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 all, I hope we are all doing well. These are very nice perspectives on working after cancer treatment.
I wanted to ask how you got your groove back after treatment, I seem to have lost the old me because I don't look like me, I don't dress like me (put on so much weight). I look in the mirror and sigh. The worst for me and I know I should be grateful is seeing other women with boobs. I had a masectomy and I feel totally lost and jealous too, i must admit. It's like I finished chemo and just left out to sea. But I have still got other treatment...herceptin..tamoxifen etc. No, I am not depressed or maybe I am?

Hi, I'd like to join in with this thread. I came upon it by accident and when I read through it I identified so much with what I was reading, but also feel inspired by the things you are all doing.

I had ampullary cancer in 2019. I had my gall bladder, most of my small intestines and half of my pancreas removed in a Whipple's operation. It has left me with insulin dependent diabetes and I am permanently on a rotating course of antibiotics because in my reconstructed digestive system there is something called a Roux Loop which is too short and gets infected. I take artificial enzymes with everything I eat because my pancreas doesn't now produce the enzymes needed for digestion.

I feel like I went from undergoing major surgery with a difficult recovery, to going home and being expected to carry on life as normal. I don't feel normal - I'm permanently tired and have pain everyday. I read so many accounts of people having cancer and then starting to "live life to the full". That hasn't happened to me, my life has turned into a grey fog.

Welcome @MissMarplesNiece pull up a chair and have a cup of tea or whatever suits you. What I know of Whipples in that it is a massive thing to recover from. I met a man who had Whipples procedure and then was told they were mistaken and he didn’t have cancer after all. He decided to sail round the UK to celebrate not having cancer but he was struggling with the gut issues.
I am aware there is a lot of help for Breast Cancer ladies recovering but not so much for others with rarer cancers. I feel like I have recruited a team to help me with recovery now. Do you have a nutritionist or a dietician who takes an interest? And maybe a physio or a PT? To help you fight the grey fog?

@Makemineadecafplease I remember your splendid name from the other thread. I’m sorry to hear you are struggling. It is depressing to look in the mirror and see a stranger there. My husband was asking where the blonde lady with long hair he married has gone. I have no idea where she is but I’m standing in for her. Be gentle on yourself as you are still having treatment. It may not be as bad as EC-T but it still drags you down. Things will improve with time honestly.

I failed to get out on my bike today but did go to yoga and the Grape Tree to buy nuts and seeds and edemame beans for my super healthy diet. I also sneaked in some marshmallows for hot chocolate over Christmas!

Keep fighting the good fight folks. It’s a long haul back to normality.
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Make I also really struggled with the impact on appearance, went from very attractive on starting chemo to totally trashed after it and a years Tamoxifen. Hair trashed , boobs trashed, and went from normal BMI to overweight. I had to avoid mirrors and cameras. It shouldn't matter but its just another thing to add to the list of awful things that have happened.

What has helped has been swimming and get that up to 3 times a week about a mile a time but any exercise you can do helps and 3 to 5 hours cuts reoccurrence risk 50%. That has helped hugely physically and mentally. Then being kind to yourself which I struggled with but am coming round to, your body has been through a lot and it will take it a while to recover. Once I realised I had put on weight, 14kgs up 😱I added that to my list to start tackling . Lost 4kgs in a month but have just stalled last month. So still 10kgs to go and found it harder with the cold weather and dark and everything is about food. But my hair is getting better, still another year I guess before will be as before but it looks like a style now, well almost. Breasts I find the Ameona swimming ones helped which wear all the time, obviously its rubbish still but you at least can hide it. Take a wellwoman 50. I am not back working as have savings and esa and lovely husband and have SN son who requires a lot of input, DD doing A levels and reconstruction to go. But I do generally enjoy not working and apart from the meetings etc just go swimming 3 times a week, to events, on holiday so its quite pleasant really and do work on the house. I would just start with something you enjoy and keep going.

Welcome @MissMarplesNiece That sounds really tough. Can you get advice from your oncology team on how to feel better. Exercise has been the biggest thing for me but you'ld need specialist advice to see if that's possible. If not hope you can find something else you enjoy. It is strange its like your life was suddenly turned upside down and you make a new one and its working out what that is.

We will get there, one day at a time and if one day doesn't go to plan just be kind to yourself about it. Floof also helps me so much, my trilly, permanently happy boy.

Yes, @Silkiebunny, "It is strange its like your life was suddenly turned upside down and you make a new one and its working out what that is." describes it exactly. I told my doctor that I felt I'd lost my confidence and was stuck. He said many people feel like that after a serious illness/major surgery, but he didn't really give me any suggestions on how to move forwards.

From what I've been reading on this thread, many seem to find exercise to be very beneficial, life affirming even. It's something I'd like to introduce into my life.

Hello @MissMarplesNiece @Makemineadecafplease - welcome!

As others have said it’s when treatment ends and you are sort of left to rebuild your life with no real support.

I did a days work again yesterday as a CRT (cover) teacher and while it was actually a very easy day I am now exhausted.

I used to have long highlighted hair and boobs and now I’m sort of square shaped with very short hair! At least it’s growing back.

I feel like cancer has accelerated me into full on middle age but with even less energy.

All we can do is keep going and find some things that give us joy or at least happiness in the doing.

I still haven’t been swimming but I used to love it and I think it would do me good. So that’s my aim…

@MissMarplesNiece what sort of exercise attracts you? It’s easy enough to start with a short walk every day but unless you love it you probably need a class or a buddy to meet up with. I found yoga absolutely brilliant for not just stretching out my scarred muscles but also repairing my soul, eliminating the bad energy and welcoming in the good. My yoga teacher is quite eccentric but very lovely. I also found a personal trainer who runs Pilates and aerobic gym classes and she is one of the most positive people I have ever met.
My goal for next year is to learn to paddleboard with my daughter, but I’ve got to get through a hip replacement first! I would also like to get back to riding my bike in Audax competitions but that will take a while too.
You will probably not be as bonkers as me but it is good to have a goal to work towards.
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Thank you, Top, Silkie and Fairywren. I will aim to start some exercise soon. I have returned to work full time (we need the money) so I do struggle to find time for exercise but I will try and start with a simple walk at the weekend.

Miss Marples, welcome, as Fairy said we will have to find joy in the doing of things. I am glad that we have this board to talk to others who can relate because it is not as easy in real life.

I’m really happy with myself because I went swimming today - I remember why I love it. My body feels so much better. (I think I will ache tomorrow.)

I’m now on a hunt for a local private gym and pool… They are going to build a brand new leisure centre around the corner but I need something now.

Another random thing I’ve enjoyed today is eating Heinz baked beans - the supermarket I usually shop in doesn’t have some so I saw some today while I was out! Such a small thing…

Well done @FairyWren7, I love swimming! I did 1km in the outdoor pool yesterday, it was overcast, but makes me feel like a superhero! I have two gym memberships, which feels a bit extravagant. I have a local very functional one to make sure I'm going nearly every day, and then I'm a member of a posh one which is more expensive and 30 minutes away, but I spent over four hours there yesterday, I think of it as part of my wellbeing routine, it's got a lovely spa to relax in, and it gets me out the house and chatting to people, so it seems worth the investment. I feel lucky physically, because anxiety and diet change means I am the lowest weight I have ever been as an adult, and I had a hysterectomy, which, although it has made quite big changes in terms of surgical menopause you can't see on the outside and it doesn't give me any pain, I think breast surgery is much worse, and I know that the Whipple procedure is also massively extensive and life changing so more challenges there.

I also decided I couldn't go on as I was being unfocused around work, so I have contacted these people able-futures.co.uk who give mental health support at work, don't know how it will work out but it's worth a go and it's free, might be useful for other people. I did also get some coaching from Working with Cancer, it didn't really come at the right time for me but you can also get a few free sessions if you're in the UK. And I also had an introductory phone call with the business support from the local authority that's provided through the new shared prosperity fund, and I've got a meeting with them next week, so hopefully one or both of those things will help me with motivation around my business.

@SierraSapphire its really lifted my mood today. I’ve been singing around the house and I seem to have a bit more energy.
I used to go to the gym a lot at different points in my life in between being quite unwell with gynae issues. I’m at the opposite end from you, I’m the heaviest I’ve ever been. I lost a few kilos after chemo by eating between 11am and 6pm and cutting back on bread and less carbs. Alas, I find cake both mood and and indeed life enhancing.
Next on the list is a yoga class. I have a couple of possibles so I’m going to give that a go.

I'd like to find a yoga class. I'm daunted by the thought that it will be full of very bendy, stretchy people whereas I am very stiff and unbendy.

I'd like a class where the teacher is mindful/experienced with people who have had cancer. I don't really know how to go about finding one.

An old friend who moved up to Scotland re trained as a yoga teacher and does classes for macmillian. He knows the kilted yoga bloke who I believe also does the same.

It could be worth ringing around any cancer charities to see if they know of anyone. I've also been meaning to ring around.

My yoga teacher from years ago got into yoga following a brain tumour; he said it really helped him and also went on to deliver classes for cancer patients.( also the same style as kilted yoga bloke.)

I've got a yoga mat beside my bed as I do need to stretch regularly. I go through phases of doing Sun salutations at bedtime and in the morning (usually when I've seized up!)

I've actually just ordered a nicer mat that will hopefully tone in with the carpet so it can just stay there all the time right next to the bed (bright red was getting a bit much!)

I'm feeling rather grim possibly after radio therapy; i have no idea. but forced myself to do 15 mins on the rowing machine and a load of stretching. I also like to lie on a half foam roller; it really helps my upper back.

There's a Macmillan information office at the hospital but, duh, I've never thought of asking them about yoga/exercises classes. I'm at the hospital next week so I'll call in.

I just tried calling maggies but they didn't know - she said to Google and found the yoga teacher I know who had the brain tumour, but I know he's moved away so I'm no further forward!

I quite like Sarah Beth on YouTube. She does a lovely bedtime one. But I've done enough in the past to feel fairly confident doing at home.

Iyengar yoga is good for people who are a bit older or stiffer, or who have a health injuries, there's a lot of using props and getting into the right positions, and teachers are very well trained, although they aren't classes everywhere - iyengaryoga.org.uk Otherwise, yoga described as hatha is probably a good bet (although technically, hatha describes all physical yoga, there are many other practices to yoga that in the west people generally don't know about!). One of my yoga teachers posted a meme that said saying you are too stiff to do yoga is like saying you're too dirty to take a bath! I find that useful! I've done a lot of yoga, but I'm not particularly flexible.

Oh, and Yin and restorative are both gentle forms of yoga, where you're more likely to hold the position for longer, although this can sometimes be challenging in itself, they are usually done sitting or lying on the floor rather than standing @Ikeameatballlunch @MissMarplesNiece

Our Maggie's had a yoga class online Marples I tried it and didn't really get on with it but it's worth trying the cancer charities to see what they offer. Maggie's also had a Where Now course and art therapy and limited counselling.

If anyone is within a year of treatment ending or stage 4 SomethingTolookforwardto is excellent for overnight hotel stays, meals out, short breaks and they are online.

So glad you found swimming helpful Fairywren

I also love David Lloyd Sierra but not a member now as crazily pricey, we were members for about 4 years but it's doubled in price since then.

If anyone is near Norfolk there are seals on the beach at Horsey which I saw last year in December with pups, not sure if they have arrived yet, maybe, but things like that can really help.

Thanks @SierraSapphire, I was just thinking I need to establish what type would be best.

The one I did was Forrest yoga which at the time I had no idea was pretty niche. It was bloody amazing for my back, but I understand that's what Ana Forrest developed it for as she broke her back and mixed yoga and physio moves together. It's more of a physio work out to be honest. And a mash up of several styles.

Online It's gone quite woo, though my teachers weren't at all woo.

@Makemineadecafplease I know exactly how you feel about not feeling like yourself. I used to like wearing bright colourful monsoon style dresses and I don’t think they suit me now.

But that makes me question why we feel like this? I was in a clothes shop the other day and another woman was shopping with her mum who was 102 and in a wheelchair. Her daughter said she didn’t think a bright pink dress was right for her Mum. But who makes these rules?

One thing I am doing that you could fit around working is some yoga styles stretching before I go to bed.

I’ve had a good day working as supply today - I was expecting a very challenging day but the kids were better than expected and I actually felt like my old teacher self even playful when we were playing dodgeball (with soft balls). I actually did a reasonable literacy lesson and they all listened and did some work. (No mean feat in a special school setting with multiple behaviour issues). So I feel like a useful human today. It’s been so hard feeling so unwell and being at home.

I’m wondering is this upturn is linked to the swimming? I reckon it’s mood boosting. That and lots of sunlight at the moment. I even sang along to the radio in the car on the way home. First day I’ve felt almost ‘normal.’

Be lucky - even though it’s Wednesday not Friday!

@Ikeameatballlunch there’s nothing wrong with a bit of woo I find. I used to be a rational scientist scoffing at alternative therapies but now I find myself with favourite crystals given to me by the lady that sold my daughter a wedding dress, going to yoga to eliminate the bad energy, and eating a plant based diet with kefir and kombucha. I am close to Totnes, capital city of Woo, so maybe I’m being assimilated. It is what I needed after finishing treatment, a bit of nurturing and soul replenishment. It’s working!

Did a heavy exercise session yesterday, I was fooled by the description as it was much harder than I expected. I am resting up today preparing for a skittles match later. My joints hurt!

@FairyWren7 well done achieving a good day!

My body firmly told me enough was enough yesterday and konked out in the afternoon. So that's me told for the time being.

A level of woo is ok; borderline (or actual?) cult is another matter! I remember hearing some were leaving the local group for these reasons about 8 years ago and no I can't find anything local.

I revisited a the website yesterday and saw posts about twin flames etc 👀 it's a shame as the actual yoga was excellent though, and lots of props and adjustments.

@FairyWren7 I teach in send and yes, no mean feat! Awesomeness indeed!

@Makemineadecafplease I bought a rowing machine with some savings as I knew I wouldn't be able to get to the gym or classes regularly. I have to say when I've been able to use it I've adored it and started to learn how to do Hitt on it. I read a huge number it threads here researching and also found a study on rowing post breast cancer and the positive impacts.

@Fairywren7 at 102, I would definitely be wearing whatever color I want. I don't know who makes those rules either. I hope you continue to find reasons to sing along in the car.

@ikeameatballlunch that is a very good idea. I did use to row a lot at the gym years ago. It now seems like a lifetime ago, i will try and see if I have the strenght to get back to it because my joints have suffered from tamoxifen, I groan every time I want to get up from a sitting position. Al least I don't get hot flushes anymore so that's a plus I guess.