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.

That sounds really crap @PollyCreo-
I hate the HRT thing as well, and I especially hate it when you say you can’t have HRT because of cancer and someone who’s never had cancer but is an HRT evangelist says are you sure, you can with some cancers, maybe your doctor’s got it wrong and you should you should check. AAARGH! HRT almost certainly encouraged my cancer to spread, I think I was misprescribed it and I went along on the bandwagon and I would never take it now even if I was told I could. The benefits of it are overstated anyway. I did have really bad anxiety in perimenopause, now I get hot flushes, but they are manageable.

@dotty2 hooray for the normal lymph node! And breathe….

@PollyCreo welcome back. I’m sorry to hear of your troublesome time. There must be some relief in drawing a line and saying No More. You can get away from Cancer land and from being a patient even if you are lopsided!

I am so busy it is ridiculous. I have taken 14 bags of stuff to charity shops today, painted half the balcony, taken reluctant DH shopping for three wedding outfits and donated a cream tea for sixty ( left over from our sports event) to the local League of Friends. I also did an exercise class and was shocked when the lady next to me suddenly collapsed on the floor with a snapping noise. She had ruptured her Achilles tendon doing a step up! Life seems very fragile at the moment. Two of my cycling buddies have been knocked off their bikes by cars this week too. I am being very cautious as I do seem to be very accident prone and I can’t afford any more disasters! Ten days till DSDs wedding and our cunning plan is to hide all the surplus junk from our house in the late PILs bungalow so we can look like a Normal Family 😂 We are hosting an English Afternoon Tea here which will be fun. I’m thinking Cucumber sandwiches and maybe egg mayonnaise too. Little cakes and some scones. I need to replant the garden pots too as slugs have scoffed my petunias!
Before that DH is whisking me away to Shropshire for a mini cycle tour which is kind but I have so much to do here I am not sure how I will fit it all in when we get back. It will do me good!
Sending greetings to all x

@TopOfTheCliff I am exhausted just reading that! Have fun on your cycling tour, and remember that nothing in the house or wedding catering has to be perfect for it to be a perfect day.

Thanks for all the good wishes. I do feel a bit flat @SierraSapphire I think it’s partly because I can’t quite turn the worry off as I’ve got into the groove of worrying. It’s a habit, not a rational response. DMIL is still in hospital and not bouncing back as she usually does so we can’t plan fun distraction either. It’s a year tomorrow since my DDad died and we have recently completed on the sale of his house. It was a long old saga and I hated doing the house clearance. We also had a firm to finish off and every now and then I worry we missed something important before we left them to it. Another worry I have to let go! I hope you get your mum’s place sorted.

ps, @PollyCreo that all sounds tough and I get totally pissed off with the HRT chat too. I am also on zoladex and have just found out the 3 month version has been approved by my trust so I’m moving onto that next week. It will be great to have a bit more diary freedom though it is a bigger needle…

Ooh @dotty2 I totally relate to the FOMO - fear of missing object! I got a friend who is a book dealer in and he found a 1612 puritan prayer book and a valuable Victorian guide to printing fonts that I would have binned 😳 I hope Oxfam get the benefit of any hidden musical treasures from yesterdays stash. SIL is completely detached from the process so I am just ploughing on. TBH I am sick of the whole thing and know MIL wouldn’t want us to struggle. When I offered the cream teas to the Memory cafe FIL used to go to I got such a lovely response I am thinking we will sponsor a cream tea in the PILs memory.
I am tired today but luckily I shall be sitting in the van mostly. I shall construct a master plan for Wedding Week of what needs to be moved where by when.

Incidentally have you all grown back toenails and eyebrows? It’s twenty one months since my last dose of chemo and I still haven’t got a proper big toe nail and am missing the outer third of my eyebrows. I guess they’ve given up!

No eyebrows to speak of here and rubbish nails which are ridged and fragile. I also assume it’s not going to get better for me, more than 2 years after chemo. But I am holding out a sliver of hope I might see some improvement having stopped abemaciclib which can cause hair and nail issues.

I have normal eyebrows but never really lost much of them so back to before in a couple of months. Nails didn't lose any either (did ice on them) and normal but did have a white line in both big toe nails, mine are strong but I had very strong nails to start with. My hair is only just back as it was after 3 years finally am rid of chemo curls and back to length though had long hair and I hated chemo curls so I cut them out which added to time to get length back. I didn't take abemaciclib, just Tamoxifen.

Sorry about the reconstruction stress @PollyCreo

Builders in today, the son, and he's doing kitchen ceiling and living room. Cat is fascinated.

@TopOfTheCliff that all sounds exhausting and exhilarating! exciting times for you all.

@dotty2 another hurrah for a normal node result here. Also a sharing of how bloody awful these anniversaries are - I've just had the first anniversary of dad dying, along with the timeline of my first failed surgery. It's not surprising how close the emotion is to the surface and we just have to look after ourselves and each other.

My eyebrows are only normal as I had the microbladed on pre-chemo. I love them and will keep up with the 12-18 month topups. I've been back to the hairdresser this morning. Pre-chemo I had long, highlighted hair which I had cut short for the little princess trust. I've let all the colour grow out (no choice due to guidance on not colouring during chemo). I now have a short Emma Thompson / Kristen Scott-Thomas do which works for me. I look and feel 20 years older but am here to work through it all.

Bit of an upset as I had a review with the oncology team. Letrozole is giving me so much pain so they've swapped me to anastrozole to see how that goes. I was originally down for 5 years on letrozole but in a letter I received yesterday, they had changed that for 10 years. I questioned this in a chat with my onco nurse today and she said that often they might review at 5 years and extend for 2 - 5 years. Psychologically, 5 years was more manageable. Also, I had considered myself lower risk (and been told this by a medic) but the onco nurse put my stats through whatever calculator they use at the cancer centre and came up with intermediate risk of recurrence. Something else to get my head round when I had previously been in a decent head-space.

I'm going to take myself off to the gym to start to build up these knackered muscles - the only way is forward.

Everything is back to normal for me after chemo, I’m nearly 3 years on, but everything came back pretty quickly, especially the chin hairs 😭. I also iced my feet! I’m not on anything though, so that might make a difference. Actually thinking about it, it’s mainly cognitive stuff that has endured, I don’t seem to be able to take a bigger picture view of day-to-day things, a simple example is I’ll go into the supermarket for something specific and it won’t occur to me to think about what else I might need and get it at the same time, or I read about something at work and it doesn’t occur to me that actually it might relate to what I’m doing. I can focus on stuff though, so all my mental powers haven’t left me! Another example is it’s the anniversary of my mum’s death in a couple of weeks, and I’d planned to take the day off and do something, but then I arranged for a new staff member to start the day before without thinking it through so now I can’t really take the day off. Though that might just be menopause rather than chemo, who knows?

Sympathies to all of you who lost DPs or ILs while also coping with this cancer shit.

@dotty2 @PollyCreo I know what you mean about the HRT chat - I’m mid 40s so all my friends/school mums etc are in the throws of perimenopause - when I get asked about where I am with my cancer treatment and I explain about hormone therapy and say “so its early menopause for me!” most people then suggest HRT - I have to explain that my estrogen was literally trying to kill me which means I can’t take HRT….. (except for the vaginal kind which I don’t mention because who really wants to know you’ve had a dry hooha….its amazing btw, total game changer, my GP prescribed it without hesitation, oncologist was supportive too!)

@dancingwhilstfacingthemusic I sympathise with your experience with hormone therapy. The hormone therapy was something that wasn’t really mentioned to me until after my MX, and post chemo. It was sort of thrown at me “oh and here’s a prescription for tamoxifen”.

I hated tamoxifen, (migraines, anxiety etc) so I’ve switched to Zoladex and exemestane which has put me into early menopause but it’s ok. I can probably do this for 5 years…. And I’ve come to terms with the idea it might be ten years but the same as you, they seem to use 5 and 10 years interchangeably which is not very helpful. I’m going to ask the oncologist at my next (and last hopefully) appointment what the plan going forward would be for hormone therapy - I’ve realised I don’t like surprises, I need to get used to the idea they might want to change my medication in a few years time, so I can prepare myself emotionally.

I also find they use 5 or 10 years quite interchangeably re hormone tablets. When I queried was told ideally its 10 but 5 is OK. There's been a new Predict Breast model come out since I was given the original one and the impact of hormone tablets has gone down now its added in radiotherapy. So for me an extra 5 years of tablets now only adds 0.5% although that is 1 in 200 people will have their life saved still and the other will die between 5 and 10 years. I haven't had too bad effects from Tamoxifen, don't like taking it but its one pill a day, so a few minutes of a bad taste. I do worry about the effects on bones, teeth etc as am getting more aches though the scans weren't that bad but I am early 50s and ideally need my bones for a lot longer. Its a balance between quality and quantity of life too. I also worry about increased ovarian cancer risk after 5 years especially as the NHS don't do the checks for this they are supposed to unless you are symptomatic. I am veering towards stopping at 5 years but keeping up exercise / normal BMI / fruit and veg but I also deal with it with not thinking too far ahead.

Very busy day yesterday. Builder started at 7.30am and was great - replastered the kitchen ceiling and the living room wall area we needed replastered so both are done and we can repaint once fully dry from Sunday. I started painting the bathroom wall and then after DH and I finished painting DSs garden shed so it looks more like a summerhouse in pale blue and white. We have just done the front of it but the rest isn't visible, I painted 2 chicken dust baths though the silkies use the garden so I may turn them into planters for fruit / veg and then did some gardening. DD then came home after a long day doing punting work on the river. DS is climbing trees and running around the garden a lot and was listening to how to become a YouTube millionaire whilst we were painting. Bathroom floor being done on Monday and Tuesday.

@dancingwhilstfacingthemusic I also looked like I aged 20 years almost overnight after chemo - had no lines before and suddenly got them and swelled face from steroids. After reading some MNs threads that everyone looks their age at all times I decided to check after seeing someone mention AI could estimate your age and AI added 18 years. 😂The good news is since then AI has my age going down and I am now only 9 years older and under my real age. The round face did go after steroids stopped. The face / neck has got much better with losing weight I put on with cancer treatment. It was hard work to lose that weight and get fitter but has been well worth it and feel and look so much better now. I now look more or less same as before with a few lines. I wonder if chemo destroyed collagen though it might be menopause as chemo put me in that and I've seen posts saying about people going into menopause and ageing massively overnight. That made me feel a bit better about it, that it may not be a cancer thing though chemo put me in menopause but I was close in age anyway.

Tried to do more painting today using a roller and tray. Stopped for a while leaving roller and tray out, came back to find cat (8kgs Maine Coon boy) had stuck his paw in the paint, licked it and then licked the paint in rollertray and been sick in rollertray. Called vets and he is fine as its emulsion paint. Chickens are just off to their holiday home.

Thanks for the reassurance on the 5 and 10 year stuff. Glad to hear that is seems to be an nhs thing rather than “your risk has doubled”.

I really hear you re the HRT. Very triggering - my consultant told me it was feeding my cancer so when I hear people being gung ho about it, it sends a cold shiver.

I hope your cat is recovered @MsPengiuns Sounds like it’s out of the system. Love the hens going off to their sitter. We had a neighbour come over to look after our girls when we went away. - lost the last one (hen not neighbour) last year, the garden is quiet and not quite so full of poo (again, hen not neighbour).

@Littlecaf noone really lays it out quite how much chemo and these drugs will do. I guess there’s enough anxiety in the cancer treatment.

@SierraSapphire I think my chin hairs hung in there all the way! I also iced my hands and feet 16 times (along with my head), but have some neuropathy on the soles of my feet.

Just got home at 1am after cycling 70 miles round Shropshire with DH. We had such a fun day! The highlight was a coffee and bun at the Much Wenlock Shell station 😂 He knows how to treat me xx I am unwinding now before sleeping as I am wide awake.
I’ve done 4.5 years of anastrozole/exemestane now. The Predict update doesn’t give me any more benefit from 10 years treatment on ten year survival but an extra 1.6 percent after 15 years. I don’t think I will carry on with it after Christmas.
I shall look up the AI age thingy @MsPengiuns out of vanity. I don’t look my age! I have lost all the grey hairs with chemo, and the Capecitabine gave me a chemical peel. I would love it to flatter me 😎

Cat is fine thanks @dancingwhilstfacingthemusic Yes the HRT is the solution to everything and fine for everyone on here gets frustrating.

Glad you had a fun day @TopOfTheCliff I only found out about the AI things on Mumsnet though some people reckon they keep the photos but I doubt there's a massive market for middle aged post cancer women photos so not concerned.

Been to Hyde Hall flower show and had cream tea there and bought a hydrangea and 3 allium as the silkies dug up the other ones and DH loves them and walked around the gardens. Then went to Toby carvery and had a roast dinner and bought takeaway ones back for the children. We currently have lots of projects on the go and will see what can get done tomorrow - the garden shed paint has dried really well and happy with how it looks and how the chicken dust baths look painted. Mon and Tues is the bathroom floor being redone and no upstairs bathroom for 2 days which is a bit challenging as other bathroom is DSs. But floor needs doing so will find a way to make it work. We are painting bathroom, living room where plastered, kitchen were plastered, re-oiling worktops, putting blinds back, garden to plant plants, painting living room radiator. Will be great when all done plus I need to finish listed buildings consent thing. We have DSs autism keyworker round on Monday mid this. DD has been doing her punting job all day.

Morning all! I just read this article in The Times, share token included. I found it fascinating and also reassuring about the different feelings and approaches that we all take to having had cancer. I think I’m more like Decca than Victoria.

https://www.thetimes.com/article/bdb53368-f7ca-4360-985a-8753b41a79fb?shareToken=5f423055601427cd5c30a14984a19055

That was a very good read, @SierraSapphire thank you.

@SierraSapphire thanks, two very different experiences, thanks!

@SierraSapphire really interesting read.

this week either the meds have kicked in with their side effects (letrozole and abemaciclib) or the antibiotics I was on have had an effect on my tummy.

poor tummy is not happy.

plus side. New tattoo.

Thanks for article @SierraSapphire I am definitely more like Decca.

Sorry about side effects @ememem84

Builders pushed back to tomorrow but that worked out fine and we have painted the bathroom ourselves today and yesterday and had DSs keyworker in. DH has got tyres sorted and just collecting a Sainsburys order. DD been at work. Builders due in tomorrow but can do the bathroom sub-floor in a day apparently - hope so. Tilers will then come later but they will put the toilet, sink and bath back I am assured tomorrow late afternoon. Not sure if they also have to be taken out for tiling, hoping not.

That's an interesting article, @SierraSapphire , thanks for sharing. I'm definitely more like Decca. I'm working on coming to terms with the very real possibility that my life will be shorter. Trying to do All The Things (while still having an afternoon nap, and as long as I'm home by 9 pm 😂)

I think I’m more like Decca too.

Great ink, @ememem84 I’d like cherry blossom on/ around my picc scar - which is still ruddy sore. There’s a lump of skin under it still healing that I’m massaging daily. Sorry to hear of side effects, I hope it’s just as things settle.

@BatshitCrazyWoman naps are essential now. As is going for it lifewise. Sigh.

Apparently I should be able to access Ribocyclib as well as anastrozole once NICE approve this for people who are node negative.

I think the end of the storm is blowing through outside, at least.

@dancingwhilstfacingthemusic oooh I saw a lady on Instagram the other day who had essentially a whole cherry tree on her body. The blossoms went all across her chest and up to her port scar placement. It looked beautiful.

That sounds gorgeous @ememem84