The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

Hi,

Just thought I'd stop by! I'm 35 and 6.5 years out of pancreatic cancer. 22 cycles of chemo and a whipples procedure to thank for that!

Am I too far out to join? ❤️

Welcome Amybelle88 that's amazing news and of course its fine to join. Its for any length after cancer and always great to hear of people however far out and however they are doing.

I am sorry that happened to you so young.

Well done Remaker and glad that was sorted Top

@Amybelle88 Waving to a fellow Whipple Warrior.

I had a group therapy appointment yesterday, I broke down in tears when talking about how cancer has affected my life and how poorly I still sometimes feel. It's the first time I've ever expressed/acknowledged the sadness I feel about it to anyone. I'm still very tearful now, so I don't know if it was cathartic or not.

Hey!!!

Waving to you fellow whipples warrior! Where did you have treatment?

Thank you for welcoming me - it's so very hard at the beginning I had a really tough time - now I'm further along I do feel much better about it all but therapy is a must and time. How hard is it telling someone who's had cancer that it takes time to get over something though?! It's such a mindfuck - the one thing we are worried about being cut short is time!

Not ashamed to say I did suffer with a nervous breakdown in the end but managed to get through. My body was just sick of being hypervigilant all the time and crashed.

I think you're all amazing.

@Amybelle88 I had my op at QEH in Birmingham. The care I got was excellent.

So you already have a cardiologist. That's the ideal person to ask.

In my experience, oncology don't know and aren't bothered about it really. They only noticed my significant drop in LVEF after I kept on asking what my result was before treatment and currently. It had dropped enough for cardiac support, but was already months on by then after the drop had occurred and I had a BP crisis the following week. At least you are on their radar and they stopped treatment, but at 37% your LVEF is lower than mine was.

Still not sure what to do about my GLS. I don't have a cardiologist. I suppose I'll ask my GP for an echo in the spring.

Don't blame yourself, the MDT are supposed to check these things (although they don't always I discovered).

Welcome to the new people xxx

My weight loss is more like stable weight. I'm 2.6 kg lower than the highest I got to, but have been trying to lose weight since early October. Gradually accepting I might have to give in and buy some new clothes in a larger size because I have such a limited choice of things to wear. I need to shift about 9kg to reach my pre cancer 55kg.

I went to a cancer centre art activity yesterday which was really lovely, but one participant had a stinking cough and cold. Damn selfish of her to attend. Another participant and I were chatting afterwards and she said how worried she was seeing as she is stage IV and on immune suppressing immunotherapies. I'm also rather immune compromised. What is it with people that they don't consider how they are putting others at risk? One thing is on public transport when there's no option, but it's on another level altogether when it's an art class in a cancer centre. Fingers crossed nobody caught it from her or that could easily be Christmas and New Year ruined not to mention serious ill health. But the class was so nice, we made Christmas cards.

@MissMarplesNiece I reckon it was cathartic. I used to cry a lot and the sort of crying that is deep and painful. Mainly about my double mastectomy and not being able to see my parents. This has changed in the last few weeks. I still get a bit tearful but it’s different - more like a processing of what has happened and it’s just a few tears when I talk about it.

I think we have to have time to process things. And it isn’t necessarily linear.

I think the human body and mind is very powerful and you will heal given enough time. If you keep feeling low, talk it out with a counsellor or friend.

I’m finding that the fear is lessening. I know that one day I will die and that I will die of something and that is ok.

I’ve also just read a really perfect book for how I’m feeling - The Book of Two Ways by Jodi Piccoult. It’s about love and life and death, the road taken and the road not. I sat and read it practically in one sitting.

Big hug xx

@FairyWren7 I think you are right. I am now diagnosed as stage 4 ovarian (previously said to be primary peritoneal). There’s been a good response to chemo, but CT says it’s still active near my bowel - and I have GI symptoms. I’m on maintenance therapy to stop the cancer cells surviving (bastards).

I have so many trains of thought going on at the same time - positive and negative. Different versions of the future showing up in my head.

But ultimately we have to die of something- and I really know that now.

Simultaneously I’m back at the gym doing yoga/ Pilates; walking our dog; planning Christmas; doing housework…

The whole thing is mad- that our brains can cope with all these scenarios both ordinary and scary is amazing.

@RedRosesPinkLilies yes we learn to compartmentalise things given enough time so we can function.

I’m glad you are having a good response to chemo. I think exercise is important.

For me being able to swim again is having a real effect on my mood and self image. :)

@FairyWren7 Thank you for the book recommendation.

I realised I miscalculated my weight loss. The hospital weighed me as almost 70kg at my heaviest, so 15kg up from the beginning of chemo. That means I must have lost more than I thought YAY! Still can't get into my own clothes again yet though.

@FairyWren7

I'd also like to thank you for the book recommendation. I've ordered a copy.

I also feel swimming does me good both physically and mentally. There's something about the water too.

Good to hear you feel you're managing to process things and that it's taking you to a better place than where you were.

@Amybelle88

So sorry to hear you went through all of that and at such a young age too. How do you feel the Whipple surgery affects you now? 22 cycles of chemo is an awful lot isn't it, but wonderful to hear you're 6.5 years on from that.

@TopOfTheCliff

I know what you mean about the lack of agency. They never seem to realise that a patient might want to know and understand what they're doing to us; heaven forbid actually have any agency in any way. The allocation of appointments at inconvenient times, then when you cancel other things to arrive on time they make you wait over 3 hours.

Cancelling your scan on the day because of some arbitrary new rule is infuriating and unfair. They should at least only apply it to future appointments, not ones already made.

The ludicrous print outs I received didn't even mention HER2 but were full of pictures of old women and oestrogen therapy info despite me having a HER2 cancer that is not oestrogen sensitive and me being working age, not some old biddy like in their photos. I had to read online journals to get any info at all on HER2. It's like they think HER2 is too complicated let's not confuse the poor brainless patient with all of that, just tell them about treatment the patient won't have because, well, most do have it and it's more simple to understand.

Basically, NHS breast cancer handouts = oestrogen blocker info with photos of old ladies. Great... when you haven't got oestrogen sensitive cancer and are not an old lady, although I admit I do feel like one now.

We still haven't put our Christmas tree up! Husband has been working really hard this week though, back home very late. Busy time of year in his line of work.

That's good on the weight loss Summer that's similar cancer treatment weight gain to me and loss needed. I have about 8.5kgs to go though have initially just aimed for a BMI in the high 24s. I did have a BMI of about 19 for years but don't think there's any way will ever go back there. I gave up on not buying new clothes some time ago though I have kept a lot of my old stuff though with DIEP as well in future my shape my change too. It helps not working on that so don't need work outfits at least.

I lost really fast over the first month, also off Tamoxifen then but last month and a half quite slow but at least not put back on despite back on Tamoxifen. But it was something like 4kgs off first month then 1 kg off over whole of next month and a half. But the issue is at the fast rate of 500 calorie deficit a day so having 1100 now in menopause I feel so weak and sometimes shaky and only can do it without too much issue on the swimming days so can eat the swimming back. So having to slow it down to c 300-400 or so loss a day on average. And weight fluctuates throughout day which is normal but makes it hard to get an accurate weight which is comparable to previous with the slower rate.

Real Christmas tree now decorated and all presents ordered. Getting there.

Since my treatment I have suffered with very cold hands and feet. Feet are easy to deal with - double up on socks, warm slippers etc, but I'm finding my hands a problem. Sometimes my hands are so cold that the ends of my fingers go numb. Most of the time it's impractical to wear gloves around the house.

Anyone else have this problem and if you do, what do you do about it?

@MissMarplesNiece I have peripheral neuropathy from my chemo and part of that is feeling very cold in my hands and feet, especially my feet.

I am having acupuncture and it is definitely helping the numbness and tingling. My feet still do feel cold but it has improved. However it is also summer in Australia where I live so I can’t rule out the weather having an impact too!

In the winter I got some gloves which work on touch screens so I wore gloves a lot even inside the house.

@MissMarplesNiece I get like tingling in my hands, sometimes right side of body, numbness etc from time to time post chemo. With the coldness its worth checking for vitamin deficiencies as various of these can cause or add to it like anaemia - I take a wellwoman 50 vitamin but maybe once a week.

I tend to often have a fleece blanket over me but that's much easier if you don't work. 😂

@MissMarplesNiece How about these?
https://www.turtle-doves.co.uk/womens/shop-by-product/wrist-warmers

Hello everyone.

I'm nearly 4 years out from a shock diagnosis of early breast cancer, ER+ but with no lymph involvement. From diagnosis to corrective surgery was only 3 weeks, so it felt like it was all over before it had even begun, somehow. Had no issues with RT sessions but suffered residue pain in the affected breast for months afterwards.

I've mainly been on Tamoxifen ever since with a couple of breaks because side effects were too much. Most recently I stopped it in September because it was really affecting my mood and causing weight gain (or so I though). Mood massively improved within days but haven't lost a single pound and seem to be retaining a lot of fluid.

I get freezing hands, always have but it’s worse since chemo. Getting up and doing some stretches or a quick burst of cardio sometimes helps.

I’ve had a frustrating weekend of failing to finish jobs I meant to do and not a single Christmas card written, which was also my plan. But I did manage a rainy windswept run yesterday.

I was struck today by something Miles Jupp said in a piece in the Times about life after a (benign) brain tumour. ‘The whole point about getting better is to be better, not to be clinging to the handrails for the rest of your life’. I do feel I’m clinging to the handrails still, it’s a thought provoking image.

Welcome @Amybelle88 and @Bookist and anybody else who has slipped in quietly. I think the consequences of cancer will rumble on for years. The hormone blockers are hard to evaluate as they help reduce recurrence a little, but if they prevent you losing weight and exercising you would be better off them being active and slimmer.

I have had a lovely weekend of Christmas gatherings and seen lots of friends who thought I was at death’s door. It has been funny seeing them eye me up and say with relief “ but you look so well!”. I just agree with them and say how nice it is to be back. It means I haven’t done much exercise but I will be good tomorrow.

https://www.theguardian.com/culture/2023/dec/10/cancer-made-me-face-life-laura-smyth-on-finding-comedy-fame-herself-after-diagnosis

Thought this was an interesting article - it debates the idea cáncer can focus us on what we really want in life.

Welldone @remaker, so happy that your recovery is going on really well.

@Summer yes maybe see your GP about the GLS, hopefully they can help. I have not been able to speak to the cardiologist yet. I need to speak to the breast care nurses about my CT scan. I am starting to get breathless but I keep wondering if it is anxiety? Because I rarely get breathless after a walk no matter the pace. Will keep an eye on it.

@missmarples i think it is good to cry atimes, our bodies and minds have been through so much. At my kids nativity last week I couldn't help thinking that any Christmas could be my last. I would never have such thought before my diagnosis! You just get a real sense of what life and living is after a cancer treatment, well for me anyways. I have also accepted that I will go one day but I pray for more time always.

Welcome to all new comers.

Welcome Bookist I am also on Tamoxifen since Aug 22 and have had lots of weight gain for first time ever and fluid retention esp in neck and insomnia. I took a 6 week break in September for bloods for changing off it, apparently need 6 week break for that. I lost 4kgs in that break (was cutting 500 cals a day first month then normal amount next 2 weeks as ill) and neck went thin again. Insomnia only slightly better. Been back on it for about a month now and have lost a tiny bit more weight maybe 1kg over that month. Neck has swollen up again which I hate. Insomnia is back but was bad off it too just not as bad. I will keep on it as big possible benefit for me - 10 women out of 100 like me die without it over 15 years. I can exercise fine on it and feel fine but the water retention really gets me down esp in face and neck as hard to hide that and affects how people treat you. I will continue with weight loss to get to my end of cancer normal bmi again but 8.5kgs to go.

Went swimming today and did 100 lengths then came back and made 2 sacks of recycling. Found 2 membership cards we thought were lost. Hoping with weight loss fluid retention will be less noticeable.

Just weighed myself again and down slightly but as I was doing it a big fluffy paw appeared on the scales and made it go up 0.4kgs. He's been a bit hyper all night, I told him to go to sleep and it wasn't time for silly cats and each time I said silly cats he trilled. Then when I tried to go back to go to sleep he went for my slippers. Now he's just knocked a step over.