Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@lucysmam you look fabulous!

@bringonyourwreckingball glad to see your surgery went well, I hope your recovery is uncomplicated!

@AGreatUsername did they biopsy the ascitic fluid? I didn't know they could do that - quite fascinating the things that can be done!

@Remaker good to see you're out of hospital, hopefully you're catching up on some sleep & able to recouperate better at home 🤞

Thanks for the comments on the wig @bringonyourwreckingball @AGreatUsername it feels weird & may well not come out again though. I had to get dd1 to come feel my shampoo covered head in the shower (which, of course, she eyerolled at 🤣). It feels like when you pick up a hair-spider from carpet & run your finger tips over the carpet 🙈 It's still growing though - channeling my inner, grey haired, porcupine atm.

I've had a lovely day - spent a good few hours seeing my best friend and her dad. They fed me cakes & home made bakewell tarts 😋 and her dad bought me a pretty cup and bowl for breakfast time (he's ace, I love him to bits 🥰).

Then saw my work mum sat in her front garden on my way home, so sat and had a coffee and put the world to rights with her too.

Oh, and, I saw some of the kids from work too who are moving up to secondary in Sept. They were a bit gutted I'll not be there to see them off but I'll pop and say hello next week when I go for early years sports day.

My dad's coming tomorrow now because it was heading past tea time when I got in & I was ready to stop. He's done me some more shopping ...I've misplaced the bag of frozen sweetcorn from the last lot somewhere 🤷‍♀️ that'll be a nice surprise when I find it. I'm hoping we've used it all and I've just forgotten allllll about it!

@lucysmam you look great!

@Crimsonbow Under 35 is considered normal for CA125 which must be why your GP said 'acceptable'. Mine was 1115 at diagnosis so I'm really hoping yours is a benign cause too.

@lucysmam the wig really suits you!

@lucysmam looks fab! Glad you had a lovely day.

Well the taxi that they were adamant will have been booked for patient transport but there was no way to actually check when I rang to confirm predictably....didn't turn up. Fortunately I managed to get a local one fairly quickly when I realised it wasn't coming (would need to be at mine for half five for a seven pm appointment so I got one at six) so wasn't too late....and to be honest when you do arrive you're laying around for at least a good hour before anything happens so was fine in the end.

But final brachy done! Fingers crossed, toes crossed, everything crossed this is the final cancer treatment I need to have. Really feel for you ladies having a much longer slog.

To be fair the brachy has been the best bit of the treatment. It's a nice chilled day and being able to chat to other ladies who have gone through the same treatment has been reassuring. It's one thing a doc telling you something is normal but another thing to have actual shared experience with someone - even if all you can do is moan!
And the staff were absolutely amazing.

Now the long three month wait for the dreaded PET scan and time to rebuild myself both physically and mentally.

Does anyone else feel really bloody lonely on this journey? I even hate the word 'journey' I feel like I'm not the person who was diagnosed with cancer 4 years ago. She's gone. I feel sorry for my husband at times, before my surgery I accidentally forgot I had the bath running until it flooded the kitchen ceiling, he had to take tomorrow off to Meet the insurance adjuster and explain how his wife forgot she was running a bath entirely because immunotherapy has made her incapable of remembering anything 🤦‍♀️

Hope you're all ok

@CoachBeardsJane i feel really bloody lonely. My marriage fell apart In spectacular fashion July-Sept last year, then diagnosed October so have been dealing with the whole shit show alongside my cancer. I’ve had to somehow keep work and the kids lives going on my own whilst doing really brutal chemo and immunotherapy. And now I’m nearly out the other side but I don’t know who I am any more. I don’t know how to be me.

@remaker glad you escaped. Time to recoup your energy before the next round.
@bringonyourwreckingball glad it went well and hope you have your follow up sorted out.
@lucysmam that looks great! Time to try out the life of a blonde bombshell perhaps. I bought a cheap porn star blond wig for a party and it was fun.

I’m having a lie in after my catering stint last night. We made a small profit and I am not too tired I just have sore feet today. It made me think I will cope with London next weeks as long as I use Ubers and don’t try to walk everywhere.

Sending strength and calm to all
Top

@CoachBeardsJane sorry you are feeling adrift. I am not lonely due to my lovely (second) DH but I am a bit lost. Three years ago I was a busy happy senior partner in a GP surgery coping with the start of the pandemic. Overnight I stopped work and became a cancer patient. I finished six modes of treatment, picked myself up and got fit then bam! New cancer back down the ladder to the start and off we go again. It’s nearly a year and I’m so tired and bored of being ill weak and no fun.
@bringonyourwreckingball it must be even harder having to navigate divorce as well as cancer. I did that 13 years ago and it sapped a lot of energy. You will rise again like a phoenix!

@CoachBeardsJane I so hear you on being alone on this journey and also hating the word 'journey'. Living in Cancerland is a lonely existence and I also am not the person I was 3 years ago, she has gone. Forgetting the bath is something I would do, I am so forgetful now and was never like this before. I had a blood test on Monday and my lucky vein was empty so she had to try the other arm. I felt like crying then which is a massive over-reaction. I have a scan on Friday which is on my mind - I routinely have a little weep in the waiting room there and I don't even know what I'm crying about really. Like @bringonyourwreckingball and others here, I've been on my own a long time and sometimes it all feels too much. I'm lucky to have good friends but I try to limit the amount of moaning I do with them as I want to enjoy my time in their company. It's all very hard Xxx.

@CoachBeardsJane absolutely. I am happily married but so lonely sometimes, trapped inside my own head. My DH is not a coper. He is weak and every time I’ve become sad and depressed instead of helping me up he joins me in the pit which I find so fucking unhelpful. Sorry to swear but it realllly annoys me. I want to not be the strong one just sometimes, just for a fraction of a minute but I can’t. I mostly opt for positivity and glibness but just occasionally I feel like cracking and I can’t. It’s caused a lot of anger and frustration in my marriage and I do feel like he has let me down by not stepping up. I am still happily married, mostly, but some days I hate him because of how lonely I feel.

I don't feel lonely in one way, in that I have lots of people around me offering love and support. But I do in another way, in that I feel I've been ripped out of the life of the cancerfree to live in Cancerland (as @Fantasea brilliantly puts it). And no one on the other side of the frontier really gets it, and I don't know how to live now. I swing from optimism that I might be one of the lucky ones who gets to leave for good, to being convinced I won't. I'd like it not to be the first thing I think about in the morning, and the background noise to absolutely everything I do all day. Sending love and support to everyone lonelier than me.

On another note, I started Abemaciclib yesterday - a long term biological/targeted treatment for high risk early BC. Side effects are immuno-suppression, diarrhoea and fatigue, with possible hair thinning. Nothing so far but it has massively increased my anxiety and the amount of time I'm spending thinking about cancer. Also there were delays with the drugs and getting started and so I'm going to run into problems with a planned holiday in August. I did ask my consultant about the holiday when we did the consent forms and he said 'absolutely, you can go, you should live your life'. But I am supposed to have fortnightly blood tests, which won't work with 2 weeks away. I hope I might be able to negotiate a slightly longer gap between tests if the first one is OK but am not optimistic. I'm so fed up about this - having had a whole year now of having to cancel stuff, never being able to properly plan etc.

Morning all. I think the loneliness is very similar to how you feel when you have been bereaved. No matter how many people are supporting and surrounding you their lives are going on as normal whilst yours looks the same but is utterly changed and this makes you feel separated from them and the world.

I've always been the kind of person who talks to people at bus stops but now the urge to talk to strangers is almost a compulsion, I think because it's a few minutes of contact where the cancer doesn't define me, the other person doesn't know what's wrong with me and I can feel like a normal person in the real world.

To all of those talking about the isolating nature of having cancer and going through treatment. I hear you! My personal situation is aggregated by living on the other side of the world from my close friends and family. We moved just before lockdown and that and working meant I’ve only really got a couple of friends and my husband oh and a very cute dog and cat! I quit my job to go back to the UK and travel a bit last year and then cancer turned up ( thought I’d sprained myself on my suitcase!) so that really messed my finances up! I’d planned for four months off and now I’m on a year.

@bringonyourwreckingball I’m sorry to hear you’ve had to deal with a divorce as well as cancer. That must be very tough. I hope you have lots of friends and family to support you.

I had a weird conversation with my surgeon yesterday, actually weird isn’t the right word. It made me feel very sad. I’d asked about nipple preservation, something we’d already discussed but after reading a couple of articles and asking here I wanted to double check the situation. He seemed to be shocked to be asked again - well yes, losing my nipples is not something I want to do unless I have to. The conversation seemed to focus on the size of my breasts and how they are not as ‘perky’ as they would be in a younger woman - I think he was trying to explain about the positioning of the nipples etc. It made me very miserable, as having ongoing gynae issues, a hysterectomy and a second surgery to remove my remaining ovary (they found precancerous cells) covid and now cancer - I have gained a lot of weight. It made me really upset and cross.

Anyway, the answer here re nipple preservation is that because I am triple negative that they count as breast tissue and it’s best to remove them and then have them reconstructed later. I hope this is good advice? I think if you have BRAC1 and no cancer they can do an earlier surgery and preserve them.

But on a lighter note since chemo has ended I’ve lost 4kg and have been doing 10,000 steps a day and Pilates. So being proactive. Well having to be really because my husband has pulled something in his leg so I’m on double dog walking duty! I’ve added a pic of the dog as he’s cute! :)

You have summed up how I feel perfectly. I have a 20-40% chance it will stay away. Supposedly. But it’s in my mind 24/7, it impacts every moment of every day, every decision, every thought. I wish that would go away.

@FairyWren7 on nipple preservation, I'm triple negative too but my surgeon said it was fine to preserve the nipple. The plastic surgeon however said, in my case at least (due to where the scar would have to go to reach my blood vessels for diep reconstruction), that it would look better to remove the nipple abd reconstruct later. I went with that advice, thinking also it might be safer. Turned out there was a microscopic malignant cell near the nipple after mastectomy so it was the better decision from a medical point of view too. That said, I did not hear anyone say that the triple negative status as such would have been a reason not to preserve the nipple. In the end, every case is different, so just make sure you fully understand the reasons your are given and are happy with what is being suggested. Very wierd conversation to be having though. I never expected to have to discuss preservation or not of my nipple..

Next step for me is chemotherapy. Not looking forward to that.

I'm having a frustrating clothes day, again 🙄<---- read that as a MASSIVE eye roll! My top half is ok...in a sweater I pinched from dd1, years ago, since it's cooler out. I do not however, have a single item of clothing that works with a pink sweater, while I'm smaller than usual. Skinnies are still hanging off me, the leggings I have have unpleasant hospital stay memories associated with them so are for emergency wear only and they hang anyway. Summery trousers don't lend themselves to sweaters & they slide down anyway because my hips have vanished. So bloody frustrating!

I've gone with pink sweater and rustish coloured wide leg jeans...and comfy pink slides 🤷‍♀️ Dd1 is on "go to the shops" duty. I can't go out in public like this 🙈

& the girls dad wants to go out for food on Saturday - it's forecasting rain. Wtf am I meant to wear that I don't feel more conspicuous than I already do ffs 😢

In other news - I found the missing sweetcorn, buried in the bit of my chest freezer where baked goods go! Also found some sausages in there and surprise hot cross buns 😋

I don't feel lonely with cancer as I have a wonderful supportive husband (obviously not up to MN standards but think he's great) and also been quite busy with all the cancer stuff and then son being in hospital. I think having breast cancer helps as the groups are big and I found 2 lovely ladies with cancer who went through the whole treatment with me via e-mail and quite a few more for part of it. Friends from before were quite variable but its also such a different world its hard to relate - its like I was plunged into a horror movie, full of rollercoasters, whilst they remained in my old world. Not being able to work increased that distance.

But I enjoyed researching all about cancer and the chats, I loved the support from charities and feeling random people cared enough to help, I loved the way people are sympathetic mostly. And it made me exercise like I did loads until a few years before cancer and that has massively improved my physical and mental health. Mental health was dire during treatment esp in steroids.

I do feel changed forever but not in a bad way with the cancer. I feel I got to experience it, experience the treatments, learn about it, meet lots of people along the way and I don't know why I don't feel more negatively about it - maybe as I hate dull. Though its quite scary reading the old threads and realising how many of those are no longer with us. I think I shut that bit out and just think what will be will be.

@isaxx I’ve recently finished chemotherapy. It was hard going but definitely not as bad as my imagination thought it would be. The staff in the chemo unit were absolutely brilliant with never ending reassurance. Chemo was a bit like a plane journey- the take off and landing were a bit bumpy but the bit in between was alright.

@isaxx thanks for your response. I know that you’ve had your diep reconstruction. I hope you are going ok and that your armpit pain is settling down. I think it’s odd that treatment seems to be different. But I think on balance I don’t want to risk any reoccurrence, got to try and minimise it as much as possible. I imagine you still have bandages on/dressings etc. Hopefully the scar tissue settles down well. Have you had to have a drain put in?

The other thing that was new that came out of the conversation was that he’s taking nodes out of my left side as well, even though the right side was the one that was the concern. I defo didn’t know about that.

@Scandimandy thanks for your response. Can I ask what type your BC is? Im TNBC and the surgeon has said that it’s best to remove nipples as it’s tissue. Are you happy with how it’s healed/healing? TQ

the leggings I have have unpleasant hospital stay memories associated with them so are for emergency wear only

@lucysmam I remember talking about this with @AGreatUsername. I had to sell my "chemo bag".

I've made much more of an effort since having cancer to be much more social rather than staying in the house working all the time, so in some ways I'm less isolated, but I do feel isolated around the constant cancer wallpaper in my head that most of the time I don't want to speak to other people about to bring things down. I've also got an appointment next week that I don't think anybody is going to be able to come with me to because anyone who would want there for support is working, though it's the first time I haven't had company. It makes me feel a bit sad and pathetic though! It's difficult that everyone else is getting on with their lives, and I am back in a cancer scare again so I'm trying to remain positive and focus on the GP thinking it's probably not a recurrence.

Oops the quotes didn't work around that first paragraph.

@SierraSapphire

This thread is great for shared experience stuff. I’m looking forward to chucking out a lot of clothes from this year - it’s all old stuff. I’ve deliberately been wearing things for dog walking etc that I can get rid of after and hopefully will be able to get back into my smaller size trousers in a few months! I hope.