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

Okay. Trying to be mildly organised for surgery. Who has any hints/tips including what to put in my bag. Fortunately I haven't been in hospital since I had DD3 in 2008.

Well apart from all these appointments, I mean a hospital stay......

Hand cream
Lip balm
Wet wipes
Hand sanitiser (at my hospital this is always at the end of the bed so difficult to get to if you're the actual patient!)
Tissues
Deodorant
Toothbrush, toothpaste, mouthwash (travel size ones if possible!)
Extra long phone charger
Squash/cordial to make the hospital water drinkable!
Ear plugs
Eye mask
Book/kindle/tablet/whatever entertainment you fancy
Headphones
Sweets/snacks
Nighties/pyjamas
Knickers
Any medication you're on (also handy to have a list of this to give to doctors)
Glasses if you wear them
Notebook and pen to write down questions/notes for HCPs - write down everything they say as you'll be woozy from the drugs and probably will forget however much you think you won't!

Noise cancelling headphones, lots of loose comfy clothes and some trashy books

How long will you be in for?

If more than one night, I'd get DH to bring clean clothes and pyjamas each day and take away the previous ones, to save space.

Which reminds me, take some carrier bags for laundry etc.

Have they said how long you will be in for keepcalm?
I had my lumpectomy and node clearance as a day patient... I left hospital at 7pm following a 2pm op. I think Leslie has got what you need to bring in covered there!

Noyhing too heavy, I took my Christmas cards to write (as hadn't had an opportunity to do them at that point) of course I wrote zero cards and they were also quite a weight I needlessly carried (not that you will be writing those in Jan!!!)

Keepcalm

My mastectomy and lymph node removal is being done as day case. I will only have to stay overnight if there are any issues. I’m quite surprised it’s day case but they do a lot of these ops so guess based on experience it’s ok. I think it will be a case of being woken after the op, given a cup of tea and sent on my way with my various drains...

Fab list ladies thank you!

@Mrstraveller I'll be in at least overnight but hopefully no longer...... I just want to get it right first time as we have 2 (possibly 3) funerals this week and DH will be dealing with all 3 DC himself.

I also suffer from terrible indecision so sorting stuff NOW makes more sense. I swear I didn't pack my bag to have DD2 until the morning I was going in to be induced

I forgot dressing gown and slippers/shoes. I had a pair of hospital slippers to begin with, but now I take a pair of slip on shoes because I don't feel like slippers offer enough protection from the bodily fluids that are occasionally found, especially in the loos

Also if your DH is likely to be rubbish at choosing suitable clothes, I'd prepare a few carrier bags of everything you would need for a day/night that he can just grab and bring in. Hopefully you'll be home after one night so it won't be needed, but saves any stress for you both if they decide to keep you longer.

noodles I did laugh at you taking your Christmas cards! that's the sort of thing I'd do too.

I don't mean to be alarmist about the loos. They're normally perfectly clean. It's only if you have the misfortune to go in immediately after someone who makes a mess and fails to clean it up or tell the staff mine was a bowel op so I was in with lots of other people with bowel issues.

Ugh Leslie sounds grim! I was in NY in Feb for work, and got in a subway lift that had a huge puddle of bloody piss all over the floor - I nearly heaved but the locals didn't bat an eye!

Mrs my mastectomy was as a day patient. I spent a good couple of hours in recovery and got sent home at 4.30 pm (10.30 am op)
I just took book/phone/slippers and clean knickers/toothbrush just in case... didn't bother with a nightie as I was in a hospital gown x

For my liver op I was in for 4 nights, but I had to be prepared for longer. I had separate bags that I wanted bringing in each day so that I didn’t have mountains of stuff waiting around, and could send home stuff I’d worn. It took a bit of organising but worked well for me.

Soooo basically what Leslie said but more words!

Hi, I'm a terrible lurker - on here since the summer when I began to realise that something 'wasn't quite right..' I've since been diagnosed with SCC1A of the vulva, so thought I'd de-lurk to offer toofar some support! I too had the awful wait for results, and then everything seemed to happen so quickly, gynae consultant, operation etc. Barely time to digest what was happening. Im happy to share any of my experience, if it will help. And Macmillan have a forum which can be useful, though we are definitely a 'niche' cancer right enough!! 😊

cairnzy welcome (belatedly). I’m sure toofar will appreciate that a lot, especially after I accused her of having colorectal cancer

Really glad to hear (in a weird way) that treatment got started really fast for you. How are you feeling now? Have you got more to go?

Waves to everyone. Farty puppy and I are in France and it is bloody freezing, but lovely to have a break and am with lovely bits of the family.

Yuck KBG! Sounds like the A&E loos. They had to put up a big sign telling people to put their wee collection cups in the bin rather than leaving them on the floor

Namechange have a lovely time in France :)

Welcome Cairnzy

Bonjour @Namechangeforthiscancershit and Bon vacances!

Cairnzy! Thank you so much for de-lurking for me. I’m trying to stop speculating until I get the biopsy results back. My consultant is lovely but has a very mournful manner - I’m hoping that’s how he is with everyone but it’s not helping!

Thank you for welcoming me, after outing myself as a lurker! 😊
It was actually 6 months to get diagnosed!! I went to gp with a persistent itch and a sore on my vulva. She directed me to a gum clinic.. 2 month wait...biopsy, then another 2 week wait and was diagnosed with vin2/3. Another month to get seen by a gynaecologist - where I had to decide there and then about surgery vs topical cream for 6 months. I opted for surgery, then bottled it! Another wait to see another gynaecologist, who was more direct and advised me that she was concerned about cancer. Agreed the surgery, then 2 week wait for a wide local excision for vin3. Then another 2 week wait for results...And by this time it's SCC 1A. Least possible cancer diagnosis, hence my reluctance to be out with my diagnosis. I am aware how lucky I am.
The thing with this cancer is that it's very treatable, but because it's rare and in the genital area, no one talks about it. Most of my women friends hadn't realised that it was possible to get fanny cancer!! So by the time women get diagnosed it's often quite late, and the main treatment is still surgery. The op was fine, but emotionally it's hard to take in, cos having surgery there can be tough psychologically. And of course I worried about sex, my clitoris and my relationship. Happy to report all are fine by the way 😁.
Happy to answer any questions etc toofar when you want. It really hasn't been as bad as I feared. I will need to have checks every 4 months for 5 years I think, and reoccurance is possible. And that will most likely be more surgery.
I don't look the same as other women anymore, but tbh I never really looked at it anyway! And I'm prepared to trade it for being cancer free. And if my partner is bothered by my less than symmetrical fanny he's not said anything to me (mind you if he did, then he'd be told to fuck right off!).

KeepCalm just popping in to recommend a small plastic storage box /tupperware type box for hospital stays to stash your lip balm, tissues,wipes etc and keep all together . If you have one of those overbed tables it's easier to slide the box over to you IYSWIM.

I was dx with oesphageal cancer 5years ago, about same time as our lovely Leslie started posting . I had pre and post op chemo ,was fortunate to find the chemo ,surgery and recovery perfectly manageable and am very well now .

I don't often post as I can't find the right words but I think of posters ,new and old ,frequently . And always happy to answer any questions from anyone who has suspected or confirmed oesphageal cancer .

Much love and strength to you all and your close ones ( be they supportive or not ) .

peridito that is such a brilliant idea and I'm absolutely kicking myself that I never thought of it for any of my many hospital stays in the past six years! I always get so frustrated with all the clutter on my table, but there's so many little bits and bobs one feels should be close at hand, especially when mobility is limited so can't just go and get them from a bag.

ah Lesley I just love a handy little storage box and know my way round every Pound and 98p shop within a 10 mile radius .

Am also a bit of a pillow collector and ,if allowed ,would take one or two into hospital with me .

Woman in bed opposite me in St.Thomas's had her own throw and pillows .

St.Thomas's also had hospital nightdresses which were so much nicer ( decent weight cotton ,flattering scoop neck and tho open at back v generous overlap flap ,no ties ) than the surgical gown things that were routinely dished out . Just needed to ask the domestic staff who came round with fresh linen every day .We were all in them by the end of my stay .

Actually that's a tip - befriend the cleaners and domestic staff if you have the energy .

Great shout @peridito thank you! And I always make friends with all the staff, I usually take cakes LOL

It's lovely when you go back for another stay (well, that bit not so lovely) and the cleaners/caterers etc. remember you and come for a chat :)

If I'm in for more than a night I take a pillowcase as they use ones that don't have a flap at the end so the pillow always slides out and they're all plasticky and sweaty. Last time I woke up with my head absolutely drenched in sweat. For some reason my conclusion was that I must've weed on my own head

We had some family to visit this afternoon, including a lively toddler who kept us all entertained with his range of animal noises

‘We had some family to visit this afternoon, including a lively toddler who kept us all entertained with his range of animal noises‘

With that, Leslie wins the entire internet for tactful posting!