CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Leslie the eyebrow situation sounds interesting :) Hope your procedure went ok.
Winky and Charliebear I'm sure the waiting and testing is a worry for you both.
Flippy thank you, not crass at all. There's a Maggie's Wallace at the hospital and they have a financial advisor I think I'm going to try and make an appointment with them sooner rather than later and if not then get in touch with Macmillan. My SIL works in benefits and advice so she has also been really helpful.
Hope everyone else is OK at the moment.

leslie I saw someone at work I hadn't seen since before my cancer treatment, when I had shoulder length, brown, shiny, straightened hair.
He said "Is that your own hair?"
Like I would have selected a wig that was fluffy, a third of it 2 inches long, the rest chin length, with white hair at the front, almost black hair at the back and orange, yes, orange ends.

Evening all!

My procedure was fine and everything looks normal. I recovered quickly from the GA and I'm just a bit sore today :)

sunny actually it was good really as the fasting always interferes with my digestion so I might as well have that at the same time as chemo side effects!

Flippy I'm sorry the counselling wasn't any help. Though I understand what you mean. I have a counsellor, but I tend not to talk to her about cancer and stuff as it seemed like I was just talking for the sake of it. I hope today has been a little easier for you anyway

charlie sorry you have been unwell. I hope that you get some answers soon. Try not to panic about the FOBT, as there are various possible causes of a positive result. It is more useful for screening rather than for someone presenting with symptoms, which I imagine is why your GP chose to do the faecal calprotectin test instead. I was 21 at my bowel cancer diagnosis so I won't tell you you're too young, but at your age an inflammatory bowel condition is far more likely than bowel cancer. Though actually it sounds like your symptoms are mostly upper GI. Have you been tested for H pylori?

minty that sounds very unpleasant. I hope it wears off soon

I developed vertigo symptoms after having my portcath fitted. I was a bit alarmed, but then coincidentally this article was published shortly after. So I self-diagnosed myself with BPPV caused by lying on my back during the procedure. It mentioned some exercises so I looked them up online and did them. The symptoms wore off after a couple of days, though I don't know if the exercises made any difference!

fluffy interesting is definitely the word! I hope the financial advisor is helpful :)

pepper very stylish! I hope it starts to grow normally again soon

Hi all, I've been lurking since being discharged from hospital and making the most of feeling ok, getting out and about.
I wrote a long post but lost it. So to all going through treatment and waiting for test results. This place is a real source of comfort, advice and support, thanks to everyone sharing.

Chemo no. 2 tomorrow, which is less daunting now.
I lost most of my hair last week within 3 days and then just shaved the rest off as I was fed up of hair in my food, on clothes, pillow etc. My scalp is really sensitive and quite itchy. So although I have a great wig, with a bamboo skull cap I can't wear it for long as it's just really uncomfortable. Any tips or hints appreciated!

Halfbaked I just read your post and thought "that's going to be me soon" - big hugs to you and to all the lacies. Charlie we all know how difficult it is to be waiting and wondering, and we all have been offered reassurance by the wonderful posters here.

My update - having convinced myself that my lymph nodes were pure, one of them wasn't so chemo and radio here I come. Mastectomy probably towards end of next week with temporary reconstruction. Any tips on preparing for the operation (mentally, physically and practically) would be very gratefully received!

Halfbaked good luck with today's chemo

I use Yes To Carrots Scalp Relief shampoo on my scalp. It's very soothing. My hair has been growing back but I shaved it again the other day as my scalp was getting ridiculously flaky and itchy. It's much better now I can moisturise it :)

Argy good luck for your op

Leslie I forgot to respond to you - haven't done the photos yet as I still have a blue stain but I'm hoping to do it next week. Recovered from my panic about the armpit wound and it's calmed down now with pretty much no pain. I think my biggest challenge going through this is going to be frustration with my body's ability to heal to my mind's timetable. In my head I'm still 25... Hope you're recovering well. X

Chewing, I took your advice and went to the GP re dizziness and headaches - I was very relieved when she diagnosed catarrh behind my ear drum, so I have nasal spray to try and clear it. Minty, hope your dizziness is down to something similar.

Good to hear your procedure was ok Leslie. Talking for the sake of it is exactly how counselling felt. I'm feeling a lot better physically this week, and I'm glad it's February.

Argy, what sort of recon are you having? Have you had a list of things from the hospital of what to take with you, mine gave me one? Take anything with you that's going to make you feel more comfortable, whether that's lip balm and handcream or headphones and iPad. I also took dried apricots, squash, face wipes, moisturiser, button front pjs and shirts, cosy socks and comfy pull on jersey trousers. I'm taking sleeping tablets at the moment anyway, but I would have asked for them if not. I also got a Jen's Friends mastectomy pillow which was really helpful, they are free but they ask for a donation for P&P. Good luck!

Argy, good luck! There are tips at the start of this thread. Below are the ones I sent leslie

Halfbaked, hope chemo #2 goes ok

leslie, glad to know you've recovered from the GA

I got my breast cancer gene test results back. I have no actionable mutations! Which is a relief to find out but also adds to the mystery of how it happened in the first place

Great to hear from everyone who had good test results (or happily no results), and 🍫 and🍷for those still waiting--

--

Tips for surgery

• Follow surgeon's activity restrictions post op
• Be prepared to get a bit emotional immediately after surgery. There will/may be pain, swelling, numbness, large incisions, drains and you might not have a nipple. You may come out wishing you hadn't had the operation, though this phase may be short-lived. Marshal your DP/friends/whatever form of emotional support you need to get you through
• Don't take the pain silently, discuss anaesthesia options before surgery, and after surgery you can ask your physician for appropriate medication
• Keep a glass of water (straw helps is you can't sit up properly in first few days) or bottled water (I liked the sports type squeezy kind, but then again I had an unaffected arm) handy at bedside especially at night for when you get thirsty. I felt very dehydrated after surgery
• Pre op, check with your surgeon or BCN on what to buy beforehand: support bra (what size; any recommended type or brand), bra extender, knickers, etc. Don't go overboard buying loads as you're likely to move out of oversize bras and the extender relatively quickly
• Post op advice can vary: check with your surgeon or BCN on support bra, binder, compression garments, when you can shower/have a bath/swim, etc.
• If you want it, request a copy of your post-surgical pathology report
• Explore scar reducing options with your GP/surgeon -- some items may be available on prescription: Kelo Cote, silicone sheets, post-surgery massage
• Work with physiotherapist on regaining range of motion and strength; always check with surgeon/physio on what exercises are appropriate and when. picked up the link from www.guysandstthomas.nhs.uk/resources/patient-information/therapies/physiotherapy/Physiotherapy-advice-after-breast-reconstruction-surgery-using-a-DIEP-or-TRAM-flap.pdf" target="_blank">example online brochure some patients hadn't received advice about post op exercises when sent home, or hadn't been referred to a physiotherapist
• Ask about lymphoedema risk after surgery and if there are any precautions you should know about

and im home, minus a left kidney - im very pleased to be home, surgical wards are so busy!

he managed to get it out as a whole, so now its off to the path lab - apart from an 'interesting' reaction to the morphine it was straight forward, im on the sofa for the next few weeks

i did come away with a pair of clippers - so the district nurse can take the staples out...all very surreal!

baubles, that's great! Hoping for the best for the kidney patho results, hope you get some rest

Arrghhh I typed out a long post earlier and I lost it so I'll probably forget someone now!

baubles glad you are home and hope you have a good recovery and biopsy news. When I had morphine in recovery once, instantly it felt like someone had sat on my chest and I couldn't breathe. Now I just have to make sure I avoid it.

leslie thanks for the link and thanks too to flippy and mysilly you're helping confirm that it's most likely nothing sinister and just a kind of head cold. I made the mistake earlier in the week of googling herceptin and vertigo (I know, I deserve a big slap!) and the first thing I found was a thread where posters were telling the op she needed a ct scan as she might have brain mets .

java good to know you don't have any dodgy genes, at least you know you're in good company now in that I think most of us are in the dark as to why we're here.

argy you might just have to go ahead with the photoshoot next week - my blue stain didn't fade for 6 months after my op!

halfbaked hope your chemo went well today. At least this time round you've got some idea of what to expect. Hope the scalp itching calms down soon, I remember how frustrating it was.

I'm sure I've missed someone out so a big wave to you all, hope you good weekends

Argy maybe they could do the photos in black and white to hide it

Flippy I'm glad you're feeling better. How is your DS getting on with it all?

looking excellent news. I hope you have your feet up fingers crossed for your results - do you know when you'll find out?

minty tut tut, you know the rules about Googling! I hope it wears off soon

Just popping in to wish the lovely Lacies positive and peaceful vibes for the weekend and indeed the weeks and months ahead. to you all and special good wishes to Leslie and chewing

Love from a lurker x

Flipping I'm having temporary recon with mesh & expander for now. Java thank you so much for that list! Leslie brilliant idea about doing black & white photos - I will definitely ask for some. Minty that's great to hear as I was feeling like a bit of a freak! I've also thought about putting some concealer on so adding that to my shopping list...

Good night all. xxx

Evening all.
flippy glad that your doctor has reassured you and it's only catarrh
looking glad the surgery went well
1234 thank you. Keep lurking
argy hope op goes well
Halfbaked good luck with the chemo
Leslie glad you're feeling better
Waves and to anyone I've forgotten to mention
I have been tired but had no significant side effects so far which is good. I've sorted most of my paperwork out now and hope to finish the rest next week.
Saw some old work colleagues for a nice lunch and was very touched to be given the (large) proceeds from a collection for me
I have also been contacted by several relatives that I haven't seen for over 20 years who have heard about my condition and are 'devastated' . My family does love a bit of drama!
Hope you all have a good weekend

Argy definitely go black and white, I still have a blue stain 11 months post op. They were admiring it at the hospital. Smurf Tit as we like to call it

pepper . Flippy so sorry for calling you Flipping! Freudian slip I think. chewing great to hear from you .

Hi all chemo 2 was fine, I am having a very lazy day, which is blissful as I probably tried to fit far too much into my 'good week'!
I've been given a pack of injection to take next week, little bit daunted as I've never injected myself before!
Sometimes I feel like I've entered some weird alternative reality.

chewing glad to hear the side effects are not having a big impact.
Argy we will have to swop notes! I'll be in your position in a few months. Hope the op goes well and the photos -there's always photoshop to remove the blue!
baubles hope the post op recovery goes well and the path results are good.
java another excellent hints and tips list, thanks I'll save that for later.
As a matter of interest how long did your genetic results take to come through?
My first genetic appt isn't until April and I'll be almost finished with chemo, the results may have some bearing on the surgery I'm offered.
flippy glad you are feeling better and that the dizziness was just catarrh.
leslie glad to hear your procedure went well.
charlie hand holding, the waiting is the worst bit

chewing, so nice of your old work colleagues to have a collection for you!

Halfbaked, great to hear about chemo #2.

I was advised it would take 12 weeks to get the genetic test results, but I was told mine in 8 weeks. They already had the results a week or so before -- just needed to contact me and set a date to meet at the hospital. Blood and tumour samples were used. A formal report will be posted to me next week.

Hope your scalp calms down soon!

Hello everyone. I'm ashamed to be whinging on yet another thread. I just want to admit I'm a little bit scared. Been ill for ages with progressive symptoms - as in getting worse and more of them. Randomly reading a magazine I discover I had most of the symptoms for NET. I know have most of them. This week very poorly (I have a thread ) but the previously booked appointment with a general surgeon was a waste of time as he wouldn't listen and 111 have just said see your GP on Monday. I've never been this ill. I walk the dog then spend all day laid on the sofa. Also awaiting a brain CT appt as I keep losing the ability to speak. Just want a hug.

Hello, lovely Lacies, just thought I would park myself here. Your stories are just what I need to read at this point.

Found a lump in my right breast on 18 December, biopsy taken on 22 Dec., breast cancer stage 2, ER+/HER- confirmed on 4 January. Biopsy of lymp nodes was clear. Did blood tests pre-surgery, discovered "higher" liver readings (forgot to tell them that I had been taking aspirin for about a week due to cold/sinusitis), sent me for a liver ultrasound where everything was fine, to say I was crapping myself is an understatement - I was royally shitting my pants over & over again.

24 hours before my surgery on Friday (3 Feb.) I got the results from genetic testing - I carry the bastardly BRCA2 gene. So, immediately I started having an impending sense of doom & that everything was doomed. Had lumpectomy & sentinel node biopsy as planned on 3rd. Awaiting results on 16 Feb. Again, crapping myself over and over again.

Whatever happens bilateral mastectomy (and a bit later, oophorectomy) are on the cards. Curse you, oestrogen and genes!

The original plan was to do radiotherapy for 4 weeks & hormone tablets for years. On Friday (after the operation which is when the consultant found out that I am BRCA2 positive) the consultant was muttering about having to do bilateral mastectomy within a month!!! Am phoning the clinic tomorrow to get a clarification and a bit of peace of mind (hopefully he didn't say it because they discovered something more horrible during lumpectomy - he did say the two things - bilateral m. & lumpectomy were 2 parallel things). He told me that everything was fine post-surgery, didn't mention any other possible/unexpected finds. Wound healing well, bla, bla.

Oh, yes, and I am 44 with a DS who is almost 5.

Bastard genes, bastard cancer!

I mean, of course I'll do anything do minimise the bastard ever coming back, just didn't think it could happen within a month!

I'm sorry balkanscot. No wonder you're scared.