Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

I’m going to let my 15 year old dd give me a short hairstyle for a bit of fun before I shave it. Can anyone recommend a YouTube video she could watch about how to do a simple cut?

@Lunificent oh my word, I didn't ever set fire to my hair . The final straw for me was finding a hair in the sugar bowl. A YouTube video is a good idea, DD25 just cut mine about half an inch all over but I didn't have much left at this point.

@JeanLannes why are all the wigs so bouffant? 'Simplywigs' even have Raquel Welch modelling them!

Bleuuurgh. Just had MRI results from last week, which are good (tumour down to trace amount of residual cancer cells, only about 6mm, and no sign in lymphs)...BUT surgeon still wants to do axillary node dissection because the lymphs were involved pre-chemo.

I REALLY don't want axillary clearance. I'm terrified of lymphedema and the drain. I was also sure that because my lymphs now show as clear that I'd just be having a biopsy with my lumpectomy. So this has thrown me more than slightly!

Any stories (@Acinonyx2 ?) of how easy the lumpectomy with AND was would be hugely appreciated. I wasn't too worried about surgery until now, but the thought of a) having a guide wire put in (even though I already have a marker clip there?), b) being intubated for surgery, c) caring for a drain, and d) potentially developing lymphedema are sending me into a bit of a spiral...

@backformore My lumpectomy was a bit more involved but the node clearance was the sore part. The double mammoplasty was not too bad. I’m 5 weeks post op and pretty much back to normal except for a bit of soreness on my fake nipples.

I had a full clearance, all three levels and I know my surgeon wants to take more out when he operates again.

@MrsPnut How was the drain?

It was fine, I had two drains in that side, one on the other and two pumps for pico dressings. It was a faff making sure they were all in the bag before moving and trying to wash with them hung on the back of the bathroom door was tricky.
I had them for a week but I did spend the week mostly at home.

@backformore I was also disappointed to get a full clearance - same issue - tumour reduced and nodes clear on the MRI - but done because the nodes were not clear to start with. Also - one of my original affected nodes was already level 2. I can see the logic but was not happy about it.

Like MrsPNut I also had mammoplasty as well as the lumpectomy but the clearance is the more troublesome bit and I think very variable and a bit unpredictable. I'm working on mobility in that arm and have some phantom nerve pains. I have some uncomfortable swelling on that side - that's not unusual but can't tell yet if I might develop lymphodema or cording and just hoping I won't. The actual surgery and immediate days are relatively easy - then it gets more uncomfortable before it gets better. I tend to avoid taking pain killers, even paracetamol which probably doesn't help, comfort-wise.

I had one drain and surgeon took it out the next morning so didn't have it very long.

Having the guide wire put in is weird but was much easier than the initial biopsies. They check it with mammograms but gentle ones - not so tight.

I was pretty stressed about the surgery and had to really work on going into a kind of suspended zen state. It has to happen and we do all get through it. Do you have a date yet?

@Acinonyx2 thanks for that! Reassuring in a way to hear that it's not just my surgeon going over the top, though I'm still tempted to get a second opinion. I don't have a date yet as my surgeon was relaying all of this info through a locum today - I didn't actually get to see him - and I still had questions based on what kind of surgery we were going to decide on (the nurse who was taking me through all the surgery prep details raised the question of why I'd need the axillary clearance given my MRI results, so nothing was really firmed up until he could get back to me...and now we're going to talk again on Friday).

Re. the wire: did you have a surgical clip placed previously? I'm still trying to understand why I'd need the wire as well.

Are you also having radiation?

@MrsPnut thank you, too! That does sound like a massive faff. Did you know going into surgery that there would be more operations to come, or did you only find out after the first one?

I only found out from the histology after surgery. My swelling has gone down massively but because all the nerves have been cut there’s an odd feeling in my armpit but it doesn’t really hurt. It aches if I use my arm a lot.

@backformore yes I had a clip from the biopsy. My actual surgeon had been shielding and the alternative surgeon said it would be a sentinel node biopsy - that was over-turned by my actual surgeon. I have a lot of confidence in my surgeon (more than my oncologist) which helped me make peace with the deal.

When I'm recovered enough I'll have radiation - hard to imagine getting my arm over my head for that right now. I'm also starting a new targeted chemo drug for Her + with residual tumour at surgery.

Re the wigs. I have a Raquel Welch one from S.Wigs. It is terrific, I think it depends which one you choose. People had no idea it was a wig it was so good. Isnt bouffant at all.

@thereisonlyoneofme I have a R Welch from S Wigs too. I watched a lot of videos on wigs and I gather you are supposed to trim the bangs to suit (they're generally always on the long side for this reason) and you can also thin out the wig, maybe get a hairdresser to do it. I just trim mine a bit.

I have a Raquel as well. I still have some hair at the moment but it looks ouch less bouffant once I have the hairnet on. I also have another longer style from daxbourne international (my going out hair. Like I'll be going anywhere)

Still not had the courage to wear one out yet. They're better than my own hair

By hair net I mean the thing that looks like it's made from tights. A wig cap? Sorry I'm not explaining myself well.

I have just been and bought this wig www.simplywigs.co.uk/breezy-wig-muse-collection-rene-of-paris.html in Dusty Rose. I tried on loads and the woman was lovely. This wig really suited me and fitted pretty well even with all of my hair tucked into the wig cap.

I think I tried on about 15 wigs of different styles and lengths, including two that had only come into stock today.

If I decide I like wearing a wig once my hair falls out, I may buy the same one in a grey tone.

I love that wig @MrsPnut

Are simply wigs good? I might buy one more but I'm a bit nervous to do it without trying it on first

I didn’t buy from them, I went to a shop in Lincoln that were brilliant. A really nice woman with funky cerise pink hair helped me to choose and try them on.
I have a big head, 59cm circumference and it fitted me snugly because I still have my hair. It will fit better when it falls out.

I’ve had the call from Healthcare at Home, bloods tomorrow and chemo starts on Tuesday. I was hoping to have the weekend before treatment started so we can have Chinese takeaway as a final meal.

Thanks, @Acinonyx2 ! Yes, my nurse said the exercises are super important as she knows people who have had their radiation postponed if they can’t make the arm movements. Sigh - it really is one thing after the other!

Chinese take away. I might do the same. What will you have? Make sure it's a blow out because you bloody deserve it!

We have
Sweet and sour chicken Hong Kong style
Roasted belly pork
Special fried rice
Plain chow mein
Kung po tofu
Vegetable gyozas
Pulled pork bao buns
Mini vegetable spring rolls
And usually one other main dish that varies each time.

There are 4 of us and we do order so we have leftovers

Oooh Chinese food! I wish I could join in. I have to drive passed my favourite Thai every time I got to hospital. It's torture.
I had my second AZ Covid vac today. Ive bloods and MRI and Covid swab tomorrow and then brachytherapy Mon/Thurs/Mon and then fingers crossed I'm finished for a long while.

Mentally I'm not in a great place. I'm not sure if it's hormonal or stressing about the brachytherapy or still coming to terms with my diagnosis. I just feel like I've screwed everything up and upset everyone I love most.

Oh @BadEyeBri I remember being at my lowest at the end of radiotherapy and brachytherapy scared the bejesus out of me. I cried in the car park on my way in and out of my brachytherapy planning appointment and also my first actual appointment.
It’s a tough slog of treatment for gynae cancer and you don’t even look like you have cancer.

BadEyedBri I can totally identify with the feeling of having badly let down everyone who cares about you by having the temerity to have cancer and be ill, if that's what you mean. Illogical but feels awful. I feel so bad for my husband who has been so badly short changed. He chose someone who was fit, independent, reasonably hot (?!), adventurous, sharp and witty and an equal partner in life, and now he's got a bald grumpy exhausted and haggard woman with no discernible jawline who looks like Phil Mitchell and is often too knackered to even help load the bloody dishwasher. I wouldn't want to be married to me.

I made a list today of all the things cancer has the capacity to rob you of. It is LONG. Of course, we will hopefully get back most of the things on the list, but not all. And we won't know which ones we'll not get back for some time. I find that a very stressful and depressing thought.

PNut I have the same wig on order through the NHS prescription service. I was meant to have it fitted on Tuesday but had to cancel because I felt awful and looked like Phil Mitchell and didn't think I was going to take to any wig on a 'lipstick on a pig' kind of day. But I am quite excited about it - rearranged for next week.

Hi all, hope everyone’s ok as can be 🥰

This is still all really new to me so please let me know.. basically I phoned the hospital today ahead of my appointment on Monday, to ask what the appointment is gonna entail (as I’m starting to panic the closer it arrives)
The hospital said that it’s just a consultation, but I had that with the GP hence my referral? I honestly thought that something else would be happening on that day but this just makes me worried I’m going to have to wait even more weeks to find out if it’s cancer or not?