Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

Hi @Rosiesmummy17 - I’m quite new here too. I had vulval and cervical biopsies on 28 December and unfortunately I’ve been diagnosed with a malignant vulval melanoma, and I’m currently having scans to see if it’s spread.

Waiting for the biopsy was really the worst part, although I do still get terrified about what the scans will show. But it’s so much easier admitting the terrors on here than in real life, where I’m trying to protect everyone else! I hope you have a better outcome than me

Practical question for the more experienced on here - I’m having a CT PET scan in the morning. I know I get injected with something and X rayed, but I don’t really know what to expect. Any pointers?

toofarout I had a CT-PET scan ,5 yrs ago tho .

I had to lie/keep still for about an hour after the injection ,so take something to read . I always opt for catalogues when I can't concentrate on a book or paper .

The scan itself was fine .

The dept was in the bowels of the hospital and I think this is not uncommon .I was freezing and wished I'd taken a blanket /pashmina .

As usual I forgot to ask when the results would be available and who they would go to .

Hope it goes quickly .

Oh yes the room they do our PETs in is FREEZING! I have one next week so I will find my warmest socks!

It’s boring more than anything. Other than that, nothing to worry about.

Thanks perdito. I’d just googled it and after my MRI on Friday thought “oh no, not another f*ng tunnel”, but perhaps it’s not as bad! X

As far as I remember it's not a tunnel .Maybe a doughnut type thing !
Not like an MRI anyway .

Toofar it's not a tunnel. The scan itself is the same as a CT scan, if you've had one of those. It's a big doughnut, like peridito says. You will be told to avoid close contact with pregnant women and children for a while afterwards (I think it's only about 8 hours, but they'll tell you). You also get a special certificate to say you've had the injection just in case you get caught by the police being radioactive!

Presumably you've been given instructions on when to start fasting and also that you need to avoid any major exertion.

Madame lovely of you to de-lurk to help :) I'm glad that it hadn't developed into cancer and that your treatment was successful. Good luck with your future check-ups.

Fuzzy from Sainsbury's. Keep resting when your body needs it. I'm sure you'll get back to normal soon

purple yes, they can cause fatigue, but I'm not particularly tired. Sorry to hear about the bleeding. That must've given you a fright! I hope they can get on top of it quickly and get you home are you still on the syringe driver or have they switched you to the patches? Good luck with the oncologist tomorrow.

I hope everyone is having a relaxing Sunday. We've been taking down Christmas decorations. I even cut up some of the Christmas cards to make tags for my parents to use next year without freaking out. I also now have a heated shoulder pad to add to my collection of electric heat pads

Ooh I didn't know heated shoulder pads existed
I have the patches but it fell off the night I went home and I have a syringe driver for antisickness but that fell off too. The patches don't seem to stick to my skin despite me covering it in tape
I had my staples taken out today from my bowel resection and luckily it doesn't hurt anymore so I'm hoping I can make do without the patches

I was diagnosed with LS on the first of November but in retrospect have had mild symptoms since childhood. My daughter is 18 months old and it's only since having her that they have gotten really really bad.
I'm 28 :)
They haven't specified a date for biopsy yet but I did get a letter saying I'll be seeing the gynaecologist on 17th January and it has been brought forward from March following progression of the symptoms and because the lesion in unchanged despite treatment (steroid cream) and it will be the gynae who does the biopsy so I assume then. Does that even make sense? Sorry

Hope you're all OK x
Leslie I am a DN :) xx

And since we're sharing pets...

It's like a little heated cape purple I'm just charging the battery up then I can try it out. I sometimes get an aching from my cancery lymph node so I'm hoping it'll help.

Mine kept peeling off too. Did you have it on your arm or your chest? I find they stick a bit better on my chest as then my bra covers them. But they still kept peeling off before the 72 hours so my nurse got me some transparent dressings to put over them. I found that tape just made it worse. So if you do need to continue with them, ask for some dressings to put over them.

Good luck for 17th Rosiesmummy, and you're a

Awww Rosie’s look at that little face! Waaay too cute

Heated shoulder pads sounds like something from Dynasty!

Sorry about your pillow namechange ! Wondering id I should be commissioning one of the knitters here to make you a new one.

Cold hasn’t worsened, thank goodness, beyond feeling a bit scratchy/sneezy and having far too much snot on the system.

I’m about to make a hot drink and a hot water bottle, then turn in.

Had quite a good weekend sleep wise and managed two nights where I didn’t get up in the middle of the night. Back to insomnia central tonight. It’s my last week before my surgery so I guess that’s on my mind. First Herceptin injection this week too. It feels a bit weird that this is my last week with my left breast! Not massively upsetting or anything just a bit of a weird feeling that next week it will be gone.

Sleep, lacies that is what I am eternally chasing at the moment!
Anyway whine over. My DCs have just gone back to school.
I've scoffed 2 pain au chocolate and have my feet up with Alibi!
MRI at 12.50 so I'm going to rest till then!
BC lacies have any of you used Haven? I've just booked into the Leeds centre for this Friday. I didn't go before chemo as it was too much of a faff to get in there.
Waves all round. Hope everyone got as good a nights rest as possible and side effects are minimum.
@WhatWouldLeslieKnopeDo how's your gravity blanket? I'm curious to know as it's my birthday in March and I may ask for one if they come with your seal of approval! Ps the Simba mattress you suggested we got a couple of months ago and love it!

Morning all, hope you had good weekends.
Just an update on the fb group - I think I'm up to date and have added everyone who contacted me. If you want to join pls dm me your full name and I'll add you on.

Rosie nothing is established here. We just talk a lot! Hopefully it's just a scare and you will leave us soon. If not, we will be here. Totally get the young child thing. My daughter is 5 and I'm permanently in a panic!

Newbie here. Was referred to breast clinic under the two week rule at the beginning of December. Initial visit seemed very promising with them thinking it was just an abscess. They took a fluid aspiration and prescribed me antibiotics with a return visit for NYE. I haven't been breastfeeding or had any abscess symptoms so they wanted to see me again just in case.

Returned on NYE to be told that they are ruling out an abscess and wanted
to do a biopsy. Due to bank holidays, the results from this won't be back till the 10th Jan. The waiting is really, really getting to me now. I just want to know what's going on. How do you cope with the waiting and the lack of control?

Morning lacies. Hope everyone had as comfortable a weekend as possible.

TQ, I'm so jealous of your Hamilton tickets! Maybe later this year for me.

Leslie, sending you a special gentle hug and virtual cheese products of your choice.

Purple, I'm sorry you're having a crappy time in and out of hospital, I really hope that the pain team can do their thing and help.

Can I suggest for anyone having breast surgery, look up Jen's Friends - they provide mastectomy pillows, mine was a godsend. You only need to cover P&P, although donations are welcomed too. I can't sew, so I asked some friends who can to whizz up some cushions for them after I was better.

I loved the chat earlier in the thread about the NE - where I'm from, and I was there at Christmas, my mum is in Co Durham. Fenwick's windows, Beamish, Chinese food on Stowell St and the Christmas Show at Northern Stage all ticked off the list :)

I'm having a bit of a freak out lacies and hope it's ok to post, especially as there are others here who are going through far worse. I've had a cough and a lot of rib/back pain since October. I mentioned it at my annual check up, and agreed with consultant that we'd leave it a couple of weeks and I'd get in touch if it didn't improve. It didn't and has got worse, but I didn't want scans and more appts and possible bad news over Christmas - like 2 years ago when I had original dx. Anyway, I finally called BCN on Friday afternoon and I'm waiting to hear what's next. I've already got a dermatology appointment at the end of the month as I've got a dodgy mole that needs to be checked. I dunno, I feel like I had two totally shitty years and then last year was actually pretty great, that I'm due more rubbish again - sounds stupid when I write it down. I just wanted to get that off my chest with people who understand.

Flippyneck I totally understand. I buried my head in the sand a whole lot more than you over Christmas and now reality is hitting me like a bus. I hope your BCN gets back to you soon. It feels relentless sometimes doesn’t it?

madvixen helloooo. Sorry you’re here, and hoping you’ll be cleared and sent on your way very soon. I wish I could tell you a way to make the waiting and worrying easier. My limited advice is...

• accept that this next couple of weeks is going to be A Shit Time and expect as little as possible from yourself. Eat whatever you feel like, drink wine, sleep as much as possible, don’t beat yourself up if you’re a bit snappy or tearful or useless (oh hang on that’s just me! )
• step away from Dr Google. He is not a good man.
• stick around here chatting nonsense. If you’re awake at 3 am and want to post then do- most likely someone else will be too
• be very selective who you tell IRL as some people will be amazing and some will be unhelpful to say the least
• retail therapy

Madvixen keep as busy as possible to try and take your mind off it. Go for a coffee with friends, or treat yourself and get your hair/nails done. The time will drag but as soon as you know what's happening you'll feel so much better

Flippy that doesn't sound stupid at all, that's a lot to deal with but hopefully your cough and mole aren't anything to worry about

How are you doing Purple ? Have they resolved the blood in pee? Have you seen the onc yet? Thinking of you...
Flippy of course you're worried. Keeping everything crossed for you.
Leslie how are the energy levels today?

Just done a food shop for DD3 going back to uni tomorrow. I mistakenly shoplifted a bottle of water . I got the dry heaves and was desperate for a drink, which I then shoved in my pocket. Sorry Tesco - I'll pay tomorrow!

ranout I'm glad you like your mattress! I have been sleeping better, but there are so many factors involved I can't really say whether the blanket has helped. It's very cosy though, and I do find the weight comforting.

Oops TQ when you go back tomorrow they might have your mugshot on the wall! plenty of energy, just nothing to use it on as I'm too weak to walk much.

Oh FlippyNeck I'm so sorry you have this to worry about. I hope your BCN gets back to you quickly and of course it's OK to post here. Sending you a massive squishy hug.

madvixen sorry you're here, but make yourself comfortable while you wait hopefully you won't need to stay here long. Distraction helps a bit.

Mrstraveller it's a busy week for you then. Sorry to hear you're not sleeping well.

iVampire I hope you're feeling better today

My hospice nurse visited and she has ordered me an air mattress to relieve pressure from me sleeping sitting up.

Lol TQ I'm sure Tesco can afford it for now!!

Flippy I really hope you are worrying about nothing more than a strained muscle or something, but I think that's the most annoying thing isn't it - the loss of ignorance about your own health and worrying all the time about things you might have been able to explain away before. Will keep fingers firmly crossed for you

New thread here!

New here, but referred tonight to emergency breast cancer screening. I am awaiting appointment. I have an enlarged painful lymph node. Feel fine otherwise.

Hi @littlebillie, sorry you find yourself here, but welcome!

There is a new thread - the link is in the post above yours (sorry I can’t do links!) so do come and join us over there x