Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@MrsPnut oh you poor thing, it sounds utterly horrific. Hardly in the same league as having cancer, but I bought myself some lovely new pants a few years ago and after a day in those had such galloping undercarriage burning and itching I seriously considered phoning 111 in the evening as I was in agony! You have all my sympathy and I really hope something works for you soon xxx

@AlbertCampion the body disfigurement has been one of the worst parts for me. Mine is thinness and baldness mainly. My neighbour saw me the other day in my baggiest trousers and a huge puffa jacket with the hood up to cover my scarf and said to me enviously, 'oh Fizzy, you have got so slim'. Slim! I try to not see myself in the mirror after my shower and had to sit on a pillow in the chemo unit as I have no fat on my bottom, it is that bad. @BadEyeBri has talked me through the injections and I've done my first one and it was absolutely fine, what a relief.

I'm so pleased your PICC line insertion went so well.

@Acinonyx2 oh my goodness, my scarf blowing off my head would be the last straw for me, how dreadful for you. You mentioned your eyes, mine feel a bit gritty now and again, like the start of conjunctivitis but I wonder if this is because I don't have any eyelashes. Tmi but the day after my chemo I do the most huge horse wees ever, I am the jetwash!

I'm pleased your consultation went well and he was so nice, totally unacceptable to have to wait 3 hours though .

@TopOfTheCliff go girl 👏🏻

@MrsPnut that sounds horrendous and utterly miserable. You poor thing. I'm afraid I have no advice but lots of sympathy and fervent wishes that it passes soon.

@Acinonyx2 and @FizzyOrange I also have weird tingly, sore eyes which I had put down to eyelash loss. I also have an incredibly drippy nose - because there is no hair up there any more, mucus just falls straight out. 😳 it is disgusting. Honestly, I have never felt less glamorous.

@Babamamananarama my periods have been a bit weird - either incredibly heavy or practically non-existent. My chemo nurse told me that is quite common. It sucks.

@TopOfTheCliff That interview was brilliant! I got a bit teary seeing one of us on national TV. You were so clear and composed! And also - I love your hair! Honestly, you looked fab. Brilliant stuff. Hope you are treating yourself tonight!

@AlbertCampion my nose drips constantly too and I have never felt less attractive either. DD and I are having a Skype call on Sunday with my DM and I am going to have to get DD to do my make up. We had a practice run the other night (I usually wear a reasonable amount but since my eyelashes have gone I haven't) and I looked like a drag queen.

Oh I'm watching the news and wondered if that was you, @TopOfTheCliff! Well done, you were terrific!

@TopOfTheCliff
Not convict hair at all. Well within the limits of normal - unless you had Lady Godiva locks before, in which case I can see it would be a bit of a shock. I'm envious of your blooming complexion compared to my prison pallor.

Thank you folks. That really made me cringe!
BUT I had a lovely message from a lady who has booked to see her GP about a breast lump after reading my article. That makes it all worth while! I hope she never needs this thread but we are here if she does.
Now to slide back into obscurity. I hope my BCN wasn’t watching me cycling or I will be in trouble

@TopOfTheCliff I've just seen you on iPlayer and you were amazing! I expect your interview will have encouraged a lot of ladies to get themselves checked.

@TopOfTheCliff fab stuff! I just watched - I recorded it while making dinner. For sure it will prompt some women to get themselves checked.

I have a really streaming nose - and eyes. A wash with mild soap (e.g. baby shampoo, like you do for blepharitis, which makes me think it must be that kind of problem rather than blocked tear ducts) tends to clear the stickiness for a bit.

@FizzyOrange I think I've commented before on the horse wees. Astonishing Chemo wees I call them. Amazed I'm not left a dry wrinkled mess like the wicked witch of the west.

Hospital didn’t phone with my biopsy results.

Appointment was at 3.45 I called them at 4.30 and the reception said that they were all running late. I asked if I will definitely be called today and she said they are supposed to close at 5pm but they do normally stay late to catch up although if I don’t hear anything then to phone first thing tomorrow. So annoyed we have waited all day, husband stayed home from work because he was worried and I haven’t taken my eyes off of my phone since 3.30. I’ve felt sick and nervous all day and I still don’t know anything x

@JustDavesWife we're all here with unMumsnetty hugs and handholds. I'm so sorry for the delay, that's really shitty

I've been following this thread (and prior ones) for a while and thought I would finally chip in. I'm in my early 40s and have been living with my ER+ breast tumor (I named him Chad) and spine bone mets for the last 18 months. Or rather longer than that, just it was finally diagnosed 18 months ago. No family history either side, so the positive BRCA1 test I had done privately was more than a bit of a shock. Guess that explains the early cancer. In a way it was almost a relief to find out it was genetic, even if it had been hidden for many generations, and not like I hadn't eaten enough blueberries or salmon or whatever.

Its a shit hand, and I fell on the wrong side of all the statistics, but the first line anti-hormonal cocktail (letrozole, palbo, denosumab, zoladex) has done a great job getting the bones to heal and has taken 2cm off Chad. Other than the menopause weight gain (conveniently timed with lockdown) you would never know anything was amiss.

So while its great to live a moderately normal life, the body image thing has definitely started bothering me more lately. I feel embarrassed changing in front of my partner, I don't like these new varicose veins, how cancer boob is now a quarter cup size smaller than the healthy side so my shirts pull, how dry my skin is no matter how many lotions are applied.

Today I went in for a gynae surgery consult to schedule ovary removal and a nurse said "excuse me sir" to me when she came in. She quickly corrected herself - my back WAS to the door and I had Covid hair that too much product and a windy day turned into something akin to a souffle - but cmon lady, really? Its sort of funny, but that, along with the subsequent super fun pelvic exam and questions about sexual activity (uh, none?), didn't help the ol' self esteem.

I have a couple weeks until the surgery if I can keep my neutrophil count up (and thanks for the earlier tips on filgrastim injections as I have a party pack of those in the fridge) so I am going to try to take a few kilos off as a goal.

Oh my goodness @JustDavesWife what a horrible wait you've had and still no news. Thinking of you x

@HerbalRefreshment Chad should meet my Larry and fight it out. A very big shock to discover the gene when it's not shown an appearance until now. Can't believe a nurse could get it wrong 😑 We are all feeling less enamoured with our bodies at the moment and what is this sexual activity you talk about? 🤣 Stay strong lovely.

@MrsPnut you are truly going through hell and I'm so hoping I can say hell and back very soon. X

HC x

Chemo no 8 tomorrow, fingers crossed the PICC works.🤞

@BadEyeBri and @HumphreysCorner thanks so much. I had been awake since 5am getting myself all worked up about the hospital phoning and then nothing! Hoping I can speak to someone in the morning.

Humphreys good luck with your chemo tomorrow and the PICC 🤞

Good luck tomorrow @HumphreysCorner sending you positive PICC vibes.
I have my PET/CT tomorrow as the final part of my staging before treatment starts. I'm really hoping there's nothing else anywhere. My nodes were clear on MRI but I do like a good panic.
I've named my tumour Gregory Campbell (GC) after a truly horrible NI politician. Hopefully we can blast GC, Larry, Chad and their insidious friends to kingdom come.

@JustDavesWife that is so disappointing you didn't get your results today. I hope they don't keep you waiting long tomorrow

@JustDavesWife Absolute bummer about them not calling you. Grrr.

The nurse called me just after 6, and it was the nurse I have known for years because our kids went to school together and she did the smear test that set all of this off.
She was lovely and really made me feel listened to, we’ve come to a plan and if no improvement over the weekend she will have a look next week. She also contacted the radiotherapy department at the hospital to get the number and name of the McMillan nurse attached to them. She wanted to see if they had any ideas before she called me.

@JustDavesWife I am seething on your behalf. The waiting stage of all this was by far the most stressful part for me, and I know how awful it is to be waiting for the phone to ring. It's really cruel to leave you in limbo. Hope you get a call tomorrow.

@HerbalRefreshment That sounds totally crap - you'd think a nurse dealing with cancer patients would take more care over that kind of thing. I also hate changing in front of DH - it's horrible to feel so vulnerable about your body. I am in awe of your determination to lose weight - I know I need to but don't seem to have the energy for it!

@JustDavesWife That is totally rubbish. I was actually also surprised you were getting these results on the phone rather than in person. Hoping for good news tomorrow though, since your scans were clear.

@BadEyeBri it's a necessary precaution - but hard not to get anxious. (I remember being pretty anxious getting my CT results.)

@HerbalRefreshment proper hello. Sex what is that - a kind of board game...

@HumphreysCorner Once more into the breach! If this is 8 - how many more do you have?

@MrsPnut I think we are all crossing our legs and wincing on your behalf - do hope your nice nurse can get you some relief.

Just logged on to say I watched you on TV @TopOfTheCliff, and you were great! Although strange to actually see you in person, as you always come across in your posts as being very similar to one of my colleagues, and yet you just don't look like her at all ...... totally threw me at first!

I am so sorry for your wait for results @JustDavesWife. I can't believe anyone would go home without ringing you with results - surely they'd know you'd be waiting all day. I hope you hear soon. As always, waiting is the worst.

And lots of sympathy to @MrsPnut. It makes me wince even thinking about it. You seem to have exhausted all the topical meds I can think of (have they tried steroids?), but there is some evidence for amitriptylline in vulval pain. I realise yours is more a soreness than a deeper pain, but could be worth discussing with your GP? It would certainly help at night (helps sleep) if soreness is a problem then. And peeing in the bath or into a full jug of water, might help the pain then, as the urine will be diluted before being in contact with skin. It's what we advise for conditions such as herpes which cause similar soreness.

A so sorry for all the PICC and canula and bloods problems. I am a complete hypocrite of a doctor, who has no problem sticking needles in others, but in me??? No way. Thank goodness for tablet chemo.

@HerbalRefreshment, that sounds very like my experience too. I can't type more, as my keyboard seems to be taking ages to catch up with me wtyping, but I wanted to wave hello for now!

Hi everyone
This seems like a lovely, supportive thread - please can I join?!

I'm late 30s, with two young children and I am HER2+. I was diagnosed 4 weeks ago, had a mastectomy (with immediate reconstruction) 3 weeks ago and in 2 weeks I start chemo.

I still feel like this isn't happening to me. Surgery was great and my recovery has been faultless so I don't feel unwell etc.

I'm dreading chemo so any advice would be very welcome - both what to do in the run up as well as any tips for during. (I'm having 4 rounds of EC (once every 2 weeks), followed by 12 rounds of paclitaxel and then herceptin.)

Sending lots of love and positive thoughts to everyone on here x

Thank you @Starmer I hope your colleague is willowy and fabulous like I intend to be when I have shed another stone. I was very self conscious modelling the Mrs Potato Head look.
@HerbalRefreshment welcome to the thread. I appreciate you have been lurking but it's nice you have joined the conversation. I am always being taken for a man, as I am tall and strong and at the moment have hair like my brothers. You have made me wonder if the lack of feeling feminine is why there has been very little intimacy in TopOfTheCliff Towers of late. Although as the BCN has banned me from using my right hand that limits activity too
@JustDavesWife we will all be rooting for you tomorrow. I hope you get a decent apology from the team and all the information you need. It's disgraceful that you were treated like that. Keep us posted.
Regards to all
Top

@JustDavesWife it is awful to keep you waiting like that. I have had to wait a couple of hours for a telephone appointment that was running late and that was bad enough! Really hoping they ring you first thing in the morning.

@HerbalRefreshment welcome to the nicest thread on MN with the loveliest ladies here. I have OC and had the worst pelvic exam last week. The consultant came at me with a huge speculum that looked as though it were about 3 inches across! She shoved it in and when I complained, told me 'well I have to examine you' , I did realise that. I am just not used to anything of that girth tmi.

@Miava welcome to you too. I still feel this isn't happening to me and I have been properly on the cancer pathway since last September when it was first a high possibility. For chemo, one of the worst things for me immediately was constipation. It is best to try and get ahead so I take Laxido sachets twice a day starting on day 1 of each cycle. It is still there a bit, as it is a delicate balance of not overdoing them but they do work. You can get your GP to prescribe them so you get them free or you can buy them by asking at the pharmacy. I warn you though, they are revolting so down them in one!

Welcome Miava. Bloody hell I'm not surprised that all feels like it's happening to someone else, what a huge amount to happen so fast. I'm a similar short distance away from diagnosis and finding it similarly hard to process. It really is like being thrown into a life that's not your own, isn't it? I've had one chemo cycle (which was pretty grim) but they have changed me to a different chemo treatment which requires a 5 day stay on a slow 4 day drip, so I don't know how I'll respond to it. My first one starts next Wednesday and I'm dreading it and worried about what it will bring.
Constipation/bowels grinding to a halt was a bit reaction to my first chemo and not much fun getting them going again so I'm likewise going to be hitting the movicol.

JustDaveswife, I am so furious for you about yesterday. Thinking of you today.