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.

Ooh I am jealous of the swimming @SummerCycling and @Silkiebunny! I’m still waiting for my blisters to heal up two weeks after finishing Cape. One deep one has appeared on my right foot now. I shall go to Aquacise classes as soon as it settles.
DH is asleep and has been all day. I got him to eat quarter of a doughnut and a yoghourt and a cup of tea but he is zonked again now. Poor love!

Onward and upward is our motto!

I'm also longing to get back to the swimming pool! I rejoined David Lloyd, which I never thought I would do after I cancel my membership when I got cancer, and as well as the outdoor pool I've been going to masters swimming classes, which have been brilliant as I've never had swimming lessons before despite being quite a good swimmer, I've just taught myself. Can't do it with this hole in my throat at the moment, maybe another week or two....

Routine check up this afternoon, internal exam, not really expecting bad news but you never know....

@SierraSapphire best of luck with the check up, no matter how routine I don't think these things will ever come without some anxiety attached again.

@Silkiebunny I have been on Letrozole since May and have found it okay. I was really very worried about it but so far so good. I know side effects differ for everybody on each drug but just wanted to give you a more positive perspective!

Thanks @myrosehasleftme but I’ve got here and there’s no female doctor to examine me despite me being promised by the (female) registrar last time and it being written clearly on the appointment list. They're also running late so I’m just leaving as there doesn’t seem any point me seeing a male doctor for nothing. They’re going to call and rebook me.

@SierraSapphire That is very annoying- you shouldn't have to but worth phoning ahead next time?

TBH it's probably quicker to drive in here than it is to get through on the phone! I went into town and bought some boots instead, so not a wasted trip!

With DH poorly we have had a quiet day. I slept for 12 hours which is very rare, and have started some of the Gentle Recovery yoga sessions online. I am getting very good at putting myself to sleep in 5 minutes but need to stay awake for the meditation really. I still have one nasty little blister on my foot but the rest have healed so nearly ready for walking and cycling.
Zoe eating is going well today as DH not stuffing cake at me.
Time to cook something healthy for supper.
very Zen here… love to all xx

@SierraSapphire glad the trip wasn't wasted.

@TopOfTheCliff nothing wrong with a bit of cake now and again- isn't the Zoe approach 80/20? Good news re the blisters

I'm trying to motivate myself to do my weights session, will be third this week which is great but I find the dark evenings really put me off.

I've had my ovary removal scheduled for the end of this month so conscious I'll not be able to do much afterwards but really need to change my mindset from why bother, to take advantage now and recovery will be quicker!

Definitely better to be as fit as you can be before the op @myrosehasleftme - I found exercise a lifesaver mentally too (though I've always exercised) as I felt I was doing something positive to reduce the risks of recurrence too. I've had two weeks off because of my tonsil op but desperate to get back to it (though I have got into a bit of a sofa and scrolling routine in the early mornings instead that might be hard to break!)

Glad to hear Letrozole has been OK for you Rose I think a lot of people struggle with leaving the house when its dark, cold and wet outside - on the plus side when we go swimming its much emptier than in summer. I think the trick is something you enjoy. Ours also has a café so sometimes have a coffee with DH first. It helps with going with DH as we chat out of earshot of the kids.

Sorry the right person wasn't there Sierra

Hope blisters heal soon Top Some lovely outdoor swimming not far from you when the weather is warmer - I did the swim with seals in Lundy. They were watching us. 😂

Feeling quite grotty still, chest pains today, but improved with hot drinks and now have chesty cough meds as well as paracetamol. Painters are nearly finished outside of house, just half a day to go, yes.

This is a great thread, I'm 1 year out from Chemo, Radiotherapy and Brachytherapy for 3C2 cervical cancer.
Since I started the Radiotherapy I've had problems with my bowels, bleeding with BM's and even if I go and nothing is there (sorry for the TMI).
I had a colonoscopy in September, the verbal report was thinning bowel, very red and inflamed looking etc.
I've just been told it's Colitis and referred on to the Radiotherapy Intervention Team, has anyone had anything like this?
Obviously I'm grateful to be clear from Cancer, but this is pretty awful, between the pain and the bleeding.
Thanks in advance for any advice!

@catzrulz welcome to our happy thread. This is all about putting cancer behind us and working towards fitness and health.
I seem to remember radiation can cause colitis, shouldn’t it settle down with time? Hopefully they can reassure you.

@Silkiebunny there is lots of wild swimming here and a club called the Chilly Dippers who go in every day. I’m tempted but not ready yet.

@catzrulz welcome! I had bowel cancer and got colitis from my chemotherapy tablets. Mine presented differently to yours though, I had out of control diarrhoea so I was admitted for IV fluids. They also put me on a course of antibiotics as I was getting daily fevers, not sure if they did anything or it was just in case. And I took daily codeine and Imodium to basically slow my overactive bowel down and give it time to heal. I was taking so many tablets at one point I nearly rattled but it did work and I recovered. Hopefully your team will have some suggestions for you.

@catzrulz hello! I'm another stage 3 cervical cancer, finished treatment in July and had a clear post treatment scan last month.

I've got lucky on the bowel front - it makes a few more funny noises than previously and occasionally I get a bit of mucus but nothing that really impacts

However, I have come across several other ladies who have gone through cervical cancer and have ended up with colitis of the bowel due to the radio. Apparently oxygen treatment can help but I've no idea if this is available on the NHS.

I have text my PT and am having a 'lets see where we are' session on Monday. He's done a lot of rehab work in the past so hopefully he can come up with a plan.

I've been quite good at going to the gym - it's just when I go there I tend to spend more time in the pool, sauna and jacuzzi than doing anything too exerting... Even when I make it to the gym floor I feel I pootle about rather than doing anything constructive. This was a problem before cancer too hence why I got the PT in the first place. It's difficult as I obviously don't want to push myself too hard and leave myself exhausted, but I'm also well aware I have the capability to be a bit too kind to myself sometimes and recovering from cancer sort of provides a ready made excuse.

@ClashCityRocker @catzrulz If it's hyperbaric oxygen you can get this cheaply if there's an MS Therapy Centre near you (it covers lots of conditions not just MS).

Ah yes @SierraSapphire that's what I meant. I've met via the internet a few people who have had good results from it.

Gah! I’ve caught DHs bug off him and went to the toilet ten times this morning. I think it must be norovirus or similar. I’m just tired and aching now and drinking electrolytes. What a waste of a weekend. I’m pretty good at fighting off viruses as a former GP. Luckily I had nothing planned and DH took MIL for her weekly outing. Maybe I will lose some weight!

Hi again everyone. Have settled in a little bit now so will post my story. Diagnosed in October 2021 with stage 1 breast cancer and it absolutely floored me. My partner said he was actually more worried about my mental health than the cancer, I was in such a state. I joined the cancer support thread in a dreadful state and I can admit I had a complete mental health breakdown. I was in a terrible place. I was off sick from work for 26 weeks, and had to suspend my uni studies.
My treatment was amazing…diagnosis on 26th October, first chemo 18th November. I can’t fault the speed and care I received, but the shock was impactful. I had 12 weeks of carbo taxcel, then 12 weeks of EC, and I finished chemo on 14th April 2022. That’s the short story… isn’t chemo just the most terrible experience? My picc line hurt like a bitch ALL THE TIME. I did the cold cap, which saved my hair…up until EC. I then lost almost all the top part and sported a ‘friar tuck’ which was so distressing … and still makes me cry.

I returned to work mid May (far too soon really, but I couldn’t afford to take any more time off). Surgery was scheduled for the end of May, but I then contracted Covid, which pushed my surgery (lumpectomy) back 3 weeks, to the 14th June. I was very fortunate, the surgery went well and although I had an infection returning draining, on the whole it went well. I then had radiotherapy that august, every day for 2 weeks. I was put on oral chemo, as not only did I have close margins, but to try to prevent recurrence. I was due 8 rounds, but I was SO ill, they stopped it after 4. So my treatment ended on 26th November 2022.
I also had a referral to the cancer and palliative services psychiatric services. I was incredibly fortunate, I was seen after a 6 month wait and my therapist was amazing. I saw her until January this year, and this made a huge difference to my mental health state. Again, a very short version of an incredibly painful time.
So….now. I’m 2 stone heavier, and my hair has returned. I have degenerative arthritis caused by the chemo, my picc line site still hurts, I have brain fog, extremely fatigue, and THE FEAR. But… I’m here and grateful.

I returned to my degree studies in October 2022, and I’ve just graduated with a first with honours in a BSc in Mental Health and Wellbeing. I’m now on an MSc programme, and I was recently headhunted for a new job which I start later this month.

Sometimes I feel like the cancer happened to someone else, and other times I feel like I’ll never get over it. It’s weird, isn’t it?

Sorry, that was a lot longer than I intended, but I guess all our stories are. Sending you all love x

Welcome @TwoBigNoisyBoys I remember you from the main thread as you arrived just as I finished Herceptin for cancer no 1. I had 10 months recovery then got cancer no 2 and started all over again with the great cancer triathlon. I’m picking up the shattered remains now and am in much the same state as you except I haven’t done an MSc or had a breakdown. You are amazing to have kept it all together to get a degree. You should be so proud of yourself!
I can barely do the Herald express crossword these days.

Have you got a plan for your recovery?

@TwoBigNoisyBoys

Well done on getting your MSc despite everything. Your brain must be working ok in at least some ways to write an MSc dissertation and do everything that's involved in that eg lit review, your own research study etc. Damn impressive. I can't even work out basic apps (but you started and finished treatments before me, so I'm hoping my brain damage will improve in time).

What breast cancer did you have, reading about your chemo (considering it was stage 1) it was presumably TN, Her2 or inflammatory?

I also gained loads of weight and am now starting to work on shifting it so I can get into my own clothes again. I had stage 3 her2+++ hormone negative, with a similar treatment plan to you, but also 18 cycles of phesgo, full mastectomy and full lymph clearance. I am now trying to watch my diet and build up the amount of exercise I do again because during treatment I was so overwhelmed and often very unwell. I suddenly felt motivated about 2 months after finally ending the toxic treatments.

I also have cognitive impairment, neuropathy, fatigue, etc from the cancer treatments. I think it's the EC chemo, pacli, abraxane, trastuzumab and pertuzumab that caused it all, not the surgery or radio.

You were headhunted for a job, that is great news! Wishing you every success!

Thanks @TopOfTheCliff and @SummerCycling.
It was the BSc I completed earlier this year, and I enrolled on the MSc in September so that dissertation is still ahead of me!

Re my diagnosis…I don’t know. I asked it to be told the details, only the plans for my treatment and my prognosis. It’s on my hospital letters but I forced myself not to look at it, as otherwise I would have googled constantly and frightened myself. I was grade 3, I know that. But actual diagnosis…nope 🤷🏼‍♀️ I met others surging my treatment who couldn’t believe that, but I didn’t care. It helped me protect (what was left of!) my mental health, and that was a priority for me.

The weight gain is impactful isn’t it? I’m 2/2.5 stone heavier now. And I wasn’t skinny to start with! I’m trying to follow an anti-inflammatory diet but not with much success. I really need to get a grip on it because I know it’s not helping my fatigue or arthritis (which is in my knee and back). Plus all the other ailments I now seem to have.

Thank you both so much for your good wishes 🥰 x

@SummerCycling you are very hard on yourself. I am only just beginning to accept how brutal and damaging the treatment has been. After cancer no 1 I realised I no longer have the cognitive skills to be a GP so I took myself off the medical register. After cancer no 2 I am flobbing about like a jellyfish waiting for my brain to start working again. Maybe it will, maybe it won’t.

@TwoBigNoisyBoys it is whatever gets you through this shitshow. Denial is a pretty good coping mechanism for me. Looking away and putting your fingers in your ears is good too. I am learning to be compassionate to myself and accept what has happened with sorrow and some anger but also relief that I am still here. I hope that my plans for the Great Recovery work out even if it takes a year.

How many hours is the new job? Can you ease in gently because it’s going to be a big shock to the system. Wishing you all the best with it.

Welcome Catz and welcome back TwoNoisyBoys

So very sad to see the news about Mowly on the life limiting cancer thread.

Still getting over the cold / covidy thing here. 1/2 a days painting left to do then outside is finished and get house back, yay. Hoping will be well enough to resume swimming on Tuesday. Oncologist on Thurs but just to discuss switch to Letrozole. Christmas decs up sillily early here to try and cheer things up and Floof is loving them though keeps taking robin off.

I'm feeling very sad too after reading Mowly's post.