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.

Are people back at work? How is that going? I am getting one germ after another at the moment

Thank you @TopOfTheCliff . Exactly because of my immunity. They had taken off a prophlactic anti b as a tral as my neutrophils were dropping.
This transplant business is a balancing act.
We are booked to away for some winter sun in January so hoping to actually go. My consultant is sure I will.
Can I just say I love your posts they always make me smile. I am also relieved as af ellow HCP that you too adopted the informed ignorance/ cheerful denial approach. It's certainly been good for my mental health.

Glad you are managing to be cheerful anyway Top DHs stuff is down to 1 tiny room now so we have progress and managed to clean downstairs bathroom so everywhere clean now. Asd DS even took a bath and changed clothes. 🙀

Went swimming again, doing really well on exercise and days I swim really easy to cut calories, go about 3 times a week.

Got oncologist on Thurs to discuss changing to Letrozole from Tamoxifen but begining to have doubts.

Not back at work Red as 2 kids, one with SN, reconstruction to go and got savings and ESA so it's ok not to. Never get ill though, take a wellwoman 50 vitamin about once a week, plenty of vit C in diet, swimming and handgel.

@Reddishraddish I was invalided out of work with cancer during the first lockdown and never went back. I turned 60, got my pension, sailed solo round the UK then got cancer again. I’m done with work now, I’ve got adventures to catch up on!

I would recommend resistance training at the gym (ie weights) rather than cardio (which is treadmills). Women benefit in many ways from strength training and it seems to help weight loss by increasing muscle metabolism and burning more calories.

I am feeling chipper as my bad shoulder is mending and I had enough energy to do thirty minutes on my turbo bike. Go me! I may just be turning the corner.

@Silkiebunny you are amazing! Great news about the swimming and the clean house. I will go swimming once the blisters heal up.

I am learning slowly that this is an incremental journey and every small gain helps, whether diet or exercise or getting life back on track! We just have to keep pushing.

Thanks Top I think it's more the cleaners that are amazing. Felt quite fluish today, first time felt ill in over a year but hopefully will just be a cold. You are doing so well Top I feel at the moment things are going well apart from DS were it's stable but it does feel a bit like being on a tightrope where it's great walking on it but you could be knocked off at any moment.

I do agree that just doing a bit of something is a good way to go. I started exercising as soon as finished and built up, it's hard at start but gets much easier and anything is better than nothing. Walking, housework, gardening can all be good ways to start if more formal exercise is too much. I found swimming great. Whatever you enjoy is best.

I did sort another bag to throw out today with Floof helping. As soon as I go into the room he jumps on what I am trying to sort them stood with his front paws a metre up and his back paws start slipping from the shelf, managed to save himself. And he also came with a dark red paw, our door has just been painted that colour. 😎

Hi all hope all are well.

If I feel ok and skin is ok during radiation, do you think it's ok to exercise as 'normal' ?

I only have 5 days. One day done. I probably wouldn't afterwards as skin a bit hot but it's ok this morning.

I was flicking through the moving through cancer book again (it says walking during radiation but also talks about whole months of it) and the phrase "if you can watch television you can lift a weight" sprung out. Am reminding myself of that!

Felt thyroid levels kicking in on Sunday afternoon. Felt good for the first time in months! Just in time for radiotherapy...

Yeah scrap that, boob is sore already, walking it is!

@Ikeameatballlunch my oncology team were very much of the opinion that if you feel able to do it, it won't do any harm. For the first four weeks of radiotherapy I was still biking twelve miles a day (then developed a DVT which put a stop to that!)

They were even happy for me to swim provided my skin wasn't sore, peeling or cracked, which I know the usual advice is not to do so.

I really need to get in touch with my PT. I've been doing lots of pootling about gym sessions and feel like I'm ready to switch it up a gear - but feel a bit scared about seeing how much strength and fitness I've lost! Small steps though.

Wow that's amazing!

"The evidence" is apparently that it's good - I suppose I'll see how I am. 'Normal' is rowing and I'm trying to include hiit (only 30 mins)

Can it give a dodgy tummy? That might govern it more than anything.

@ClashCityRocker its hard to know how far to push yourself isn’t it? I keep being told to slow down by my PT and physio so I guess I am an overpusher!
I have booked a class tomorrow evening which may be a mistake as I have a busy day of a moving forward course, looking at a new old boat to buy, and an evening meeting. I think my energy is creeping up but this will be a good test.
Today I sat around drinking coffee being the Wise Friend which was fun.
I have also booked a phone consultation with a physio who runs Gentle Cancer recovery courses and a yoga class for cancer patients. She sounds brilliant. It’s good to know there are people out there to help us.

Hello all. V inspiring to read so many tales of physical fitness. I need to get back into the swing of exercise - I've been dieting which has had some good effects but I now need to step everything up a gear.

I was wondering what everyone's experience was of medical professionals post-cancer? I had a consultant appointment recently about a severe allergic reaction to some food. The consultant was interested but not that bothered until they asked for my medical history. When I mentioned the cancer, they were suddenly extremely attentive. This has happened a couple of times with GPs, too. In none of the cases has there been an apparent link to the cancer, but I almost feel like I get put in a special bracket once they know I've survived it. Does anyone else experience this?

@TopOfTheCliff I bet you are a brilliant wise friend. Be interested to hear about your thoughts on the moving forward course, and how you have found out about these other classes? I’m doing my online stuff with my brilliant pt( cancer rehab specialist) bit would like to do more?
@AlbertCampion yes I’ve found this a few times with docs/ dentists too….. as if we’ve got some sort of medal? I won’t knock it! Any upside helps!!

Albert I get that with the dentist who seemed to want to be an oncologist, absolutely lovely but he always gives me free hour talks on cancer and checks for cancer himself. GPs no change, incredibly hard to get hold of, and tend to say contact hospital about everything and hospital say contact GP.

I did swimming a week after radio though then read after you aren't supposed to but I survived and swam a mile and when I checked with the team they said its OK as long as no broken skin. Some people do get tired with radio which can come on suddenly so bear that in mind - better to do something can get back quickly from if suddenly tired. I didn't get that but think it hits 2 to 3 weeks after radio if you get it.

My oncologist appointment has been pushed back a week. Supposed to go for bloods anytime I like before then but feeling rather grotty with a bad cold past few days. Am on a 6 week break from Tamoxifen which is now going into 7 so would prefer to do bloods and retake but just want to stay in bed. First time been ill in over a year though.

Sorry you're feeling poorly silkie. Well done for avoiding the bugs for so long though; it was a slalom germ pit at work from Xmas to Easter last year.

thanks for the tiredness tip. I've been trying to work out when it may hit (if at all - a friend said she was ok.)

I hope you feel better well soon and can squeeze those bloods in.

Sorry you’ve been flattened by the lurgy @Silkiebunny

Oh dear hope you feel well soon @Silkiebunny

I have had a brilliant day today. Feet still wrapped up but I managed the Moving Forward course and met eight lovely mostly elderly ladies who are still very traumatised by their treatment for breast cancer. I realised I was falling into a caring role with the volunteer and the facilitator and being helpful rather than a real customer. I think it is because I have been in Cancerland so long I have learned lots of coping strategies. I’m so good at breathing exercises I go straight into a kind of trance sleep now. I am not carrying much anger or fear or anxiety these days. I am just focusing on The Great Recovery.
I nipped home for lunch then whizzed up to see an old boat with a friend but we decided it was too much of a project and we want one all shiny and ready to race. Then I charged home for tea and went to an exercise class. I considered hard whether to stop at this point but ended up going back to the club for a sailing meeting. I am now in bed with sore feet but very happy my energy lasted all day. Luckily tomorrow is very quiet so I can rest up.

Someone asks how I found out about the cancer yoga classes. I started an Instagram account for ThegreatRecovery and a lovely lady called India followed me with @gentlecancerrecovery which is her page. She is a physio who specialises in repairing broken cancer patients with yoga and healing and lots of gentle exercise. I am lucky she is only ten miles away from me so I messaged her and we are having a chat tomorrow. I feel I need to recruit my team to help me pace myself on this rollercoaster journey I tend to overdo things as soon as I feel a bit better.
slow and steady wins the race!

Ooh can you link the IG account @TopOfTheCliff or send a DM if you don't want to out yourself (though I think you have before!) I searched but couldn't find it.

I am still recovering from another operation to remove a bit of tonsil, it was way way worse than my hysterectomy, I've had a lot of nerve pain isn't being touched by painkillers and could barely eat for a week and am the lowest weight I've been in my adult life, but I think I'm probably out the other side now. I was exercising five or six times a week beforehand but haven't been able to do anything for the last two weeks, probably another week realistically before I should subject my body to it.

My biggest recovery issue is lack of work, because of this op and also lack of energy / confidence / bandwidth from the cancer I've got no income coming into the house at all for three months. Got things in the pipeline but it all feels very stop-start. I've got my three-monthly oncologist appointment tomorrow, then probably another scan before Xmas, which throws uncertainty into the system. Not massively worried but it's on my mind.

I am getting my hair cut later, still growing out the two-tier hairstyle from cold capping, I don't think I'll quite be there this time but getting closer. It'll be a year on Saturday I think since I finished chemo. I am currently supporting a friend of a friend go through the same regime as I did. It's good to pass on the support that people gave me.

Still a bit up and down here. Sinus issue seems resolved but hayfever season so that’s not great.

However I motivated myself today and took the dog for a long walk and then did a thirty minute session with weights using a YouTube video.

I’m applying for jobs here and there when something I’m interested in pops up. Passed another couple of assessments for my Diploma in Community Development and halfway through another.

Need to plan to do an exercise class or something face to face and try and meet some new people!

@TopOfTheCliff - well done sounds like you are going well!

@SierraSapphire - it’s difficult getting back out there work wise with everything that you’ve been dealing with. I just want an office based job now where I can do something useful.

Warmer here now! Bit of sunshine makes the difference

I am muttering “pace yourself, pace yourself!” today as I always rush in and overdo things as soon as I feel better. DH has been poisoned by a couple of beers and a bag of nuts so poor soul is out of action with D and V today.
I shall look after him and take it easy for a change.

I had a chat with India who runs Gentle Cancer recovery. Turns out she has an online programme at https://gentlerecovery.co.uk/ which you can sign up to for £229 although there is a discount code somewhere for 15 percent off! I am debating whether it would be good to have a map and an expert guide to climb up this mountain or whether I just carry on blundering along. Amazingly she is only ten miles from me as is the Spirit Ash yoga centre at https://spiritash.com/spirit-ash-studios/

There is clearly more help out there if you know where to look.
Current plan for today is a lazy morning then maybe a short allotment session later.

@AlbertCampion all the time! The phrase I hate is “given your history….”. Any ailment means they decide to rule out cancer first. I suppose it’s good, but it doesn’t help you stay Zen when eg an inflamed eyelid means you get referred to an eyelid cancer specialist (“normal” people get given eyedrops).

Am in scanxiety territory at the moment- regular 6 monthly scans. Seeing the consultant for results tomorrow. Was doing really well to ignore the whole thing until about an hour ago and am twitchy now.

I posted this on the general Cancer thread but thought it worth sharing here too. Brilliant and funny programme!

https://www.bbc.co.uk/sounds/play/m001s5jm?partner=uk.co.bbc&origin=share-mobile

Thanks @TopOfTheCliff - I'll listen to that in a minute whilst tidying the kitchen. My favourite response was from a friend who'd had cancer and her husband had died from it, which was basically, "I'm sorry. It's shit".

When I looked at my calendar, I realised actually today was my last day of chemo a year ago not Saturday. Obviously, as I had my chemo on a Wednesday so the anniversary must've been a Thursday, that's the sort of thing I would've worked out beforehand before I actually had the chemo that fried my brain. it wasn't actually clear whether or not it was going to be my last day at the time, or whether I was going to have another one so I didn't really celebrate the end then. As I have my checkup appointment tomorrow, I don't think I will celebrate it today, could be a bit premature!

In terms of work, because I'm self-employed, I worked all the way through treatment. I was really lucky to have existing clients and enough work to do, but when those projects came to an end I didn't feel quite ready to go out and look for new clients, partly because I was having a recurrence scare and a biopsy. I had actually started to feel okay about creating a new work but then I've had this other operation, so everything has been up in the air again. I've got some good plans though, and actually the cancer has given me an opportunity to stop doing work. I was getting pretty fed up with and pivot slightly to do something else to give me a better quality of life.

@Silkiebunny You have really inspired me to start swimming. I joined a club, bought the prothesis you recommended from Amoena (which is great!) and started last week. I did 16 laps the first day, then 18 and yesterday 20. It's 25m per lap, but it's not a bad start for me even if I do rest between each lap 😂I'm a very slow swimmer because it's breast stroke and I don't like my face or ears going underwater, so my style is pretty bad - but so what, it's not a competition 😄

That's wonderful you are doing so well at swimming Summer It's such a good exercise and good to build up. I wouldn't worry about technique much as it's not competitive for speed just to get stronger and hopefully reduce reoccurance risk. My husband struggled a lot with swimming when I met him and only really got into it with me after my cancer treatment and has gone from doing 10 lengths to 70 each time, 15 metre pool. Only issue is I chat a lot with him, normally do 100 when we are together but when he's on the loungers due to his ear infection just gone was doing 150. I think any exercise you enjoy is good. I love our pool which has a sauna, steam room and jacuzzi and enjoy that as well.

Thanks for the well wishes. Still feeling grim, managed to make it to hospital today and get bloods which came back straight away. Though on returning home I have lost pretty much all taste and am very itchy with rash so now wondering if it's covid. Wouldn't have gone to hospital if that had happened before though was empty. In and out in under a minute which never happens. At least means can restart Tamoxifen whilst I await decision of Letrozole. I don't have too much issue with Tamoxifen, well massive sleep issues and a lot of weight on though that may have been as not watching and had sleep issues 6 weeks off it, better but not gone. Letrozole seems to have terrible side effects though higher success rate but I want quality of life as well as quantity. Oncologist is quite sensible and see her next Thursday.

Well done Top

Put small Christmas tree up mainly for Floof who seemed to have found one of last year's baubles, no idea where, but put tree up for him and he was so happy purring and trilling and loved the robins on it which he took off in his mouth. First bird he's caught. 😂Kitchen finished and outside of house nearly finished. Weight loss is stalled atm until can swim again.