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.

Sorry you have covid ISA. I had covid a couple of months after having chemo. I did get the anti virals as they like you to for a year after the chemo and radio ends. Wasn't very ill with the covid compared to previous time had it then took anti virals and they made me nauseous etc but I was better quickly. Bloods always normal.

Marjorie It was interesting to see another make of them so thanks for mentioning it.

Hope op goes well Sierra and hope procedure goes OK Tilllly

About 4 weeks off Tamoxifen on the 6 week break, and my face and neck are so much less puffy, getting back to normal, insomnia is a bit better, maybe 50%. Its interesting to see difference. Rest is same.

My oncology team just gave me their update guidance and they recommend you contact GP or call 111 and they assess you for treatment. It's needs to be within 5 days of symptoms starting. I hope you feel better soon!

@TopOfTheCliff - yes definitely feeling a bit useless! You are so near the end you can only start to feel better as the drugs leave your system, hang on in there!

Anti virals have to be started in 5 days of symptoms started and first you have to play the game of guess how you get hold of them. In the end I called chemo line and they put through to right person in hospital who got them corriered to me that day but 24 hours before of people who were like GP who🤔no idea

That sounds about right! I have been given a number for the covid medicines delivery unit but they're local numbers so not sure if it will be relevant to you! I'm in Sussex, treatment in Surrey. Let me know if that's any good to you?

@isaxx I had Covid last Christmas just after my last dose of IV chemotherapy. DH got it two days before so we cancelled all our cherished plans and hunkered down. I tested positive on Christmas day. I felt quite unwell despite 5 vaccines at that point so rang the chemo ward and they got the Paxlovid couriered to me on Boxing Day. One dose and I felt better. It was amazing but made everything taste of metal. This year we are going into isolation ten days before Xmas to avoid a repeat.
Trudging along here. Bloody poisonous pills I hate them.

I’m just having a quick lurk to see how you’re getting on Top & counting down the days with you.

I start my week of cape again today, it’s agonising, this is the most toxic drug I’ve ever been on and I’ve had two different types of IV chemo. I’m on a lot less than you as well, but I’ve got to stay on it for at least another four weeks so they can decide if it’s working or not anyway. And I bet the fecker isn’t working! Nasty little pill,

Wishing you the very best of luck though because YOU are nearly finished!

Hi @mowly77 nice to hear from you. It is galling when the nurses trill out “Cape is a much easier drug than IV chemo” just because they don’t have to administer it. I have felt more crap on 5000mg of Cape daily than all the FECT Herceptin and ECT I had . The fatigue is extreme and I can’t walk for blistered feet. Hopefully the long term treatment is at a lower dose so it’s not as bad but fuck me, if they said I had to take it forever I’d be stopping treatment. I truly hope it works for you and you can stay on the lower dose. How’s your little one getting on at school? We are minding our 7 year old great nephew today and DH has gone into hyperdrive playing with all his big boy toys. I’m resting while they go for a bike ride.

Cape does not sound fun. Sorry to hear about those of you having to take it. Not much longer hopefully.

Thanks for the responses regarding covid. I phoned and got prescribed paxlovid. So, I'll see how it goes. Had to walk 45 minutes (they don't deliver) to get it as that was the nearest pharmacy to stock it and I didn't want to infect anyone on public transport. Just as well I don't feel too bad. Got my day's step count in (almost 9,000). Someone else could have gone for me of course but it's a nice day so I figured I'd get out.
On the more agonising end of the spectrum of events am waiting for the results of a punch biopsy done last Wednesday on the nodule on my arm (second biopsy as the cytology did not test the nodule wall). Was told on the day thar the consultant would call me some time this week. I expected that to just be a quick call. Turns out a full telephone appointment has been booked for me for Friday. Why is a full appointment slot needed? My mind has now gone into fear mode. Just as I thought my only immediate issue was covid..

It’s half term! Yes! Aghhhhhhhhh. That’s very cute re: your great nephew and the toys though and the bike ride.

DD is doing so well at school and loves it & I even managed to drag myself to her end of term showcase last week and she was so delighted. They sang a little song and took us on a (short, thank fuck) tour of the beach and harbour with little maps they had made. She hasn’t ever been around the whole day let alone week when I’m really sick so I’m worried and I have no energy to do stuff with her so really hoping cape is kinder to me this week. Pfff.

Today DH has taken her to a 100 acre wood type thing or maybe just a wood … she loves Winnie the Pooh & I’ve been really trying to tell DH that she expects to see all the guys … bless her …. and that to manage her expectations! Let’s hope all is going well and that DH also doesn’t have some sort of half term ASD meltdown as well.

I would be enjoying the peace and quiet but next door are having all the paint stripped off their house and their brickwork repointed. The house is shaking so much I’m sure it might come down (quite shoddily & quickly built nineteenth century terrace for then- railway workers on the world’s first passenger steam railway!)

I’ve downed my first pills of the week anyway & shuffled very slowly to the post office and got a few groceries so I’m proud of myself & now rewatching Schitt’s Creek.

You are so right about nurses and even oncologists saying cape is ‘easy’ because it’s a tablet you take home. Even on my piddly 2000 a day it’s the worst regime I’ve ever been on. But last week the heartburn was controlled by the Lansoprazole a little better and I only vomited 2/3 times so there’s a sliver of hope. Quite a few help groups for Cape say gastric side effects can wear off after a few weeks so I’m holding out for that.

Hope you can rest and relax and get through the next few days and then start your Great Recovery in earnest soon.

I had to have a biopsy earlier in the year, it turned out to be just tissue granulation from my scar but it was also a terrifying few weeks. The full appointment doesn't necessarily mean anything though, it may just be something that needs to be followed up that isn't cancer, but I know exactly what you mean about reading into it, I've mentioned a few times as well around how the NHS is administrative procedures can be quite traumatic.

If anyone is struggling with exercising. I can't stand for very long and have to sit down - I was recommended this youtube video.
It's only 18 mins and I started with the intention of just doing 2 songs but I got to end 😁
And I love motown

It was hilarious seeing DH doing childminding. He had GN7 chasing squirrels, flying his drone, then took him for a ride in his classic sports car, then we went for coffee and sticky cake, then they went for a bike ride together. He was such a sweet polite child we will happily have him again.

Bone scan is now scheduled for Wednesday with a 20 mile drive to one hospital to get the nuclears injected then back to home base hospital for the scan, avoiding pregnant ladies and children as I go. What a relief! And what a nonsense that the NHS can’t fix its machines.

Glad bone scan is sorted Top Well done on getting through another treatment.

Glad you got a week in a cottage from SomethingToLookForwardTo Mowly and hope you have a lovely time.

Just went swimming and did 150 lengths x 15m then came back and cleaned downstairs bathroom before a lovely bath. Then opened e-mails and said results of CT head are in, opened it and there quite a lot of commentary but I think its basically all clear. Go in on 9th November to see oncologist to discuss letrozole after bloods. Currently said to have 6 week break from Tamoxifen.

Hopefully the kitchen is finished tomorrow and boiler serviced and they take all their stuff, what is it with builders leaving their stuff. 😂I agreed to 2 weeks, its now 2 months. They are great but really. We have 2 ladies painting outside of house, just did today and will do Friday this week as half term.

@TopOfTheCliff I’m glad you’re finally getting the bone scan done though it’s a shame it involves two hospitals! I am in awe of you managing your huge Cape regime. I did 3 cycles of 3500 and one of 2500 and I was very happy to see the back of those little buggers. It doesn’t feel like ‘real chemo’ to others but I found it a mental battle to swallow the tablets every day. @mowly77 I’m sorry you’re struggling with them too.

I had a blood test this morning which will determine whether I need a liver biopsy or not. Bit poor DH’s head off about something minor and then about 3 hrs later realised I was probably feeling stressed about these results. I’ve been alcohol free for 10 days while I’ve had a chest infection so hoping that would have made my grumpy liver a bit less grumpy.

My first session of acupuncture has definitely made a difference to the neuropathy in my feet though they’re back to being cold again. It’s 29 degrees here today and I’m wearing socks and Ugg boots.

@Remaker thank you. I really did doubt that I would manage eight cycles feeling so dreadful but I am very stubborn and it is a matter of pride that I have taken the full dose of every treatment I have been offered in three years. I can put my hand on my heart and say I have done everything I can to beat two cancers and if either come back I will have no regrets on that front. Now I just have to get through the bone scan and annual mammogram to prove it has worked. Then scrape up the battered remains and try to reassemble a functioning human being again.

I like the idea of a holiday cottage but DH doesn’t stay still for very long. I am planning a trip to York to see friends and the Christmas markets. Any tips welcome. Feet still raw so can’t do anything else today.

Ah Top you should indeed be very proud of yourself! I think my lowest point came just after finishing treatment - you look forward to treatment ending so much and then it dawns on you just how mentally and physically battered you are from it. I suppose all you can do is let time take its time.

York is lovely and beautiful at Christmas time. I'd try and avoid weekends as they're rammed for the Christmas markets. I like to go morning or weekday evenings. They have Thor's tipi in the museum gardens this year I think, that's always fun. Plenty to do, see and eat in York so you should be well serviced whatever you fancy doing.

@ClashCityRocker that’s helpful. I have booked a swanky hotel with a minster view as a treat, and we are visiting DS GF parents too. I deserve a treat! I’m feeling very relieved and thankful that I have finished treatment at last. I had the bone scan today too so can switch off my brain for a few days now. Phew!

@TopOfTheCliff congratulations for getting to the end of treatment! You certainly deserve a treat. Enjoy!

Congratulations Top Enjoy York. You deserve many treats.

Congratulations @TopOfTheCliff you deserve every possible treat.

Well done @TopOfTheCliff you got through it x

Thanks friends but you all know the joy is restrained. I still have to believe it is done. The bone scan results will help and I have a mammogram due in November sometime and a review with my oncologist at the end of November. By then I might just begin to hope I’m winning! Meanwhile DH has cooked pancakes with bacon and maple syrup to celebrate. Scores a fat zero on Zoe but hey, let’s party!

Well done @TopOfTheCliff - you've been a star! Fingers crossed it's all good with the bone biopsy and you can begin to relax, especially once the November appointments are done.

I'm in hospital today having an unrelated procedure (planned), I should be let out later. I had a GA but honestly it felt like nothing compared to all the cancer stuff, I know beforehand I would have been more worried. I've got a couple of weeks recovery time but I'm looking forwards to just having some time to chill at home. I'm desperate for a cup of decent coffee right now though!

Well done @TopOfTheCliff , enjoy those pancakes and the feeling of another step out of the way! I'm on a short break with my sisters and kids by the sea, carb loading with the odd kombucha thrown in to make myself feel better.