Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@Lainybird It’s really tough. It’s really tough when you’ve got all sorts of other tough stuff going on too: fear, anxiety, anger, guilt to name but 4 possible emotions.

Hair loss is complex. Loss is associated with shame (tar & feathering), fear and marking as other (concentration camps), poverty, dirt and disease (infestation).

Hair is part of our sexual identity, our tribal identity. It’s not ONLY hair.

A cancer diagnosis and subsequent treatment takes such a lot from us. And then we have the added insult of hair loss, marking us as other, and Victim. I don’t know about you, but it was also really uncomfortable, tender scalp, which I had not expected.

I coped by ‘getting ahead’ and having a buzz cut. Wigs didn’t work for me, uncomfortable and I kept catching a glimpse of myself and thinking ‘Who’s that woman, and why is she wearing a ferret on her head?’ I cried, I vocalised my feelings, was v v rude to someone who said it’s only hair, and it will grow back. I wore hats. I used black humour. Lots of new make up. Oiled my scalp daily, and v careful in the sun.

I felt v self conscious for a week or two and then I thought fuck it. This is the temporary me.

Feel those feelings, cry those tears, funds allowing, buy yourself something indulgent. You will find your way to your equivalent of fuck it.

Hugs. You are not pathetic. You are stronger than you know.

@GrannyGoggles Thank you for your reply, yeah I need to find my fuckit moment. Black humour is also my go to setting for trauma, and my friends and partner get that, so that does help. Think I had convinced myself it wouldn't happen so was a shock as it is now coming out in clumps. Have spoken to my fab hairdresser so will be in next week I think to get it all off so that it's done. Hopefully like you say in a couple of weeks it will just be my new temporary normal. Thanks again x

@frostyfingers

I have tnbc too.

Mine was stage one and grade Three

I had lumpectomy, chemotherapy ( EC and then Pax and Carb) and now radiotherapy.

I cold capped.

My treatment has taken nearly 12 months. I had some weeks I couldn't have chemo.

Happy to help with any queries you have if I can.

@Lainybird

hair loss is getting to me too. I’m one round of chemo down. Next lot is hopefully Tuesday.

im cross at the situation. Cross that I’ve had to cut my hair. It marks me as a patient. I hate it.

i hate that everyone keeps saying the short hair suits me. I mean it does. But stop it.

im going to make an apt to see someone about a wig this week.

@ememem84 I have a wig appointment next week. Not sure how I feel about it, really 😕

Me neither. I flit from “I don’t need a wig I can cope without” to “I want hair”

but I’m going to make the apt and see where we go from there.

luckily my health insurance will cover head coverings.

Does anyone have any tips to stop scalp itching?

@ememem84 This, for a brief time, was my specialist subject.

Euecerin scalp balm(Amazon) was good for me. Tried a few, this was effective and not horribly expensive. I washed my scalp daily in the shower, water not too hot, used conditioner too. Used MooGoo, they specialise in gentle products for allergies and have shifted to products to help people undergoing cancer treatment.

The peak itching for me was when the hair was falling, it did settle, but my scalp remained tender.

It seemed like another effing thing. Hair loss AND it’s uncomfortable….you’re kidding

@ememem84 Oh, and paracetamol if it’s really uncomfortable

@GrannyGoggles thank you!!!!

my hair is falling so it’s at peak itch. But I’m determined to try and save it.

I need to wash it. But am holding out until tomorrow - chemo day (hopefully if bloods are ok today) as I need too go in with wet hair for cold cap. I’m also reluctant to wash it too often because I don’t want to pull any more out….

will get the scalp balm though.

@ememem84

They would wet my hair on the ward. I didn't go in with it wet.

Me too re wig….I made a wig appointment then cancelled it. I have a “Look Good, Feel Less Shit” session tomorrow at my local MacMillan centre. (Sorry, that’s how I feel) and I know the wig specialist will be there so I can talk about it with them direct.

@Littlecaf let us know how that goes. I'm thinking of going to one, too. Have to travel up to Bart's Hospital as that seems to be the nearest place to me. I do need to both look AND feel less shit ...

We are going for chemo tomorrow! Hoorah!

Ah I have super thick hair so it saves them time if I go in with damp hair at least!

bloods all fine today hoorah.

oncologist has said that we go with the same dosage chemo as last time tomorrow, and see what the bloods are like again in 2 weeks. If they are dropped down again like last time he’ll either switch the dosage and add one more session to the end. Or we go every 3 weeks. So either way it will be sorted.

Just wanted to share with you all something that has really helped me. I no longer feel as panicked.

First of all, my daughter (16) had a big cry. She had been sad for a few days about other things - or at least she kept talking about other things as the problems though none of them really made sense. It was when we started talking about how much we loved each other and about the stuff going on with me that she had a big cry, and since then she has seemed a lot happier. It seemed to open the door somehow because then I spent the next morning crying unexpectedly amongst near-strangers (hadn't cried I think since the diagnosis week). Then I skyped a wonderful friend who listened to me for a long time. When she did say something, it was that "this has all only just happened! And you're at the very beginning of the process of adjusting to it. So it's not surprising that you don't know how to feel and that you're all upset". This somehow freed me up to feel how I actually feel and stop trying to be okay.

I've started calling it 'cancer' sometimes out loud, and also I've started telling people that it's shit. I've also noticed that till now I'd been focused entirely on the statistics, reading case studies etc etc, and had not even glanced at the pages about the emotional impact. I had emailed Macmillan with a convoluted question about the numbers, and they basically replied with information about coping emotionally which I dismissed as irrelevant. I now realise that I've been kind of ridiculous - with my endless checking of 'predict breast' and my zero attention to the emotional process.

I then watched 'inside out' on a recommendation, and identified with sadness.
Then yesterday I had my sentinel lymph node biopsy - and it's comical because my breast is now tinged a bright blue - just like how everything sadness touched got a blue edge!
Cancer is sad is what it is.

On a more practical note: I feel kind of fine after the operation, but have a long wait for my results (3 weeks!). Also I left when the nurses said I was good to go, and don't know anything about how things went. I also don't know when the dressing should come up - do I just take this off myself at some point? My leaflet says I can shower after 24 hours but cannot soak in the bath.

@breastcancerpanic that all sounds very positive progress and that you are adjusting to your reality. It takes time to catch up emotionally I think.
It is hard to wait endlessly for more information but eventually you get there.
With the dressings are they clear plastic? Or are they fabric? And do you have any sutures to come out or is it glued or self absorbing?
If plastic then leave on while you shower and remove after about five days. If white cloth/ lint then get a pack of spares from the chemist in a similar size (mepore, cosmopore or similar) and remove and replace after showering. You can inspect the wound too and make sure it looks okay.
I would expect if you had sutures to be removed they would have made an appointment for you but you could ring the ward to check.
I hope you have some nice treats to look forward to.

Ring the bc nurses regarding your dressing. They should have explained it to you and every hospital /surgeon is likely to have variation.

@ememem84 i hope today goes well

@breastcancerpanic big hugs. This is so rubbish but glad to hear there is emotional progress. Do ring your nurses re the dressing. I wasn’t allowed to shower for a week after my first lumpectomy and node biopsy so you’ll need your own personalised advice.

it’s my birthday today. I was up at 3am as my drain has leaked again, singing crappy birthday to me. I had my mastectomy and reconstruction on Friday. I’m feeling good but have had a few issues with drain leaking - going in to have it checked and redressed today, went in yesterday to have part of it swapped out. My new inflatable boob is looking good. It’ll take me time to get used to it but not going flat has been the right choice for me. This too will pass.

Hugs to all of those in the storm or the calm between.

I’m done with the drugs. Waiting for my cold cap to thaw and then I’m outta here.

50% done with the EC today. Woooooo!!

had a cry here today. But am ok. Had tea and biscuits. And watching secret lives of Mormon wives.

Woop woop well done @ememem84 Next time you’ll be more than halfway through EC. X

Ive been watching “apples never fall” on iplayer. A good watch too although you could drive a truck through bits of it!

I’m having my eyebrows bladed next week with Karen Betts. Thanks so much for the tip, @EachandEveryone My nurse tells me I am due for chemo in Nov, so I have time to recover from the mastectomy and get prepped for the next stage. I’ll get my date when I get my operation results in a couple of weeks.

Oh Karen Betts are great I’m glad you decided to go with them. I go to the Mayfair one and they are proper Yorkshire lassies makes me quite homesick. They are dear but it becomes cheaper as you go along. It is quite painful so take something before hand.

im still feeling lousy the nausea seems to be taking longer to go I just can’t be bothered.

esa rang today to tell me I won’t be entitled to it as I’m getting my nhs pension monthly but to fill the forms in anyway. I’m going to be broke now until I get back to work.

Im hoping to get Green Man tickets this week. Has anyone been?

Thanks for the tip @EachandEveryone I must look into esa as I won’t be working until treatment is done and have no pension yet.

I’ve been to see my nurse and she has sorted out my drain dressing in a way that I hope will not soak out in the night. She is a super lady and has cheered me up.

I hope the nausea soon passes. Keep going. 💐

I'm finding it so helpful to read about all your journeys, and will be better prepared for the next steps. Big hugs to all of you.
I emailed the breast cancer nurses who have sent me information on exercises and the dressings. I feel like I must have missed some information drop by going home but they did tell me to leave whenever the surgery nurses said I was good to go. But good to find out that the breast cancer nurse team are available by email and v helpful.

Fill out the entitled to form and see what the result is. Before I got my pension I was entitled to some universal credit but I do rent it might be different for people with mortgages. I also get pip which isn’t means tested.

every appointment is costing me £30-40 on Uber the money really starts to go down.