Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Thanks both of you. I think it was just a shock after it's held on so long. He's going to take what's left in the morning. I really didn't think it would go in one huge clump - the steady molting of the past few weeks was easier to handle, mentally.

I’m sorry about your hair @lucysmam. The emotional battles are as hard as the physical ones sometimes.

I had a crappy day yesterday. Beautiful sunny winter’s day. Couldn’t make it out of the house to watch my kids play sport as I normally do on a Saturday. Just lay around on the couch or in bed all day. Barely ate, just enough so I could have my Cape tablets. Went to bed at 9 and slept for 12 hours - cannot remember the last time I did that! Hoping it means today will be a bit better.

Ah @lucysmam the exact same thing happened to me. It’s very upsetting. I ended up with a huge big matted lump and I’d just got my hair exactly how I wanted it.

But I’m sitting here now ten days after chemo and it’s growing back! So while I know it’s horrid at the moment, it will grow again.

It’s winter here so I’m rocking a bright red beanie - on days out a wear a wig under it! I was looking at headscarf’s - the thin ones to put over the wig hairline the other day in a couple of shops. Might be something to consider.

@TopOfTheCliff sorry to hear you are so fatigued. I dealt with a chronic illness before the cancer so I know all about the spoon theory. All you can do is take joy in the small things. Can you concentrate to read? I started writing some fiction but there were many days when that was too much. It’s ok to just shut your eyes and nap. Best wishes.

I’m going ok. I saw my surgeon this week and after the pulmonary embolism and blood clots we have decided that a more simple approach to my masectomy and reconstruction might be better. We don’t want to risk more clots. We were talking about doing two stages - reconstructing from my stomach - a big surgery. Just the thought of two more surgeries was stressing me out. (I had a hysterectomy and then a seperate surgery where they took my second ovary out because they’d found precancerous cells at the end of 2021). So it looks as if it will be one surgery now with implants. I feel almost cheerful about this as a solution.

My legs have been sore this week I thought it was the clots but I suspect it is siatica! Just my luck.

Welcome to the newcomers, it’s such a great thread. Very helpful people and great advice.

Hey @lucysmam i know the hair thing is shit, for me the big thing was when my eyelashes went, but if it helps I’m only 2 weeks past my last chemo and have noticeable regrowth to the point I’m nearly ok to go out in public with no hat - and after Springsteen I have discovered bandannas so that’s my summer headgear sorted.

Hi all, I have my scan tomorrow, the letter states it’s a transvaginal scan and I will not get results until the consultant has reviewed which will be within 2 weeks. The issue I’ve got is that where I’m getting the left side pain under the ribs, a swelling has come up (on top of an already very swollen stomach) and I’m getting a squeezing type intermittent pain in that area. I’m also so exhausted I’m finding it hard to do anything even hanging washing out is hard work. I don’t know if I should go to a&e today or ask scan person to scan that area aswell (if they will).

Thank you all, I feel slightly more "big girl pants on & deal with it" this morning. I had a good cry about it last night, and again this morning.

Dd1, bless her, had her practical head on & tried to help by telling me how it's so my body can concentrate on the important stuff of fighting the cancer. She's going to look up how to wash and dry a wig someone's given me, and then how to wear it too, in case I haven't heard from the wig lady before prom night. I probably need some glue or tape or something to stick it to my head 🤔

@Remaker sorry you missed seeing your kids play their sports yesterday. Hopefully you feel brighter today?

@FairyWren7 yes, I'm holding onto "it'll grow back" very firmly. Will the one surgery be less risky, clot wise?

@bringonyourwreckingball I have a couple of ready tied headscarves but my friend who has alopecia sent me a link to some pretty bandanas last week. Maybe I'll treat myself to one of those - I do like presents from the postie 🤣

@Therocksword I think I'd be tempted by a&e today, squeezing type pain doesn't sound pleasant at all. Both my consultants, and their registrar have been very clear with me that if my stomach swells to the point where I'm struggling with everyday stuff, I'm to head to a&e. I hope you have some answers soon 💐

I'm sorry for all of you who are struggling at the moment - especially thinking of you Top, as you spend so much time passing on words of wisdom to those of us going through this shit show.

So after my simple lumpectomy last September, hematoma and a wound that failed to heal, I had further surgery at the end of May. The idea was to clear out the cavity and scar tissue, and when they were operating, they did a partial flap reconstruction and fat injection from my tummy (wish they'd have taken more than they needed!)

So nearly three weeks on, surgeon doesn't want to see me for 12 months, and everyone is happy with how the wound has healed. I'm still petrified that every pain or pull is an infection coming back, but I need to get on with it - and my life. DH and I are going away to the Cotswolds for a few days today. I am so excited. Fingers crossed all goes well, and builds up my confidence to do lots more!

Sending love and best healing wishes to everyone.

Morning everyone

@lucysmam I feel like I need two devices to read this thread on, one to read what everyone's said and the other to type replies 🤣 Sorry to hear about your hair. @Atreus yours too ☹️☹️ @bringonyourwreckingball you have definitely found a good summer look ☺️

@dotty2 thank you, I'm glad I went too 😁 thanks for sharing your experience of chemo, I'm hoping to work through mine so I love all the positive stories of people who managed that!

@Therocksword no advice but I hope you are okay 💐💐

I am still nervous/bracing for surgery next week (lumpectomies + lymph node clearance). Need to get my shit sorted, pack a bag and just deal with it. Really would like to hide in a hole somewhere with just DH though, rather than have to deal with putting on a brave face for the DC and seeing relatives!!

@AllotmentTime yes! Two devices would be perfect 🤣 I get you on the hide in a hole thing - it'd be much easier if we could do that. I hope your surgery goes well 💐

@ajandjjmum that is fantastic news. I’m so pleased for you that things have finally settled (fingers crossed). Have a lovely time in the Cotswolds.
Thanks for your kind words too. I think back to the religious lady I met in the church of St Pancras on Dartmoor who told me this cancer is here to teach me kindness and empathy. We can all improve on those qualities however kind and empathic we were before cancer.

@AllotmentTime what day is your surgery? We will be rooting for you.

I am going to spend a spoon going to fix some dinghies this morning. Then a nice coffee stop and a rest afterwards. Pacing is the answer.
Sending strength to you all. Less hair is good in the hot weather.
Top

Can I just ask, is it normal to sweat so much during chemo? My face is awful. I cant wear my lovely wig as its torture. Im going to the theatre today and my friends will be dissappointed as they are excited to see my wig. I have Glastonbury on Wednesday and it will be the same thing. Ive been excited but now Im dreading it. I know its hot but i dont know anyone with beads of sweat on their faces. I just need to know its normal.

I've been lurking on this thread but I have to reply to this, yes it is normal to sweat a lot, you can ask your dr for a couple of things to help stop the sweating if it's making your life hard. I was put on gabapentin to stop the sweating and it's worked really well. I'm not on chemo. I'm on targeted immunotherapy but the sweating was insane.

Oh i think it might be too late now is it someting the gp can do?or is it oncology

@EachandEveryone my gp prescribed it x

Maybe me ill call them but isnt it a controlled drug? Also i have tiny red spots all over my feet like little pin pricks is that another delight?

@dotty2

Regarding tumour size etc after chemo vs no chemo, from my own personal experience, I think in 'real life' they seem base decisions on how it was on diagnosis. At least the radiologist and MDT did for me: they decided to give me 15 sessions rather than fewer despite pCR because I was so locally advanced on diagnosis (tumour over 100mm plus multiple lymph nodes). The study could also have based it on the situation on diagnosis too, pre chemo. So many variables it must be almost impossible, let alone all the genetics, phenotypes etc

The other thing that is on my mind about it is the stage on diagnosis. A very treatment responsive stage 1 HER2+++ with the most modern meds doing better than a non-responsive stage 3 grade 3 HR+ HER2-neg is certainly imaginable. Were they comparing closely like for like stages?

Don't mean to pick holes in the study, it's just I'm learning about this as I go with having this aggressive but targetable subtype myself, and discovering the minefield cancer is because of the infinite variations. I'm not a scientist, so I expect I e.g. oversimplify it in my mind in comparison to people with a science background.

@Peppapigboresme

Sorry to hear about your money worries. I don't know if these suggestions are any good, but I found this on Sky New today

Sam Richardson, deputy editor of Which? Money, said:

"Mortgage lenders are obliged to offer support to their customers, so those struggling to meet mortgage payments should speak to their lender about what help is available. Doing so will not affect your credit rating. Further support may come in the form of temporary break from payments, interest-only repayments or extending the term of the mortgage. If you're entitled to benefits such as universal credit, you may be able to apply for the government's support for mortgage interest loan scheme."

As you have cancer, once your statutory sick pay ends you are entitled to contribution based ESA and be in the support group which pays £259 every two weeks. I recently discovered this and have just been paid. You won't need an interview, it's automatic as long as eg your GP or hospital confirm your diagnosis and that you are having chemo or radiotherapy.

A lady rang me from the job centre regarding my ESA application and she was so nice; they ring to check whether you've got a job to go back to at some point and whether you'd like to go back. I said I had and would like to; not sure what they do if a person says no, but maybe they'd offer support finding work once / if the person is well enough in future.

If a person has an illness or disability that is unlikely to improve enough to be able to work again then I can't imagine they'd ask about their job, but I don't know what their protocol is. Sometimes these things are simply unpredictable aren't they - I know a person with stage IV who had mets in 3 body parts including lung and liver, who is now back working part time because the targeted therapies are working so well for her.

@Greyandrare123

'warhead chemo'-- I haven't herd that term before, but it sounds good!! Keeping my fingers crossed it blasts the cancer.

You mentioned your manager comparing your treatment and situation with her sister's which consisted of a bit of early stage low grade ER+ e.g. 5 days radiotherapy, and I was wondering about your GP. Maybe they could write a letter stating any adjustments you need at work?

@ClashCityRocker

You've been through far too much already; I really hope this works out for you and you get the brachytherapy. I'm crossing my fingers, please let us know.

@lucysmam yes that’s what the surgeon said and it will be a shorter surgery too so less risk. Maybe an hour or so. Instead of two much longer surgeries, second one around eight hours he seemed to think. For me it’s a no brainer!

With the wigs I got they give you a hairnet thing that goes underneath that seems to keep it in place. The wigs sometimes have an elastic little step with like a hook and eye on the end that you can tighten to hold it in place. I don’t like it tight.

Wearing them in the heat was tough. But I wore a straw hat over the top to make it less noticeable and now it’s winter a bobble or beanie hat. I’ve always liked a hat so it makes it feel less false in a way!

@WorryMcGee that sounds encouraging. I’m taking the biotin supplements. What’s the horse shampoo? My hair always used to grow really fast but who knows now that I’m post menopause. That might have some bearing on it I think.

The other question I wanted to ask everyone about was the numb hands and feet - if you had that as a side effect does it wear off? And how long does it take after chemo? It’s making me very clumsy.

@TopOfTheCliff

I know what you mean about some people who had quick surgery and 5 days radio talking as though it gave them shellshock and was utterly horrific. That level and length of treatment is the image of breast cancer. A lady at the CAB told me on the phone "you've got breast cancer, people with breast cancer are usually fine" she was astonished when she discovered I was bald from chemo. Another person told me "don't worry, they cure breast cancer now" as though 100% are cured. GRRRRRRRR

36 months of treatment, oh my. To date, mine has been a year now, chemo 6 months, surgery, 15 sessions radio and a year of 2 immune therapies and I feel at the end of my tether physically and mentally. When I was given the treatment plan that looked like between around 15 months to over 2 years, I kept hoping I was going to wake up from a nightmare. this is primary breast cancer I was thinking, why not a tiny surgery and touch of radio, like they always portray in the press; why all this awful anthracycline chemo stuff etc etc for ages?

I did start cancer treatment having been unwell for a long time before with a different thing (under two consultants), so probably very low before the cancer treatment even began. Chemo is incredibly hard, soul destroying. Immune therapies cause nasty side effects, heart and neuropathy in my case. I actually found radiotherapy a bit of light relief (don't know what it did to my insides, but at the time it was fine).

Your 36 months, is that for the more recent TN or does it include the previous triple positive? I can't imagine getting a second one it's too horrendous to think about let alone experience. 36 months I don't really know what to say, I just hope so much there is light at the end of the tunnel VERY SOON for you xxx

@TwigTheWonderKid

What a horrible, horrible shock that must have been to hear that about the appendix and abdominal cavity. Good luck with the scans, I really hope the news about your ovaries, liver and lungs is better. Please let us know.

I'm so sorry you lost your Mum when you were so young and only a few years older than your kids are now. The only thing i can say is (that as we all know) treatment has progressed a lot in those 33 years since your dear Mum passed, and hopefully there are very effective treatments for you.

@AllotmentTime and @bringonyourwreckingball

That is so great! Thanks for posting the photos!!

@RedRosesPinkLilies

I don't know about Scotland to England, but when I was thinking about switching hospitals (mine kept forgetting my scans, they got results muddled, told me I was on different meds to what I was actually on, thought I was having 5 days radio when it was 15, counselling incorrectly got cancelled 3 times and nobody noticed the error, etc etc ) they tried to persuade me against it, but said of course it was my right to switch.

I didn't switch in the end because after telling them I wanted to, suddenly I got given all sorts of stuff like counselling, physio, prothesis, scans booked in advance etc etc.

In your case, I would definitely request Basingstoke. Maybe even contact Basingstoke yourself directly now? Do you have any documents to send them about your exact cancer and current treatment plan? If so, I would send them copies.

Best of luck, I hope you get transferred to somewhere that has the right expertise.