The Great Recovery part 2 - After Cancer treatment what next?

[TopOfTheCliff]

You may have finished treatment for cancer, be NED or in remission, or it’s just a lull between storms. You don’t want to dwell on the past but look forward to the future. You know you need to eat well, get fitter and pick up the strands of life again. This is the thread for you with fellow travellers. Join us!

There is the General Cancer thread for those in active treatment:
https://www.mumsnet.com/talk/general_health/4969445-cancer-support-thread-92-christmas-happy-hour-at-the-patience-inn-7pm-tonight?page=10&reply=132553156

And there is the Stage IV thread for those whose treatment is ongoing:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=132555664

@TopOfTheCliff Italy is my favourite country, where are you going there?

No holiday booked but DH and I are hoping to go away for a few days in September once the school holidays are over. I've also got a long weekend in London at the end of May. I'm looking forward to it but I don't know how my energy levels will hold up. GP has told me I'm very anaemic but hasn't given me any treatment yet. It is severely hampering my ability to do things.

@Remaker I used ice gel packs for my hands and feet when I was having docetaxel. They were pretty chilly! I have mild neuropathy but I didn't always change them for new ones after 30 minutes which is what was recommended for my chemo (as I have terrible circulation anyway and my hands still felt very cold). It meant I couldn't use my hands to read a book, eat etc during that part of the treatment, which wasn't a major issue but just something to be aware of. I would use them again if I needed more treatment.

I didn’t use ice packs in 2020 for FEC-THP and didn’t get much neuropathy.
In 2022 I had AC-T and read about ice packs. I bought some Halo gloves and mitts on Amazon and took them into the ward in a cool box with spare cool packs. I started them just before paclitaxel (T) and carried on till 30 minutes after which was about 90 minutes. My hands are fine, I just lost sensation in my feet in toes 2,3 and 4.
The nurses and oncologist were interested but said there isn’t enough evidence of effectiveness for the NHS to invest in ice. One study from Japan suggests it helps. I couldn’t see any disadvantage in trying it.

I am now on DFIL duty so sitting in a stuffy bungalow surrounded by “treasures”. Naturally the weather is gorgeous while DH and I are cooped up.

Oh I have heard good things about Spain @Sierra just never had the chance to go yet. We are hoping going to Malta at the end of May, I hope my energy picks up before then. I am just going to lay beside the pool and do nothing but eat and read my books. I need the rest.

@Missmarples I hope your energy picks up before end of May so you can enjoy your weekend away, maybe chase the doctors again that way you would have been taking something for it three weeks before the time. I had a lovely time in London in February with my cousin, I really like visiting London.

I never knew I could used ice packs for my hands @remaker otherwise I would have possibly prevented the internal pain /carpel tunnel syndrome I sometimes have with my hands these days especially in winter, i also used docetaxel. I was only told of the cold cap which I did not use.

The nurses and oncologist were interested but said there isn’t enough evidence of effectiveness for the NHS to invest in ice

I'm pretty sure somebody said on another thread that the Christie in Manchester has them, which is a specialist NHS cancer hospital for anyone who's not familiar with it.

@MissMarplesNiece DH has been itching to visit Florence so we are getting a cheap flight to Pisa then train into Florence for days trips. I went once as a penniless student and loved it. It will be fun to go back.

Glad you are starting to get better Make. Hope you get to Malta.

Hoping to go to Borneo to see the orangutans etc, originally booked in 2019 for 2020 though have to work around DDs A levels and uni starting but a long summer of June to early October, my DIEP may be this year NHS permitting and DS but hoping to find a way. Want to go to Sepilok for the orangutans and sun bears and proboscis monkeys and Kinabatangan river for jungle and wildlife and will be via Kuala Lumpur. I still have the Air Asia flight credits from 2020 to use for the Borneo flights though prices have doubled for flights. Hotels and food are still quite reasonable out there. DD will also go on holiday with her boyfriend.

Enjoy Italy Top I loved going up the leaning tower of Pisa, best to pre book if haven't done that and want to. Hope everyone enjoys their holidays.

I used ice gloves and socks just off Amazon and ice in mouth and even frozen peas on my head. I do think they helped though still had bad neuropathy during chemo. I ate ice lollies all chemo and actually my teeth have survived so well and no mouth ulcers or change of taste. Though I do have neuropathy down one side of face and wonder if I just shifted chemo there.

And that lovely big toe nail thing a few of us have I bought one of those fungal infection kits from the supermarket which includes nail files and filing it down is revealing a nail fine underneath. Will take a while and don't know if this will be enough but in 2 days its already looking 50% better.

@TopOfTheCliff and definitely pre book for the galleries in Florence too. We went last year and booked the uffizi but not the academia (for David) and queued for hours there

I hope you make it to Borneo, Penguins but you might need to change your user name!

Thank you so much for the ice pack reviews! SIL was told that there is evidence behind it. I think she’ll probably try it and see how she goes.

I hope everyone enjoys their holidays. Very envious of being a cheap flight away from Spain or Italy!

Thanks @Penguinsa, your trip to Borneo sounds like an adventure.

Speaking of trips, how are you all getting insurance for your trips?

I use Insurance With - I think it was set up by a woman who had actually had cancer. It's obviously more expensive than insurance used to be but not prohibitively so, and when we had to make a small claim for DD, they were very quick paying.

I'm kind of on holiday today, but my work situation is unclear but when I go back, I've got a bit of work but not enough, so I'm not feeling entirely at ease. I think I might feel as I need to do a little bit more business development to make sure I've got an income when I get back. I do need to rest properly as well though. I'm going to see DD for a couple of days tomorrow and Saturday and intend to get to the outdoor pool as much as I can whilst the weather is nice.

Also try All Clear for insurance.

Bizarrely Tesco were the cheapest for me when I'd not long finished treatment.

My DH has annual world wide travel insurance through his bank and when he phoned them to ask if there is any extra cost for me after my diagnosis they said not. As long as I have finished active treatment and am NED and just on long term prevention they will cover me.

I’ve been working on my boat this week. Yesterday I replaced the sink taps lying under the basin and tracked down a faulty water pump. It’s right at the back of a big locker and I had to wriggle like an eel to reach it. It makes me very happy to be back to my usual pottering.
FIL is having a good week with DH in charge. Yesterday he (FIL not DH!) was laughing and chattering away unintelligibly. The Hospice are hovering again but no sign he is checking out any time soon.

On insurance, would the EHIC/GHIC card not cover most scenarios? I have not been taking out health insurance for trips within Europe, though this may be unwise. Just relying on the above.

I think (though not an expert!) it's the cost of flying you home under medical supervision or keeping you accommodated until you're fit to fly home that would be the issue. The only thing I've had to claim for is DD tonsillitis and it was very quick getting antibiotics in a practice that was set up for tourists so didn't really interfere with our holiday, not sure what the situation is in different European countries, but I can imagine what a hassle it might be access the NHS here as a tourist!

I am taking mine with the travel company for my Malta trip, paid a little extra due to medical history. I agree with @Sierra its the cost and accommodation, if you were to (God forbid) fall ill or break something. I do have the EHIC/GHIC card though just incase.

I am feeling much better today, still achy all over and hip pain still present, but i am on antibiotics which helps with the cough. I have been referred for a bone scan. GP did mention it could be arthritis. Fingers and toes crossed.

I hope you are able to enjoy the sun when you can today.

The EHIC means you get treated the same as a local resident in case of accident or illness while in a European country. Including any co-pay arrangements that are normal in some countries. It doesn't cover a lot of things that travel insurance covers, relating to the fact that you are on holiday, may have bookings for various activities thar you miss out on, may have family members needing appropriate arrangements while you are in hospital and may miss your flight home due to being in hospital even if you don't need a full flying-doctor service to get you home lying flat on a hospital gurney.

I wouldn't rely solely on EHIC/GHIC cover but I did end up having to buy an insurance policy that specifically excluded anything cancer-related because I had a holiday that had been booked before I got diagnosed. The doctor was happy for me to go, I was well enough to go, and treatment wasn't affected but even specialist cancer travel insurance wouldn't provide cover if I couldn't answer that yes I had finished treatment. I just wanted basic cover in case I was knocked over by a bus or something!

I finally got back to my exercise program today. Only 5.5 weeks post hysterectomy so very much a modified program to protect the abs and pelvic floor. Not to mention my bloody elbow although that is significantly better thank goodness. Am off to acupuncture today, I always feel a big improvement in my feet and elbow afterwards so I’m looking forward to it.

@TopOfTheCliff your recovery is coming along in leaps and bounds!

@Makemineadecafplease good to hear you’re feeling better. Everything crossed for a good result from the bone scan.

@Remaker Are you seeing a personal trainer or physio for your exercise programme?

Yesterday I went out for a walk around the archaeology trail at Lake Brenig. It was only two and half miles long but was very strenuous (for me) hill walking. It was quite an achievement for me, I haven't done a walk like that for a long time.

I had a fab afternoon at the gym yesterday, hanging out by the pool (I did swim too for some exercise) - just like being on holiday (that's a protein shake!)

Now on way up north to sweat in the city and see DD. Sad I'm missing the pool but obvs will be lovely to see her!

Wow @SierraSapphire that looks tropical!
I’m a bit achy today as I served 59 meals to hungry sailors last night. It was very satisfying as we made over 100% profit on a two course meal for £5. DH had a call from the Marie Curie nurse sitting with DFIL to say he was failing. He rushed home but of course FIL has stabilised again. The hospice team are amazing they are really looking after all of us not just FIL.
I am going to yoga today then a gentle sail later if DH feels like it. We have a big bike event to organise on Sunday so he is very preoccupied. Life is complicated but satisfying at the moment. I wouldn’t have it any other way.

@MissMarplesNiece I have been seeing an exercise physiologist. She’s based at the cancer hospital where I had my treatment and she’s been great, has modified the program to keep up with my changing needs. My program is on an app and I record every time I do the exercises, if I had pain and any comments.

@SierraSapphire that looks lovely!

Lovely to hear everyone’s news - great travel plans.

We got out for Korean food last night and are going on an overnight trip away this weekend. I’m having to strategically nap to have the energy to do stuff like this and work but at least I can do it! Artwork is going well, have painted more this week! It’s very relaxing!

School is still tricky, shock resignation of principal, senior management out on a trip and stand in principal sick with Covid! But I’m on top of my workload :) Observed some of the members of my team - I’ve got some great young teachers who are so dedicated and hard working!

Hope everyone has a good weekend. Had my flu jab and have an appointment with the blood Dr this week.

Be lucky!