycling home via our new Pret where I'm having my second iced coffee of the afternoon.

@dotty2 Sorry to hear about your DF. I am going through roughly similar with DM although it doesn't seem immediately life threatening it involves multiple serious conditions and transient delirium or possible dementia. It really is overwhelmingly stressful isn't it. She slept on the floor last night and is now being taken to A&E for a scan.

@SierraSapphire I really hope your car situation gets sorted soon and you're happy with what the insurance offers. That's pretty stressful, and just before your new job!

@demivolte Good to hear things are looking up for you.

@Penguinsa Congratulations that is such fantastic and exciting news! A totally new and different chapter in your life is about to start; I hope you still post here so we can hear all about it!!!

Love to everyone else too x

Oh dear what a difficult time for so many. Sending sympathy.
@Penguinsa you star! I’ll DM you. How exciting!

I am all packed and in bed trying to wind down for sleep as we are leaving at 2am. Today’s Olympics were amazing. The MTB race was the most exciting I have ever seen.

@tothelefttotheleft no, I’m usually in Melbourne. Just on immunotherapy now. Back in the UK to see family as was away from parents during chemo.

How are you finding Canterbury?

@ClashCityRocker I was at the same event at Quex! Wasn’t it great!

@FairyWren7

It's been mixed unfortunately.

@tothelefttotheleft I think the NHS from what I can see if not joined up at all. We have a friend dealing with a possible blood cancer - he’s 78 and getting nowhere with it. I’ve looked up all the NICE/PALS info to try and help him and his wife advocate for themselves - this is his four diagnosis of cancer :(
People get worn down by it all.

I hope things improve for you and that you are able to advocate if you need to. If you want to share and get it off your chest it’s a safe and anonymous space here as I hope you know.

I’m back in the UK to try and get my Mum into a smaller warmer house by winter. No easy feat. But we can but try!

@SummerCycling Sorry to hear you are going through this too with your DM. The thing I find so tough is knowing what they need and whether you are doing the right thing. That and the endless guilt about dividing my time.

@TopOfTheCliff I’m so pleased you had an exciting day. May we all have some high points like that in the months to come. It’s what we are trying to recover for!

@dotty2 Regarding elderly parents and doing the right thing. I had this dilemma all the time with my DM. She died in February and I am still having days when I wonder if I did the right thing or tried hard enough.

I was quite upset a couple of weeks ago because mum had been waiting for a cataract op, her eyesight had deteriorated badly. She was referred to a private provider (working as part of NHS) who after a lot of shilly-shallying decided they couldn't do it at their clinic because of her difficult medical history. We even got as far as an appointment for the surgery itself and it was only when we were there for that, that they pulled the plug. It needed to be done in an NHS hospital where there would be appropriate facilities should an emergency occur & if she needed an overnight stay. We went round and round in circles. Then 2 weeks ago I got a phone call from a different private clinic where the referral had finally ended up saying they were making her an appointment. The system couldn't even tell them she'd died months ago. I got so upset, thinking of my poor mum with eyesight that stopped her doing all the things she loved, spending her last months in a twilight world because she was stuck in the stupid system which we've been sold as being efficient & better for us as patients.

Sorry for the offload -I still keep thinking about whether I should have made more fuss.

On a happier note, I watched Tom Pidcock win the mountain biking gold and decided that's something I'd like to try (not win a gold Olympic medal, lol) - mountain biking, I mean. I think places like Cannock Chase, not too far from me, have trails and bikes you can hire.

I watched the mountain biking @MissMarplesNiece with DM when she was laying on the floor on Monday, I felt like it was more of a Saturday afternoon out than an Olympic sport really, although when they started going over the rocks, I could see it was a bit more of a challenge .

Regarding helping parents, I think the thing is we would do more if we could do more, it's not that we don't want to, it's that we don't have the capacity to, it's easy to berate yourself. I could be doing more for my mum today, but I've been sitting at my computer since 6:30 am trying to finish something I should've finished on Monday, with my eye twitching out of stress, wondering at what time I can phone the insurance and whether I'm going to get anything through in enough time to get a new car for my new job, while DD is moaning at me about her student nurse placement today (I've told her politely to STFU!) I cannot possibly do more than I am already without making myself ill. I am going to have an hour of tennis coaching at lunchtime though, my pre-cancer self would've just worked myself into the ground!

Sorry to hear of the folk wrangling elderlies and the health care system- it is so, so difficult.
@SierraSapphire so glad you’re going to tennis- and @MissMarplesNiece Im sorry to hear about your mum. My dm died last year- and yes, I know I could have done more- but at what cost? Please be gentle with yourself.
Cannock chase is near me- it’s got brilliant mountain biking trails, some used in the commonwealth games. And a good coffee shop😉.

Can I ask you research whizzes about your take on the predict bc model? I’ve run my stats through the new model which now includes radiotherapy, and it seems to give me results that are significantly different from the old one? ( better)
I’m struggling on AI’s so wonder about the benefit I’d get continuing. Thanks

@thesandwich I had noticed my results are quite a bit better on the new model too, but I don't know anything about the background to it. It may be worth a discussion with your treating team, as they will know your history and give more information on benefits and risks, and may be able to say if they agree with the results from the model or not.

Sympathies to those who are having difficult times at the moment x

Thanks everyone and sorry to those having to manage the care of elderly parents.

I hadn't seen the new Predict Breast but my results are much better on that too which is encouraging. Obviously they are death rates rather than stage 4 but does give hope. I found with mine the results for Tamoxifen are identical whether you take it for 5 or 10 years on largest tumour only - my oncologist said they also add tumours together sometimes and if I do that on 15 years there's a 1% extra benefit but given the damage it can cause longer term I am very tempted to stop after 5. I just wish said stage 4 as well. Though is a bit hard with chemo as was a taxane but a shorter than normal course but even taking the one below just takes 1% off. I think my hospital does this model and they are very academic there so I would trust it - I used to use models for my work and got them to go through every detail before and also when mine was tested on the 3k test my results were identical to old model over 10 years. Though would be higher than new model. But not sure if the oncotype includes radio.

Just been trying to sort dental and medical for new job, dental has been ok as I'm private, medical is proving more complicated and I am sick of medical tests.

@dotty2 Thanks. She was admitted to hospital, thank goodness.

@thesandwich The Predict BC model truly wants me dead 😥I am attaching my 5, 10 and 15 year survival prediction. It doesn't look good.

It says I have a:

7% chance of being alive in 5 years.

2% chance of being alive in 10 years.

1% chance of being alive in 15 years.

Sort of wish I hadn't seen the model! Absolutely no point paying into my pension then.

Did you use the new version here which includes radiotherapy https://breast.v3.predict.cam/tool Might improve it a bit Summer KI-67 I was told to put unknown and no to dcis / lcis only and the highest one for chemo. Did you have a lot of lymph nodes involved? The tumour size it says just to put biggest one which not sure about as someone with multiple surely has worse odds than one.

@Penguinsa I had "multiple lymph nodes" involved all levels. Over 100mm tumour although they said there were two x 5cm tumours and a bit of DCIS, ER-negative. Grade 3. Grew at the speed of light.

But you are right, the new version is more optimistic. Thanks for pointing that out and for the link.

My 10 year result is now 14% chance of being alive. Better than 2% on the previous model.

I also had Pertuzumab for 18 cycles, not included in the model.

another chart showing the 10 year prediction for me.

@SummerCycling that is a bit sobering. I think you will be the 1 in 7 that makes it. Somebody has to be.

I am in France watching the Olympics. It’s really hot and I am watching my limbs carefully. Nothing is too swollen up. We are having a lovely time eating out in different restaurants each day. My buddy has had Hodgkin’s lymphoma and Oesophageal cancer so she understands recovery. We are YOLOing 😂

@TopOfTheCliff Thanks yes, someone has to be.

I actually recovered from something else where the recovery rate was zero. That wouldn't have been life threatening, but would have meant life-long pretty heavy going medication. Consultant still can't believe it.

Predict didn't ask for response to chemo ie pCR or not.

Enjoy the Olympics! I loved watching the women's gymnastics on TV.

@SummerCycling I am really sorry for raising the predict model. 🌺🌺
It must all be based on historic data and does not include so many other factors like diet/ weight / fitness, which have an impact.

Also love gymnastics. With that model the lymph nodes you enter is the number with cancer in not the number taken out and if it was 2 tumours making the 100mm you put the largest of the two only so like 50mm. I find that one odd but I got them to go through the model line by line with me and I had 3 things and they just enter data for largest one. I find that odd but it does say that on site though I think my smaller one had lymph node positive and they do include that with the larger one. 🤔

Hopefully we will all be in the survivors part and agree with Sandwich that other factors like exercise, and weight (avoiding obese and underweight especially) can improve odds plus new meds come out and data is always old. I try not to think about it and assume I will be lucky in the short term and don't think about the longer term much. I find that keeps me much calmer and my team reckon being optimistic helps with survival though find that quite annoying but do find it helps in being less anxious and stressed.