Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

noodles that's very good news :) I've got a stoma too so I can understand that.

Does anyone have a permanent line for chemo? I’m thinking about asking for one as my veins don’t behave and I’m not great with needles, is it painful to get put in and a faff to clean?

Leslie I've already ordered a couple of headscarves, it's quite diifficult to find nice ones. I've been looking for long ones, ideally with elastic. Like this but nicer basically

purple I had a picc line which can stay in a few months but you can get a chest one (portacath?) which I think Leslie has? My picc was ok and necessary as I had IV nutrition but I ended up with an infection and blood clot from it. Fine getting put in but has to be done in operating theatre.

Addle happy birthday to your son! They haven't actually given me anything else for dire rear (apart from the IV fluids). I'm on immodium and lomotil already though so not sure what they can throw at me. Hopefully they will get test results back tomorrow and then might have some ideas - they don't want to prescribe other stuff until then in case it is an infection.

Hi, I posted earlier in "Women's Health" because I couldn't find this thread. Here's the link....

www.mumsnet.com/Talk/womens_health/3285222-Could-This-Be-Pagets-Disease

Any advice would be greatly appreciated.

Hi David - sorry to hear all you’ve been through and can totally understand your anxiety. I would definitely get this seen to - it could of course be something harmless but if you don’t have it looked at you won’t know whether to try some treatment for it. With your history I’m sure you’d be seen quickly and get some answers - good luck (and as we like these on this thread!)

David radiotherapy can burn your skin and give you all sorts of rashes. I was panicking I had pagents disease too but it turned out to be eczema from being so run down. Radiotherapy continues working for weeks after the last treatment so chances are it's nothing to worry about.

But please go and see your doctor again just to put your mind at rest

Thank you addlebrained & purpleunicorns for taking the time to read through my post and responding so kindly.
I was pretty badly "burnt" by the rads and was left with a black nipple for 10 months but since that resolved itself my breast has been fairly "normal" looking, aside from the fact that that one is a lot bigger and harder than the unaffected breast (onco still puts this down to the rads) and the yellow, crusty nipple.
What's worrying me is that this lumpiness and discolouration of the aerola is very recent. That along with the itchy, burning sensation of the whole breast and the fact that this nipple is flat makes me think Paget's but my scan was clear and the onco sonographer said not to worry about the discharge because it's not red.
I don't live in the UK and don't speak the language here and the doctors only speak a little English. Sometimes I do wonder if things get lost in translation.
I'm not due another check-up until September and my (native speaking) husband and I are due to move house in the next 2 weeks so I think as soon as he can get a day off of work after that we'll go back to the hospital about this latest issue.
Thank you very much again

Good morning

purple I have a portacath, though it's in my arm (I'd recommend a chest one as the nurses find them less fiddly!). It's brilliant. I had it put in under local anaesthetic. It doesn't need flushing and dressing changes like a PICC line, if it's being used regularly. It just sits there under my skin until it is needed. I can swim, shower etc. as normal. I'd highly recommend it :) my veins are awful and it's really difficult when I go to A&E or scans (no one trained to use ports) so I'm glad I don't have to go through that before every chemo session.

I didn't get along with scarves but found a few nice ish hats from Anna Bandana.

David that seems a long time to wait. Any chance you could get seen sooner?! The language barrier must be such a struggle I hope it turns out to be "just" ongoing radiotherapy damage

Tayto fingers crossed for your test results :)

WhatWouldLeslieKnopeDo I'd much rather not wait but I really want my husband to come with me so that he can translate for me. Also he'll push them to take me seriously whereas when I go alone I sometimes feel like they're just going through the motions with me.
Hopefully it'll be 3 weeks maximum before we can go together. That will give me time to monitor any new changes in my breast.

For those looking for headwear, I got a few turbans like these when I was having chemo. They're really comfortable and flatter most face shapes (I had a football head and still looked relatively ok )
m.ebay.co.uk/itm/NEW-LADIES-PAISLEY-STRETCHY-INDIAN-TURBAN-PLEATED-HEAD-WRAP-CHEMO-CLOCHE/132532454735?hash=item1edb8cc54f:m:m47ff_dPtHCvW8Wvbg2K98g&_trkparms=gclientid%3DuQmzk1wGfVv2La6PDO9JvFIRjbFQdYlwzwcPgRe0Xd8gHGIQAb1ripFgTFDikKsq&_trksid=p2489528.m4335.l8656

david I also thought it could be damage from radiation following the oncologist saying the scan is clear, but def get it checked as it wil put your mind at rest.

I had nothing through the post today following my text reminder yesterday for the appointment next Thursday. I rang the breast clinic and apparently the fact I had biopsies generates an appointment. The consultant works from 2 hospitals & this one is closer to me, so hence why it is booked there. I will not find out anything until then as it is a results appointment. All my over thinking of this appointment has done is make me have a rubbish sleep last night trying to analyse if perhaps it was made ahead of the consultants meeting due to it being benign, or if they had seen the biopsy results quicker than expected & were getting me in quickly to start treatments! Only 6 days to wait now.... Going to make myself be as busy as possible with the kids over the weekend so it flies by.

Waves & hello to everyone

I haven't read the whole thread, but wonder if I could post for some support?

I'm 44 and have had intermenstrual bleeding for a few months plus some bloating. I saw my GP, who carried out a smear and has made an urgent referral for an ultrasound as part of the suspected endometrial pathway. I am frightened and distressed. The ultrasound has been arranged for a week's time, but I have opted to pay for a private scan this Sunday instead.

Basically I have to get my head around this and start coping with the possibility of a cancer diagnosis. My mind is just reeling with fears about how I'll cope and worrying about DH and DD.

Any tips on how to cope with the waiting? And will my GP be angry or disapproving that I've opted for a private scan? Thank you.

Hello Bookridden. This week I had a scan for similar reasons. My symptoms have been years and this is the second scan I have had to check for baddies.

Please try not to panic. I know it's hard not too. If there is something wrong it's already wrong and you can't change that but are on the right course for getting help and treatment.

The GP may or may not be understanding about your having an earlier scan but that's not for you to worry about. You may need to be prepared to not get results straightaway though and I would consider having both appointments.

Hello Year. Thank you for your kind response. I'm sorry you've had to go through this before. I bet it doesn't ever get easier. I am already aware that the most likely outcome will be a biopsy. After all, something is causing the bleeding, and even if it's just a fibroid, I can see that an ultrasound wouldn't necessarily distinguish between a benign mass and cancer.

When do you hear Year? Do you mind me asking what happened at your ultrasound in terms of them sharing what they can see?

Bookridden - I have sent you a PM

Thank you Tumble; I have replied.

Hi Book

Just typed out a reply and it went wrong.

I was a little confused by the appointment as it was so different from one I had had before for the same reason. The sonographer asked me several times if I had had children. She asked if I had had fibroids and I said no but I'd had polyps. She said they are the same thing really. I was then allowed to wee and then had the internal scan. She asked again about children and asked if she had said anything to me about fibroids. I thought she meant had she told me she'd seen them so I said no so now I'm concerned I said the wrong thing. She had a lot of trouble seeing my ovaries and the scan went on a long time. She said nothing about results other than to tell me to make a GP appointment in 7-10 days. I'm not sure if that's working days though so I'll make an appointment a week on Monday. I've been told my the surgery receptionist that they'll ring me when they come in if the GP wants to see me anyway but I'm not happy to chance that. Plus if there is nothing wrong I still need to know why I've got the symptoms I have.

Thanks Year. That seems an awfully long wait. I've got my scan on the Friday and I've booked a gp appt for the Monday. I've been told they email the results through, but even if they haven't arrived, I can talk to the GP about how anxious I am.

Hi Book - I wouldn’t have thought the GP would care if it’s private or NHS so long as you cancel the NHS one so someone else can use that slot. Sorry to hear you’ve been having all these symptoms - did the GP say your cervix looked ok when they did the smear? and best of luck for the result - I’ve had a private ultrasound before and the radiologist did it (rather than a sonographer) and told me what they could see as they did it so there wasn’t any waiting but I don’t know if that’s universal...

How did today go tayto? I hope all is well

for everyone!

Good morning

I hope everyone has a reasonable weekend

Thinking of all those waiting for results or to crack on with treatment!

Sorry, chemo brain, meant to say welcome to Bookridden but sorry that you're here

Thanks guys. I see we've got a bit of a heatwave coming up. Hmm. More of a winter girl personally, but I know some people will enjoy.

I like the sun but my body doesn't just looked at the forecast for next week and now checking out fans in Argos!

Morning all, think of me with my post op compression socks on for another week during a heatwave I mean it's not as if I suffered from hot flushes already.......
So had my ovaries and tubes out on Monday, keyhole are a bit sore but nothing dramatic. It's the anaesthetic that gets me! Still feel like a zombie, yesterday I didn't actually wake up till 1pm.
Any advice for post op constipation? Sorry, I know most suffer the other way, the pharmacist would only give me lactulose with all the other meds I'm on. Should find out sometime next week if there were any stray cancer cells in the bits they took out.
I hope everyone is as well as they can be

Good to hear from you pepper plenty of fresh orange juice, prunes and loads of water should help. My mother swears by fig rolls but I can't stand the things

Tayto did you get your test results?