Hiya @pinklilli3s I did my diagnostics and surgery privately then switched back to nhs for chemo and all that follows. I don’t have private health care but paid for it out of money I’d saved from my job (I got a promotion a couple of years back and randomly squirrelled the extra away for a rainy day). I got freaked out by nhs wait lists in Manchester so cornered my nhs surgeon and got him to agree to do first bit privately. Not cheap but took my anxiety away, and was fortunate to have cash available at that time.
Don’t worry if you need to switch back to nhs - both are great and in my experience the nhs delays were more with diagnostics at start. Once it gets going you are ok. Plus w nhs you get more wrap around holistic care. So there are pros and cons to both. Xxxx
@plum1 There is a long list of suppliers for wigs and scarves here. Where to find hats, wigs and scarves | Coping with cancer | Cancer Research UK. I got mine from simplywigs. Had good reviews and arrived quickly. It is synthetic but looks pretty good. I paid just over £100. So am pretty happy for the price. Did ask the nurse at the hospital if they had a wig person but they had retired last week! So I decided to go it alone as I am not eligible for any money off. Good luck with your search and hope you find something you don’t mind. I think finding something we like might be asking too much at this stage.
The paperwork they gave me mentioned it but they mainly stressed back pain and flushed cheeks, which can’t be seen as I wear a mask. I have other health issues and want to protect myself as many people coughing even on chemo day unit. More looking into it it sounds that they generally give you medication before and wondering why they didn’t with me as they know I have other allergies and can be reactive.
@pinklilli3s i have been with NHS from the start. The diagnostics and tests took 4/5 weeks several times as I had two biopsies but once they were in the surgery was booked for the next week. Bit of delay to start chemo as issue with size and needed MRI to determine size. The breast care nurses attached to the breast surgeon have kept in touch with me even though I’m now under oncology. Have 24/7 helpline with oncology but only to deal with issues nothing for wellbeing which is a shame. But I have phone breast care now nurse who were good with that and had more time than nurses working in clinics. Don’t worry about swapping they all do their best🥰
Hi In Wales you get £100 voucher towards a wig but have a limited number of their suppliers. I had a bob and cut it short into pixie cut as advised cold cap works better with less hair.
The chap I saw was delightful I had a synthetic pixie cut and spent total £150 so £50 for me to pay. It was a high quality that had skin coloured fabric and allowed the hair to be parted either way. Googling the Rene of Paris ranges I found it was being sold online for £250. He also agreed to shave head for free and first cut after my hair grows back.
I have been cold capping and it’s only shedding at the moment, but have concerns that it was hiding some of the allergic reaction because I was colder. Also read the chemo doesn’t get to the scalp which can pose a possible risk of recurrence of the scalp, so will be checking with the team.
Hi Mikki 90, sorry it’s happening with losing your hair. Me too, started happening on day 17 and now so much coming out. I didn’t cold cap either. I’m trying to hold onto some hair till I get my wig next week but think I will be lucky if it lasts that long …I’d rather shave it off but not before I have a wig option…
Hello loves, sounds like a few of you need cheering up… got a suggestion. I spotted an amazing charity on the internet run by breast cancer survivor called Little Lifts. You apply and get sent a box of thoughtful gifts for free to see you through chemotherapy!
They’re based in the East of England but you can apply for yourself (you just need to share a pic of a letter from your oncologist confirming chemo). I was feeling a bit gloomy on Weds, ahead of chemo yesterday. The box of free stuff arrived today! Will include pic below but can’t really do it justice, it’s full of thoughtful stuff tailored for us. Eye masks, chocolate, extra seasoning for cooking, lip balm, moisturiser, bamboo toothbrush, puzzle book and more. Strong recommendations from me. Felt like getting a hug. It’s at https://www.littlelifts.org.uk/
Hi ladies
I had my 2nd chemotherapy yesterday and ashamed to say I only tolerated the cold cap for 10 minutes before the pressure in my head was too much, I sat sobbing and asked the nurse to remove it
It was the same nurse I had on the first round and he said because I’d not had a real chin strap as none were available - they’d improvised - I’d not had it tight enough
He loosened it but I still couldn’t bare it
I’ve 2 children a 16 and 13 year old and I know the younger one is finding this all really hard
I had mastectomy and reconstruction in June and hoped I’d not need chemotherapy
Anyway I finished my session but the sense of guilt is still there, plus a banging headache still
My hair loss had already begun , a friend cut it into a shorter bob for me and I’ve got a wig and a couple of hats so am ready to embrace it
Thanks for all sharing your journeys it can feel a long and lonely road somedays xxx
How lovely, I was given a similar bag by Ladies Fighting Breast Cancer which operates within 70 miles of Birmingham QE hospital so if anyone is within this do ask for yours or look them up on Fbk
Hi dear, I I received a wig but it’s parted on the other side and has bangs, which doesn’t look good on me, but I try to hold the bangs to one side with clips. It’s not bad. I’m waiting for an order from a UK site but they are synthetic, they look good now, let’s see when I receive it and come back with a feedback. If you hit the Search button here on the forum, there is a post with wigs and a link to sites where you can buy, there are also from natural hair. I hope you are well, I will be back.Take care
Hi @Craftyj
I am happy your second chemo went better, the headache I had to, and my hair started falling immediately next day after second chemo. But I’m honestly relieved now that I cut it, my scalp hurt and it felt like someone was pulling my hair.I have kids at the same ages as yours, the older one doesn’t seem affected, he’s more independent, we don’t see each other much😁 he takes me out of his room, the middle one is 12 and is very sensitive but I talked to him and I showed him and explained everything about me, he is careful with me but I’m lucky that he spends a lot of time with his younger sister she’s 8, so he has a job and I’m more free. I understand you so much it’s hard and you’re right it’s hard for children, be positive and think that you’ve come this far and that we can continue until the treatment is over, day after day don’t think too far. Hopefully you are doing better these days, hang out and here on the forum you can find warmth and comfort.
Morning @Craftyj Sorry to hear what a hard time you had at your second chemo. Please don’t feel ashamed or guilty. You are doing your best and that’s all you can do. Its early days for us all in changing and losing hair. I sort of forgot yesterday a couple of times I’d cut my hair but then got a glance in a mirror and got quite a surprise. My prediction is we’ll all be rocking our new looks by Christmas. My natural habitat is blending in so being forced to stand out is a challenge in of itself, so I was quite proud just for going out for a walk in one of my new headscarves with my partner. Little wins.
Hello @Craftyj I’m so sorry you had a hard time yesterday love. The cold cap is brutal, I had my second chemo on Thursday and felt like I was going to puke and faint when they turned it on. Such a strange sensation, and it must be awful if the kit is broken.
I know it’s easy to say, but you have nothing to feel guilty for. Like us all you are doing everything in your power to work through a shit situation. I’m bad for guilt too, did I get it at 44 cos I didn’t exercise enough, drunk too much (though actually I wasn’t a massive boozer)? My husband is a cancer researcher and has helped me see it’s just bad luck. Everyone has dodgy cells roaming about, and in some people they go wrong. But lab rats like my husband Dan are working to find solutions! We’re the survival stats, not the ones on websites from years ago.
Sending love to @naughty_boob too, I know you’ve had a hard time love the last week.
@Camy_Radika the kid thing is hard isn’t it? My littlest (7) is curled up in bed next to me now. Trying to make things fun and “normal” for them while watching like a hawk. I worry how they’ll be if I start feeling worse but trying not to think too far ahead. Xxxxx
Hello lovely ladies and awesome members of a club we hoped not to join. So sorry lots of us are having a hard time. The cold cap sounds very uncomfortable but well done to all of you who have even tried it.
Annemanc, great your hubby is finding new ways to fight against this disease. Thank you very much for the website tip for goodies.
A nice thing happened on chemo day in hospital this time, a beautician was offering mani and pedi so although my hair is disappearing fast (silk pillowcase more comfy though), nails look good!
Hoping to go to watch my son play footie this morning - taking a chair and it’s sunny thankfully. Favourite time of the week.
Hi Craftyj, sorry to hear you also needed a mastectomy. Great you got recon at the same time. I have not had recon so far. Did you have a sentinel node biopsy or clearance? I had SNB and still have a lot of discomfort in the underarm area and chest area. It takes a lot of getting over. My surgery was at the end of July.
Morning dear, I find myself in your post, lymph nodes removed on 6 July, more than 20 and 9 come back with cancer cells,
I still feel a tightness under my arm, and my chest also feels discomfort when palpated. Last meeting with the physiotherapist went well and said that it is normal to still feel like this, it was recommended to continue the exercises and to use an elastic band to strengthen the muscles of the hand.I’m hoping that recovery will be easier from now on, although to be honest since I started chemotherapy I no longer have the daily hand exercise routine.
All my best, big hug to everyone
don’t forget to try your local Macmillan at your trust for pre loved wigs also there are little shops in towns that have ranges of wigs and hair extensions alongside makeup and shampoos and conditioners not sure where you are but most large towns/cities have them little independent shops and luvyababes does a good range (not fancy dress ones) so might be worth a look too Shi xx
I may have to switch for operation and radiotherapy, provided all goes well with chemo
I spotted an amazing charity on the internet run by breast cancer survivor called Little Lifts. You apply and get sent a box of thoughtful gifts for free to see you through chemotherapy!
to everyone
