Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

I used to have waist length dyed red/brown hair. When I started chemo and cold capping failed I knew I'd lose all of it and had decided on a brown bob wig. When I went to collect it (in the midst of chemo - sheer grit and determination got me there!) My husband spotted a silver grey funky bob wig and dared me to try - it came home with me and i ditched the brown bob! If nothing else, cancer has made me be choose the not safe option - I don't care as much now worrying what people think about me!

My hair has now grown back enough to have it coloured and cut and it is the colour and style of my wig. I love my new look and barely recognise myself in photos from before! My little boy doesn't really remember me with long hair.i've decided not to play it safe and to go with the adventurous options and seize the day - it's extremely liberating!

@Zorgothslugofdoom wow! I love it! I’m also cold capping and I thought it was working as nothing fell out until a week after cycle 3 and it feels noticeably thinner now. Just had my fourth yesterday and have 4 lots of paclitaxel to go so now I’m assuming it’s all going to go. My hair grows painfully slowly and I was praying the cap would work 😞

I’m finding that most people I’ve met who have gone through this have told me they’ve become more adventurous with clothes/hair/makeup but I’ve done the complete opposite. I’ve gone from being the pink haired woman in a dress with rainbow dinosaurs or planets all over and sequinned boots to the one with thinning mousy blonde hair living in jeans, a black hoodie and trainers. My entire wardrobe just suddenly offended me and I had to get rid of it all. At least my daughter is only 8 months old so isn’t weirded out by her mother’s sudden transformation 😬

Hello ladies. So I got the long awaited results of my HER2 test today & it's positive so chemo is required before lumpectomy.

So my official diagnosis is invasive Ductal carcinoma grade 3, ER positive & HER2 positive. Tumour last measured during ultrasound as 2cm. Didn't appear to have spread to lymph nodes during ultrasound.

I'm so scared now for what's to come. I had prepared myself for a lumpectomy & radiotherapy but now I'm about to embark on chemo. It all sounds so scary, I feel like I've just been told im about to die.

Is a 2cm lump more likely to need a mastectomy? I have to get an MRI scan before chemo, is that to measure the size again?

Told my kids tonight what was going on. They were fine when I told them but just had tears at bedtime. I just feel so drained with it all x

@WorryMcGee I think you should cut yourself some slack and recognise that you are in survival mode getting through chemotherapy so even if you wore pyjamas all week it wouldn’t matter. Once you get through and out the other side you can decide what bad ass cancer survivor chic looks like for you.
I was a pillar of the community senior partner in a GP surgery in tweeds or tunic and leggings and latterly scrubs when the pandemic started. I haven’t worn any of those clothes since. I now live in gym leggings and T shirts and big baggy jerseys and thermal underwear. I can imagine emerging from the cocoon in the spring hopefully a bit thinner again and wanting a new wardrobe for my active pensioner lifestyle. It will be fun deciding what that should be. I might go full on hippy boho patchwork and tie dye now I don’t have to impress anybody!
@thereisonlyoneofme sending warm wishes. You matter to us! Xx
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Good grief, you women impress me so much! I may have to follow your lead. Strangely I’ve been looking at dresses lately, it’s very odd for me and I don’t think I’ve worn one since dds graduation in 2018.
Youve inspired me to purchase and get my hair done.

cheekychipmonk I was in the same boat as you - had prepared myself for surgery and radio, then was a bit blindsided when I was told it was Her2 +ve and I'd need chemo first. Just be kind to yourself- one step at a time.
My tumour was 2.5cm and I would have had a lumpectomy, but because I had such big boobs (and had suffered with neck/back pain for years because of it) my surgeon did a mammoplasty (which is essentially a lumpectomy with reshaping to a smaller cup size). Very happy with the (unexpected) result!

The only thing clothes wise that changed for me was I allowed myself to wear nice black soft jogger type trousers instead of skin tight jeggings. I’m struggling to let those go I have to say! My tummy gets quite irritated if I wear my jeggings all day now.

We’re off on our long awaited dream holiday in 59 days. I’ve been buying some beautiful summer dresses on Vinted but it’s crushing me, I try them on with my “Eleven from stranger things” haircut and just feel so ugly, like a boy playing dress up. I absolutely refuse to take a wig on holiday so I just need to toughen up. I wish I could be kinder to myself but I just can’t manage it.

@AGreatUsername - it is a state of mind. I feel ridiculous in my wig (just not like me) but I know objectively it probably looks OK. Do you have a truthful but kind friend you could send some mirror selfies to, or invite round to help give you an honest opinion? Both of those things helped boost my confidence and make me think I look cool rather than cadaverous (whatever other people might think). Either way, hopefully when you're there you will be so relaxed you might care less than you do at home?

@AGreatUsername I am reaching through the screen with an unmumsnetty hug. I wish I had some advice but I think that’s part of it for me too - I look at my one boob and bald bits and think, I can’t make this look pretty so I’m not going to try. I really hope you have a wonderful holiday when you get there, you deserve it.

Ive had another pallava yesterday. Because the primary is unknown and theyve ruled out where it could be my oncologist wanted me to be treated for skin cancer. Sadly, the skin doctor said no point unless skin is confirmed. Original lovely doctor has just got back to me and said lets just start the chemo then. He specialises in cancer of unknown primary but hes very optimistic as he knows what kind of cancer it is and hopefully the hidden primary will be blasted as well. Im terrified but pleased there is a plan. And he said I will beable to go to Glastonbury in June 😃

I've been away a while but got my 3rd Zoledronic acid infusion today, I have them every six months for 3 years. Feels odd going back to the chemo unit. Also got an appointment with the oncologist on Monday and I'm a bit sore to the touch in some areas around my fake boob which I need to mention.
As ever, sorry to see new joiners on here.
@WorryMcGee I cold capped. Most of my hair loss was between my 2nd and 3rd EC chemos. I then had 9 weekly paclitaxel and it actually started growing back.
@EachandEveryone you are having quite the saga. At least you'll soon be started on chemo. I've had a couple of appointments at the Royal Free, it's big! My cancer treatment wasn't there but someone I know from the gym is being treated there. He had surgery and is currently having oral chemo, he's been full of praise for the staff he's seen.

@Vinorosso74 thank you, that’s given me hope that perhaps it won’t continue at this rate. Nothing had come out at all until now 😞 on my head that is - bit sparse in other areas and patchy eyebrows! I am having four paclitaxel on a two weekly basis and then I’m done with this bit and on to radiotherapy.

Another one with crazy short hair & no idea how to dress now checking in. I’ve leaned into my agoraphobia and have loads of lovely pyjamas. Chelsea Peers jersey ones are very soft & have some nice designs, I also have some reet fancy Kelly Green linen ones that cost a ridiculous amount. I often just throw on dungas over pyjamas to take daughter to school (the shame); or joggers. I have some bright colours of joggers and sweatshirts if I’m feeling them. And a lovely long huge floral weather-proof coat thing. Fling it on over any old shit and job done. I hate my hair post-chemo and it’s not growing back much as current drug regime causes hair thinning.

More to the point I am sitting here paralysed by Scanxiety. Scan is not until 6.15 this evening so that’s a whole day of mortal terror. I have an appt with oncologist on 19th; not sure if that’s results or not; have put in a call to my BCN but she’s not back until Monday.

I’m convinced the current meds I’m on are not working (I’ve been off them two weeks anyway as have v low white blood cell count) and I’m just generally very terrified.

I’ve finished re-watching all of Happy Valley which took my mind off impending doom, but I seem to have a Yorkshire accent now. I’m just sitting here in bed; can’t even get dressed to go for a walk. I feel like one of those half-dead mice the cat brings in who just sit in a corner quivering, unable to move.

@mowly77 - oh that's rubbish having a scan so late in the day and so much time to worry. I'm not surprised you're paralysed by anxiety. I like the idea of luxe pjs though. Funnily enough, I tried to watch Happy Valley yesterday - from season 1 but I found the plot (and the cancer subplot) too grim, and didn't make it through the first episode. A shame, as I loved Sarah Lancaster's character. Keeping fingers crossed for your scan.

@chubbychipmonk having chemo first has some advantages. First it can shrink the tumour down so they can do a less aggressive procedure. In my case both times it has disappeared and they just have to remove the scarred tissue with a safe margin round it. 2cm is small in the scheme of things. Secondly they can see if you have responded to treatment so any post op treatment can be tailored to you. I only needed Herceptin afterwards but if there was active tumour still there I would have had Kadcycla. This is all very straightforward to the oncologists and they will be aiming to cure you. It’s tough but manageable and once you get going you will feel much better and time will fly by. The next step will be the chemo chat with the nurses to tell you what to expect. If they offer a PICC line say yes! It’s a blessing. Ask us anything you want to know. Lots of us have been through this and come out the other end.
sending strength
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Thanks @dotty2 they’re always at weird times! Late in the day … weekends … they are also supposed to be inside the hospital & not in those private mobile car park units as I need the vascular access team as my veins are crap, but they never bloody are. I’ve called them about this one; they’ve said it’s inside but we’ll see. My worries grow …

ah yes it seems like everything has got a bloody cancer plot or subplot hasn’t it … I think because I watched HV originally before I was re-diagnosed I was able to get past it. It’s a really small part of the plot tbh, although this time my mind did keep drifting … like why has she still got her hair … is she having any treatment … but she’s hardly in it. It did take me two goes as it is fairly unremittingly grim but the dark humour, feminism and Sarah Lancashire just drew me in again. There’s a great bit (no spoiler I promise) at end of series two where she just yells “What a shit week!” & it’s perfect in her delivery & accent.

what a shit week! Amen.

Thank you @TopOfTheCliff .

Prob a really stupid question but what is a PICC line?

Has anyone used a cold cap with chemo? Did it work?

A PICC line is an indwelling catheter that is fitted to a vein in your upper arm under local anaesthetic and stays there throughout treatment with a weekly flush. It preserves the veins in your arms from damage and means you don’t have to be jabbed every time you go for chemotherapy. There is also a Port option which is fitted under your collar bone and sits under the skin with flushes only needed monthly. That isn’t offered to everybody, only special people like me with cancer both sides, or those on longer term treatment.
They sound scary but they make life much easier.

@mowly77 im sorry you have the Scanxiety, it’s the pits. I hope it goes well for you and you are able to dismiss it until results are due. Much much easier to say than do!

@chubbychipmonk a PICC is a line that stays in. It goes in your upper arm and you keep it until treatment ends, it means you can get blood out of it and chemo in through it so no more needles. I was fortunate and avoided it but they said if I end up back there I will need one as chemo destroys the veins.

I cold capped on taxol/carbo 3 weekly and it was a total failure. Lost 90% of my hair 17 days after session one. I know other ladies who’ve had much more success though.

I've not read the whole thread and those I have read have my admiration for all that you have endured.

I feel a bit selfish even writing about my cancer as it's so minor compared with all of you, but I had a rare invasive skin cancer removed from my face with a huge scar and puckering left behind. I've now realised that I've got an identical lesion about an inch from the first one. I showed the practice nurse and she was really concerned as it's growing quickly and told be to fill in the online form for referral for more surgery. This will leave my face really deformed on one side. I just keep putting it off. There's a one hour window five days a week and I'm so busy with school run etc.

I need a big kick up the backside but the thought of more surgery panics me. I saw an operation on tv for my cancer that had been left a while an it was horrific. What's the matter with me that I can't start the process?

November You should get that form filled in now, as you really don't want it to progress. I understand its horrible looking not right, I struggle with that too having one breast off and hair still recovering from chemo, but there's no point looking glamorous in a coffin to put it bluntly. It maybe worth seeing if there's anyway they can repair things though NHS can be very slow on that, mine is like a 3-4 year wait from initial surgery but am pleading. I enquired about private and was £25k or so, ouch.

Mowly thinking of you today.

Re the cold capping I would give a go if offered, it does work well for some. I wasn't allowed it on weekly Pax but did my own frozen peas on my head version which saved about half my hair on the top of my head but not so much on the bits starting on sides so maybe 40% saved and with cold capping would probably have saved maybe 50%. That left my hair cut to bob length OK but then the chemo destroyed hair started coming back as crazy curls underneath sticking out everywhere, argh. Some were white, some were brown to add to the look. At first I was cutting them off but then realised that wasn't working as my hair looked too thin so needed to cut in shorter and looked on line and someone suggested hairclips to make the curls controllable so I'm on that and its better. I do look like a schoolgirl though with short hair held in by hairclips.

As for clothes I would do whatever but make sure its not bringing you down. At first I stopped wearing nice things but then I realised it was making me depressed and also I found when my looks changed people sometimes treat you less well. So I went back to making more effort and bought some pretty things and felt a bit better. Also the prothesis from Ameano made a big difference. Use the swimming one all the time as its waterproof and fits well and also a lot cheaper than the standard ones. Got them in the sale. Not sure who they think will rush out and buy breast forms in a sale.

@chubbychipmonk I have a PICC and it’s brilliant. I’ve been running and cycling with it in, for the most part I don’t notice it’s there and it beats all the prodding with needles.

I have cold capped through 4xEC now. I have mine every two weeks. I’ve only just started to see hair shed and it feels considerably thinner to me today which has got me down but I do still look to others like I have a full head of hair as it’s thinned evenly. The chemo suite staff told me on Wednesday that I’m having good results in their opinion and I guess they see more results than I do. I will continue with it for the upcoming 4 paclitaxels and hope for the best.

@mowly77 chelsea peers pjs are the absolute best and you’ve prompted me to treat myself to some new ones. I will bring some colour back into my life that way 🙂

@WorryMcGee does the end of it go into your heart?! I've just googled it. Do you not notice it's there with it I'm hanging out your arm? Is it painful? Sorry for all the stupid questions!!

@chubbychipmonk they aren’t stupid questions! I was a bit freaked out myself and didn’t want one at first but after the first session of catheters going in, not being quite right, being taken out and moved, I changed my mind.

Having it put in was only mildly uncomfortable and was really quick. They showed me the vein they’d chosen on the screen and said it was a large one going to my heart (you don’t have to look but I wanted to!). I noticed it was there at first but now I don’t unless my 8 month old tugs at it 🤦🏼‍♀️ its wrapped up, taped to my arm and I have a sleeve over it. The only time I’ve had pain is when the film dressing had practically welded itself to the cotton dressing underneath and it was a nightmare for the poor nurse to change, I could feel the pins that keep it in 😬 but again, in the grand scheme of things that have been done to me recently even that wasn’t bad and it’s only happened once.

It is so much easier than having blood drawn the normal way. You don’t feel a thing and it’s SO much quicker. The filgrastim injections at home are more than enough needles for me.

@Novemberhater fill that form in! Don’t put it off, just do it now. The image thing is awful, I am a shell of my former self at the moment. Massive, lumpy scars, no hair, aged about a million years in a month. But I’m alive. And I’m trying to be grateful for that every time I cringe at the mirror.

Like Silkie suggested it may be worth seeing if any sort of reconstruction could be done either on the NHS or privately that could boost your confidence. Don’t let worry cost you more dearly than it needs too, sending you love.