Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@lucysmam yes, I had a 3 month scan but have now been put onto 3 monthly marker checks instead. I don’t have ascites (as far as I know anyway) and haven’t since my surgery but it’s always a worry when the menopause is giving me a lovely “pouch” on my lower abdomen where it used to be flat.

@SierraSapphire when will you have results back from that? It’s so nerve wracking isn’t it! I’m crossing fingers it is ok for you.

My step sister is getting married Saturday. I thought that by now (nearly 7 months post chemo) I’d be able to do something with my hair but actually I love like Beatles era Paul McCartney. Lovely.

Ooh @SierraSapphire how lovely to have a wedding to go to. Both my DDs have been married in the last year so I have gone for the Big Hat look. It works well with minimal hair.

My appointment for results is in August, so I’ll just be waiting to see if they call me urgently for a week or so. I was just saying to someone today they don’t set it up to give you the minimum distress.

Whoops that was for @AGreatUsername !

I find the lack of a good test for recurrence quite a relief really. My tumour markers for BC have never been raised so they are pretty useless. My mammograms have been normal but I’ve had a tumour pop up a few months later so they aren’t much reassurance. I will just keep checking for lumps and spare myself the stress of scans etc. What will be will be.

@SummerCycling I had an ecg two weeks ago; my heart's still (or was still) skipping the occasional beat. It's never bothered me but is apparently noted further back in my history.

@AGreatUsername can I ask why they switched from scan to checking CA125 instead? Don't feel you have to answer if you don't want to share!

@SierraSapphire that much waiting would be horrendous - they certainly don't have it set up to give the least distress!

Staring lady was probably just curious, which is fair enough. The way she did it was not subtle though &, I wonder if because it's so new to me, I was more conscious that folks may stare. I did have a very brief messenger chat with my favourite work colleague today to tell me which class she's in, and she loves it though (she's my #1 cheerleader lately too 🥰).

I'm assuming if I don't hear within at least a couple of weeks then everything is fine, but I had a friend who is at the same hospital who had the same set up with a appointment a long time after her scan, and then she got a letter bringing her appointment forward, so she was terrified there was something wrong in the scan, but when she phoned up there was nothing. She sent me a text, I was delivering training and all I got was the first bit of the message saying they sent her a new appointment the next week, I knew she'd had a scan done so I had to deliver the rest of the session freaked out myself, though fortunately I was nearly done.

@lucysmam I am not totally sure. I was originally told it would be scans 3 monthly for a year but at my last appointment the nurses words were “you may need lots and lots of scans in the future so we’d rather save the radiation until you have symptoms or worrying bloods”. I’d feel happier with scans tbh. Even if it was alternating with bloods so a scan every 6 months. As you know every twinge is cancer even if you know it’s because you’ve stubbed your toe.

You’re super brave with your hair. I never showed my head I was too scared. I did de-wig as soon as I had a full covering back but it was SO short. A man waiting for the lift at work said to my wow that is a haircut isn’t it. I never knew whether he was insulting or complimenting at as he was smiling 😂

I couldn't disguise the patches any more, even though there was loads on the floor when we took it off, so it may have held on longer. It turns out I'm quite vain really & I've put a proper-ish face of make up & lippy on the past couple of days, where normally I don't bother with much.

That makes sense about the radiation actually -when I was on the gynae ward for the first drain, one of the consultants there wanted to arrange a GI referral & another CT but then decided to hold off because of the radiation & further scans being needed down the line (and I didn't need a GI referral...just the movicol I had been taking and my own loo rather than one with people in and out of the room constantly...as I told him)

@lucysmam i find the being bald and proud in public gets easier every day - Ffs men do it all the time and it’s not remarkable. I actually feel quite good - I am surviving this shit and I look great with short hair (ok - really just fuzz atm but I’m getting there!)

@bringonyourwreckingball I was moaning to the men on the committee at my sports club about how cold my head was then realised I had more hair than almost all of them and mine was growing back. Ditto being overweight and unfit. This is a passing phase and things will get better.

Just had my CT scan to see whether my cancer has gone, and they wanted me to sign something to say that I wasn't pregnant, after they gave me a hysterectomy for endometrial cancer .
I told them politely it was a bit insensitive, it didn't really bother me, but it might to somebody who was upset about their fertility.

@SierraSapphire this happened to me when I had a scan , it made me smile. But thinking more deeply it is insensitive and could be deeply distressing for others. Surely even the quickest glance at my notes would tell them that pregnancy is a impossibility.
I hope your scan went well and the waiting period for results is not to stressful x

Still in hospital post immediate diep reconstruction surgery. Temperature at 37.7 and has been moving around in the 37.4 to 37.8 range since surgery 4 days ago. Anyone else had low grade post surgery fever that just goes on and on. Nothing much being done except regularly measuring it..Should be going home tomorrow.
@SierraSapphire yes pretty insensitive. They should be more careful with 'stsndard questions.

These days they ask biological men if they could be pregnant. My DH was asked pre op recently. World gone mad

I had a temp for a few days after but was fine. It’s good they are keeping an eye on you & hopefully you will get home tomorrow. How are you feeling after the op? It takes a while to feel you can stand upright! My tummy still feels a bit tight but I am used to it now. Hope your recovery goes well

Last message for @isaxx - It’s odd that there is a reply button but it doesn’t thread the replies so seems fairly redundant!

Yes, @RedRosesPinkLilies - I think I'm particularly sensitive to that sort of thing at the moment, as I'm watching the debates about whether women are entitled to same-sex care or not as someone who has a trauma response because of sexual assault, and being sensitive to some people's feelings is stated as being important. I'm mid-50s as well FFS 😂. Though the after-care leaflet from my hysterectomy said it may take up to six weeks for my period to come back, so I think they have an attention to detail issue at my hospital!

They also asked me what I like to be called, so I said I've been asked that a lot, but nobody ever called me my preferred name - the shortened version of my name (It sounds like I was a right cow, but the conversations were perfectly amicable!) - anyway, she did actually use my day-to-day name instead of my official name and I didn't like it much it turns out, it's quite nice to separate out the cancer-me from the normal-me!

Hope you start to feel more normal @isaxx - I had a fever after my hysterectomy and they wanted to give me paracetamol, but I felt a mild fever is what the body does to heal, so interesting they're not too bothered by yours.

@Onecattwocats Oh yes, standing upright seems a long way off. My skin is so tight I feel like it could all rip open when I eat or have a glass of water. How far post op are you? Looking forward to this tightness easing off.
Useful to hear that some of you have also had a post op temp and it not have been an infection. Hard to know what to make of all these tests. Things you never think to testing yourself for then suddenly it all gets plotted on some kind of chart. Temps, drain fluid, etc.

@SierraSapphire I think sensitivity to people has been replaced with political correctness gone mad. There’s little common sense anymore.
I’m fully supportive of people who have all sorts of issues, I did used to be a Dr - I’ve seen a lot. I’ve also got kids with Tourette’s - which socially is pretty unacceptable. Certainly my own family of origin seem to think so.

Sometimes the modern world just misses the very obvious human point, and does not think. In it’s rush to not be offensive, it is offensive.

I’m sorry this is difficult for you. Xx

@SierraSapphire and @Lisdeflores and @RedRosesPinkLilies

I'm sorry to hear they asked that when they really shouldn't have done. With this sort of thing, in trying not offend certain people, they can and do actually hurt others deeply.

I imagine it sometimes isn't what they really want to do, but comes from fear of doing it 'wrong' and being accused of something, so they go the route of the least risk to their career.

@SierraSapphire I'm really sorry to read what you wrote, and that's one reason why same-sex (not same-gender) care absolutely needs to be available.

@RedRosesPinkLilies says very succinctly what I mean but find hard to express.

@RedRosesPinkLilies so sorry to hear your family of origin is like that towards your kids. That's heartbreaking.

On a different topic: hair. Mine used to be very thick and very long but atm it's a few mm long, so extremely short (stopped chemo a few months ago). I went swimming today and it's so much easier with this style. I'm saving a lot of money not needing the hairdressers too, although I sometimes really miss my lovely hair that was one of my best features. Pros and cons. I don't know how to grow it back or if I should. I've been getting a lot of compliments about this super-short style suiting me, although are they just trying to make me feel good? who knows.

Thanks for your kind words @SummerCycling and @RedRosesPinkLilies - it means a lot. Actually there has mostly been an attempt to make sure I have female staff for anything that involves delving around in my vagina (!), with a couple of exceptions, but it's exhausting having to raise it over and over again.

Thank you @SummerCycling

@SierraSapphire you are a strong woman. Never forget that. You make the clear statement of what you want/ need and then drop it from your thoughts. It’s their problem to facilitate you.

We apologise too much for real needs.
Take advantage of the fact that this modern world has to accomodate them - just speak them and don’t think about them

@SierraSapphire

There shouldn't be exceptions for that; it should absolutely always be female staff. I'm so sorry you keep having to raise it constantly, that shouldn't even be necessary.

When I had radiotherapy (Royal Marsden) I noticed signs up outside a room I walked past each day that said 'Male staff only' which I hope meant male sex (not gender). I only had female staff for my radiotherapy, and only saw females in my unit, so female staff and patients. I got the impression they were doing it sex-based and certainly hope so. I was surprised in a good way.

@SierraSapphire I’m with you on the shortened name thing. I ask them to call me my usual name and just get my passport name every time. I’ve come to the conclusion that poor Passport can keep all the dehumanising horrible stuff which Passy has avoided. It’s a form of disassociation which seems to have helped me.

Awful guts today as I come down off round three. Bleargh!