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

@Zoopet that is great news, but you have been braced against disaster so it’s really hard to feel relief and joy instead. Be kind to yourself, let the family and friends celebrate, and slowly it will spread through you that the cancer has gone and you are now in recovery.

After crying whilst walking the dog this morning I went to the GP got more antibiotics and Valium and then had a counselling session which was deeply helpful.

Teaching is not doing me any good. I worked out what my actual hourly rate is earlier, it’s not worth it. I’m going to leave and return to plan A and find something outside of teaching.

In the meantime I’m going to finish the placement booklets for the Community Development Diploma, do some volunteering and help set up a writers group at the local community centre, keep painting.

There has to be a better way, after all I’ve had a second chance at life and I can’t afford to waste it marking shit essays and working out which kid has used AI on their assessments. The good kids will work hard no matter who is in front of them. I’ve done my time. I’m now giving myself permission to put my self first.

I think that's a really good decision @FairyWren7 - I was a bit worried about you working so hard and being so stressed, do you feel relieved now you've made it? I've got my job interview on Thursday, I think I do really want the job. I am so weary of freelance stuff.

That's great news @Zoopet and I agree with @TopOfTheCliff that everything takes a while to settle in, and actually the fear of recurrence hangs there on and off. I never managed to achieve the grateful mindset.

My mum is still in hospital, but my mind now is turned to my check up early tomorrow. Having someone root around your vagina is crap as it is without the worry that they'll find something. Still, if it's all clear, I will feel a lot better so just need to focus on that.

What lovely plans you've got @FairyWren7 . I really like the idea of your writers group.

@SierraSapphire What a world we live in as cancer survivors. I hope the rooting is not too grim and the results are reassuring. Sorry about your DM too. Did you decide about your holiday? It’s so crap not being able to plan. My dad is not doing well and has his results appointment in two weeks. I spent the weekend with him and am trying to visit more but to worry less when I’m not actually there.

In recovery news, I managed two short runs over the weekend (bloody hard) and swam 40 lengths this lunchtime which is the most I’ve managed since my lymphoedema surgery. My arm felt sore but usable.

DD1 is home from uni for the summer. It’s so nice having all four of us under the same roof for a bit.

@FairyWren7 : that sounds very wise if you can make the money work. Life is too short and precious to spend it on something you can’t love.

Hope the checks go OK and you get the all clear Sierra

Sorry to hear about your Dad Dotty. Well done on the exercise.

Glad you are enjoying your boat again Top

DD has now done the maths A level exam today so just one maths exam left on 20th and A levels are done for DD. Awaiting plants from RHS which will hopefully plant tomorrow. Hoovered all upstairs whilst DD at exam and can make noise to de-tabby the carpet.

Great news Zoopet

We're going to go on holiday @dotty2 unless DM is at death's door! I don't think we can get any money back, we're too late to move it and I don't think we'll even get a travel insurance pay out as it's pre-existing condition. What 91-year-old hasn't got a pre-existing condition?! Even if we decided we wanted to lose the money we could still end up in this position in a couple of months if we rebooked. I don't feel as I can really look forward to it though because I'm not convinced it's going to happen, I won't start to pack until a couple of days before! DM is still in hospital and even with visiting it's difficult to get any information out of staff about what's happening. I try not to worry about it but we've had five years of this and it feels like it's now just baked into my body that every so often I'm going have to drop everything for a crisis. DD, home for a few weeks before her last placement, is being amazing though, as a student nurse and without the same history with my DM she is doing a much better job of cheering DM up! She said tomorrow she's going to take some clean clothes and the wheelchair and push my mum downstairs to the cafe.

I failed a bit on the exercise today, but will hopefully go to the gym after my appointment tomorrow assuming everything is okay.

@SierraSapphire try and go on the holiday. Seize the day!

Thanks for the words of support all.

We’ve got the cold wind here at the moments. It’s 7am and I’ve had not much sleep. I feel very anxious about going in today. Year 12 have another practice exam which we’ve barely had time to prepare for. It’s like I pick up their stress…

People rooting around in your bits is not fun @SierraSapphire Take some painkillers first if you need to.

I hope I can get through today without a nervous breakdown.

I’m sending strength and calm across the world to you @FairyWren7 . It will all be fine!
I had an excellent physio session today, with some weightlifting added. I love that! It makes me feel super strong! Afterwards I went for a bike ride with DH and rode about 18 miles on a non electric bike. We had coffee and cake and it seemed like a glimpse of life before Cancer. I’m very happy with progress and enjoying having enough energy to get housework and decluttering jobs done as well as my exercise sessions. DH is back for two days then off again. I’m not sure what I am going to do while he is away. I might go on an expedition to Cornwall!

Good luck for today @SierraSapphire and @FairyWren7

Congratulations @Zoopet although I felt the same as you when I had good news following surgery - although I was relieved I didn't feel particularly happy as I was still recovering from surgery and chemo, and annoyed about getting cancer in the first place and losing my breast, hair etc. I do feel better now though, I think it just takes time and I also find I'm much lower in mood when I'm not feeling great physically.

I've been referred for physio as I've been getting a lot of joint pain and my rheumatologist thought it may help. I have a form to fill in so am looking forward to listing all the things wrong with me!

It sounds like the perfect day @TopOfTheCliff , it's good to hear things are going well. If it doesn't rain I am going to the park later for a jog/walk.

@demivolte is your joint pain a recent thing or did it develop after cancer treatment? I can’t decide if the pain in my hands and feet is from joints or neuropathy. The joints are a bit tender but not swollen or red. I also have weird burning from my eyelids with crusting but it’s not the same as my blepharitis. It’s like acid on my eyelids. The best thing on them is Vaseline.
Today I shall rest, clear out my shed on the overgrown allotment, then go to an exercise class tonight. Onward!

Turned up for my 8.45 appointment, which was rebooked when it was cancelled on the day on the 1st of May, and only rebooked when I phoned up a couple of weeks ago to query what had happened. At 9:15 I was called by the nurse specialist and told they'd booked me into the wrong clinic, I was supposed to be booked into a clinic on a Tuesday afternoon. At that point I reeled off all the other appointments they booked wrongly for me, including my first day of chemo and said I hadn't been examined since November when it was supposed to be a four-monthly check. I didn't cry or anything, was perfectly calm! Anyway, I was seen and everything looks fine, so that's good news! Was going to go to the pool, but DD is heading home from her boyfriend's so I will probably just hang out with her for a bit. DM texted me this morning and said she's been moved to a place that doesn't actually appear to exist, so God knows where she is .

That's great looks all clear Sierra and well done on staying calm.

Will hopefully be gardening later today with DH weather permitting, our 2 green bins have just been emptied and have about 10 plants from RHS to plant as well as me versus ivy again but that is quite satisfying 🤣

@SierraSapphire - I'm pleased you got some reassurance, but not about all the appointment nonsense. Honestly, as if things weren't stressful enough then there's all the admin farrago. Hope you track your DM down.

Mainly working today but planning a walk or run at lunchtime.

@Penguinsa - I also quite like battling ivy. I enjoy dealing with big, obvious weeds but hate ambiguous or fiddling weeding. My least favourite gardening tasks are those which require judgement. I do enough thinking in the rest of my life!

Great news @SierraSapphire , aside from the appointment issue. Well done on getting it resolved.

@dotty2 I dislike fiddly weeding too, and it always grows back so quickly.

@TopOfTheCliff my joint pain is longstanding but has been worse since chemo. I have a condition similar to lupus and had to stop the medication I was on for that in order to have chemo, and I thought that was why my joints were painful (plus the effects of chemo). I'm very stiff when I get up from sitting and when I initially stand up my feet are painful. Activity makes it worse and it is waking me up in the early hours. I also thought the foot pain was neuropathy but I'm not so sure now, and the neuropathy in my fingertips is easing. I'll see what the physio thinks.

Your eye condition sounds very unpleasant, have you seen anyone about it? I have dry itchy eyes as part of the autoimmune condition, it can be pretty annoying.

I called my DM and she said she'd been moved to the local hospital, so I asked her to ask what ward she was on, and she said the name of the ward she's been in for the past few days - turns out she's not moved anywhere! She's said she might be coming out today, but she doesn't seem to know what's going on so no idea if that's true, waiting for the nurse to call me back. Interview tomorrow so my brain feels like it's going to explode!

Glad you got your appointment and all looks good @SierraSapphire but sorry for the troubles with your mother. Hopefully you'll smash the interview tomorrow.

I am about 90% set for Norway, just need to pick up a couple of bits, water purification tablets and all that jazz.

Despite investing in new thermal underwear and some fleece lined waterproof trousers, the forecast at this stage is actually looking better than the UK. Although TBf in that part of the world things can change quickly so have gone for lots of layers that can get added to or removed as needed.

Oscillating between excitement and panic now!

Have a great time @ClashCityRocker - good decision (I think possibly encouraged by Top) to stick with it all those weeks ago!

Absolutely! Without @TopOfTheCliff and the gentle encouragement of you lovely lot I suspect I would have wussed out by now. I'll make sure I post some pics!

Ah, that’s nice to hear @ClashCityRocker Have a fabulous time. (I went for a walk at lunchtime and could have done with some fleece lined trousers here tbh! Fed up of it being so cold)

@SierraSapphire I think it could well make a big difference to your quality of life if you stopped going to A&E at night with your Mum. I stopped when I started chemo because I knew I was going to be on chemo and targeted therapies for 1.5 years or more, with low immunity and likely feeling weak / unwell etc. Then I discovered that when an elderly person is alone in A&E they get seen faster than when they have someone with them. Possibly triaged as more urgent? I struggle with fatigue now anyway, let alone if I went with my Mum to A&E, you are truly amazing how you still do that. You need your holiday though!!!!

@FairyWren7 Completely understand your decision. I don't know how school teachers cope when they're completely well, let alone when they have / have been through cancer. I hope an alternative works out well for you.

@ClashCityRocker So happy to hear you're going to Norway!!

@TopOfTheCliff My bones and joints are shocking on the MRIs done this year. The degeneration etc is rather drastic and the great majority since cancer treatment (started June 2022 and finished October 2023). I don't know which particular thing or combination has done it - Epirubicin / Cyclophosphamide / Filgrastim / Dex / Aprepitant / Ondansetron / Domperidone / Paclitaxel / Abraxane / Trastuzumab / Pertuzumab / Surgery / 3 weeks radiotherapy / cytokines / stress of dealing with oncologist 'poor' prognosis / other in reaction to it etc etc who knows...But my body feels like it's aged a LOT.

Hmm @SummerCycling I recognise everything on your drug list except abraxane. I had six months of Capecitabine too as a bonus last summer. In fact my menopausal arthritis aches went away during chemotherapy but come back in waves now, with the eye symptoms. Exercise definitely helps the stiffness and I am slowly getting slimmer and stronger. Losing a stone more will help my joints a lot!
My intelligent scales are telling me I have the body of a 70 year old. I feel it too. But there are two options: give up and accept an aging body, or fight hard to lose weight and get fitter so I can continue my active outdoor life.

@ClashCityRocker don’t forget we are coming with you as your virtual crew! Every time you are flagging, and feel it’s all too much, remember how far you have come and how proud we all are of you for being brave and going on such a brilliant adventure! Yes please to the photos!

@SierraSapphire another vote here in support of the decision not to go to A and E at night with DM. You need to look after yourself first! Then you will be able to support her better.

Just did a couple of hours gardening with DH and pretty worn out now, we filled one and a half green bins and 4 black sacks from me clearing shed. DD has been out with her boyfriend.

Have a wonderful time Clash

My joint aches and pain have improved a lot and my last bone scan was more or less stable. Though my scales do make me 2 years older than I am post chemo but I felt about 20 years older immediately post so I'll take 2 if a bit insulted. They also reckon I have excellent muscle mass so I forgive them. Still got 1kg to go but exercising a lot and back to pre cancer normal bmi definitely helps as well as the odd vitamin. Glad I don't have AIs though.

@TopOfTheCliff @SierraSapphire

I’m also dealing with joint pain in my hands. To me it looks like arthritis also getting ezma and scaly scalp.

The markathon continues at work. I think I’ve spent 70 hours marking this term.

I’m cross with myself today that I can’t stick it out but I can’t cope with the stress.