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.

So good to hear from you@Penguinsa but please try and take it easy!

Thanks Isa and Sandwich. Isa I am not sure about nipple surgery, I think it would not be possible due to job and at my age not sure I am that bothered. But maybe in time I will want. Heard of tattoo as well though wary of doing anything that might be a risk. Though I think if it's just nipple my surgeon said a 45 minute operation so presumably day surgery. I am just so excited to have my old body back and the nerves connected straight away and so lovely. Not seen stomach but appears flat so it's like I was up to early 40s and I miss that so much. It looks so natural.

I am now trying to devise a solution for leaking drain sites like a Blue Peter badge holder would do, I have taken out there soaked bandage added toilet roll from a new roll and stuck on their sticky bandages back. It's not that much but going on clothes though my look at the moment is so glamorous dvt stockings, binder, big white fleece zip up hoodie with pink asda post surgery bra underneath, some giant leggins, compression pants from george. And pink bunny slipper boots. It's quite the look. And back in my post surgery reclining chair with fleece everywhere and a jumping Floof on it. 2 bedside tables each side.

Glad you are home @Penguinsa and the op went well. Be careful of those drains, when are they due to be checked?

Thanks Hellon All 4 drains already out, last two today but the holes that made reopened in abdominal and was leaking fluid. But I did my best Blue Peter repairs on left side has healed up again and possibly both. Probably my fault for moving too much but setting up camp at home and Floof also trying to get dvt stockings off my feet pulling with his paws. Plus much sniffing of my bandages.

Hurray @penguinsa so glad you had the op and are home and have made yourself a little nest. I've been thinking of you.

Thanks Clash, that's lovely of you. I hope your results have come back clear.

I am in my fluffy chair with view over our thatched roof and garden, can hear birds chattering.

I was awoken just before 6am by a hungry floof paw after his morning tuna. He wanted me to wake DH to get it and DH is very hard to wake but Floof purred when I said Floofy wants tuna but when I just tried music Floofy was purring for 5 minutes them started standing up and banging the wardrobe with his paws like get up and go round and wake him now. So stood up and thankfully woke DH relatively easily.

We have 2 floor beams between here and the bathroom, one is just over knee height with a wooden handmade step each side, the other no step and different heights each side, similar height on highest side. I am managing them OK but the physios were quite stunned we had these, really old house.

Leaking has stopped on drain sites so I win a blue Peter badge.

I also looked at breasts again and reconstructed one is beautiful but is like mine were at 30 rather than at 51 so symmetry isn't there but in a bra do look symmetrical and they do feel like a pair with nerves connected and feeling in all of new breast. It does feel like old body back largely. I was a bit emotional at finally looking like me again, my hair is still shorter but it's nice now and just wavy not chemo curls which I hated. Yes I really don't know about stage 2 but surgeon advised me to go on list and see how I feel at the time. I now have no pain and full movement but the heat and morphine was hellish and also it brings you back to memories of hospital, I am now fine with cancer memories but not my son going into like a coma there and them being so horrible and covering up their meds error. That was really cahms but it happened there. But hospital have been excellent for cancer, NHS pressures though which cause a few issues and wasn't optimal on survival timings but pretty good. But 7 days, well mainly the nights made me think about things, beautiful view and own room and bathroom. Food was beyond dire and staff would moan sometimes if you asked for a drink but doctors had said need to be very hydrated and I was on a drip but they are under so much pressure. Most of the staff were lovely and kind and did 2 of their nhs you made a difference forms though some nurses names I could not remember. A lot were Asian I liked best with unusual names, they were always kind and polite and one was very clever with meds. Very few British ones and they tended to be very public school girl ish which was fine and might be the hospital too as its in a posh area or very bossy and ignoring you though nice but annoying. And the ones who are like you are a 5 year old child and they are a strict, boring parent and gave a very regimented way of doing things though they normally just rolled their eyes at me and were nice enough but I felt like a child they were having trouble parenting at bedtime. But the rules like you cannot go to the toilet unless the doctor has given permission, you cannot have paracetamol, you can only have morphine or codeine when you have almost no pain and their light battles it was like being 5 again and not in a good way for me. Such a hard job though and shocked how many hcas were being used pretty much as underpaid nurses. You could hear every word about other patients and their opinions, all by room number. It was interesting.

Ah @Penguinsa glad you have escaped and from the sound of it passed the worst. That intense institutionalisation that happens when you are an inpatient is so infantilising, I totally understand your frustration. The staff seem to think you are deaf and blind and stupid because you are in bed. But now it is behind you!
Try hard to rest and heal. It is so tempting to overdo things and that causes the complications. Been there got the T shirt! It sounds like the result will be worth it.
I’m home from France with a mild gut upset which might have been the food or water or the small amount of alcohol I had at the end of the last long day. I swooped down into the final town leading the group thinking “Yes! DH can be happy I am no longer his broken wife!” and my friends were so pleased for me they were buying me beers.
One excitement on the trip was a quiet new lady who had come along alone but then was seen in a compromising position with one of the chaps. None of our business but she is married. We think they were using our trip as cover for an assignation. Ooher! But you never know what is going on in other peoples lives.
Now I am going into full on Ballzilla mode before the black tie do on Friday. Today is nails and by the end of the week I will be gleaming and well groomed. I wish! 😂
I am feeling happy with progress as long as I don’t make comparisons with either my fitter slimmer friends or my self from five years ago. Comparison is the thief of joy!
I hope everybody is feeling they are moving the right way, however slowly. We just have to keep plodding along towards the new normal.

@Penguinsa so glad you are getting rid of drains and pleased with results. Do heed the warnings and take it easy!
Brilliant news about your French trip @top and the intrigue!
lovely day today at David Austin roses with an old friend- gardens still lovely, and tea room excellent 😉

Echoing all the good wishes and go steady to @Penguinsa

What a nice trip Sandwich, love going there

It's so good to hear all went well @Penguinsa, do allow yourself some recovery time!

@Penguinsa I know what you mean about the diep breast looking more youthful than the real one. Strange to like the reconstructed breast better! 😄
Experimenting with sorting my back pain. The past two nights I have swapped sides with DP in our bed. The mattress on my side tends to slope to the side slightly. I wondered if I have been sleeping in an unbalanced position or in constant tension to avoid sliding off.. I have had a much better night sleep! The real test will be if DP develops a back ache (he did comment on the slight slope on my side...). Then we'll know it's time for a new mattress!

One of the few plus points of having breast cancer twice is that I have matching uplifted pert boobs after bilateral lumpectomy. I’m trying to live up to them!
I’ve been resting after my cycling exertions and today went to a Pilates class which was fun. Then I went to have 3 tiny sutures removed from my nose. The nurse was jolly and only qualified two weeks ago. I managed to get in and out without talking about cancer or all the crap I’ve through which felt like a step forward. The only negative this week is that I have come home with a mild stomach bug. I am wondering if I have got giardia. If it doesn’t settle I will have to break my resolution to avoid doctors and get some tests.

I’m working hard on body upgrading this week. Today was eye test day (all good), and tomorrow is highlights and haircut. I haven’t tackled my missing eyebrows, that can be next week along with the dentist for my broken filling. It is hard work bringing this battered old body back up to scratch! I’m feeling more positive generally but I wish I enjoyed exercise more. I’m a natural lazy arse unlike my keen friends who just long to be on their bikes. “Must I? It’s raining!” Is my view.
Hope you are still improving @Penguinsa

Glad you're recovering @Penguinsa - I was watching each day after your operation to see if you were okay!

I tried to go and play tennis last night, but there was torrential rain and flooding and I couldn't actually get through to the gym, I was just being turned back every way I went, so that was a wasted hour and a half just driving around in the rain!

We've had the probate valuation of DM's house back and it just seems really low given local knowledge, the surveyor isn't local and IMO has made unfair comparisons, so that's another thing I need to sort out. I had intended to apply for probate this weekend, but I don't want to end up with a capital gains tax bill because the house was undervalued. A local estate agent has just immediately had a smaller house with no garage go under offer on the same road for only slightly less than DMs house was valued at, so I shall pop in there after work for their opinion, I'm finishing at lunchtime as I did an evening meeting this week, so that will be nice.

I've had a bit of a mixed week - two nights out with friends (lovely) at the start of the week, pottering along nicely with work and exercise, and then had a complete meltdown yesterday, ended up in floods of tears and poleaxed by anxiety. It was triggered by the cat being poorly (D&V - took him to the vet as a precaution and they couldn't find anything wrong, though he's clearly not quite himself). But really I think it was the build up of the last couple of months - DF passing away, all the house clearing and admin, the DDs needing a lot of support. I have an oncology appointment today too and while I'm not at all worried about that, I have to have a blood test before these appointments and that's always a pain. I have rubbish veins and it took two attempts and trips to two different hospitals to get a sample. Anyway, I was supposed to be going back to DF's for a couple of days of house clearing today and tomorrow, but I have cancelled and am going to cosy up at home and take things easy. DH was going to come with me for part of it, and I also don't want to leave DD17 in sole charge of an under the weather cat. I am bad at knowing when I need to say no, and take things easy, so perhaps it needed a crisis to get me to step back for a while. The house clearing can wait.

Sorry about the anxiety about the probate valuation @SierraSapphire - it's tricky, isn't it. DF's house is hard to value, but he lived in a cheap bit of the NW, so will be well under the IHT threshold whatever, so we don't have to worry too much.

Hope you continue to do well @Penguinsa . Onwards and upwards for us all!

Hi all, I have a question. I've just passed my 3 year anniversary of BC diagnosis. I take anastrazole with no side effects. All good.

I've had my last infusion of zolodronic acid, and am about to be moved to patient-led care, which basically means I ring them if I'm worried....but.....

I had three tumours in one boob. Two of them were the size of marbles and I still didn't notice them. They were picked up on routine screening.

If I didn't spot them last time, how am I supposed to have faith in spotting any problems in the future?

It all feels a bit like tight-rope walking without a safety net 🙁

@Meadowfinch - good question. I think that 'having faith' that you would know if something was wrong is one of the hardest things about having been through cancer. We know that cancer can be growing for a long time with no symptoms. And even if you do spot something off, it's so difficult to calibrate - where's the happy medium between worrying too much about every little twinge, and not worrying enough about something that could be sinister?? You say your tumours were picked up on screening the first time around. Are you still having annual mammograms, so at least you have that assurance?

@Meadowfinch you have identified the flaw in the follow up plan. I had two BC interval tumours that presented after a normal mammogram, in one case 3 years after and in the other six months after. Both times I felt a lump. I sat down with the radiologist and went through all my X-rays and we concluded they weren’t visible and doing more frequent mammograms would only expose me to higher radiation. I agreed to self monitor with annual mammograms.
For you having annual mammograms would seem the best way to pick up trouble. It feels like being abandoned though. Have you done a Moving Forward course with Breast Cancer Now? That helped me.
My lovely oncologist DD has almost finished her research study into follow up of primary cancer. It’s going to be expensive for the NHS because she has shown that early diagnosis of recurrence with regular scans improves outcome with modern treatments like immunotherapy available. It sounds obvious but nobody has done the study before, mainly because there was limited effective treatment for resistant tumours. Now they have so many more options the situation has changed.
All well here at Tops Towers. Trying to get into some sort of routine of exercise between fun trips. The next couple of months are getting quite busy!

@meadowfinch yep I get that. When I was diagnosed with advanced cervical cancer I felt the healthiest I've ever been. I wouldn't have any faith that I'd spot anything before it was advanced enough to cause symptoms.

I was slightly perturbed at my twelve month check that it was an MRI of my pelvis only as with my type of cancer it can often pop up elsewhere.

It means every time I'm slightly poorly (I've had a bad cold lately and so I'm not 100%) I've got the added 'what if it's cancer?'. I like to think of it as completely justifiable health anxiety.

At the end of the day though you can only control the controllables. I live as healthy as I can, I monitor my health as well as I can and I probably flag things with the GP a lot earlier than I used to! Most days I just push it to the back of my mind but some days the fear is overwhelming.

@penguinsa glad you seem to be healing up well! Scan came back clear, hurrah! They've even mentioned stopping the blood thinners which I assume is because my risk of recurrance is lower.

@dotty2 definitely time for some self care! I'm getting much better at saying 'no I need some downtime'.

Yes, I have annual mammograms. And the protection of on-going Anastrazole. I'll focus on those.

I've done the Moving Forward sessions which I didn't find useful at all. They seemed to focus on making people feel better - head massage, manicures etc - rather than providing any real practical advice.

I manage my exercise (I run), and my food (all cooked from scratch, 30+ different fruit & veg a week). I don't drink, have never smoked or done drugs.

I suppose I want a bit more certainty and I can't have it. I'm sure I'm not the only one.

@Meadowfinch and @ClashCityRocker

Its’s a tricky business. I too was very well in the lost Eden time before cancer was picked up by routine screening. How the heck am I supposed to trust myself to spot a recurrence? I had no clue first go round, none.

My new normal includes lumpy, bumpy scars, radically altered breast tissue, long term discomfort. Is that a symbol of recurrence I wonder, or is it part of post treatment?

Like Clash mostly I push it to the back of my mind, control the controllables. Like Meadowfinch I’d like a bit of certainty. I miss the lost innocence of life pre-diagnosis, while trying to have gratitude for my health TODAY

Thanks to both of you for articulating what I feel

Symptom NOT symbol

@dotty2 sorry to hear you are feeling anxious. Such meltdowns are all too familia to me. Do try to go easy on yourself.

Like others, I find navigating the new normal a difficult balancing act. I certainly don't feel confident I would know if something was seriously wrong.