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.

@demivolte

Thanks.

Ki-67 of 70 is high isn't it, although AFAIK all HER2+++ Hormone negative cancers are very aggressive and high grade, minimum 2 mostly 3. Unfortunately, I don't know my Ki-67 it would have been interesting to know; they only told me that it was Grade 3.

My tumour was enormous (T3): over 10cm (cm not mm!) but at least not T4 because it wasn't attached to my muscle, bone or skin. So many cancerous lymph nodes they couldn't count, so N3 in the staging system.

When did you finish your Phesgo?

@Littlecaf

That's harsh about the performance related pay. I'm sorry to hear that, it must feel really unfair. They would ideally have something in place to compensate for time off for serious illness, an in-between amount of pay to at least acknowledge the reason for not meeting the requirements.

My job doesn't have performance related pay, but there are currently huge cutbacks in the sector... loads of colleagues losing their jobs. Our dept is ok for now but greatly reduced budget. My boss is really loyal to us on the team and was amazing to me throughout my cancer treatment. I'm happy to hear you also have a lovely boss.

@TopOfTheCliff

Counting from surgery actually sounds like the most logical time point doesn't it: the moment IT / THEY / the hopefully-killed-off remnants of IT / THEM was / were removed.

Counting from the date of diagnosis makes no sense at all to me because it's (although relevant to treatment and prognosis etc) sort of a random date that will vary hugely seeing as some cancers are caught much earlier / later and they all vary hugely in speed of growth.

@TopOfTheCliff

Counting from surgery actually sounds like the most logical time point doesn't it: the moment IT / THEY / the hopefully-killed-off remnants of IT / THEM was / were removed.

Counting from the date of diagnosis makes no sense at all to me because it's (although relevant to treatment and prognosis etc) sort of a random date that will vary hugely seeing as some cancers are caught much earlier / later and they all vary hugely in speed of growth.

The reason I had my last Phesgo in mind as the day to start counting was that it was hopefully suppressing the HER2 from continuing its evil ways. Then I started thinking I should start counting from last Phesgo + 6 months because it takes 6 months to leave the body after the 18 cycles.

Cancer still takes up a lot of space in my mind and time in my thoughts both day and night. I found the treatment horrific and I am utterly terrified of stage IV. I worry about how that and my death would affect my loved ones. It's a fear I imagine a lot of cancer patients share.

But I am enjoying doing sports again, and life is good in so many ways.

@MrsPengiuins

I love reading your sort of journal styled posts about your garden, house, day trips, family etc

I have reported my doubled up posts and asked Mumsnet to delete them.

Thanks @SummerCycling I never knew when to count years after cancer from, I did take it from first diagnosis but that doesn't seem right as you aren't cancer free then. Emotionally it would be at the end of radio when just had Tamoxifen and chemo and surgeries were over apart from cosmetic part of DIEP. But when you are first NED makes sense though they don't tend to tell you unless you ask. For me that was after first surgery as second surgery did not find more cancer and chemo / radio /Tamoxifen were preventative and DIEP cosmetic. So end of Dec 21. I haven't had a mammo since June 24 (clear) but have had all bones checked this year (clear) and mammo didn't pick up 2 of the 3 first cancers. I think you are supposed to wait a year after DIEP before mammo that though am just at that now. I am seeing surgeon re DIEP2 waiting list in mid October not sure if will have that or not as pretty good already.

Wild weather here today. Fruit and veg box arrived yesterday and had corn on the cob from it yesterday and strawberries and today we had roast dinner a day early with the cabbage, chinese cauliflower and potatoes. It's all been lovely and DS loves the fruit. Bulbs arrived today so can plant them next week. Tomorrow moving DDs stuff from one house in Oxford to her college in Oxford and she starts 2nd year. Just collecting some orders today, have new lights for the bathroom and corridor and some decorations and lights for DSs garden shed and a memory foam pillow and some silk pillowcases for DS as he snaffled DDs pink silk ones.

@SummerCycling it is very tiring letting cancer thoughts back into your head. Can you save them up for a once a day wallow perhaps? I find they don’t intrude very often but then, like today when I am sitting with a heat pad on my aching knee, I suddenly think “oh what if this isn’t a torn cartilage but a bony metastasis?” and whoosh! There I am planning my demise and deciding whether I could really face a lifelong regime of chemo/ immunotherapy. I found it so very hard to go back and do it all a second time that the thought of more treatment just overwhelms me.
I went and looked up the solar dandelions. @MrsPengiuins you might be starting a trend!

@SummerCycling my tumour was large too - 8cm. I am very jealous of those to say they had a large tumour and then say it’s 15mm or something. I wish also that I just had a small patch of DCIS but it was all the way through the tissue. I have no idea how I missed an 8cm lump in my boob - but I did. Luckily it was only in 1 lymph node but the oncologist did say it didn’t really matter how big it was if the response to chemo & Phesgo was good - it was clear in the pathology report post mammogram. I think that’s why they don’t tend to make much of the stage anymore - you can get a stage 3 that responds well to treatment and never returns or a stage 1 that just progresses. I never asked as I didn’t want to know. It’s all so unfair whatever stage/grade it is. Plus it’s all so individual.

I agree with @TopOfTheCliff it’s very tiring letting cancer thoughts back in your head. I’m hoping that as we get further away from the events that those thoughts will fade and I’ll think about it less.

A friend who I haven’t seen for a while asked me how I was today and I automatically answered that I was “good, thanks”. She meant “how are you, cancer wise….” And I just answered automatically…. Which made me smile as I haven’t done that for ages.

Also I was told by my oncologist that they take from the date of surgery as being when I was cancer free (in my case I had chemo first) because everything after was to prevent it from returning.

https://www.thetimes.com/article/0217d076-37e1-4d84-a4ab-fe971c35f1f0?shareToken=2dd8401bce2623193340869b4401809b

This really resonated with me this morning. Julia Samuels is wise and compassionate. Posting link in the hope that voters may find it helpful

Others not voters!

Thanks so much for posting this @GrannyGoggles - a really good, inspiring read. I need it today, as health anxiety is getting the better of me at the moment. I like the advice of allowing the fear its place, noticing it but not tightening against it. Will try and apply!

Good article, thanks @GrannyGoggles

Needed to read that last paragraph @GrannyGoggles

It’s good advice, irrespective of your attitude to work.

I’m the opposite of the person writing in. I have minimal interest in work, no desire to get back into that rat race - doing the literal minimum to get by. I resent every minute I spend at work because I’d rather be doing other things just in case I don’t end up with as much time as I think I’ve got.

I am solar dandelion weather testing before getting more than 2. I love the ones we've got from RHS and they both lit up again last night but some sites say take them in for winter. I think they maybe IP44 (water resistant) rather than IP65 (waterproof) but DH thinks will be fine. MN reviews of solar lights show them only lasting one winter. Though they have batteries that need replacing at 6 months. These one do look quite nice as garden ornaments as well but will get more if they last. Tonight we are adding bulbs to the garden (have just over 100 but not sure how many will get to do) and adding lights to DSs garden shed.

I am same as you @Lilgreygoose I felt I had been there done that with work and enjoyed it at the time but definitely no desire to go back to very full-on roles and as had enough money to stop working I largely stopped. I did one role after cancer I had always wanted to do but never got chance before it. I was also conscious of if I get stage 4 in 5 / 10 /15 years what will I regret not having done and work have been there, done that. It was travel (which I have done more of and loved), time with the kids and DH and at the time I got affected by talk of grandchildren which was very unlike me, am not that maternal and my kids were 14/15 at the time so had kids around who were way too young. Maybe it was symbolic as in potentially I would miss life events for my kids but that one has gone and so largely have the thoughts I am certain to die younger. I also found talking about cancer did not help me, giving it much less headspace and doing other things especially exercise worked for me. Thanks for the article @GrannyGoggles hope you are fine.

That’s a smashing article @GrannyGoggles really resonates. Tricky times but this has helped.

Thanks for the article @GrannyGoggles🌺

Added the holly fairy lights and light up penguin and polar bear to DSs garden shed and 2 solar dandelions turned on and it was like Christmas had come early here. We planted some of the bulbs (about 35 iris) and cleared some leaves and DS took a bath whilst we did it. Nice weather for gardening but had to stop at 6.45pm due to lack of daylight. DS is still using the shed a lot. Got a council collection of 8 things tomorrow and already made that. Have another fruit and veg farm order for Friday - those are proving successful here - DS yesterday ate 4 apples, 2 pears, apple juice, 5 raw whole carrots and cooked broccoli.

I’ve got a vegetable box coming tomorrow and we have a glut as I didn’t use up last weeks veg and we are away over the weekend. I may have to give some away. Vegetable waster! My knee is still crunching and swollen so I am going to have to miss the event on Sunday but l shall go along for the social side before and afterwards. Next week I have a three day cycling trip with friends then a two day walking trip with other friends. I just hope I can manage them. I’m cramming in the fun before the little GC arrives! DD is really well and stops work tomorrow so we hope to have some fun days together. I’ve messaged my GP about my knee but haven’t heard anything back.
I have decided to give my cleaner a break as she has gone a new job and doesn’t have time for us currently. I’m cleaning my own house and paying myself the money to spend on treats. Being very low maintenance usually I have decided to upgrade my tatty wardrobe since the clothes clear out last week and have some nice treatments. Nothing as drastic as fillers and Botox just nice creams and a bit of pampering. The house is looking better already as my cleaner was afraid of spiders and very short so never did anything above waist height 😂
I may get bored of it but I am tackling some dark corners and enjoying the exercise and the results!

@GrannyGoggles that is a great article! I read it once thinking “oh I am retired and my career is over so that’s not relevant to me”. Then I reread it and realised it applies to all of us moving forward into the New Normal whether that is work related or not. My plans seem to get stalled by “ what ifs” and this suggestion of pacing and moving forward gently instead of headlong is very helpful!

I keep a log of the fruit and veg though don't get the boxes as there's too much unusual veg that DS won't touch and no fruit. We can order individual items which is better for us though there's a £50 minimum which is quite high - at the moment there's lots of fruit and veg and can get things like eggs / fruit juice / coffee / honey so its fine for now but next Friday there's no corn on the cob or strawberries atm. 😿So will see if continue it. Those were our favourites but going out of season. We had the strawberries at lunch time and will have the corn on the cob with dinner. I did get 1 kg of strawberries this time as DS eats so many of them.

Hope you have good trips away @TopOfTheCliff and everything goes well for your DD and her baby.

Hope everyone has a good weekend.

I have been thinking about re-doing Couch to 5k as I want to get a bit more variety in my exercise and rest my wrist and my carpal tunnel issue. I decided I’d try a run first and see how far I could manage and I did about 3k with no issues so I’m chuffed about that. I bought a wrist splint but had to send it back as I bought one for the left and it’s on the right. Doh.

DD2 went off to uni last weekend so it’s our first weekend as empty nesters. We had various nice plans but DH hasn’t been feeling well for a few days and has just tested positive for Covid. So plans are cancelled but I do have a good book on the go (!) and I might go for a hike on my own on Sunday if I stay well. Better luck for the weekend to everyone else

@dotty2 I quite enjoyed couch to 5k, felt like it was achievable. I’m not a runner at all! Also everyone seems to have Covid atm. Look after yourselves. I think my DP has just had it, my mum tested positive yesterday and I’ve got a dodgy tummy so there’s something going round……

I’ve had a few days thinking a lot about cancer which is putting me into a funk. This time last year I was deep into chemo and feeling awful & depressed all of the time. I watched an awful lot of Strictly & The Traitors last year and they are both back on TV so it’s reminding me of this season. Plus October is BC awareness month and it’s all over my social media. I’ve been too much in my head this past week, despite doing some good positive things (work, exercise & socially) Just got triggered again by the change in exemestane brand the pharmacy has given me this month. Why is it all so difficult?

We’re still hoping that the puppy will arrive next week as distract us all from the winter rolling in…..he’s been delayed because one of the other pups in the litter sadly died - the breeder is distraught - so we’re waiting for PM results - they think it was lepto - so all the other puppies need to have to have antibiotics before we can collect him. Fingers crossed for next week.

Sorry you’re feeling crappy @Littlecaf- I had the same thing for the first two years after chemo, It was August for me that it started, and I got real flashbacks to when it was going on triggered by the season, it wasn’t so strong this year, though maybe that’s because I was going through a recurrence scare and waiting for scan results at the time.

My DM’s house sale finally went through last week, I wasn’t expecting us to complete so soon as they hadn’t got a survey done, and it was a terrible time work-wise as I was already working over my hours because of big events, and my DB was hopeless. The completion date couldn’t be changed though, because someone in the chain had a mortgage offer that was expiring, so we were clearly always working to that date, but nobody told me that! Anyway, I spent a couple of weeks doing the final go through, then Age UK did the house clearance and they were brilliant, and I felt happy that my mum’s stuff would go to people who wanted it and that the money from the sale would be spent on services. I spent quite a lot of time crying, but now it’s all gone. I feel fine. It’s strange, I don’t have my DM or her house to worry about anymore, I’ve had a clear scan and blood test results so I don’t have to worry about cancer, DD is settled in her job and her flat, and for the first time for over 20 years, I can focus on myself and not be in a constant state of stress looking after somebody or something else. It’s nice! Today I am going out for the day to a midcentury market and for a wander around the shops. I need to pick up my exercise routine again, but I will start tomorrow with something gentle and a spa session!

That's great to have house sold @SierraSapphire

Lovely to have both at university @dotty2 if expensive.

Hope puppy arrives soon @Littlecaf

We had a productive if boring weekend of getting things done around house and garden and got all bulbs planted, chicken flooring done and quite a few things in the house. Went to hospital today to meet with surgeon who did my diep surgery a year ago to discuss if a stage 2 needed. She thought everything looks so perfect it's not needed and just said could get a 3D nipple tattoo. It seems you can't get on NHS only semi permanent ones or stick on nipples 🤣. She said as it's been a year could go ahead now or leave it as is or do in 5 years. She was very happy to see results and asked about my job and my kids and had remembered which was lovely. Was nice to have a happy relaxed meeting. They were both admiring my stomach and belly button especially which was amusing. The results were really good but never known people get so excited about a belly button. When I told DH he said he hadn't even noticed it changed. She could not give me details of where to get a tattoo before I even asked.

I thought the hospital that DD worked at previously did them, she watched some being done as part of her burns and plastics placement - I googled and it led me to this https://www.nipcharity.org/nipple-tattoos-for-breast-cancer-survivors - I think some of them might work in hospitals. DD’s in the north-west, but it isn’t a specialist to cancer hospital @MsPenguins.