The Great Recovery part 4

[TopOfTheCliff]

Time for a new thread. Welcome aboard!

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.

How frustrating @littlecaf I hope things speed up.

It's good to hear you have a surgery date @fairywren7

I also had my covid vaccine last week, had a sore arm for a few days but no other side effects.

I have a breast clinic appointment on Thursday about a new lump. I think I am probably being over cautious and it will be fine, but am still not looking forward to going and sitting in the waiting room again.

In happier news the weather is amazing, it is sunny and warm here which is a rarity!

Oh @Littlecaf you just want to get it over now I’m sure! Let’s hope your MP puts a rocket under them.
@MissMarplesNiece I put bags in my car to hide them from DH so he can’t rescue things. Not being able to recycle is like being constipated with rubbish I feel. I share your pain.
@MsPenguins Your DS sounds a real character with his rose scented baths.

@demivolte fingers crossed for you but well done for being brave and getting checked when it’s so bloody terrifying. Glad the vaccine wasn’t bad.

I have been away cycling with my lovely friends. We have done forty miles a day for two days and are cycling home tomorrow. It’s been an experiment with five ladies on a mini tour and it has been fabulous. The weather helps as the sun has shone non stop! I’m better from the Covid jab and happily pedalling up the hills feeling fit and enjoying lots of coffee and cake. Hooray!

A cycling trip with friends sounds like a lovely break @TopOfTheCliff .

Unfortunately more delays - the breast care nurse called yesterday to say that because my brain MRI was clear, I can start taking tamoxifen again. I’m afraid (politely) lost it with her. The oncologist said it (and I quote) “wasn’t doing much for me so I can stop” (I was having awful side effects). I then asked if it would be better to restart after my radiotherapy (in May - already 5 months after surgery) and she said “as your having radiotherapy in July…….”. I was so upset. I know we are all human but it’s ridiculous. I’m so angry the way I found out, I’m really angry that they’ve advised the opposite to what I was originally told! It’s made me super anxious again and I slept really badly last night. I thought I was on an even keel so to speak, “recovering” now it just feels like another slap in the face.

Oh that's rubbish @Littlecaf - I'm sorry you feel right back in treatment anxiety rather than recovery. I had a bit of a limbo between chemo and radio (not as long as you) and was also messed about with changed start dates, mixed messages etc. I found it really tough because I just wanted to plough on through and get treatment over and done with. I understand why it feels like a slap in the face - sending solidarity.

And @demivolte - sorry to hear about your lump scare. Fingers crossed it is nothing, but well done for getting on it.

Can I share a bit of a recovery triumph? I swam a mile this morning for the first time since cancer. Whoop, whoop - go me! I have been wanting to build up to it for ages and tbh I think the only reason I hadn't done it before is that I'm usually squeezing in a swim between other stuff. I actually felt like I could have carried on, though the nerves in my bad arm were all jangly and stingy. Feeling very pleased with myself.

Now have to get on with some work that I should have done yesterday but I had a bit of a mental block and ate too many biscuits while stressing - definitely need less of that in my recovery.

So sorry @Littlecaf and it is so hard to bear a shifting plan. It seems so disrespectful to have a clinical guideline for radiotherapy treatment dates then basically ignore them and the anxiety this causes you. They should be grovelling!
Could you maybe take the tamoxifen as insurance until after you have completed radiotherapy then stop? That might give a bit of peace of mind. Unless it is too awful.
It does reassure me that vigorous exercise and avoiding alcohol reduces my risk for more than the exemestane.

@dotty2 well done! I get the stingy arm thing too and you just have to rest up for a day or two. I have ridden 120 miles this week and am really pleased with my fitness but now I ache and have a sore arm.
I am making plans for Easter now trying to work out when to see the DC and DM and when to get out and about. I’m busy as ever at home but I think we should carve out a few days of family time.
What are you all planning?

@demivolte how did you get on today?

All good thank you @TopOfTheCliff , just a lumpy bit of normal tissue apparently. I find it very hard to tell what is normal.

I'm sorry to read your update @littlecaf, that is so frustrating and disappointing.

Well done @dotty2 that is a great achievement, and thank you for the good wishes.

Can I very tentatively poke my head round the door of this thread? I had my 13th radiotherapy this morning, just two more to go and that's active treatment finished (although I'm back at the hospital just after Easter for my Zometa and Herceptin). I really don't know how to feel about it, to be honest. I'm excited to get some sort of normality back, but I don't feel like the pre-cancer me at all.

@Littlecaf I'm so sorry to hear about your delays.

Welcome @BatshitCrazyWoman- yeah it’s a weird time, took lots of us a while to readjust, we get it! I’m about 2.5 years out of treatment now, and I would say I feel pretty normal now, if changed, although with the underlying worry about recurrence, but I’d say it took me a year to feel in a position to go out and face new people again. I actually feel less anxious about my health than I did before cancer, and also more determined to make the most of my life - lots of holidays, concerts, trips out etc. but also still pretty conscientious about eating well and exercising (you’ll see we often report our progress here!) - but you will find your way through it.

Hi @BatshitCrazyWoman welcome! I’m a newbie on here too (just past 1 year post surgery for IDC)

I actually just popped in to catch up with everyone’s news as I’ve been off mumsnet for a little bit, mostly while I was away on a little holiday to try and regroup after a tricky couple of months which resulted in me coming off tamoxifen. Now I’ve got to decide about either going back on (at a reduced dose) or starting something new or not bothering at all. All “my decision” of course, as per my ever helpful oncologist.

No idea what to do so may perhaps Ostrich for a bit longer and have a little more time off to enjoy feeling more human.

I feel for you @Littlecaf It’s lousy trying to pace yourself and then they move the goal posts without even telling you properly. Urgh!

Glad it’s nothing suspicious @demivolte it’s very hard to tell what’s normal and what’s not anymore.

congrats on the new job @FairyWren7

Waving hi to the other regulars, specially @TopOfTheCliff who does the thread admin.

Changing the topic slightly, but anyone watching Dying for Sex? A friend warned me it might be triggering but said it was good. I haven’t found it triggering as such, if anything I’ve appreciated some of the gallows humour, and the “we ride at dawn” BFF, but seriously, I’m finding main plot line is a bit far fetched. It’s explained away in the first few minutes as her being a medical anomaly, but sheez, I can’t even manage a very vanilla roll in the hay, let alone wanting to try all sorts of things I would be far too embarrassed to google 🙀

thanks all. I’ve calmed down a bit now - have complained to PALS & my MP. I have a meeting with the oncologist next week to discuss where I shall be making it clear how angry I was. Then we’re on holiday for a week so I won’t be starting anything until after then. I’m still on Phesgo until July so I have some “protection” if that makes sense. The oncologist even said “your cancer was HER2+ driven rather than hormone driven” (ER was only 3 on the tumour and negative on he lymph node) so the lowest it can be and be positive.

I had similar with my chemo @Littlecaf, it was delayed beyond the recommended timescale because I tried to discuss the new guidance with the oncologist, which she didn’t seem to be aware of, and she got angry and threw me out and discharged me from her caseload. I got referred to somebody else and also asked for a second opinion from the Royal Marsden in that time, but I also chased it up with PALS, but by the time they got round to replying to me, the chemo had started (although the first time I turned up, they told me they hadn’t got it ready and I have to go home and come back a week later 🙄). I wish I’d made a proper complaint about the oncologist, but at the time there was too much going on to stress myself even more with it and I didn’t think it would make any difference anyway. I turned down radiotherapy, but I know for endometrial cancer there is no difference in outcome if you have it immediately or you wait for a recurrence and have it, so hopefully the time scale isn’t going to impact on the outcome for you either, although I remember the chasing up and trying to get it scheduled being one of the most stressful periods of all this. Hope you have a good holiday!

I’m meeting friends today, I need to pop over to DM’s house first as it’s still on the market, but we’ve got a viewing later. I’ve exercised eight days in a row, so I might go for a gentle swim and spa later but probably shouldn’t do anything too much as tomorrow. I’m running in the morning and playing tennis in the evening, now worried about overdoing it, but also getting some social contact with these things.

That sounds horrendous @SierraSapphire I find it so strange that we are hammered about keeping our stress levels low by care teams when it’s the care teams that are significant source of stress.

I’m sorry you had to deal with that. I had similar and it’s just horrible.

Thanks @Lilgreygoose and sorry it happened to you too. On the other hand, maybe she did me a favour, because if she had accepted what I said and I hadn’t gone to the Royal Marsden for a second opinion, I wouldn’t have found out that I had a second cancer that my first hospital had missed. Although the second cancer was very very tiny and actually maybe I didn’t really need chemo at all because it was all removed, but who knows. But yes, the whole thing was incredibly stressful, the eight weeks between diagnosis and actually having a hysterectomy because there were “too many bank holidays” was also incredibly stressful, partly because I couldn’t plan my work (was self-employed) and had little income. I just think it’s ironic there’s all this stuff about getting sick people into work, but they don’t help us if we are sick to keep our job if we’re already in work!

Lovely day today, I’ve just come back from brunch and a long walk in the countryside.

You touch on another interesting point @SierraSapphire about treatment and working. There’s not a lot about any of this that makes a whole lot of logical sense.

Brunch and a walk sounds lovely! Is it still so sunny?

Im doing boring chores and errands today so I can have a nice day tomorrow only doing nice things.

@BatshitCrazyWoman welcome to the thread. Don’t feel you have to do anything until you are ready. The secret we have learned about recovery is that it works best when you are gentle on yourself and go slowly. Read some of the links at the top, especially Peter Harvey’s paper if you haven’t already. You will probably have some ideas about how you want to spend your time once your treatment is over. We are all different.

@SierraSapphire I liked what you wrote. I think I am probably less anxious generally since cancer but I notice it more. I was a relentless extrovert and always busy with work and social activities before, but cancer treatment during Lockdown was a revelation. I discovered my hidden introvert and the joy of staying home. Now I realise I am perfectly happy pottering by myself without deadlines or pressure to be outgoing and sociable. Being mindful I notice the build up of anxiety when I have a commitment somewhere. I was masking my anxiety in the past but getting headaches and IBS. I think two of my DC do this too interestingly, and I observed my DF becoming a hermit in the last years of his life. Somehow there has always been pressure to join in and now I am able to step back and say “not this time” without feeling guilty. I really like getting older, I care so much less what other people think of me! It is very freeing.
I am having a weekend of doing odd jobs at home. Easter weekend we will have visitors so I am hoping as ever to have the clutter under control!

@SierraSapphire thank you - and yes it is stressful. How do you go about getting a second opinion from the Royal Marsden? My oncologist talked about me having my radiotherapy there initially but now it seems that’s out of the question - I’m not sure why. I have an appointment next week now to discuss and I’m going to use the line that @TopOfTheCliff said up thread about it being incredibly disrespectful not to inform me properly of the delays and their reasons. A complaint to PALS is going in tomorrow.

We have just had a short trip to France to see 92 year old MIL in Paris and stayed at a chateau with swimming pool in Dordogne and went canoeing for 3 hours and saw lots of chateaus en route. Now back and cat is very happy.

Well done on swimming Dotty and on the cycling Top and all the exercise Sierra

If you’re working with your consultant, they can refer you to the Royal Marsden for a second opinion @Littlecaf but because I was in dispute with the hospital, I went to the GP and she referred me. I did pay to go privately though as it was only one appointment. To be honest, the Royal Marsden were crap about communication as well, I was told that it would go to an MDT and then I’d have an appointment within 10 days but it took more like three weeks, it turned out that that was because they were reviewing my pathology slides and had found something that my hospital had missed, but nobody told me this, it just seemed like nobody was getting back to me.

I think I’m a fairly equal mix of introvert and extrovert @TopOfTheCliff- I’m only just getting used to pottering around the house by myself at weekends after running around after my mum for five years. I’m making wandering over to Waitrose and getting nice bread and salads for my lunch one of my treats again. I’ve also reduced the pressure on myself to get things done when it’s unrealistic, so I’m not giving my body more than it can cope with.

That sounds lovely @MsPenguins- I was googling my next holiday last night, I might go away with DD at the end of May if she doesn’t go with her friend, just to the beach somewhere hot for a few days!

This morning, I am going out for a run with a new running partner, and playing tennis later, I feel like I’m gradually getting my life back together and making new friends to do things with.

@SierraSapphire thank yiu for your reply. Do enjoy your new found enthusiasm for life! We’re off to the cricket today then on holiday from mid next week. I have to remind myself that life is not all about cancer!

Thank you for the welcome. I have read Peter Harvey's paper, and think it's excellent. There are a few people in my life who I think should read it, who think that it's all over and I can forget all about it. Cancer does cast a long shadow, I've discovered, and I say that as someone who's pretty positive.

Anyhoo, I've done my workout today - I have a specialist oncology physio who has devised a programme for me, as I've lost so much muscle and am weaker than a kitten. It's not fun to do because I still find it really hard, but I can see progress! And I have a UK break booked for the autumn, the Future Dreams fashion show booked for May, and a couple of nice lunches. It feels good to be able to Do Stuff.

@BatshitCrazyWoman i agree re Peter Harvey’s paper - I saw it on here and my counsellor gave me a copy. I sent it to DM, DF & DB & DP. They all simultaneously got off my back, so to speak, stopped making comments about “moving on” & “you need to go back to work” etc . V useful!

Aaargh I'm going for my Zometa tomorrow. Last time it took ages for the nurse to find the vein and she stuck it in my wrist 🙄

Hope it went well today, @PollyCreo , better than last time.

I'm feeling a bit annoyed and a bit worried. I was going to have a barium meal and follow through tomorrow with the result going to an appointment with my Consultant at end of May. Imaging dept phoned me to cancel appointment and rebooked it for 12th May. It usually takes a good few weeks for results to get from imaging to my Consultant, I hope there's enough time for that between the scan and my appointment with him.