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

[LemonDrizzle10]

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Hello, thank you so much for kind words recently.

I've spent the week getting my head around things - it's very treatable (invasive stage 1 pending an mri and surgery, possibly mastectomy) but going onto tamoxifen after finally getting my hrt right is a challenging thing to get my head around. I wasn't coping well before hrt and this is a cruel twist. But will keep me "well."

I've been trying to micromanage a million things to ensure time off work is manageable and coming back is smoother (teacher - but a specific role and not easy to hand on.) I was told firmly by the head that that is my way to gain control but I do feel work is going to be easier to return to if certain things have happened. That's the bit I'm most scared of.

I've read too many bad things about tamoxifen but also know friends who've struggled.

scalpcoolingstudies.com/efficacy-calculator/ this tells you the efficacy of the cold cap for different regimes. There's a nice Paxman FB group too (the machine they use).

I got my wig via Macmillan at my hospital, I just googled it myself but I think the chemo nurses also refer you when you start. I wanted to be prepared though.

8 of 18 today...almost half way...feels like a very long time since I was on week 1 & panicking about chemo and my hair!

Dd2 said today while we were out for dinner after that you can see my hair better in the sun 🤣

I've just spoken to work about going to sports day next week & staying for a brew. They're happy for me to go in whenever so I'll pop up then and see everyone I want to. Can't wait to see all my little buddies - work mum was telling me how far they've come on Tuesday 😊

Hope everyone's day's going ok.

Oh, almost forgot, they've changed how they do appointments so now everyone on x chemo is in early, followed by y chemo at this time, z at a later time 🙄 I much preferred being in and done early. & what about the folks who can't do between this and that time 🤷‍♀️

Moan over - I do sort of see why they've done it but still a bit annoying (and means poor Marvin will have to make do with a sarny 😢)

I recommended a place earlier in Ware Hairtowear. They are amazing and you can get your eyebrows done there as well. You might be entitled to a voucher to go towards your wig. You will have to make enquiries at your local hospital. There is also a shop near St Mary’s. I would t order online until you have been into a shop and had a consultation

@EachandEveryone I'll look that up! Thanks for the tip!

I love how helpful this group is, wish I could provide more wisdom but feel like I’m just bouncing through cancer life trying not to fall over too dramatically.

I’ve had a quiet few days after getting out of hospital following a bad reaction to my 3rd chemo cycle. I’m down from 12 poos a day to 6 - go my bum! If I can get to 4 I can start dropping medication. I was taking 19 tablets a day when I was discharged. I felt like I needed a Webster pack like my mum lol. That’s down to 13 now.

I should be a few days into my final (hopefully) chemo cycle but instead I feel like I’m in a little false haven of no chemo, where my symptoms are all improving but sorry body you’re still going to have to do it all again. But it was DD’s 17th birthday yesterday and I could eat cake and today we are going out for lunch like a normal family. So I’ll enjoy my hiatus while it lasts.

Well done @Remaker you have done so well to escape after an awful time. Use the break to gather your strength for the final round. It takes fortitude to keep trudging on. Enjoy the little wins like today.
I feel very fortunate that despite the bad luck of having breast cancer twice in two years I have battled through 8 rounds of IV chemo twice and surgery twice, radiation twice, 18 Herceptin, 6 Zolendronic acid, exemestane and now six months of Capecitabine as the final flourish. I haven’t had a dose reduction or a delay apart from when I dislocated my ankle and had to have surgery.
My body is coping with everything thrown at it, poor thing, and hopefully it will all be worth it and the cancer won’t come back again. The secret seems to be to go with the flow. Rest when you need to, eat and drink what feels right and keep talking it the chemo nurses about side effects and how you are feeling because they can help you get through. I will come out the other side of this with such an appreciation of the simple pleasures of life. The birthday celebrations, the sunsets, picking produce off my allotment and the joy of riding my bike down a hill with the wind in my hair.
sending hugs
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Can I ask a quick question following biopsy on Monday? This was after suspicious repeat mammogram and they are sure it is BC. The lump wasn't palpable and only picked up on routine screening. Biopsy site doesn't hurt and I feel fine but the site is hard to the touch. Is that normal?

@isaxx where in London are you? If you're dahn scarf my hairdresser works with the Marsden and has a special area out back for clients with hair loss who don't want to be seen through the window. She manages hair loss/regrowth and wig fitting/hair pieces.

Irony is I am going bald anyway so started going due to fears I'd need her help. Now I've got a ruddy great permanent bald patch where the melanoma was I'm less fussed

@Remaker happy birthday to your dd 🥳 cake's always good, I'm glad you got to enjoy some. I was moaning about my 3 pills a day, the other day, 13 puts it in perspective.

@TopOfTheCliff wise words about enjoying the simpler things in life. Right now, I'm brewing a pot of tea and about to have breakfast, with the kitchen window and door flung open so I can hear the bird song. I hugely enjoy this part of weekend mornings, while everyone else is sleeping 😊

We're off out for lunch today. Well, me and the girls dad. Dd2 is a bit fussy for some places we like, and the restaurant I wanted to go to has shut down so I've been researching menus online & it's a toss up between two. There will likely be a trip to the bakery stall on the market, fruit stall, and some pointless but fun make-up purchase.

I've decided I'm going to learn to do all the make-up things I've always thought I can't do, since I still have sooooo many weeks off work to go.

Enjoy Saturday everyone 🙂

@isaxx I'm currently half way through a 12 week course of docetaxel and cyclophosphamide... this thread moves quite fast so I'm very happy if you want to DM me and we can chat in more detail. But basically my experience so far has been pretty good. It's a 3 week cycle that will be repeated 4 times, and I've had 2 sessions so far. I was also really concerned re permanent hair loss and so have been using the cold cap and I also bought some Daniel Field hair products after hearing some recommendations. Paxman are the company that make the cold cap machines and they gave a good website and there's also a FB coldcap group that has lots of good advice.

So far, I have lost quite a bit of hair...expect a big shed at about day 19-21 after the first treatment. But if you didn't know me before, and with some careful comb-over action, you probably would just think I just have thinnish hair. And with a baseball cap, you wouldn't know I was having chemo. This is in stark contrast to the people I know on the same treatment who haven't cold capped as they have lost all their hair. I suspect more of mine will fall out but I've been happy so far.

I have also bought a wig. I got some names of places (I'm in Surrey) from a local charity and I googled. It took me 3 different places before I found one I liked. The first tried to push me into a super expensive one, the second had v limited choice and the third place was brilliant in terms of selection and the advice they gave. I'm not sure how much I'll wear it but i have a couple of big events across the summer where I don't want to have to explain my health to everyone so the wig will be worn then!

One final thing...I really wish I'd had the chance to have my eyebrows micro bladed prior to starting treatment. They (and my eyelashes) are starting to thin and I'm not convinced my eyebrow pencil technique is very good.

Sorry that ended up being v long...but really hope it goes ok. It hasn't been nearly as bad as I feared and so far by D10 of each 3 week cycle I've felt completely normal again.

@craggyrat similar thing happened to me. I think it's because there's been a bloody great big biopsy needle pushed into our boob and you get localised tissue swelling as part of the healing process. I'm sure others will have good advice too though. I really hope the next few days/weeks pass quickly for you. The initial waiting bit completely sucks.

@TopOfTheCliff I've just remembered about your oracle cards - what did today's say? I was browsing tarot card decks yesterday in a local "woo" shop - always been fascinated but never got round to learning to read them.

Thanks @Atreus - full results Tuesday so should get some idea of next steps then

I didn’t. I chose not to as it seemed like tempting fate to me. Fairly high chance of recurrence and I did not want to anger any possible deities by boasting of my battle being over.

Lots of people do, to celebrate getting through chemo. Each to their own, whatever makes you happy, but not for me.

Morning everyone, happy Saturday. Hope everyone is doing okay. Not much happening here, marker tests are next week for 6 month check up (7 in reality) and ever since I booked the tests on Thursday I’ve been in a vile mood. The usual anxiety coupled with total bitterness and rage last night at a family meal as people moaned and whined about turning 50 while I sat there thinking statistically I’ll be lucky to GET to 50! God how I miss the pre cancer ignorance.

I am 10 days post surgery now and after weds appt with the nurses where a plastics dr and another breast surgeon were called in to check my wound - they told me my nipple was dying - I had another appt with the surgeon who did the work yesterday who told me she thinks it will be fine! I don’t know whether the drs on weds were being over cautious or whether my surgeon is trying to play it down, she did remove my drain which I am very pleased about! Unfortunately my histology report wasn’t back so I still have to wait until Thursday to get that!

I seem to be the opposite to most of you were my first treatment has been surgery, how do they decide whether you get chemo or surgery first?

@Scandimandy the decision for me was based on the need to get something into me asap because it had gone haywire.

I was incredibly stressed with family illness/death/being very run down & it seems to have taken that opportunity to do what it wanted. I spent weeks being unwell with the ascites & didn't for one second think to check my breasts (who would with a swollen stomach area 🤷‍♀️) or it might have been caught sooner/not gone as nuts as it did.

@Atreus Thank you so much for your detailed reply. Good to hear - both for you and for me - that your experience has not been to bad so far. I will be having exactly the same regimen.

Would you mind giving me the name of the third wig place you went to that you were most happy with. I sometimes go to Surrey for appointments, so might combine things. If anyone has any central London based recommendations of wig places, that would also be very welcome.

@Scandimandy I too had surgery first as they thought my tumor was very small. In the end, following surgery, it was bigger than they thought (20mm rather than 14mm), but luckily node negative. So, I am now having chemotherapy after surgery.

Same. Though at least I made 50. A friend of mine who's 58 was complaining that she might retire then die at 75 like an ex-colleague of hers. Okay, previously I would have thought 75 young-ish to die, but now it seems a good old age!

Waiting for things is awful. I have consultant appointment on Wednesday to look at whether this thing on the scar at the top of my vagina is a granuloma from the scar (not usually cancerous) or a recurrence. My blood test results don't show inflammation, but FBC is still low after chemo.

I completely get being in a vile mood, this is me when I'm in one of my 'appointment' times when I'm dreading tests and results. I would also be bitter and so irritated at your family meal, I miss my pre cancer ignorance too. I did make 50 though so your situation is even more unfair. Everyone assumes when you're out from active treatment that you're cured and that's it, you just pick up where you left off but it's not like that. No-one understands the cold fear of recurrence and all its implications.

I had my CT scan yesterday and once I'd got home I rang the CNS line, which is my usual routine, to alert them to put me into the appropriate MDT meeting prior to my onc appointment at the end of the month. My call went to a voicemail stating that 'due to unforeseen circumstances the gynae CNSs will be completely unavailable for at least another week', followed by a list of extension numbers for various different departments. I usually can get my scan results over the phone a week or so before my onc appointment but I've resigned myself to this not happening now.

It was so short-staffed at my scan yesterday, one nurse doing the reception desk booking people in and giving them forms, answering the phone, plus taking out cannulas which meant going to another room! The radiologist had to come from the mobile unit in the carpark to collect me and another patient from the main building. He explained as we were walking that no-one answered the phone to him to say they were ready for us and I told him about this one nurse. He relayed this to the other staff in the mobile unit who weren't aware. This must have made things run late, so once he took my cannula out, he said it was normal to bleed at lot when on blood thinners like me, so 'just press on the bandage as you walk back to your car'. I was fine with this but it feels a bit slapdash!

@SierraSapphire I also now think that 75 is a good age. No inflammatory markers are encouraging so I'm really hoping you get some reassurance on Wednesday, the waiting is awful.

Thanks @Fantasea - I've just snapped at my DD, so stress showing.... I worked all through chemo last year, but I don't feel able to take on new work now so I'm powering through my life savings (self-employed). I'll see what happens at the consultant appointment this week but then I think I'm going to have to pay for help with my bloods as all the GPs do is send me for repeated blood tests, which all show the same thing.

I should also say @Fantasea good luck with your scan results, the situation sounds crap. That's what's worrying me too, the prospect of if there is something wrong the situation with the NHS meaning it's going to take a long time to get fixed. There were big delays in my original diagnosis, then hysterectomy (six months between me identifying I had a problem and hysterectomy), then chemo starting (another 3 months when 1 is ideal), and I'm expecting things have got worse since then.