The Great Cancer Recovery part 3

[TopOfTheCliff]

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!

Here are some resources we found helpful:

The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/

Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward

Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html

Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/

Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients

Any more suggestions? Post them below

There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

Just checking in all. Really loving my time back in the UK. I have basically regressed to being a teenager… back with my group of friends and cousin, we’ve been out seeing loads of gigs and dancing.

Yesterday we had a BBQ at my cousins, swimming in the pool, singing along to my friends guitar playing.

Had a bit of a visa issue which has been sorted out thankfully. Permanent resident but I needed a bridging visa as the citizenship thing is processing.

@TopOfTheCliff thanks for those kind words. Unfortunately my mother is seriously mentally unwell. I’ve done my best with her this holiday, but she just gets so angry about everything. It’s actually very stressful for me to continually spend time with her and it was making me very unhappy as I was constantly having to reinforce basic boundaries. We are still talking but I’ve had to literally and physically step away from her several times this holiday and tell her that she is crossing a major line and that I will not accept it. It’s exhausting. She’s a vortex of hate.

Anyway enough of that, I’m painting - really enjoying it. Beat Dad at scrabble - got 195 score, Dad was 146 or something. I got 32 with the work Qi - life force. I feel a lot happier in myself. The relationship with my cousin who was my best friend has been rebuilt - we got matching tattoos done the other day and I got my ouroborus done. Beef rendang is cooking in the kitchen.

Its also Dads 79th birthday on Saturday and I have a cunning plan!

Jarod and the furry ones are well. He’s off to Tassie on Wednesday evening to do Icon - I hope the weather settles well and then he’s off to Queensland.

I’ll catch up on the thread. Sorry to just chat and run! Xx

@dotty2 I also find the radiotherapy very stressful.
Doing it daily atm (10 more sessions to go.)
It doesn't help that I have arthritis in my right shoulder and keeping my hands above my head is very painful.
Then, I'm either holding my breath too deep or not deep enough which stresses me out even more.
I do feel very vulnerable under the machine and the radiotherapists are very professional but I hate that I feel like a lump of meat being moved about.
Also I didn't expect the radiotherapists to be young guys and I cringe at the sight of my old,flabby, scarred boob myself.
I know I'm being ridiculous and they are professional but I feel totally demoralised after each session.
I can't talk about it to my family as they think I'm doing really well but tbh I'm finding it worse than the chemo.
Feeling shit atm tbh.

Really sorry it's a crap experience @Zoopet - I would struggle with men. I turned on radiotherapy because when I read the research, there didn't seem to be evidence that it made any real difference in my case, but also because I just felt like I couldn't cope with it psychologically.

I'm still getting used to my new life with a full-time job and no mother! It's like another rebuilding of everything now I'm not on high alert all the time about DM and have my whole weekends free. Even though I'm working full-time, I can walk out the door at 4pm and not have to worry about anything work-wise, so it's much more headspace than being self-employed. I'm probably just in the honeymoon period though and things will start annoying me soon!

Oh @FairyWren7 I am so sorry to hear of your DMs problems. Your DF must be so pleased you are home to see them though.

@Zoopet you are nearly through! Just keep ticking off the sessions and it will be finished. I found radiotherapy confusing in that it was physically easy but mentally very stressful which felt irrational. I was so glad when it was over.

I am back in the UK after an easy trip back compared to our journey out. My brain is over the Arctic somewhere but the glow of a fabulous adventure will keep me going for a while. The next few days will probably be a whirl of gardening as it needs doing and the fresh air will help the jet lag. In two weeks I go to Brittany cycling so I will need to put some miles in. I have really turned a corner on my recovery I think. I’m not a cancer patient any more! Having said that I have a zolendronic acid infusion next week but it is my last one!

@Zoopet

I too found radiotherapy v challenging, in part I was just knackered after all the other treatment I’d undergone and in part because of adverse childhood experiences. Totally empathise with the lump
of meat thoughts and feelings.

I had psychological support throughout treatment, and psychologist wrote a letter outlining my ‘issues’. It may be worth you writing down your feelings and asking for a bit of time to discuss them. After discussing it was decided that I would not have any male radiotherapists.

You are NOT being ridiculous. Your feelings are valid. Maybe ask for support, senior radiotherapist was extremely supportive, said it was useful to be reminded that what is all day, everyday for them is v difficult for some patients. After massive wobble before and at v beginning it ended up being a strangely positive experience, I felt v v cared for after I managed to share my vulnerability.

I found radiotherapy by far the worst element of treatment. I struggled not to cry on the treatment table at times.

I get that they need to get on with the treatment and schedules were tight but I felt dehumanised by the way the treatment took place. They would grab hold of me without warning,. my automatic response was to move myself - at that point they would tell me not to move. Would it be so hard to say that before they got hands on me? I know this sounds dramatic but it felt like a violation of consent because they never asked if it was OK to touch me. Feel upset thinking about it even now.

Just saw the comments on radiotherapy. Agree found it mentally unexpectedly distressing. Completely agree about the young guys. My heart would sink walking in and seeing them. Not ridiculous at all. And you do feel very exposed - it's not like seeing your dr or surgeon. It's probably how people who think they've been abducted by aliens think they were examined. Low point was missing dd's 16th birthday dinner because of course it's every day.

Zoo, Hell and others who are finding or have found radiotherapy challenging: that’s because it is challenging.

We are asked to lie half naked, scared, scarred, traumatised and exhausted, in an alienating environment. We’ve been told we’re nearly done, this is the easy bit, it’ll soon all be over.

Hell chuck in the vexed issue of consent, it all adds up to a challenging experience.

I had several discussions, veering into arguments/rows/ complaints about consent throughout treatment. Yes, the system is under pressure, they’re busy. However, sometimes, some HCPs need to remember to respond to the vulnerable human in a humane, courteous manner. Day surgery nurses referring, among themselves, to me as a ‘breast’ was a low spot.

@GrannyGoggles "the breast in bed 7" "we'll take the breast in in 10 minutes" 😱😱😱😱😱

That's absolutely shocking :-(

@HellonHeels

‘There’s one breast left’

I felt as though I was in Victoria Wood sketch… I can chose to laugh, but it’s a bit grim really

Slightly different but also the same, I complained to the medical examiner a couple of weeks ago about the nurses when my DM was dying basically just hauling around. Fort my DD was there saying. "Grandma, they're just doing X" but it was terrible how they were making my mum distressed and didn't seem to give a shit. At one point DD just instructed them "Put her down, you're making her upset". The HCA was brilliant though he talked through everything that he was doing, so I also made sure the medical examiner knew this, but honestly we shouldn't think it's amazing that somebody basically does what their job is.

Have a provisional new date for surgery and provisional date for new job but will be glad when they are confirmed, very tight and dicey for doing both but doable on suggested dates.

Hello all. So glad you’ve got new dates@Penguinsa and everything crossed for them.
@FairyWren7 your holiday sounds lovely. Good luck with the cunning plan.
@SierraSapphire hope being in a job reduces some of your stress. Take it easy with sadmin
@TopOfTheCliff you are inspiring. I’m still getting used to the sense I have no major responsibilities for others…. Or major tasks( probate, selling dms house) to do.
Exploring new possibilities.

I am in back to school mode and thinking of recovery goals and ambitions for the autumn. (Putting aside all the sadmin and house clearing for a moment). I’ve been reading about how doing some high impact exercise is important for bone health so have set myself the target of getting up to 50 skips per day this autumn. I dug out my skipping rope this morning and was genuinely astounded how hard it is. Managed 8 in one go after a lot of false starts this morning (haven’t skipped since lockdowns when I bought the skipping rope in the first place. So there’s a challenge!

keeping my fingers crossed for you @Penguinsa

Good luck this time @Penguinsa !

I've been doing sadmin today @dotty2 - DB and I made loads of calls and filled in lots of online forms last week but nothing at all has come back yet from any of them. I also went for a run this morning, so that's my high impact exercise, tennis too I guess. I'm not sure my pelvic floor would be up to skipping!

I feel like not a cancer patient anymore @TopOfTheCliff now you mention it, with the occasional panic about what if...! I feel the life change because of my DM and the new job have eclipsed the life change because of cancer, and I now have a real opportunity to focus on myself. Dealing with the death stuff can be emotionally exhausting though so I am trying to make sure that I rest enough and switch off from everything.

Sorry about the sadmin many of you are having to deal with.
@Penguinsa hopefully all goes ahead and you are able to move on.
Great to hear @TopOfTheCliff and @SierraSapphire that you have turned a corner away from feeling defined by cancer. Long may the experience of it fade into the distance.
I am waiting to be able to get back to exercising following my lymphoedema surgery. Not swimming or doing any other exercise for over a month now has made me lethargic (behind even with work) and low in mood. Lower back and knee pain has also set in (too much sitting? trying not to go down the scary route on this...not always easy). I need to get moving again and fingers crossed the rest will sort itself out!

Oh @isaxx being a patient patient is so hard isn’t it? I am still working to undo the harm caused by all the sitting, lying and resting I had to do. Am loving @dotty2 ‘s idea of skipping. I bought a skipping rope a year or so ago but put it away. I shall dig it out today, warily as I hurt my knee when I did jumping in the gym class. I am thinking for the next few weeks I am going to build up my cycling endurance and go back to yoga but leave the gym out for a while as I just seem to hurt more after those sessions. Annoyingly there is a lot of rain coming here which will hold me back.
@SierraSapphire my DH is halfway through the probate stuff for his DPs. It is a very convoluted process but we are doing it ourselves as solicitors are so slow and expensive. It is frustrating but I think he feels the delay is helping him and his DSis come to terms with what happened and deal with the mountain of stuff that needs clearing before they put DPs house on the market.

It is nice to be back, I have ordered lots of healthy food and fully intend to eat only when I am hungry, not just because it is a meal time.

Thanks for all the good wishes, no more news today.

Sorry about the sadmin Dotty and Sierra

Did more gardening today but nights are coming earlier so we only got 1.75 hours in but still got a fair amount done. Now DH is out getting a Chinese for us. A further boiler man came today and did some work, hopefully just one more time now.

I'm just catching up as it has been a busy few weeks. I'm glad in some ways that term has begun.

It's good to hear that you have a new date @Penguinsa and @dotty2 you have reminded me that I used to love skipping. I've been for a couple of short runs and am aiming to start couch to 5k properly now. I've been having difficulties sleeping due to discomfort from my scar and hot flushes and was hoping more activity might help with that. I feel almost like I did on steroids, I just cannot sleep, it's so annoying.

9 more weeks of treatment to go I think.

I read a news article yesterday which said that the current trend for decluttering causes mental stress, and this made me feel much better about my cluttered surroundings 😂

@TopOfTheCliff My brother & I did the Probate admin for both my step dad and my mum's estates. It turned out to be relatively painless. I think it would have taken longer if we had gone through solicitors because we'd have been having to make appointments, drop off documents etc. We also saved money doing it ourselves - something my step dad would have appreciated, lol.

Skipping is quite hard on the knees.

@Penguinsa sorry to hear about all the problems with aranging your surgery. I ended up having an immediate implant as they didn't think I needed radiotherapy (I've just finished and the implant didn't pop so fingers crossed!)

At some point I have been told I can have 'evening up' surgery, but I was going to leave it for a bit as I don't think I could face going into hospital again for a bit, but I hadn't thought about there being a big delay in it because it's a 'non-urgent' case.

@dotty2 yeah radio was weird not as bad as chemo. They were really good, and I mostly had women, but still having to stay still whilst people measure and move you and then whilst the treatment is happening, a couple of minutes can really drag on if you can't move. I did get a bit teary, but I think it's just everything (and probably the hormones! )

On the plus point I've joined the gym, and they had an 'introduction to women's weightlifting' class which was exactly what I needed. Now I have a plan I can stick to to get stronger again ( I might have overdone it with the squats as sitting down and getting up makes me wince slightly 😬) but I am just glad to be starting the journey to be getting fitter.

Thanks Oneless It might be worth you getting on the waiting list - my op they knew they needed it Dec 21 and only just being done in Sept 24 though they wouldn't put me on list until June 23 as said list starts a year after chemo and radio.

Thanks Demi Hope rest of treatment goes OK.

DD back from Venice on Friday and we've done more gardening today.

Ooh @Onelessboob I am very interested in your weights class. Is it machines or dumbbell/ free weights? I would love to do that.
At the moment I keep pulling tendons. My left hamstring and my right glutes are grumbling after I did lots of stretching at yoga yesterday. I’m having to change my plans as it’s going to rain all day tomorrow. No cycling for me!

I've got a hamstring tendon injury right at the top @TopOfTheCliff - I originally got it from Bikram yoga probably over 10 years ago. It took ages to go, and then I reaggravated it running a year and a half ago, still got it, it doesn't stop me doing anything except for it. It's painful when I drive after about an hour.

Nothing much to report here, low-key weekend, DD has just gone back up north. She found out on Friday that she has a distinction in her foundation nursing degree so she's qualified as a nurse associate, which is great for someone who was out of school for a year and a half and dropped out of A-levels because she couldn't see the point! She's now working for a few months before starting her 18-month top up to a full nursing degree. I'll miss her but after all the drama of the last few weeks I am also happy to have my house back to myself to start to think what my life is going to be like with all the changes!

@SierraSapphire that is fantastic news about DD you must be so proud.
It will be strange for you to be able to put your own needs first now.
I think the Exemestane I take is damaging my tendons. I have nearly done four years and think I will stop at five regardless of what the oncologist says. My hair is getting thinner too which upsets me.

I am going in for a bone infusion on Tuesday which doesn’t fill me with joy but it is the last one thankfully.
I have overhauled my winter bike and put new tyres on it. I’m leading a ride tomorrow so want everything to go smoothly. It feels very autumnal here.