Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Ah well then I will take my trusty cabin bag then . I have done a rough pack and it weighs 5.2 kg so plenty of weight left . Altho I weighed phones ,kindle and iPad last hols and they weigh 2kg !
I will ring patient transport this morning to sort details of travel .

And as you say I am skilled in packing
Dressing gown
2prs pj
Pashmina
Slippers
4 post surgery bras
2 post surgery high high pants
2 flannels
Towel
Knickers
Toiletries and make up in small sizes in air flight bag
Bits and bobs bag with ....
Notebook
Pen
Toothbrush
Colouring pens and sudoku / Mandela pictures
Fan
Mirror
Small purse with change
Eye mask
Ear plugs
Wipes
Hot choc sachets
Roobush tea
Swiss army card
Small hairbrush
Empty tiny spray bottle for spritzing water.

I can travel in one set of clothes and pack a change for when I am with friends .
Anything else Oh Wise Ones ?

Lolling at the Swiss army knife trumpton . You really are equipped for every eventuality! please don't use it for a bit of self surgery

Oh....you said card! Is that a different thing?? I'm imagining you with the knife between your teeth and ready for anything!

It’s a tiny credit card sized thing that has mini scissors,file,tweezers, toothpick & screwdriver . It lives in my bag normally . No self surgery I promise !

I need one of these in my life. Definitely going on my Christmas list.

@Trumpton don’t forget earphones and chargers for all electronics.

(Apologies for barging in on the thread - my treatment was last year but I still lurk as it never really goes away)

Can you fit an extension lead in your bag, or have a extra long charge cable? When I was in hospital the sockets were in the wall behind the head of the bed, so my charge cable didn’t reach the table in front of me. I got DH to bring me an extension lead!

Yes I have earphones . Multi usb plug and long leads noted .

Got a date through for next consultants appointment, just before Christmas ! Im going to make a list of things I didnt ask or understand from last one and then try and remember to take the list with me.
Im worried that I am not going to be offered a second line of treatment as I am "under surveillance". still dont understand why they cant do another couple of rounds of chemo as I was told that I had responded well, and I didnt have any really bad side effects?
ALso very concerned about my little dog at the moment, he is 15 and suffers from pancreatitis and seems to be having a flare up. Been to the vet this morning, and also asked about possibly putting dogs to sleep when I cant look after them anymore, very non commital about this. One old dog and one ex puppy farm bitch who is only just coping with living with me after a year.

Results aren’t back from the lab so appointment rebooked for tomorrow.

I’m experiencing some tightness and tenderness in my armpit now which I take to be cording, despite doing my exercises diligently! Upping the frequency of stretches as a result. Any other advice?

Evening everyone,

Elspeth it sounds like you have a lot of questions you need answers to. Making a list is a good idea I always write questions down before an appointment so I don’t forget them.

Trumpton I’ll be following your progress with interest as I’m waiting for a date for mastectomy and DIEP.

Brassica I am 2 weeks on from my SNB and still feels quite tight and sore. Have been doing my exercises and my range of movement is fine. I haven’t driven yet as I don’t think my arm is up to changing gear! I tend to sit on the sofa with my arm stretched out and I read somewhere that clenching and unclenching your fist was a good thing to do so I do a bit of that while I’m watching tv. Wishing you luck with your postponed results.

I know I am lucky as my clear node means they don’t have to bring chemo into the equation. However the not knowing when my operation will be is driving me crazy and I’m not sure how to cope with it. I can’t plan anything I don’t know if it’s worth going back to work and not sure I’d be any use if I did go back. My tumour was ER and PR positive so will need hormone therapy but they won’t sort that out until after op and I just keep thinking delay is not good, why am I so unimportant that they can’t even give me an indication of when it will be? Too much time on my own thinking is not helping.

I’m feeling very reflective today. At 4.45pm On 7/11/18, my dr told me I wasn’t well and she wanted more tests doing. Until then, I had no idea how ill I was. Thank God she did this tests and my cancer was caught early.
DH is away in London and I’m off to a taster evening at Slimming World. I’m expecting a big gain but I’ll accept it and move on x x x
Love to you all x x x

Hi all,
I’m now 10 days post op and was feeling a bit better until an emergency dash to the doctors this morning as a large part of my wound has got infected ☹️
Hopefully 10 days of heavy duty antibiotics will sort it out 🤞
The item I appreciated most when I was in hospital was my headphones. Even if I wasn’t actually listening to anything they blocked out the noise of the bleeping of all the machines etc.
Sending love to everyone

Piggles Thanks for the info on the port.

Brassica thanks for the info/support. I'm going to get some dark nail varnish!

Quick question for everyone - my oncologist said I should have my hair cut short (it's past my shoulders - and I cut it to this "short" length after my diagnosis!) To reduce the weight and help the cold cap work. I've always had long hair, so am finding this hard (a bit pathetic, I know!). Do you think I can get away with a chin length Bob, or does it need to be properly short? Will be asking chemo nurses tomorrow, but thought I'd ask the collected wisdom here first !

Dreading chemo tomorrow, but feeling glad it's finally going to start! Going to try to get some sleep, and will report back tomorrow.

Zorgo pre chemo I had my hair cut from a touching the shoulders bob to a shorter bob which was quite a wrench for me and I still ended up losing quite a lot of hair despite using the cold cap for all 7 chemos

I now have very short hair indeed as hairdresser recommended it all cut to one length (I lost quite a bit on the crown of my head despite cold cap and its now growing back but a bit thin still and very short). He said it would look thicker if I had it cut and the regrowth in the thin bits would be more obvious, which it is. I've definitely got more hair than I would have had if I hadnt used the cold cap but it's very different from the old me and that's a tricky adjustment to make. I know meercat has had a very much more positive experience than me.

I guess im just saying be prepared for it not necessarily being a perfect result....maybe it will be, but it might not. I would probably take your oncologists advice as they tend to know what they're on about, but in my experience if it's gonna come out then it will, and when it's ready to stop then it'll do that too, and what you do to it, in terms of brushing, washing, cutting, won't make a massive difference. Obviously you want to treat it gently but it you're only retaining hair because you haven't brushed it for a week then in my view you're not really retaining it and it'll come out eventually. Others may have a different view.

Ive really struggled with the hair thing but you do kind of adjust to it and find a way of managing.

Good luck with your first session tomorrow. I'll be thinking of you.

Just noticed your actual question! I think chin length bob would be fine. Make sure you're happy that the cap has been closely applied on that first session and, esoecially if your hair is thick, make sure it's well dampened with conditioner applied so that the cold gets to your scalp. I had very thick hair and I think this is where I went wrong in the first session...my scalp just didn't get cold enough because the student nurse didn't get the cap close enough.
Probably made you completely paranoid about it now....sorry!

Yes, I think you could stick at shoulder length, from seeing the results a good friend got. She lost a lot by thinning, but it came back.

Zorgo yes I had my longish hair cut to a chin length bob right before my first chemo session in the hope that less weight pulling on the follicles would help it cling on in there. Hopefully it works! It’s the shortest I’ve had it in nearly thirty years so definitely took a bit of getting used to. But it’s so much easier to look after. My hairdresser also said he can cut it shorter again and/or hand-tie me a wig depending what happens over the next few cycles. I’m doing the cold cap too.

Thanks everyone! Got my first chemo this morning - absolutely terrified, but also glad that the waiting is nearly over. Think I'll get my hair cut shorter before the next round.

For those who lost hair, when did it first start coming out? Was it immediately, or after a certain number of days?

Will report back later on how it goes at the hospital today. Hope everyone has a good day.

Zorgo. I cant remember what chemo drug you will be having. As far as I know it is the type of drug that determines whether cold capping will work well or not really at all. My chemo was Paclitaxel and cold capping worked really well for me. I did still shed quite a lot of hair, mostly after chemo had finished, but I didn't need a wig or hats except to go home after treatment when my hair was damp and full of conditioner.

My chemo unit did tell me that even if you have to have a drug that causes hair loss even with cold capping, regrowth starts sooner and is faster with the cold cap.

I would echo exactly what WTF said about being fussy about preparation and the fit of the cap. Dampen well, use plenty of conditioner and make sure that the cap is fitting really snugly with no air pockets. I used to use my hands to press it well down from the crown.

Best wishes for today. The first session is scary as you don't know quite what to expect. Sounds daft but it does get easier when you know what you are dealing with.

Trumpton, ace packing plan!
elspeth shame you have to wait a while for your next consultant appointment. I wonder if "under surveillance" for now means that they will schedule surgery when they are happier with how things look? But I don't have a clue really.
Brassica sorry about the armpit pain etc. and delay with results, at least you'll have them before the weekend.
MrsL17 I can understand how hard it is waiting for a date for surgery. Can they tell you when you might hear about it, at least?
fudges what bad luck to get an infection in the wound, hope ABs do the trick. How are you feeling apart from that, can you eat anything much yet?
Zorgoth sending a handhold for chemo. Can't remember if you said someone would go with you, we're with you in spirit! My hair fell out about 2 weeks after my first treatment, but I didn't do cold cap and had different drugs, so not relevant really!
It's so cold here this morning! I hung the washing outside just now, brrr! Have been thinking about the Patience and its attractions, I'm sure there are piles of magazines around, some nice poncy country/coastal living ones for me, what would everyone else like? And some board games?

I had a long post ready last night then we had some drama here and I lost it. In 2007 we were flooded and last night it was touch and go. Fortunately a tanker and pump arrived and saved the day. Just some water in the conservatory and the garage where it comes up through the ground when the water table is very high. Had the family mopping.

How about Jigsaw puzzles Bridget? I do love a good pub quiz and we would probably all do very badly with befuddled chemo brains and stress.

@Trumpton I thought I was the queen of the packing list (I have a packing list folder on my computer ) but you win. I might just add a portable charger in case you can't reach the socket post op.I took a tablet pre loaded with some films and a little stand to prop it up in front of me on the wheelie table. I have to ask Mandela pictures??

@Zorgothslugofdoom good luck today. I didn't cold cap but I had my shoulder length hair cropped to a pixie before I started chemo.

@Brassica Cording looks like a tendon. Look at your armpit in the mirror and compare it to the other one. If you can see what looks like a tendon running down that's cording. You can see an example on google images. When I got it I told the breast care nurse I had googled it and she didn't even ask to see it just booked me in with the physio. So if it is cording the exercises are good but it needs massage. Very difficult to do yourself so rope DH in. You have to apply pressure with the palm of your hand along the cord. I found it very, very painful and we had to do it little and often.

fudge what a shame just as you were starting to feel better. Are you trying to do too much?

Elspeth sorry about your elderly dog. Are you managing them at the moment? Try not to dwell on the what ifs. I am sure there would be a suitable home somewhere for your dogs.

Got called in to GP yesterday about the pelvic scan I had a couple of weeks ago. The sonographer had told me he "couldn't see anything needing urgent attention". The scan was to look at my ovaries which were fine but he did spot a problem with my cervix so GP is referring me to gynae. I'm going to put this in a box because I can't think about it. This year I've had urgent referrals to respiratory, haematology, breast and now this.

zorgo I was on a 21 day chemo cycle and my hair came out the most a couple of days after my 2nd chemo....I'd already had a bit of shedding but not much....in the week after 2nd chemo I brushed it and loads came out....it was a low point and I considered dumping the cold cap and going for the shave on that day but was talked out of it by my real life chemo buddy.....I'm glad I had that conversation.

I think the big loss was the impact of the 1st chemo session, not the 2nd, as the shedding stabilised after that.

Bloody hell skap that's something you could do without. Yep, big box for that one at the moment I think.