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 just sitting at the hospital waiting for a CA125 test. Had my consultant’s appointment and said that I wasn’t sure whether or not I was bloated so she’s booking me in for a CT scan just in case, as that would be a sign of recurrence. I’m genuinely not sure whether I’m bloated or not! Hopefully all is fine, but who knows. It’s miserable. And the HCA in gynae couldn’t find a vein so now I’m sent to the main hospital bloods place and queuing. So obvs feeling sorry for myself!

Hope all is fine @SierraSapphire and results back quickly.

Builders in today from 7.30am so bathroom has not been available all day upstairs and downstairs is DSs. Now saying can't do in a day but will be back in tomorrow. The one builder put his foot through to the kitchen ceiling so that will be redone. Then needs to be tiled later for floor.

Hope all is good @SierraSapphire .

I hope you get good news @SierraSapphire

Fingers crossed @SierraSapphire

@MsPengiuns that’s a nightmare! Will DS let you share his bathroom?

@SierraSapphire hope you don’t have too long to wait for results.

I am on a mad week long spree of tidying up and painting and gardening. On Thursday we have the new in-laws-to-be coming to tea before the wedding. I shall have an immaculate home filled with flowers and loveliness by then 😇. I shall film it all to remind me how nice it can be even when DH has cluttered it all up again 🙄
DSD has developed some Bridezilla ideas but we are just smiling and nodding “yes dear”. She is getting stressed having to look after the in laws who are a long way from home.

Hope the wedding and pre wedding events go well @TopOfTheCliff

The builders did put the toilet and bath back in at about 4pm which is good. They are back tomorrow. DS is mainly in the garden now and DD was at work doing punting tours and then out coxing so it wasn't too bad. The builder will repair the kitchen ceiling again, and they are back 7.30am tomorrow. The bath did leak a bit but DH tightened the pipe connection and sorted that, think they forgot to put that back properly.

The cat was terrified as they came with a giant crate to take the old floor out and things in and cat thought they had plans to catch him so he stayed hidden under my bed all day. Though he's been out for a thorough inspection since. They are undercovering a few things - the wall tiles have been put on over other 70s tiles (olive green) though they are actually OK still but could see when sink came out. The bath overflow is apparently connected to nothing so they will try and sort that tomorrow and they said bath is 20cms in wrong place. There were comments about the placement of extractor fan too. I cleaned it all after they left and have been packing things too. We have got a new bath mat and will get a new bath panel and have got rid of old one today. The tiling of floor will be done later.

DD came back and wanted to know everything and then she went to tell DS and came back and said he even turned down his ipad to listen to me.

@SierraSapphire I’m sorry to hear you’re going through the stress of investigations and hope you get answers quickly. Well done for facing it head on. And thanks for sharing the article too. I found it fascinating how different their attitudes were. (One thing that often makes me despair on forums, though not on this thread, is how many people have no imagination and assume that the way they feel is the way everyone must feel.)

@ememem84 I have just finished my two years of abe and I was pretty lucky with side effects but I know a lot of people find the bloating and diarrhoea hard. Don’t hold back on the loperamide. I found taking half a dose early if I had issues often shut it down.

It’s my last day in my temporary job today. I’m a bit sad as some of the people have been lovely and I don’t have anything else lined up. But I’m relieved too as it’s been tough. I had a brief crisis earlier in the week about my career and the opportunities I could/should have pursued earlier on. But at the start of my cancer when I thought I was going to die, not achieving more professionally was not the thing I regretted.

Thanks for all the good wishes, I laid on my bed this morning poking up my stomach (I’m sure lots of you have had similar experiences in different bits of the body poking at something and wondering, “Is this…?”!) and I’m definitely not permanently bloated, so I’m hoping it’s just the digestive issues that I’ve had ever since chemo that are making me feel a little bit odd. I’ve got some CosmoCol to pick up from the chemist, it just makes me feel very old though so I keep putting off going to get it! Anyway, I’ve still got to go through the stress of the scan, not sure when it’s going to be, but I’m not feeling quite so bad as I did yesterday. And if I do get a negative result at least that will put my mind at rest, in theory I should be out of the real danger period now of recurrence anyway. The consultant said that they do treat recurrence much more aggressively now, including surgery if there’s only a bit. Anyway, I don’t think it’ll come to that.

It seems like most of us who have identified with one or other of the women from the article are more like Decca, I wonder whether that’s because the Victorias are all off living their best lives rather than posting on a Mumsnet cancer recovery thread!

Great tattoo @ememem84- I have one on my stomach where nobody can see it, purposefully done there in the 90s so I was able to cover it up as tattoos were less common.

Bathroom sounds stressful @MsPenguins- I’ve got a whole load of home improvements that need doing once I’ve got money from my DM’s house, but it just reminds me how much time and headspace you need to organise it all and the things that go wrong along the way!

I think we were probably doing similar things originally @dotty2careerwise, but I’m glad I’ve taken a steady job, I’m enjoying it and it takes up so much less headspace. I was saying to a colleague the other day that I have no ambition to develop my career at all, I want to do a good job and develop the work that I’m doing, but I have completely lost any ambition for anything bigger. It’s really worked for me because it’s giving me much more time to do other things. I do miss the ability to just take off for the day that I had when I was self-employed, but still on balance, the quality of my life is much better now. Hope you find something that works for you next, but also you went through a stressful time with your scare so taking some time off, especially whilst the weather is still warm, I’m sure would be nice!

I'm a lurker on here, rarely posted but am now worrying about little bit. Breast cancer treated in 2021-22 with lumpectomy, chemo, radiotherapy,herceptin and have been on Exemestane since April 2022. All good. I'm now 56 and have just retired from teaching.

Developed a rare type of asthma which they think may be from either Covid or radiotherapy (terrible breathing problems, cough) but this is now sorted and I'm being treated using biologics - an injection I have every 8 weeks. Along with the Exemestane and the Biologic injection I suffer joint pain. It causes me discomfort mainly in my ankles, knees and elbows. I had a bone density scan in December which said mild risk of osteoporosis and my oncologist wasn't concerned when I saw her in January and said they will monitor going forward.

But last week whilst on holiday I realised I had a different pain in my left thigh. I sleep on my left side and my upper thigh bone felt bruised and when I gently pressed it was quite sore. No other symptoms, no pain unless I actually press my leg. I can do all normal activities swim, walk etc which I do weekly.

Went to see my GP yesterday who sent me for a same day x ray. So now I'm panicking. Reading stuff online last night and looking on secondary cancer forums I'm pretty sure this is bone mets.

Im now wondering should I have rung my breast care team and told them instead of GP. The X-ray can take up to 4 weeks to come back.

Sorry you’re going through that @BG2015- I think it’s really easy to assume a symptom is related to cancer, which it very well might be, but it very well might be something else as well. I think we’ve all been there! I would hope things would be picked up quite quickly on the x-ray if there’s a problem, but I think there’s no harm in calling your breast nurse anyway, they might be able to put your mind at rest a bit.

Thanks for your reply. I may just ring them and tell them what's going on, we usually leave a message so it's not like I'll have to actually speak to anyone at first.

I know people can live for years with bone mets and live pretty normal lives. Trying to be positive.

Sounds like a good idea @BG2015- I have to say I find it really confusing what to call the hospital about and what to do with the GP, it seems really disjointed. In addition, when I tried to fill in the online form recently for the GP around bloating, the options didn’t come up with anything that was very useful to flag that I was worrying about a cancer recurrence, the choices on offer made it sound like quite a mild issue. I know I could’ve phoned them up but honestly if they have online systems, then they should really work to pick up things that might be priorities. It’s just another barrier. I had some granulation tissue and there was a question around whether it was a recurrence it was the GP who made a separate referral under the two-week rule, which seems a bit daft really considering I’m already under the hospital and still being monitored.

It is very confusing isn’t it.
Ive left a message so at least they’re in the loop!

Just spoke to a nurse from the breast care team. She doesn’t think it’s bone mets as I have no pain just pain on pressing the bone. Happy to agree with her but I’m not convinced. She says have I twisted my leg or knocked it somehow but it doesn’t feel like that! Plus I’ve been lying on a sunbed for 2 weeks.

Not sure if it’s psychological but my hips feel really achy today, the brain works in mysterious ways doesn’t it.

Just got to wait for the x ray results now and try and get on with life.

I do find the specialist nurses generally know what they are talking about, so hopefully a bit of reassurance, but yes, it is difficult to believe it until you have actual results. I sometimes think that I have just been imagining things by focusing on them, alternatively I was wondering this morning whether my slightly weird sensation in my stomach was because I’m repeatedly poking it 😂.

This is completely different and also similar, I noticed a the light flashing on my car the other day and I panicked that something had gone wrong with it, I’ve had the car for a year and I thought I’d never seen the light before, but when I looked it up it was the immobiliser light that apparently always flashes when I turn the car off, it must’ve been there all the time as you can’t disable it but I’ve obviously paid no attention to it and could’ve sworn that it was a new thing! I wonder if this is the same with things about our bodies. I have loads of bits that if I press them, they hurt, And probably have done for years. I went to the GP with something not long after my chemo and it’s basically just muscular, but who knows how I did it, it’s just below my ribs. It still hurts now 2.5 years later! I probably would’ve paid no attention to it at all pre-cancer.

I agree, I’m the same with my weird lymph node above my collarbone. Maybe it’s been palpable there all my life and I’ve just never prodded it before. (Still finding it hard to completely stop worrying about it though, even though two different drs have told me I can sleep easy)

I wish now I'd asked her "can you explain how you know that it's not bone Mets? What symptoms would I have if it was?" I should have asked more questions.

@BG2015 sorry to hear of your worries. I had shoulder pain last year and got a bone scan. The reason was persistent pain that continued at night even when resting. It was all fine, turned out to be an impingement in the tendons. Hopefully yours will be similar. It is so easy to go down the rabbit hole of worry.
I woke up today in a tidy house full of flowers. We had our afternoon tea party yesterday with the incoming in-laws and it went really well. I would like to bottle the essence of loveliness that my house is exuding today. It won’t last! But now we start the three day Indian marathon wedding which will be fun.
Have a lovely weekend folks.

Ahhh thanks for your kind message.

I had a Dexa scan just before Christmas last year and according to Google a Dexa scan should pick up any anomalies in your bones, so I'm hoping that's the case.

The tenderness is still there but it's not affecting my daily life in anyway and I've done my usual 30 lengths this morning.

Your house sounds very peaceful and beautiful this morning, I hope you've bottled it on your memory.

My DP is 60 on Sunday so we have a weekend of celebrations too, BBQ and a meal out. He has some surprises he knows nothing about 🤩

Going for a DEXA scan now with a radioactive injection first. Had an out of the blue phone call from Nuclear medicine that made me totally panic thinking they’d found something on the x ray already.
But the GP ordered this on Tuesday, same day as my x ray -talk about spiralling 😳 just wish they’d told GP had told me - I found it on the NHS app’
I had a Dexa scan just before Christmas too 🤷‍♀️which was fine and just showed higher risk of osteoporosis.
Im hoping he just being cautious as it’s made me feel totally sick with worry

EDIT it's not a DEXA scan, it's a bone scan.

Enjoy the wedding celebrations @TopOfTheCliff

Have a wonderful time @TopOfTheCliff

Have a wonderful time @TopOfTheCliff

@BG2015 i hope it’s just a precaution. Fingers crossed for the results.