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'm 2 weeks after the end of radiotherapy and tbh am still quite sore and tired, more than I thought I would be at this stage. There's not much difference to when I was having the treatment and I was hoping for a little improvement by now, but there we go. I have a phone call with oncology on Friday so will discuss it with them then and try and pin them down on next steps - ie: scan/mammogram.

@Remaker I'm so sorry about your DS's friend, there is nothing worse than the loss of a youngster on the brink of adulthood.

@ememem84 I hope your boob is better, and you have my sympathies on the DH situation. As (most of) you know my DH had a diagnosis of pancreatic cancer a month after my lumpectomy so we've been on a really awful rollercoaster - he has scans today to determine whether an operation is a possibility so we'll be at tenterhooks for the next week or so which as we all know is grim.

He's gone back to work, at very reduced hours, and although tired is managing well which is fabulous BUT he will barely do anything around the house unless I instigate it - changing bed linen, putting away stuff, cleaning, gardening, etc and it's driving me nuts. I know he's still unwell, and still suffering chemo effects (he's a few weeks after his last session) but there is a limit to how much inactivity I can tolerate. The difficulty I have is that everyone says how marvellous he is etc but they don't see that I'm doing the legwork behind the scenes and I can't possibly voice my frustration. I'm not expecting him to do loads, and I am well aware of his limitations, and he does do things when prompted but it's the complete lack of initiative that gets me, I feel like a nag if I ask, so I don't and then I'm grumpy! It's a nightmare - any suggestions of how to handle it without being the bad bossy one?! He does cook some of the time, which of course is wonderful so it's not all bad, but there is so much more that he could help with.

@TopOfTheCliff You're right about counselling, it might help us - cancer changes you so much, and when it's both of you the consequences of that are enormous.

On the plus side I met my new personal trainer (those are words I never thought I'd type!) and start soon, just once a week at the beginning so I'm looking forward to getting myself back into some sort of shape.

@Remaker that is tragic about your son's friend.

@frostyfingers I was bloody knackered after radiotherapy, it is the main side effect, I think. All you can do is rest. I'm 3 months post radiotherapy and having a very tired phase at the moment, have slept in the day quite a lot. It takes a long while to get over all the treatment. I did read it takes two months for every month of active treatment - that's a long time!

@ememem84 I think cancer and all the treatment has such a negative effect on relationships - I don't know what to suggest. My own relationship seems really rocky (we don't live together), he wants me to be 'better' and my usual self, but that person has gone 🙁

Thanks guys. It’s sort of comforting to know it’s “normal” and not just me. Although sorry that some of you are also going through similar.

I will look into some therapy.

in other news.

booby is ok. Less swollen. Hoorah.

also went to oncology dept today to get my first zoladex injection. And my letrozole and abemaciclib. So fun….

Thank you everyone for your kind words. My poor DS is so upset. He didn’t want dinner last night, just lay on his bed with his headphones on. Even DH who isn’t always the most emotionally intelligent is worried.

DH and I are supposed to be flying to Brisbane on Friday morning for a 4 day weekend, meeting his two best friends who are flying in from the UK and going to see the Lions v Wallabies rugby match. I think we’ve about 90% decided that I won’t go. We just don’t want to leave DS on his own.

I have just had my phone consultation with the oncologist and he said I should consider myself cancer free 🙌🏻 🍾. Mammograms annually for 5 years starting this October and 6 monthly blood test for 3 years because of the medication I'm on but apart from that he's done with me. The only thing to sort is whether I have further surgery to "tidy up" the lumpy scars etc, but that's going to be reviewed in October so I'll park that for now. It does feel a bit odd, but a huge relief to have it said officially.

Sending love to you and your DS @Remaker. It does sound like he needs to be with someone.

Great to be all clear @frostyfingers

Getting DD back today from a week in Oxford. Just been doing more house and garden projects - its lovely to have normal life back. DH fitted a new shower screen on Wednesday and that looks so much better than the old shower curtain. We've done more in the garden and shed yesterday together. DS is loving his converted shed - found 2 drinks in there, ipad, nintendo (which he initially refused but then other week his sister asked if she could have it as he didn't use it for 2 years and now he's using it 😂) , lots of blankets, cushions, sofa cushions, using the bedside table I got, its full of his stuff, velvet beanbag chair. Then did some sweeping up of the leaves. Found someone who will take the bodyboards we had bought but never used and advertised the 3 bikes for sale as we don't use them and DD wants a different type of bike.

@MsPengiuns I love the sound of your DS's man cave/summer house luxe! Sounds like he is spending many a happy hour in there.

Great news @frostyfingers how lovely to hear. I have my own happy news. Scan marathon over, I had the results of the breast MRI today (following the mammogram), also all clear. Burst into tears on hearing the news, feel happy but also exhausted after 3 weeks of high-level scanxiety, not to mention a month of lower-level scanxiety leading up to that! But will definitely sleep easier tonight.

That's great news @PaperbackWrighter glad to hear it.

Fabulous news @frostyfingers and @PaperbackWrighter

I've been at the hospital for my herceptin injection today. Just four more to go. Echocardiogram booked in for August and full bloods taken. Boiling hot day to be travelling up to London 🥵 I'm absolutely shattered now and in bed already!

@PaperbackWrighter that's great news! It’s such a relief when they say all clear and you can step down from high alert and let the stress go.
I have worked out why the Cancer Thread has gone cold. Somebody started a new breast cancer thread which has taken off and those folks don’t need the main thread. I must stop worrying about other people! But it’s a shame after 97 threads that it’s languishing. It was so useful when we first joined scared and unaware of what we were facing.
I’ve been useful today but not dealing with the heat very well. I felt quite sick and faint at times and had to rest. Not like me at all! Happily I cleared out the cleaning cupboard and integrated all the stuff found at PILs house. Also did laundry and a garden tidy, met SIL for coffee and popped up to the sports club to show a new bar person the ropes. Like @MsPengiuns said, it’s lovely to have normal life back. Now my finger is healing up I can be useful again, although im
still letting DH do all the washing up 😎

Wonderful news @frostyfingers and @PaperbackWrighter !!

That’s a shame about the cancer thread @TopOfTheCliff . People like me who have a different type of cancer will have nowhere to go. But agree we can’t fix everything for everyone and you do such a great job keeping this thread humming along.

I didn’t go away for the weekend and I’m pleased that I didn’t. DS has been spending a lot of time with his friends but when he does come home it’s not to a cold and empty house. He looks completely bereft, just walking around in a daze. This is the hardest thing I’ve ever navigated as a parent. Harder than cancer because I had some control over what I told him about that. There’s no shielding him from this. He goes back to school on Tuesday and the funeral is on Wednesday. Sorry I know this isn’t my personal counselling service! Thanks for listening.

Hope you can all get through the return to school and funeral @Remaker. I think its harder than cancer when there's something very serious that affects your child. I felt like that with DS when he was in hospital for months in 2022/23.

The weather is finally rainy here which is much needed for the garden. DS is still out in the garden room a lot. DD has been working punting today and staying overnight at a friends and we will see her back tomorrow. DH and I have just been working on preparing a listed buildings consent application gathering history of our house which is over 500 years old. No idea why listed buildings people want all that but its interesting and we are having to ask lots of neighbours as well. Have been sent photos of a party by house in 1945 for the end of the war and photos from 1860s and 1900. And now have an invite to a garden party at a neighbours in August.

Hope everyone is having a good weekend. Another rainy day here tomorrow so think will just be Sunday lunch and tidying things around the house.

@Remaker it sounds like you are doing all you can for your DS but you can’t take away the pain. It’s true that sometimes it is easier to go through hard things yourself (like chemotherapy) than it is to see somebody you love suffering. This is why our nearest and dearest found our treatment hard to cope with.
I took DH out on my boat for a sea trial of the newly repaired engine. It failed 😂 but we had a lovely outing nonetheless, and have a plan for the next step. I’m now waiting for the big thunderstorm that seems to have missed us.
Happy weekend folks.

@MsPenguins It must have been interesting to see the old photographs of your house.

Thanks all I am really buoyed up by my results and am now planning a new exercise regime - had not realised until chatting to a Macmillan nurse the other day that exercise has been shown to reduce breast cancer recurrence by 20-30%. I walk the dog for 1-1.5 hours a day, plus a 45-min dance class once a week, but am keen to start strengthening/resistance and much more cardio based exercise. Am considering whether to join the gym but will try classes as pay as you go first.

@MsPengiuns how interesting with all your historical investigations - that must be really fascinating.
@TopOfTheCliff your boat trip sounded fun tho sorry the engine failed. Glad your finger is healing.
@BatshitCrazyWoman Friday was a v hot day for travelling up to London for the herceptin injection - I hope you got a good sleep after.
@Remaker it is so hard for your DS and also for you - like you say the hardest thing you have navigated as a parent. It must be so difficult knowing you can't take his pain away, but you are there as his safe port in a storm and that will be of great help and support to him.

So pleased for you guys with the all clears.

i started taking my new meds (letrozole and abemaciclib) last weds. Felt a bit sicky on Thurs morning but ignored it and it went away.

perfect start to summer hols here. Dd has chickenpox (we think). Pic attached.
im going to call the oncology team tomorrow because the drugs I’m on make me slightly immunosuppressed.

I’ve had the pox. And as it’s summer here and relatively warm we’ve had the doors and windows open all day. But. I still live in the same house as her.

Yikes @ememem84 poor DD and you too. Hope the Oncology team were reassuring - did they think you should be OK to carry on as normal or need keep your distance from DD?

Oh no @ememem84 ! Hope she’s managing ok and pleased that it’s cooler now. Hope you get some reassuring news from the team.

I’ve been swapped from letrozole to anastrozole to see if there’s any impact on the joint and muscle pain / stiffness. There is encouraging noise about perhaps being allowed onto camizestrant once NICE approves it in the autumn.

It’s my first annual review with the breast nurse this Thurs. How time flies when you’re having fun …

Boat outing sounds fun @TopOfTheCliff

Glad exercise is going well @PaperbackWrighter I saw it improves outcomes 30 to 50 percent of do 3 to 5 hours a week so have stuck to that once treatment finished and it's had amazing effects both mentally and physically. I count gardening and it's had a great effect on the garden too. Definitely recommend exercise though initially you build up. I am over the 3 to 5 hours at the moment but did 2 hours gardening tonight with DH largely to use calories up from the 3 pancakes I ate previous day.

My BMI is 24 still but I need to check every month or so. We managed to garden just tidying and cleaning shed bit more and lawn in-between the rain, was nice with the 3 silkie chickens and lots of little birds around. Sunday we had Sunday lunch and did some work on the bathroom removing carpet and underlay as will change flooring. Did some looking at old censuses to see who used to live here, can't get exact house but can get street and all women are listed as unpaid domestic duties and on children they list alive ones and dead ones. So many of the children with no school, only around a third, must have been working. Made me glad to be alive now and not then. Though one man was a horseman which sounded quite cool. One in a neighbouring street was 35 year old woman widowed with 6 kids.

[whispers] Hello everyone. I feel bad posting as I’ve been AWOL for ages and now I’m here for selfish reasons. I’ve been doing ok but got a bit low about my lymphoedema a couple of months ago and felt I might be better off staying off social media for a bit. I’ve just been catching up and am pleased to see some excellent recovery news from you all, as well as some sad challenges. Sending strength.

Anyway, my current challenge is that I have a swollen supraclavicular node on the opposite side to my breast cancer, 3 years on from
diagnosis. I have had it for a few weeks and have done sooo much anxiety googling. I’ve found various tales (inevitably) of people whose secondary cancer initially presented that way. I got checked at the breast clinic yesterday and breast looks fine on ultrasound, and the dr reassured me the node feels soft and moveable (good). But they can’t scan or biopsy there in the breast clinic so I’ve been referred for a neck and thyroid ultrasound under 2WW. Appointment next week. Now catastrophising. Ironically I finished my 2 years of abemaciclib yesterday and should have been celebrating. I feel so desolate. (Also the thyroid thing is odd, the dr didn’t mention it but the receptionist said that was what I’d been referred for when she called to make the appointment. Maybe it’s standard). I know you’ve all been there with the recurrence anxiety but it’s a bit shit.

more positively I swam 53 lengths earlier and walked to the pool. I’ve done over 3000 so far this year. Go me!

Really sorry to hear that @dotty2- I’d been wondering how you were doing as we hadn’t heard from you for a while. Fingers crossed that it’s nothing and the softness is a good sign. Problem is it’s easy to find confirmation of these things if you’re looking for it, but it could be something else completely. My daughter often has lumpy lymph nodes in the absence of anything else obvious, sometimes proceeding an infection, the first time it happened though everyone was a bit concerned. The addition of the thyroid, is this just the name of the scan as your thyroid is in your neck rather than anything specific to do with your symptoms?

I’ve had a bit of anxiety as well around bloating, it doesn’t seem obviously connected to recurrence, more digestive and with a negative FIT, but who knows. I have my check up in a couple of weeks.

Hi @dotty2 and welcome back. It’s so hard to be brave and put yourself forward for tests when you know how devastating a bad result would be. This is scary stuff. My wise DD the oncologist says Knowledge is Power! Whatever the result it is best to be certain and out of the awful Not Knowing. I’ve been through the lymph node scare so I understand.
@SierraSapphire I have been trying to notice what upsets my gut. It seems to be fatty stuff like fish and chips, which isn’t surprising as I haven’t got a gallbladder. I’ve stuck to fruit and vegetables, and high protein food. It’s been okay for three days now.

We are in wedding prep mode now. DSD thinks we should “be embarrassed” by our house, which means she is probably embarrassed about her new PILs coming here. I see that as a useful lever to use on DH to get stuff done as what his DD wants she gets! It will be lovely to have it clear even if only for a week! I’m going to remove the clutter to the other house 😎

Lovely to have you back @Dotty2 Hope you get the all clear soon.

Hope you get all clear too @SierraSapphire and anyone else waiting for tests.

If any former posters are lurking would be lovely to hear an update. I often wonder about the lady whose DH had died who inspiringly canoed her way around Norway but can't remember the username, think it began with P initially then C. I wonder about MrsPNut as well.

DD came in exhausted from working punting on the river and also rowing but is back out same today. I am tired from gardening and was woken up by DH having a meeting at 9.28am. I thought poor DH having to work at 5am then I looked at the time.

Thank you for your kind messages, and sorry to hear you have some anxiety at the moment too @SierraSapphire I know it could be nothing and there are a dozen benign possibilities but having had cancer once always makes it more likely it will be something worse. But you’re right, knowledge is power. And tbh, I’m glad they are looking at my thyroid even if it’s just standard. There’s a history of thyroid issues in my family and the nurses were worried about my heart rate at my infusion last week (initially 34 after I’d been sitting for a couple of hours) And I’ve been so convinced I’ve got something really grim that when I googled thyroid cancer I thought ‘well that wouldn’t be such a big deal 😂

Good luck with the wedding prep and tidying @TopOfTheCliff

I was the opposite this morning with my DH@MsPenguins I had promised him a lift to the station and thought he needed to leave at 6.15 so I set my alarm for 5.45 made coffee and wondered why he wasn’t rushing. Turned out he’d meant to say 7.15! I went for my swim and left him to walk since I’d got us up so early and he had loads of time!

@dotty2 sorry to hear you're going through this anxiety. If it's any reassurance, I've had 2 enlarged lymph nodes in my neck since 2021, I think slightly higher up than what you're describing but around a similar area, predating my cancer by 3 years, also on the opposite side to my affected breast. I had them investigated at the time on the 2 week pathway and found to be nothing - they told me sometimes people just have enlarged nodes, no reason, the specialist admitted she had the same! When I was diagnosed with breast cancer, I worried they were connected but they weren't.

Sorry to hear about your anxiety too@SierraSapphire and good luck with the check up.

@TopOfTheCliff your DSD may achieve the results you want, if only for a little while!

@MsPengiuns Well I went to Body Blast this morning (weights, resistance training type thing) and it was hard but rewarding. I took heed of your advice about building up and stuck to the lowest weight. I was the youngest in the class and on the lowest weight but hey ho, it's not a competition. The lunges and squats and press-ups were shock enough to the system without adding weights anyway! I've heard gardening is a very good form of exercise and God knows my garden needs it. I'd post a photo but would be too embarrassed and think @TopOfTheCliff's DSD would definitely disapprove!
Tonight am signed up to a speakers live Zoom lecture about exercise via Breast Cancer Now, which should be interesting.