Cancer Support Thread #79 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

@DanglySpider welcome to the thread and in the nicest possible way hoping you won't need to be here for long. I am hoping it is something simple that can be easily sorted. The waiting truly is the worst part.

Hello @DanglySpider your job sounds interesting, am I right you're a script writer? The waiting is the worst. I hope you have positive and reassuring news soon.

Hard couple of days here. The bum thrush is on its way out. Yay. But the piles are agony. I managed to lock my sharps box shut and my son decided to start persistently coughing this morning so I've had to send him with his dad (not married anymore) to get a covid test and trying not to panic. So we're all self isolating. And I can't go and get a new sharps box.

Typically as soon as I booked the test he stopped coughing.

@HC, re hair regrowth, I had my last chemo on the 10th March and it has been growing back over the last few weeks, my eyelashes are fully back which makes me look and feel a lot better, so I would say about 4/5 weeks. I will be back to square one in a couple of weeks as I had a gap due to my surgery but at least I know it returns quite quickly.

Hello everyone! I posted around Christmas that I’d been recalled after a mammogram... well a few months later here we are, lumpectomy & lymph node removal done, good margins & radiotherapy starts this week. Am nervous for that. And tamoxifen to start too.

Hi @PhannyPharts, yeah, screenwriter/filmmaker - haven't earned much money at it yet though, but it's still early days and difficult at the mo! I think I'm quite lucky that I've only had to wait since Thursday and the appointment's in the morning, so not long now, I guess - although I don't really know what's going to happen tomorrow! All I know is that I have to go to the Urology Investigation Suite, - and maybe have a cystoscopy? But I don't have to do anything special, apparently, like not eat or drink, or conversely drink a lot, so it might just be a consultation? There was a rapid cystoscopy leaflet with the letter, and it says normally you'd have an ultrasound first, but I guess I've had that already.

Sounds like you've all had a really shit time of it - I wish I had something better to say, but there really isn't when I have zero experience of any of this.

@PhannyPharts use a coffee jar or similar to replace sharps box until you can get it changed. Then just put the whole jar in the sharps.

@BadEyeBri fantastic idea thank you. Why didn't I think of that?!

Hello! It feels like ages since I have been here - been reading through all the posts but I am so behind I will just give a big wave to everyone and an unmumsnetty hug to those who have been having shit times. And hello to all the newbies!

I'm now three weeks post final chemo and the relief is immense. Done radiotherapy booking in, got my little tattoos, but no dates for starting yet.

Getting more energy with each day and I have also started the 16/8 fasting diet - not seen huge results yet, but I think I vaguely remember reading that fasting was good for cancer recovery generally? Anyway, at least I feel like I am doing something about my weight. Facebook showed me a pic of myself from four years ago the other day, and I just don't recognise myself any more. I am four stone heavier! Not sure how it happened.

Also, I wondered if anyone had experienced hair loss after chemo has finished? I was so pleased that I had about 5mm of hair back, but it's started falling out again in the past few days. Bit gutted about it. My head is also super sore - haven't had that feeling since round two of chemo.

@DanglySpider morning and welcome. You will be sat waiting now so wish you lots of luck. I remember the wait and they kept me waiting nearly an hour.

Hello to returnees, it's always good to hear your news.

@AlbertCampion goodness, don't know about re hair loss. I would be gutted too, am desperate for hair especially to cover this ever growing brown birth mark type thing that's appeared on my head. Think it's from the sun, looks like a bird had pooed on my head. 😭

Big wave 👋 to everyone and good luck for the week ahead.

HC x

Thanks @HumphreysCorner - your post popped up on my email and yes, am waiting now. Not quite sure whether to expect a consult or a cystoscope but I'm all scrubbed up and even shaved my escaping knicker hair (🤢). It'll be fine - it'll be kidney stones or bladder stones or something. 💪

But your post made me smile so thanks!

Morning all and welcome to the newbies. @DanglySpider let’s hope your stay is short here, with the nicest of intentions.
@Wellwhatalovelyday you are nearly through the tough stuff! Fantastic! After surgery the radiotherapy is quite bearable. Lots of quick visits so let’s hope your hospital has a good working scheme and you don’t have too long a journey. I found it very interesting.
@NogbagTheBag welcome. I am a veteran of BC treatment having been diagnosed in June 2020 and had the kitchen sink regime due to my age and an ER + HER + tumour with node spread. Fortunately it has completely responded so I am telling myself I am cured as it makes it easier to get on with life. I have 7 Herceptin injections left and a few years of bone infusions and hormone blockers.
My news is that yesterday my lovely DF86 died suddenly at home. It wasn’t totally unexpected as he was unwell but poor DM87 is alone and a bit confused. I jumped in the car and am over there now being useful.
Is it bad if me to be feeling a bit resentful that my 3 siblings are leaving it up to me? I only just got my life back on track and I want to be going to my fitness classes and catching up on fun stuff. Also I really miss my DH who is adorable and my rock in the corniest way possible. Ah well I know it needs to be this way. He was the kindest most loving DF and I am glad I was able to see him before they took him away. I’m sad but in a healthy good way IYKWIM. It is nice to be the useful one and not the patient everyone is worrying about for a change.

Regards to all.
Top

Good luck Danglyspider!
Hope everyone else has an easy week with treatments and side effects.
Has anyone any advice re scalp pain? I’m not supposed to loose my hair but it’s coming out in handfuls and now my scalp is painful.
I did request for my grey hairs to fall out but they seem to be stuck in super glue!

Hello all, another long gap for me!
Hello, welcome and much sympathy to @ChickandLamb (I don't think I've said hello before now?), @ChocolateandCheese, @NoBagTheBag and @Rugbygirl1973. Chocolate I'm so sorry you have a terminal diagnosis. Like @Acinonyx2 I am benefiting from sessions with a private counsellor, but if this isn't what you need at the moment, you know best. Other people here are using Maggie's centres, does your hospital have one? Also Macmillan, in my limited experience, are good at answering the phone and can help with all sorts of issues; they also have a community forum.
Much sympathy too to all those having bowel problems and pain in sensitive places.
@JeanLannes I borrowed a friend's wig to get the photo for my Freedom Pass, but I kind of wish I'd just appeared bald, because it just doesn't look like me, the style isn't something I'd go for ever!
@Lizdeflores nice to hear from you. My London choir isn't expecting to have proper rehearsals together before the autumn; I am joining their Zoom sessions, and also with another choir based in Cambridgeshire that one of my cousins is involved with; that's been a real lifesaver.
@TopOfTheCliff brilliant news for your DD!

I'm waiting for a phone call from my GP about a rash which I've had for 8 days now, horribly itchy spots in a few different areas. I have no idea what's caused it. Have been feeling apprehensive about starting oral chemo on 28th, think it's quite likely to bugger up travel plans for July/August which would just be the pits.

Also feeling overweight and very unfit - I have an initial appointment with a SafeFit person at the beginning of June which I hope will help me improve.

Love and good wishes to all x

@TopOfTheCliff awww no! I’m so sorry for your loss.

@TopOfTheCliff so sorry for you loss.

Just got out - nothing there! Zilch, no stones, no cancer - she said the sonography might have seen a protruding bowel and thought it was cancer - so I said 'oh. Guess I was full of shit, then'. They did laugh. So, with all the best will on the world, thank you for the handhold ladies, I shall get myself to fuck and leave you - but all the very best for whatever you have coming ahead - may it be as happy as is possible under the circumstances - much love x

@TopOfTheCliff I'm so sorry to hear your sad news. All the siblings should help. X

@DanglySpider woo hoo, what a relief 😅 x

@DanglySpider I'm glad you had positive news

@TopOfTheCliff I'm sorry for your loss. Sending you lots of love

@TopOfTheCliff I'm so sorry for your loss, I hope your siblings step up soon and don't leave you to shoulder the burden.

@DanglySpider what a relief for you!such good news!

Hi everyone 👋
(Nn change here but have been on before...)
top so sorry x
Hoping BOF is enjoying her trip!
mrspnut sorry you need more treatment. I hope it goes quickly for you and with minimal side effects x
Well...eye still rubbish. Anti vegf injection in January hasn't had much effect.
I'm back at Sheffield on Thursday for scans again so feeling anxious/stressed/fed up again :(
Also lots of peri menopausal aches and pains which are bothering me.
AND I've somehow caught a nasty headcold side eyes ds2
Hope everyone is coping ok and that treatments are going smoothly.
Love to all x

@TopOfTheCliff Sorry to hear about your DF - of course you should expect your siblings to step up. Do they see you as the competent one do you think?

@AlbertCampion I plan to resume 5-2 fasting soon. Hope your hair co-operates. I've got about 5mm of black fuzz - I look quite menacing.

@Bloodybridget if it's oral chemo hopefully that won't interfere with travel plans? I have a 4 day break booked end Aug and I'm anxious that my new IV chemo or blood test doesn't fall that week So hard to plan anything isn't it?

I was back at hospital this morning and surgeon is now clear that I have a proper surgical glue allergy - only the 4th he's ever seen. So there I was, half naked while 2 blokes (surgeons), one each side, picked the glue out with tweezers Now I'm padded up and although it's sore and itchy - it does feel like someone has pulled out a thorn.

Arm mobility is quite poor and there is the beginning of cording so referring to physio as I need to get my arm up for radiotherapy.

Pathology was back. Clear margins (so thankful that!). Residual tumour, which I already knew from the MRI, but also 7 positive nodes. I was expecting it really so not shocked and I already knew I would be going on a new chemo drug for 10 months. I did not ask about prognosis - I know perfectly well that there is only one study (the Katherine trial) for my situation and the new regime I will be on so any previous stats will be worse than those and unhelpful.

So another week of keeping still which is rather boring.

Someone locked their sharps bin? I was always doing that - dh used to just force it back open for me.

So sorry to hear about your DF, @TopOfTheCliff. Sounds v unfair that you have to cope with it all yourself, too. Hope your siblings step up and give you some support. x

@HumphreysCorner I know what you mean about heads - although I haven't got a brown mark - just lots of knobbly bits!

@Acinonyx2 Do you find 5/2 works? Should I be doing that as well as 16/8, do you think?

@AlbertCampion I would do one or the other rather than both. I've done 5:2 before and it definitely works. I found it easier, logistically, to focus on 2 days a week. In fact, most often it was more like 6:1 which has some effect just very slow. 5:2 was also very slow for me but that's fine as long as it works. I also went to 700 rather than 500 calories - I just found tolerating 500 really, really tough and the 700 version still worked - just slowly.

I'm eating A LOT at present and also hardly moving due to my inflamed boobs. These smaller boobs badly need a smaller tummy to match! My motivation is a mental image of me with cute short hair and a new sensible figure. Dh is doing all the cooking just now which is really hopeless for dieting.