Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Anyone got any words of advice/suggestions about how short to have my hair cut?

Ive got an appointment on tues (and my best friend recruited to come with). Short hair doesn't suit me and I'm hugely resentful of having to PAY to have a hair cut I know I won't like. Does it greatly matter what I have done / is it better to have a really short crop?

The nurses have advised me to cold cap because they think that will (probably) promote better regrowth. I didn't mind the cold cap so I'm fine with that. But they've told me I will definitely lose it, cold cap or no.

But I've no idea what to say to the hairdresser in two days' time, much as I'd like to opt out of this decision!

@AllotmentTime which chemotherapy regimen are you on? I'm coldcapping (TC) and was optimistic about it but now 30 days in and my hair is shedding in clumps. Started shedding like mad from day 20. I still have enough for people not to know but it is at a point where I think much of it would come off if I gave it a good brush. I will persist even if it comes off. Not sure if cutting it short would have made any difference. Perhaps you don't need to cut it short, and just let it shed from where it is now. I cut mine to a bob.

EC-T. It's pretty long, I fear it'll mat and clog all the drains/hoover if I leave it.

@AllotmentTime I've just finished my final TC treatment and cold capped. I had really thick, below shoulder length hair and had it cut up to bob length after the first cycle. I had a big shed at about day 19-21 after the first treatment and since then it's continued to shed (but less drastically). I think having it cut to a bob really helped stop it from matting and also I've slept with a silk beanie cap on which I think has made a difference. I reckon I've lost about 80% but kept much more than people I know on the same regime who didn't cold cap. It's now v thin on top but the side lengths remain and with a baseball cap still looks ok(ish). Im now trying to work out at what point I get it cut again as otherwise when it starts growing back I am going to be sporting a mullet!

I don't think a short crop is necessary, long bob length will help. My hair was bra strap length at diagnosis (full of split ends due to lockdown mind). I got it cut to shoulder length so I could still wear it up as I wanted to avoided too much heat styling during chemo. I don't suit short hair, makes my face look fat.
I had EC every 2 weeks followed by weekly Paclitaxel. It was fine after the first EC but a week after the second, it started coming out quite dramatically. I was going to give up on the cold cap but the chemo nurses convinced me to stick with it. The loss slowed down and it actually started growing back on Paclitaxel! I did lose about 2/3 to 3/4 of it and it was a mess but I was never bald.

I had shoulder length hair and I got it cut to a chin length bob, I really resented it too. I had carboplatin and paclitaxel and I cold capped. It went at the front before anything else, I think as the cold cap wasn’t properly on the first time, so I wore a wide headband for quite a long time. It was the top it looked really thin on after three or so rounds so I did wear a wig in the end even I went out, but around the house when I caught sight of myself in the mirror I looked pretty much like myself so it wasn’t a shock. It’s not incredibly easy growing it back though, I still have the straight bits that are in a chin length bob at the end and still highlighted, and then I’ve got the regrowth that’s grey and curly on top, so it is a bit messy 9 months on.

Well, it's one damn thing after another. Lymphedema. Just realised pressing against my upper arm and upper forearm is causing 'pitting'! I thought my right arm looked puffy but until now I felt better by seeing it did not pit. But, now it does. Is there any chance at all this can be temporary? As if I was not depressed enough about this shitshow already. Does anyone else have lymphedema? If so have any of you considered getting the surgery to bypass the lymphatic blockage? Ok, I know I am thinking ahead, but I take it with this early action is paramount. Does that work?

Oh, I should’ve said, I now have a fringe, which I haven’t had since I was about 18 years old, I’ve always had a parting, but I think the fringe really suits me and looks more fashionable so I am going to be happier with my new hairstyle when it all levels out, so that wouldn’t have happened without chemo!

@isaxx don’t panic! It may just be post surgical swelling. Try to rest the arm elevated on a pillow or sofa arm, and sleep with it on your upper side to help it drain. I found cycling made it better but too much exertion made it worse eg sweeping leaves or digging. If your hand isn’t swollen it’s unlikely to be lymphoedema but ring the BCNs to get it checked out. They don’t often recommend the pressure sleeves unless it’s proven lymphoedema.

@isaxx there are lots of non surgical ways to help with lymphoedema- have a look at https://www.pennybrohn.org.uk/resource/lymphoedema-exercises/ massage etc can help- I’m having light treatment which is making a difference.

Thanks @AllotmentTime bonjela and wet wipes added!

Sorry I don't have any practical advice for anyone else.

@isaxx I also am worrying about lymphoedema since having my surgery 3 days ago. I was concerned my drain may not be working properly and started getting some swelling and pain that I hadn't noticed before. I have had advice from the lovely ladies on here and spoken to 111 and my local hospital and phoned the ward where I had the surgery. Unfortunately there is no-one who could look at it until tomorrow so I'm willing it away. I'm also trying not to let this whole cancer thing get to me and am doing really well so far. I hope you have a better evening and don't get too depressed. Think about how wonderful you are!

@thesandwich @TopOfTheCliff well some very good practical advice there. Thank you both. I will do the elevation and check out those exercises. I will also get it checked out and try to not lose it every time a new challenge is thrown my way..

Echocardiogram tomorrow. Wish me luck, all.

Good luck @Florabritannica . When will you get the results?

@isaxx when you finally get hold of the BCN hopefully they will refer you straight to a physio for some massage.

I've got my Oncologist appointment and blood tests tomorrow, ahead of my first round of CAPOX on Tuesday. What questions should I be asking?

I think I get the results straight away as I am supposed to have my first chemo on Tuesday.

I have a friend who had lymphoedema in one arm because of BC, and she credits hyperbaric oxygen with reducing it so she doesn’t need to wear her sleeve anymore. There appears to be some evidence for this, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7440127/ MS Therapy Centres do it cheaply.

@SierraSapphire looks interesting. Had never heard of it. How many sessions did she need? From googling around, it looks very expensive.
@1Strawberrycat where is your swelling? It is, at this point, most likely just post surgery swelling. I had immediate post surgery swelling around my elbow and upper arm. After elevation, it went down. That is where it is back now however, two months on.
@TopOfTheCliff when you get your swelling after energetic activity, do you get pitting in the swelling?
@thesandwich how bad is your lymphedema? Do you just do exercise for it or also other treatments? How quickly did you get referred?

@isaxx yes I get pitting when I overdo things. I’m trying to be more sensible but at the moment I have so little energy there is no chance of overdoing it. I did feel a bit better today so I think the vitamin B5 is helping a bit. I managed a 15 minute static cycle and cooked the supper. Go me!
It is okay to lose it when new challenges appear you aren’t expecting. I had a month after finishing chemo and breaking my leg when my dear old DF died suddenly at 86, I fell overboard from my boat, and my car got smashed up. I thought I was going to break down completely but I was sent to my magic yoga class by the BCNs and it healed me! If you allow yourself a good cry it helps a lot. So does having a kind person to tell your troubles to. And you have us! You will get through all this and put it behind you eventually.

@isaxx She’s still having sessions at the moment, she’s maybe been having a couple a week for a couple of months. I had them too during chemo, privately it is expensive but if you have an MS Therapy Centre near you then it’s cheaper, we pay £15-18 a session depending on what offer is on. Although it’s MS you can go for all sorts of other things as well, including long Covid and cluster headaches!

Hello all. I need to read the thread. Never made it over so lots to catch up on.

I have stage 1 bc and two areas will be removed this week, plus basically a double boob reduction lift.

They don't need reducing at all but hey ho, they'll be healthy!

I had biopsies on my right side but it's just fibro doo dah.

Radioactive seeding today as one area is tricky to find.

Thank you all VERY much for the haircut advice. I'm so glad I asked! I was going in thinking this needed to be pixie short but it sounds like I could aim to keep much more than that. Short choppy bob sounds like the way to go. I don't really suit a bob but I have at least had one before, so more familiar ground.

I don't see myself getting a wig. I just don't think I will bother to wear one. I am fundamentally too lazy 😆 I do quite like a hat though, might buy a funky hat or two for autumn/ winter.

@isaxx and @1Strawberrycat hope you can both get some help now it's a Monday.

@Ikeameatballlunch and @Florabritannica good luck for this week.

Hope everyone has a good Monday

Please may I have your perspectives as I may be over reacting. Not health related.
Background: living with metastatic breast cancer for 4 years. On Enhertu every 21 days. Side effects unpredictable and usually extreme fatigue, wobbliness due to fatigue, low level nausea and brain fog. Widespread bone mets and although I am fully mobile my neck has fused and I use an elbow crutch to stay upright. Neck sits badly on shoulders. Kyphosis and unable to turn neck. So disability and chemo are my main issues. However I look relatively normal. I work 2 days a week and if feeling ok can walk on paths, lanes for miles and uphill. Im doing well but I am not 100% able.

Its my annual hols to Wales this week. I go with DH and while he plays games etc I have a great time alone. I wander around beaches, walk along paths, coffee, read my kindle. I love it.
A friend of ours, M, is going with his partner S this year. I see M and S every 3 months or so at BBQ's, coffee, walks etc. They are fully aware of my situation. I have a feeling that when M brings S he wants reassurance S is being entertained as he wants to play board games etc with the others without interruptions. So the question 'are you going to Wales?' began a few months ago.

My other current challenge is I get overwhelmed easily. Asking me for commitment causes stress as I dont know how I will feel.
So in my mind I have S also going to Wales and wanting a companion for the 5 days so M can play games already causing me low level stress.

S then sends me a link to a nature reserve asking if I wanted to go. Its described as uneven underfoot even in good weather. Terrible in bad weather. She is also hinting to bring my costume as she will be. I can no longer swim due to my spine deformity.

Am I over reacting?
I felt upset and annoyed. She knows I use an elbow crutch. She knows I cant swim. She knows I can only walk on paths and instead of sending me a choice and asking me 'which ones can you do?' for the nature reserve she has instead assumed I can do the roughest one. I did respond to say I cant do uneven paths and her reply was 'I totally understand' but does she? I feel like I am being used as a companion for the 5 days without any thought. Because I am an accommodating people pleaser Ill end up going along with the suggestions and feel drained and exhausted. Ive talked it over with my DH who says I need to make a decision thats best for me.
So Ive cancelled my space. My DH will still go.
Im miffed as I dont get to go on holiday abroad due to insurance issues and I dont take a holiday in the UK either because it has to fit in the 21 day enhertu infusion and 18 day blood tests. I also live in fear of a treatment change and I literally live for the 21 and 18 day cycles.

Have a peaceful day and thank you

@Greyandrare123 , that sounds tough and you’re not over reacting to be upset. I understand why they would be overwhelming. But it seems terribly sad not to go. Can your DH advocate for you and explain to S how much you need peace and quiet and your own space? And if you really want to be accommodating, suggest a single day when you could do something together?

@Greyandrare123 that is very upsetting for you. I totally understand the overwhelm of people making plans for you when you can’t plan ahead more than a cycle of Enhertu. I think that goes with the territory if you read Peter Gray on the psychology of life after a cancer diagnosis. I would try to salvage the holiday by being blunt with M and S. “ I think you have the wrong impression. I am on long term treatment for cancer and I am quite disabled. I will be resting and unable to join you for physical activities. I’m sorry that I won’t be able to go to the Nature Reserve with you” unless you would prefer to stay at home?
I am off to France on Friday with 5 super fit cyclists to support my DH on a crazy endurance event. I shall be pottering on my ebike eating croissants and reading lots of crap holiday fiction at the gite. They are welcome to zoom round without me. They know the score! I am most anxious about having to share a room with two single beds with a male friend. I’m hoping the Living room has a sofa bed he can sleep on! Not because I think he would be in any way inappropriate but because I am spending about 15 hours a day lying down.