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.

I’ll join you on the nosebleeds @BatshitCrazyWoman , thought I’d left all that behind! I’m swimming regularly and really must use the gym there too. It’s reassuring to see that others are feeling the tiredness although hopefully that will ease.

I was really tired for ages after chemo, I feel a bit like the hospital gaslit me and told me I should be okay after three months, which made me feel more anxious, but I definitely wasn’t. After 2 1/2 years I feel like I’m now just back to regular menopausal woman tired rather than cancer tired!

It’s easy to blame everything on cancer treatment radiation and chemotherapy, but when I hang out with friends who haven’t been through it I find they are full of the same complaints. Getting older also saps energy, makes your joints hurt and brings new joys like dizziness, deafness and reduced muscle strength. I spent coffee time listening to my male friend of 70 complaining he can’t do the things he enjoys because of all the above. I’m still fighting to get fitter, going to the gym and exercising and eating well, while the rest of them complain and get old!

That’s true @TopOfTheCliff Though I remembered after my post that it was specifically my white blood cells that took a really long time to return to normal and the hospital made me feel like a freak! To be fair, I haven’t had a blood test for a long time so they might still be abnormal, who knows?!

I finished work a bit earlier now I’m just lying on the sofa feeling as though I should be doing something useful but too knackered to do anything much, it’s been an intense week! I’ve got tennis a bit later anyway.

@SierraSapphire I'm always so impressed at all the exercise you do - I think you can give yourself some sofa time, especially in an intense week.

In my case, I need to be less on the sofa and more in the pool!

Tonight, though I'm at a rehearsal for Great Expectations. Our performances start end of next week for 3 nights and 1 matinee. It's my first step back into am dram since the whole cancer experience and I'm a mix of excited and nervous! (PS I've not been cast as Miss Havisham!!)

Thanks @BatshitCrazyWoman Glad the workouts are paying off.

@ememem84 Hope you can get reassurance from your team soon. I would agree with those saying could well be radiotherapy. I didn't get that but I think it was on the list of warnings of things that could happen later. One thing I do find is sometimes I need anti-histamines and that can sometimes stop random redness.

I did 2.5 hours gardening with DH yesterday and the silkies. Lovely day here. DS is often in the garden now and appears to be turning our garden shed which is quite a big one with concrete base and window into his summer house. We found his socks taken off, his ipad, 2 sofa cushions, a fleece sheet, a silk pillowcase and one of my chicken cushions being used as well as various garden tools having moved. And the world's biggest stick.

DD has her last exam today, collect her things tonight and then she's off rowing tomorrow then back here until end of August, she's back to uni early for rowing comps.

@MsPengiuns Your DS's summer house set-up sounds ideal. I'm sure the concrete is lovely and cool! I bet you'll enjoy having DD back till late August.

Today is exactly a year since diagnosis for me. Remember it was very hot then too. Not working today and off to the dump with garden waste - the high life!

I was actually wondering @MsPengiuns if I'm remembering correctly if you also had lobular BC and organise your own MRI each year? I know we'll be living in different areas but wondered if you had any recommendations for private healthcare providers who do this. My surgeon told me to look on Scan UK - that's bringing up plenty but none of them particularly near to me and some on the higher end of the scale (for eg the Portland Hospital beloved of the royals!). I'm not seeing Bupa, Nuffield etc and wonder if I can just contact them directly.

Thanks @PaperbackWrighter I did have lobular breast cancer and tried to persuade hospital to do MRIs but after several no's gave up. I looked into doing it privately, seems to require a referral letter and GP wouldn't do that saying it needed to be oncologist. The oncologist did in the end write a referral letter for Nuffield as she works there and it was about £600ish for MRI. Though also the issue of who reviews it. In the end I didn't have it. I just had a mammogram one side and ultrasound the other unreconstructed side, now reconstructed which were clear last June. The oncologist wasn't keen on MRIs saying pick up too much but the mammogram and ultrasound missed my lcis and smaller cancer, though mammo did pick up larger one so did ultrasound and on reviewing mammo smaller cancer was found after MRI so that was maybe more error.

It's been five months since I finished chemo, I really thought the nosebleeds would be on their way out now! I'm just on the way to the hospital for my herceptin injection and an appointment with my oncologist, I'm going to ask him about it.

Otherwise, I actually feel really well, no aches or pains, eating a bit more now so regaining some weight.

Oncologist has suggested that if my nose bleeds continue, he can refer me to have the vessel cauterised. After 5 months, apparently they should have stopped. Don't know if that helps @dancingwhilstfacingthemusic ?

Thanks so much @MsPengiuns - that's really helpful. I looked into going through Nuffield and they'll need me to get the surgeon to send a referral, which I called the nurse about and she's going to talk to my own particular nurse. I realised that the place the surgeon recommended I try (uk.scan.com) is self-referral, so maybe I will need to go with one of these.

Mammogram showed none of my 3 lobular cancers, 1 ductal cancer, DCIS or LCIS! The radiologist swung into the room for my ultrasound saying all good, nothing to worry about!! Then the ultrasound showed the main lobular cancer which was 20mm, then after diagnosis an MRI showed a second lobular too - the other two cancers, plus DCIS and LCIS, were so small and hadn't grown enough yet as to be detected by even MRI. But my team won't even let me have an ultrasound.

Thanks for that @BatshitCrazyWoman I’ll see how they settle down. The joys eh?

I think I also tried uk.scan.com and it was a while back so I can't completely remember what happened but I think I paid the full amount then had the consultation and they were jittery about the past cancer. They agreed to a scan but there was also the question of who would review the report, think it went back to GP. In the end I didn't feel that confident though it was cheaper than Nuffield and I cancelled and got refunded except £50. It might be fine, I think its all reputable scanning places, its just the ability to pick up cancer that concerned me and that's the whole point. If your oncologist has recommended them and will review the images or is happy with them sure its fine.

Its crazy the NHS won't give the right scans - so much cheaper than chemo. I did get a mammo and ultrasound but I had felt a lump in unreconstructed breast. I would also prefer ultrasound to mammo but MRI was the best for finding things.

@PaperbackWrighter congratulations on passing the one year marker. Hopefully the next year will be easier for you.
I am still lurking away from home in my boat on my mini holiday. The weather hasn’t favoured my plans and when I did try to break out I had a disastrous day with a minor head injury and an engine breakdown. Happily it all worked out fine. I have been enjoying (!) taking the engine to pieces and finding the cause of the overheating. As DH is away I am tackling jobs he would normally do which is fun. I popped home briefly and realised I am avoiding the huge piles of his clutter from his hobby and from his DPs house. He is down in the Med coping with excessive heat and having a wonderful time doing his hobby. It has been slightly weird because I am living the life I would enjoy if I wasn’t with him. I expect he would say the same. We need to have a big conversation about the state of the house when he gets back. I have also had a break from all my weekly classes and activities which I find helpful as a reset. Back to normal next week though. With some thought about which bits of my life are working for me and which aren’t!

I understand all the concern about scans etc - I think I’ll only get a mammogram yearly? Is that correct? I don’t even think that private places will do it more frequently than that. All feels a bit unhelpful although there must be a reason.

Today has been hot & busy. DS last footy training this season this morning, then a quick trip to town for radiotherapy. This session was the only one I have in the actual cancer centre at my local hospital - I’m having to go to another hospital for the rest. The cancer centre is an old awfully ugly 1980s building and it gives me the heebie jeebies. Because it’s a Saturday it was mostly closed, I think I was the last person there at 1pm ish so I got a bit triggered as it the building I had some of my chemo in. They are building a new centre and it can’t come sooner, it’s a depressing place.

It was then DS school fair and I was running a stall. Then home for bbq with neighbours & now we’re watching Pulp at Glastonbury wishing I was there.

Thanks again@MsPengiunsthis is all such helpful info and has prompted me to think about who is actually reading the results of the scan. I just spoke to a v expensive place (£1,300) called The London Clinic where they said they'd need a referral from any doctor whether my GP or surgeon or oncologist (I've never met onco in person and when I spoke to her she wasn't convinced re MRI while I know my surgeon is but has to tow the line). But their radiologist would read the results and provide whichever doctor with a report. So in essence I've got an expert analysis, but they leave someone else to pass on the message, which I'm OK with. I'll see if other cheaper places can offer the same service, but if not I know at least there's somewhere, albeit expensive, I can trust (The London Clinic seems to have a dedicated breast department).

Next year I'm going to go all out to try and get them to do the MRI on the NHS. It just seems laughable that I'm going for a mammogram today, a test that this time last year failed to pick up any of my 4 tumours.

@Littlecaf the reason MsPenguins and I were talking about private MRIs is because we both had lobular breast cancer which doesn't always show on mammograms. Did you have ductal breast cancer? In which case, annual mammograms are great for onward screening. Hope you're feeling OK from the radiotherapy and enjoyed running the school fair plus Pulp at Glastonbury. I know what you mean about wishing you were there although, other than Pulp this year there wasn't much I felt too excited about watching.

Thank you for the good wishes @TopOfTheCliff. Sounds like you had a good weekend, apart from the head injury and engine breakdown - but sounds like you were on top of that! A week off activities sounded a sensible plan in terms of resetting. My activities are ramping up this week as I have rehearsals every night bar tomorrow and show week starts Thursday until Saturday. Fortunately the rehearsal space and stage is all airconditioned!

Wishing you all great weeks and hope everyone holding up in the extreme heat if you're in that part of the country/world!

@PaperbackWrighter yes I can imagine that having an MRI rather than a mammogram would be more reassuring for those with lobular cancer - although my DCIS wasn’t picked up on the mammogram either. I wonder if there’s a way of petitioning for MRIs for those who’ve had cancer that didn’t show up? It seems a common complaint. Wishing you all the best.

Mini boat break sounds good Top

Hope you can get scan sorted Paperbackwrighter

DD just arrived back home yesterday from university. She had last exam on Friday then spent weekend rowing then came home. Out working in her punting job all this week and next then off to Oxford again for a business school course for a week she managed to get a free place on with free accommodation. Then back with us until end of August when she goes back for rowing trials and if she gets in she stays there until end of first term. Also going away with some friends from university.

Did some gardening with DH yesterday though not for long as had to get DD. Found DS in the garden shed and biscuits in the garden as I was sweeping up. DH is off to his piano lesson after work.

Thanks @Littlecaf - how frustrating for you too that your DCIS wasn't picked up on mammogram. When it comes to a couple of months before your one-year mammogram, I would raise with your team that you would like other screening - did it show on MRI or ultrasound? I wrote a letter to the surgeon, only cos I'd had much more contact with him than oncologist and also felt was more on my side re MRI and to the MDT team. They discussed it an MDT meeting and decided no, but you might be luckier and your trust says yes. Some do, just not mine and Ms Penguins. The surgeon called to give me the verdict but it was clear between the lines that he agreed with me. He said he hoped things might change and there were discussions within the Assoc of Breast Surgeons about more than mammogram for certain cases, so I don't think he was just talking about lobular.

Thanks @MsPengiuns it seems my GP will refer me, and the consultant radiologist at Nuffield will provide a report. And my breast care team will receive and store the scans on my record. I'll just wait for the mammogram result first. Boy that hurt yesterday, not the unaffected breast which was just the usual MG discomfort, but where I'd had the wide local excision. I couldn't help but shout at one point. The radiographer was very understanding and explained nerve endings would still be regenerating 11 months on from surgery.

Btw I love that your DH is learning (or maybe improving) the piano - sometimes think of doing that myself.

@PaperbackWrighter - thank you that’s really helpful and a good idea. My DCIS only showed up on the MRI and it lit it up like a Christmas tree or stars in the night sky! They were talking about a lumpectomy for the tumour only up until then, and then it became obvious it was also DCIS was all the way through so that was that!

Had a nightmare with radiotherapy yesterday. I’m 8 out of 15 down. Get to the hospital (1 hr drive) and it’s a 1.5 hr wait. Go and have some lunch with my friend who drove me there and went back to the radiotherapy unit - it’s another 1.5 hr wait! I had to pick DS up from school (even though I’d put him in after school club to deal with any delays) so I had to go. They’ve added an extra one on the end of my sessions, but I was rather annoyed. I’d already had one cancelled last minute last week, so had to go in on Saturday. They said there were priority patients coming from chemo but I was there! Im a 15 min in annd out job! And this is all after waiting 6 months and complaining! Love the NHS (the staff are fab) but so annoyed. Calmed down a bit today. Now I’m just the usual post radio tiredness. And hot.

Good your GP will do referral @PaperbackWrighter

Sorry about the radiotherapy delays @Littlecaf

Just gardening with DH but only did 1.5 hours as so hot out there, its nice but a bit hot for gardening for long. DS keeps being in the garden. I planted a few plants and did some tidying and few things out for the birds whilst DH was doing the lawn. Silkies were with us. Other than that had a meeting for DS yesterday and a form for DS. Watching Below Deck and Dallas Cowboy Cheerleaders. DD has been doing her punting job and now out with friends.

Oh @Littlecaf that is so annoying! I would be furious at such an inefficient system. It must be hell for the staff working like that too. At least it will be over soon. Sending patience x

@MsPengiuns I have been gardening today as well as cycling early while it was still cool. This is a time to be glad we face north and the garden is cool and shady. My new boat seat is wonderful, with views for miles and gentle thermal breezes wafting up the hill. I sat there for an hour before lunch. I also fished out the trunk of baby stuff I have kept thirty years and washed the quilts and cot bedding and hung it all up in the sunshine. I have a lovely old willow Moses basket that I shall fit with a new natural mattress. Exciting times!
DH is home and whirling about catching up on so many jobs. His DD is giving him tasks for her wedding which is five weeks away. This is going to be a very busy month! But it’s better than I expected to have him home and he is trying hard to sort the mess out.
I have restarted my regular activities after ten days off. Back to Pilates in the morning. It did me good to have a break though, and today my BMI was 25.1…. So close to a celebration!

I have finally made it here, can’t quite believe it really but so relieved! My diagnosis of Tnbc came last September after a CT scan after coming to A&E with diverticulitis, so purely by chance. I had surgery in October, struggled my way through 6 sessions of EC chemo and then had 20 sessions of radiotherapy.

Along the way my DH has had a diagnosis of pancreatic cancer and after 12 rounds of chemo is waiting for a CT & MRI which will hopefully show enough shrinkage to enable surgery. My beloved uncle died on Monday after a diagnosis of a glioblastoma (? spelling) also in September so all in all the last 10 months have been horrendous.

My mission now is to get as fit as I can, I put on a lot of weight and lost so much strength and fitness so I am looking into working with a personal trainer to get me going.

It’s hard to be to celebrate really knowing that DH has a long way to go yet, but some girl friends are organising a girly weekend away which will be lovely, and I am so looking forward to that.

welcome @frostyfingers sad but happy to be seeing names I know, we’ve been having a crap year. So sorry to hear you’ve lost your uncle to this horrible disease. Fingers crossed for DH’s scan.

I’m out in Spain with friends, more or less a year to the day that I was previously here, ready to go back for my first operation a few days later. It’s been a haul and there’s stuff ahead but it’s good to be able to travel again.