Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Sending supportive vibes to all. I echo @HauntedDishcloth - I went to a lookgoodfeel better session which helped me massively- the first one they’re run face to face since covid. It was lovely to spend time with the other women there all at various stages three baldies and three with hair still , and play with makeup, although I don’t use much. And excellent goody bag. Their on line stuff including gentle exercise is v good too.

I also went to a LGFB workshop as I was interested in it for the skincare, though I don't wear make up. The goodie bag was amazing ... if you like that sort of stuff. My DD had it all, and had had lots of compliments on her lips using the Chanel lip gloss. Well, it's been tough on her too so I think she deserves it!

Sorry you're suffering @TopOfTheCliff - I've only got one more chemo to go but not quite sure it's worth it for me, but then I was kind of borderline anyway. They recommended 4-6 and I've had 5, and have seen research that 8 is no better than 5, and I'm concerned that the risks are now outweighing the benefits. Such a difficult decision, and weird in some ways that six feels harder than 1-5.

@TopOfTheCliff i hear you on the joint dread.

I have one more cycle left now, next week. I am going to refuse the Abraxane (pax) and just have the carbo. The benefit for my low grade was negligible anyway and the taxol only made up a very small fraction of the little there is. I don’t think the side effects warrant this last session of it for me. It’s my little ones birthday 10 days later and this last session took me a good 10 days to get over. Such hard choices, feels like I’m taking a risk where in reality I suspect the chance of benefit is somewhere below 1% so really almost irrelevant in the grand scheme!

Hi Top
Hope your chemo tomorrow goes as well and as painlessly as possible. One step closer.
I have another appt with the radiology dept tomorrow, for them to decide if the hematoma is settled enough for them to do the CT planning scan, so fingers crossed. A lovely friend (also retired GP) came to see me yesterday, and listened to my moaning. She has had BC and has lots of knowledge which is really useful. Basically I have to ask for the options, the pros and cons of each, and from that information I can make decisions if necessary.
Wishing everyone well - and wondering where I can get my Chanel lip gloss from!!

My friends took me out today to Ham hotel for champagne lordy two glasses and we were all tipsy. Then we went to Fortnum and Masons not good after a drink but we kept the spending down as it was reduction time so bought some lovely buts for the freezer. I kept wondering if it will be my last xmas. Everyone is telling me to find my fighting spirit or else it will eat me up. One of the consultants said the fact that I look so well and havent lost weight is a good sign. I dont know if she was just been nice. Scan is on Wednesday. I dont know how soon the meeting will be after. Im thinking of asking my boss to come with me as shes quite assertive and doctors listen to her. She had breast cancer herself and a brain tumour so she will know what shes talking about. I dont know if this is overstepping though.

Good luck top!

@TopOfTheCliff genetic testing - I used a company called Check 4 Cancer.

Best of luck with your treatment tomorrow x

Glad your friends are spoiling you @EachandEveryone . Sometimes it takes a shock to make us realise how much people mean to us. Good luck for the scan.

Hello everybody - and sending positive thoughts for your chemo today, @TopOfTheCliff . I haven't posted for a while - last time I was miserable about having nothing to look forward to, in the aftermath of my first chemo, and thank you to everyone who posted suggestions then. I feel physically much better now, 2 weeks on, and more positive too. I am ordering guide books to potential future holiday destinations to cheer myself up.

I have a practical question - I am attempting to keep a bit of work going during chemo (I'm freelance). It was hopeless in week 1, and I hardly got anything done, but it's fine now. But - my hair is starting to fall out, and I don't have a wig yet. I have an appointment to get one, but suspect that my hair will go before I get it, and in the meantime I'm facilitating an online event, with people I don't know there. What should I do? I don't want to tell people as it will be a distraction, but if I wear a hat, will that just look weird and unprofessional? Interested to know if anyone else has found a good solution. (And apologies if that's a bit trivial - I know it doesn't matter in the grand scheme of things.)

Hi @dotty2 I am freelance too, and I have been working alongside chemo. I cold capped, and I have been wearing a wig more recently as my hair has thinned, particularly at the back, but I haven't completely lost my hair. I think if it was just for online I would be tempted to just get a wig cheaply and quickly from Amazon. I got my wig through Macmillan. I did get it on the actual day that I went for the appointment. I didn't need to wait, I wonder if you could bring the appointment forward?

I do online workshops and I have also been wearing a wide hairband around the front of my wig, just from Amazon, which I started to wear when my hair started to thin a little bit, but actually I feel much more secure in the wig with a headband on, and I feel that takes the attention away from the very front of my hair, so people might see that you've got a hair/wig coming out of the back so it looks like you've got hair, but not be able to see your wig in detail at the front if it's not quite what you wanted.

Thanks @SierraSapphire . Good tips - I can't bring the appointment forward as my voucher has to be used at one local centre and they only open a couple of days a week. But I could get a cheap one, or the headband idea might work if I've still got a bit of hair. I will order one now and experiment in preparation - good thinking.

@dotty2 I have a selection of Haircube wigs from Amazon. They are really good, they do get a bit rough and tangley after a few months but for £20ish they’ve been brilliant. I usually cut the fringe to be how my fringe was and people say they can’t even tell it’s not my hair. The one is used my voucher for has a better parting line but is a style that ages me and I haven’t worn it. The ones without a fringe do tend to look a bit fake at the hairline and I’m not good enough ti work out how to style it to stop that!

Thank you @AGreatUsername . I have a short, pixie type hair cut, and there seem to be plenty in that kind of style. I had assumed the cheap ones would be no use at all - but it sounds like they should be fine for occasional use, maybe with a headband. I will stand by for an emergency purchase if needs be. I was trying to not shop at Amazon before I got cancer, but being able to buy so much stuff without any hassle has made life massively easier, I have to say.

Hi, I am absolutely terrified. About 6 weeks ago it started hurting to pee. It got worse and I could feel something down there so got an apt to see a nurse at my local GP practice. She said it was "a cut" and told me it would heal. 2 weeks later it was still painful so I went back and another nurse took one look and referred me under the 2 week wait. My apt was on Friday and the cancer specialist looked at it and straight away said it wasn't right and was suspicious.

He has done a biopsy and now I have to wait but he knows his stuff so I am assuming the worst. I am, apparently, quite young (44) to have vulvar cancer.

I have 3 kids and the youngest are 6 year old twins. I am so scared that I won't be around for them as the consultant was already talking about checking lymph nodes and that the area is quite near my urethra which could be problematic.

My mind already has me dead and buried. I don't know how to cope with this as I have severe health anxiety anyway. Thanks for listening.

You poor thing, no wonder you're worried and stressed. Easy to say I know, but you are in a better place that you were a couple of weeks ago, as it is now being dealt with, and the best brains in this field will be looking at how they can help you.

I hope you don't have to wait too long until a plan comes together, to make sure that you get the best outcome possible.

That does sound tough, Twins, and what a shock to have gone from 'probably a cut' to 'suspicious' so quickly. Suspicious doesn't definitely mean it is cancer, of course. (And the reverse is true - I was initially told my breast lump was 'not immediately concerning' when it was examined/biopsied.) But if it is, you will feel more in control when you know what the plan is, and there will be lovely people here and on other forums to help hold your hand and guide you through it all.

@HardyHarvey how are you? I haven’t seen you here for a little while so hoping you’re doing okay.

@Twinsandone Welcome to the thread no one wants to be on. I have ovarian cancer and young children, but I think one of our ladies has a very similar cancer to yours. The initial shock is horrible, I too wrote myself off. I then spent months feeling like I was planning to both die and live. I still feel a little like that 6 months on, but those days get less. For now. There’s plenty of support here for you but if you’re anxious I highly recommend calling Macmillan, they’re wonderful.

Calling@MrsPnut If you've got a moment...
Was it vulval or vaginal cancer that was your area of expertise? Somewhere down there? Please see Twinsanddone's post above.

@Twinsandone, I had early stage OC but I also have what’s known as Vulval Lichen Sclerosis. Having it increases my risk of getting vulval cancer but it’s kept an eye on and what I wanted to say is that I often have cuts on my lady bits. Sometimes I feel as if I’ve rubbed myself red raw with a Brillo pad there’s so many and at other times it can be just the one stubborn bugger. Anyway I just wanted to say that ‘suspicious’ is a word Drs use if anything doesn’t look absolutely normal. It doesn’t have to mean the worst as there are quite a few vulval conditions that can cause lacerations.

All the best.

@Twinsandone I was diagnosed with vaginal cancer 2 years ago and had treatment of chemorads and brachytherapy. I have been left with an ulcer that won’t heal and I have to use lidocaine to make life bearable. You could ask for some from the practice nurse just to calm the pain whilst you are waiting.

There is someone else that has had vulval cancer, let me think about who it was.

It was @toofaroutallmylife that had vulval cancer and a skin graft.

Welcome @Twinsandone to the friendliest thread. Let’s hope your stay is short here! The first rule is DONT GOOGLE but just use the NHS website or Macmillan if you must. We understand the terror but it really helps if you can keep busy and distract yourself while you wait. Get those Christmas presents sorted and wrapped and cards written. Try not to think if you can, and maybe use a Calm app or similar to control anxiety. Once you know whether it’s just Lichen Sclerosus like @MrsThimbles says or something malignant you will be in a much better place. Meanwhile come here and rant as much as you like.

@dotty2 glad you are feeling better. I went in for dose 6 today feeling scared and fed up but decided I don’t have to be brave and positive I just have to turn up. The hardest bit was finding a parking space at the hospital. All went smoothly and I came home with a pack of gabapentin to float away with for a week which will be interesting. I kept the ice gloves and socks very cold with a spare set of ice packs at half time. I have no idea whether it is working but it won’t do any harm. I just have two rounds to go so I’m beginning to glimpse the light at the end of the tunnel. I have a mammogram and a surgical appointment coming up too. Just plodding along here.

Thanks @PurpleBananas22 I had a look at the website and it’s £1400 for a breast cancer gene test 😳 Food for thought though.

Best wishes to all.
Top

Well done @MrsPnut - yes it was me that had vulval cancer. I’ve changed user names since then, but the tagging still works.

Hello @Twinsandone - I’m so sorry you find yourself on this thread. I was diagnosed with vulval cancer at the age of 51, and I’m coming up to the 4th anniversary of my diagnosis (which may be some reassurance!). I had vulval melanoma, which is a rarer form of vulval cancer, and I had put off seeing a Gp about it for months. So well done for getting it looked at quickly.

You are in the hardest stage at the moment, because there is so much uncertainty- whatever it is, when you are given a plan things are much easier to cope with.

Google is not your friend! There is a vulval cancer forum on MacMillan, and the Eve Appeal has a very good website on the gynae cancers.

These days I try to put my cancer to the back of my mind as much as possible, although I’m very carefully monitored and have just had some minor surgery to remove some skin that had changed again. In strange timing, I’m having my 6 monthly scans tomorrow so I’m finding it harder to ignore!

Very happy to answer any questions you may have, either now or as you get a clearer picture of what’s happening.

Hi,
I was on this wonderful forum a few weeks back, after having a mri scan on my liver to rule out cancer.
Hope it ok, but I'm on here for a rant.
After week 2 of waiting I rang the secretary to see where I was up to as it was an urgent appointment with a meeting of specialists scheduled.
Almost 8 weeks now and my mri hasn't even been looked at by the radiographers.
Hence no movement as my consultant holds the meeting after the results are in...
I have phoned the secretary once a week as she asked.
Bless her, she's doing what she can to speed things up.
I was hoping to be writting with more of an update.
As it is I feel lost in the system...

I would call the PALS service at your hospital and ask them to help, they can contact the department and advocate for you.