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

Hi all, hope everyone is enjoying the good weather (the weather is good where I am anyway) this bank holiday weekend.
I am sure this has been discussed before but I can't find where, short if reading the entire thread from the beginning. Does anyone have dry/sore/gritty eyes many months after chemotherapy? I had terribly water eyes (the right worse than the left) immediately after chemo for about a month. Then it all settled. Now it seems to be back. Sore, dry, gritty right eye. Could it be some long term effect? Or, could it be the chlorine in the pool (have been swimming a lot lately, but not getting my eyes in contact with the water)? Wondering whether this is just more of the same following chemotherapy and something I need to just learn how to live with. Or something unusual that I should get checked out.

Thanks Clash Your Norway trip sounds amazing.

Glad you are back on the boat Top though at first I misread it as you had slept on your friend. 🤔

Isa I am 1.5 years out from chemo so can't remember that well straight after but never had issues with eyes from swimming. After chemo my vision is a bit more blurry and also get allergy type symptoms, like hayfever, but had that before so maybe just continuing rather than chemo. I take anti-histamines. Could be conjunctivitis maybe if gritty? My eyes are fairly moist now.

Just having lunch then off either to a gardens or canoeing depending on who is coming.

Hi all, long time, I hope you are all enjoying the weather. I have not read through the threads as I have not checked in since the last thread. Just been busy with life's worries as always.

If anyone remembers my story, I am the lady who had to cut her herceptin sessions short due to having heart failure. My heart has improved only a little bit, and I should be getting additional medication to help further.

The new issue is body aches, terrible body aches all over my body for about 2 weeks now, i also have shoulder pain that comes and goes, headaches and a sore throat. I went to A&E today and they said my bloods are fine and it could be flu or a lack of vitD and sent me on my merry way. I am going to speak to my oncologist this week for a bone scan. I am so worried. Has anyone every had anything like this? Thank you

@Isaxx, no I never had gritty eyes but I do struggle with blurry eyes, I now use glasses for driving. Already used for reading. I do remember using drops for dry eyes during chemo though.

Sorry you are feeling ill Make and welcome back.

Maybe flu or covid (doesn't always show on tests) and hopefully will improve - I take cold and flu tablets if bad though have hardly ever been ill since chemo, covid once and used anti-virals and mild but think that needs to be day 1 to 5. Shoulder ache get occasionally then passes and think that's pretty common especially if on AIs / Tamoxifen but obviously if persistent or very painful get checked out. I have had a bone scan after chemo and another one recently.

Thanks @penguinsa I took a covid test yesterday, but it came back negative. I want to put it down to flu. I have never ached this bad. And the strange thing is ..the ache moves from my calf to my arm to my wrist and then to my feet and back again.. It's really weird, and yes, it could be the tamoxifen. I am giving myself a week's break to see how I feel.

I agree that that combination of things does sound like it's a virus, but I know the anxiety feeling that everything could be cancer @Makemineadecafplease

@isaxx I had blurry vision during chemo but my sight does seem to have returned to normal. Also agree possibly conjunctivitis. DD used to be permanently off nursery because of that it seemed!

Thanks @Sierrasapphire, my anxiety does not help it at all. I just worry because I have heart failure to worry about on top of everything. Cancer really sucks!

Hi @isaxx nice to see you again. I have awful dry sore eyes and was referred to ophthalmology. It’s posterior blepharitis and the specialist didn’t think it was due to chemotherapy but maybe exemestane. Our beloved Princess@tillly gave me some great advice up thread somewhere. Hot pad to eyes weekly, lid cleaning twice daily , drops 2 hourly and Hylo ointment at night. It’s a faff but it’s getting better except when I get sun cream in my eyes. Owwww!

Home from mad boaty weekend shortly. I moved my big boat 37 miles today to her summer berth with DH help. He was very stoic about getting cold and wet. It is so lovely to be able to do normal things again. I even managed to walk a mile briskly to the station and catch the fast train home with a minute to spare.

@Makemineadecafplease I get lots of random bone pain that moves about. I think it might be a sort of neuropathy from chemo, or it could be Exemestane. It is better than it was last year though.

Ooh train arriving at station, must go xx Top

Thanks for the tips @TopOfTheCliff. I will try the hot pad, lid cleaning, eye drops, etc. and see how it goes. I am so fed up of medical appointments that I will see if I can solve this one without for a bit before getting looked at. I seem to remember you mentioning eyelids stuck to eyeballs. Been there. Really unpleasant.

I love hearing your boat updates, @TopOfTheCliff . In my mind’s eye, I have you living in a kind of grown up Famous Five world of boats and picnics. Do you happen to own an island with buried treasure 😉?

That's great you had a boaty weekend again Top

Had a lovely day today went canoeing for 3 hours with DH in the countryside and saw herons, cows, lots of birds, ducks, swans and fluffy brown sheep, lovely sunny day and quite idyllic. Then went to the restaurant with DH, had a mocktail each, I had a strawberry daquiri one then had a meal with crab, avocado and fruit, sparkling water and a caffe latte. I did resist the lovely sounding Sunday roast which said it had 2,400 calories in. DH had fish, chips and peas, a mocktail and a coffee.

Now back home, had a bath and will have a tea and shortbread. DD has been out with her boyfriend all day, currently at dinner together and DS has been in the garden and taken a bath.

Hope everyone has a good rest of bank holiday weekend.

You will be delighted to hear that I had a pork pie and ginger beer for lunch. No buried treasure but lovely razorbills and gannets to watch out at sea.

@isaxx I have dry, sore eyes from pre cancer eye surgery. Letrozole has made it worse. I sleep with a usb heated eye mask on and it really helps. I also use lots of hylo forte. Both of these things seem to really help. Hope you can get on top of it.

Thanks @Top, yeah it could be random ache movement like yours. I feel only slighty better today.

Lovely pictures @Penguinsa

Haha I love the image of @TopOfTheCliff as a swallows and Amazon's type! Sounds a great weekend and that the sore ribs are a soon to be memory.

@makemineadecaf hope the pain improves soon. It does sound like a virus but I understand the worry.

I seem to have totally recovered from my stomach bug and am full of beans. This is going to sound weird, but it was nice to be ill from something that I knew 100% wasn't related to cancer or treatment. Just a nice, normal illness that lasted a couple of days and then buggered off.

Yes @ClashCityRocker I always identified with John in S &A. I was the oldest child, the responsible one, and a tomboy. I thought Susan was an awful wet blanket.
I agree with you about it being almost a treat to have a normal injury like cracked ribs which just hurt a lot then got better.
Today I shall be resting up and maybe gardening a bit.

I styled myself on George from the Famous Five. I was really pissed off my DM wouldn't let us have a dog, also that they didn't give me a name that could be shortened into a boys name. One of the major disappointments of my life was when they bought me a bike and it was a stupid girls bike when I wanted a Raleigh Grifter! I joke about it, but actually my mum was very disappointed that I didn't look feminine and pretty. DD has done a much better job in this respect!

Thanks @tam23 . Sounds like the way forward.

As to normal illnesses, yes, a relief to test positive for straightforward stuff like covid every now and then to explain away hacking coughing and aches. @Makemineadecafplease concur with others. Sounds viral.

Haha @SierraSapphire I was very much the same! My poor mother was so excited to find out she was having a girl and then got....me. I remember insisting my hair was cut short as boys didn't have to deal with stupid knots and tangled (which were a problem when you spent the day roaming through hedgerows and up trees).

Good day today, padel match, swimming and a PT session. My stamina is definitely improving. Restful day booked in tomorrow, nothing more strenuous than yoga and a bit of walking. It's been like summer until about ten minutes ago and now the heavens have opened and it's one of those glorious summer showers.

Thanks Make Hope you start to feel better soon. I think there's some viruses similar to covid or covid going round at the moment which are taking quite a while to go and if your immune system is weak will be longer but hopefully not too much longer. My DD has one, luckily kept it to herself.

Well done on all the exercise Clash I've had 3 days of exercising a lot in a row now and yesterday was feeling invisible, today feel more like a bus ran over me and been resting but much better now and good to have got so much done. DH was also very achy. Back to swimming tomorrow.

Thanks everyone, it does seem to be viral as I feel a bit better than yesterday, a part of my job involves going into hospital wards so I guess I have to mask up every time I go in now. I got the extra prescription for my heart, thankfully there aren't too many side effects listed but I haven't even picked it up yet but fingers crossed.

Good on you lot for exercising, more grease to your elbows and strenght to your joints.

Is anyone going on holiday this year?

Glad you are feeling a bit better @Makemineadecafplease
I overdid things a bit at the weekend and everything aches now. Must rest!

DH has booked us a mini break in Italy next week. Of course his dad will now go downhill but we haven’t been away anywhere (apart from York) in two years. You have made me realise I don’t have any nice spring clothes to take. Eek!

Did anyone try ice mittens and socks during chemo to avoid neuropathy? My SIL has been offered them but I have no experience to share, presumably as ice + Oxaliplatin is not a good combination.

I’m getting back to walking some longer distances again instead of my post surgery Granny shuffle around the block. Naturally this means it’s time to pick up a random virus. DH is in Darwin for work which is a 4-hr flight so teenagers and I will muddle through and call for pizzas as required. Had to cancel my haircut today which was upsetting but need to conserve energy for DD’s parent teacher meetings this evening. The final ones of her school years!!

I did ice slippers @Remaker - the nurse who I had the assessment with was pretty discouraging and said no one did this so I didn't wear them the first time, but I did start to feel some tingling in my foot so I wore them for the remainder and I have no neuropathy (but I also fasted which I think helped with getting minimal side-effects). I had to take them in a picnic bag with other ice packs, the slippers lasted for about half the time and then I used the ice packs the rest. With the cold cap on as well I was pretty cold and I took one of those heated pads that you can use for period or back pain to use in the last hour or so. I would definitely do it again, though obviously hoping I never have to!

DD and I are going to Spain in June @Makemineadecafplease - are you going anywhere? I'm really looking forward to it! We wanted to go somewhere a little bit more exciting, as we've been to Spain a lot, but it was the cost that dissuaded me. We're going to Almeria so a much more Spanish area and it's so much cheaper than more typically British resorts. All we really do is sit around the pool and mooch into town so it doesn't really matter that much where we are! Then hopefully going to the Lake District with a friend in July, got some vouchers to use in a spa hotel, but she's not great at booking things so I don't know whether this will happen!

I said I was going to give up my reckless spending money on stuff, but I seem to have failed to do that! Got a few other trips planned, DD and I are going to see Girls Aloud in a couple of weeks, I'm going to the Midlands airshow at the end of May. I have actually earned a lot the last month or so, but work is a bit uncertain from end of May onwards so I'm probably being a bit irresponsible, but whatever!