My daughter has just been diagnosed with breast cancer, and starts her chemo next week. I am finding it all very upsetting, but the oncology people have been marvellous…
My daughter has learning difficulties, so trying to get her to understand has been hard, and hardest is knowing how sick she will feel with the chemo.
I am trying to get her sorted with head gear for when she loses her hair, but an having not much luck at finding places to get some
Hi camac sorry to hear all this must be very difficult for you, my mum struggles with my dx. We went to a maggies centre this morning before i start chemo etc and my big dread is losing my hair they were brill there and they do sessions on losing hair and what to wear and wigs etc they even have hairdressers come in to cut your wig. Any near you if so well worth a try. Also i have heard but im not that far down line yet that bc nurse can help with all that to and that vouchers are available to go towards price of wig. Not sure if any of this any help, good luck x
Hi camac, very different situation, I have the cancer but I have twin boys with autism. Found it very difficult telling them particularly one who is less able.
if you aren’t sure about wigs, there are ready made bandanas and hats at www.annabandana which may suit particularly if she gets itchy head or too hot in summer from the wig.
also there is a book available as a free download call mummy’s lump which is aimed at little ones so i I re’wrote it for boys to be more agappropriate. It has pictures showing the hair loss, the wig and the needing to rest bit. Might be useful depending on your daughters abilities if you can adapt it.
must be very worrying for you.
best wishes
NicJ xx
There is a link on this site if you search for mummy’s lump.
NicJ xxx
Hi Carmac
So sorry to hear of your daughter’s diagnosis. It’s difficult enough to deal with having breast cancer, but for someone with learning difficulties it must be even more scary.
May I suggest that you join one of the groups in the ‘undergoing treatment for cancer: chemotherapy’ so you will be able to read all the messages of support, advice, tips etc. on her behalf, to help you help her with the treatment. I never had any sickness with chemo (thankfully) but if she does, they will give her anti-sickness drugs to take.
Like Lols, I find the Maggies Centre a real help, if you have a local one. I bought my chemo hats from there. If you’re not sure where your closest Maggies is, here is a link to Maggies Online Centre where they have a link with all the centres on.
maggiescentres.org/maggies/maggiescentres/home/home.html
Very Best Wishes to both of you.
Poemsgalore xx
Hello
Here is a link to the publication ‘Mummy’s Lump’ if anyone wants to look have a look at it.
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/mummys-lump-bcc164
Best wishes
June, moderator
I am really sorry to hear about your daughter’s diagnosis. It must be very hard for her. Ask whether the hospital treating her has a learning disability nurse or if they can put you in touch with one who can help you to support her through treatment. There may also be nurses in the chemo unit who have had specialist training in treating patients with learning disabilities.
Maggies centres, Macmillan and other local cancer charities may be able to support her with counselling and talking therapies if you think that would help. They can also give advice on hair loss. Maggies have Talking Heads groups, BCC do the Headstrong course for help with hair loss and advice on headwear. Most of my headwear was from Ebay or local shops and I bought a couple of scarfs at a Headstrong session. Your chemo unit may give out scarfs and turbans so do check with nurses there before buying loads. There are some really pretty headcoverings. I found the little cotton elasticated caps (bought from Ebay) more comfortable than anything else. She will be given a NHS prescription for a wig and there are some lovely ones. Ask for recommendations on local suppliers.
My son has learning difficulties and it was hard to explain cancer to him. He couldn’t understand why I was more ill during treatment and still cannot grasp that I am not ‘better’ now (I have metastatic disease). He was also really freaked out by my hair loss but couldn’t explain why it frightened him so much. I just had to make sure he never saw me without my wig.
I wish you both well, maybe start a thread on the forums here for her, you can post more questions as they arise and it will keep all the good wishes and tips in one place.
Dear Camac,
To coin a phrase that I have seen on the site “I didn’t want to read and run”. Thinking of you. As a daughter and a mother myself I can’t immagine what you are going through. Your post made me be more mindful of what my mother must be going through. Your situation is more complex, but what your daughter will benefit from the most is your love and support at this time. She clearly has that from you in abundance.
As an aside, I found the ‘mummys lump’ download the singularly most helpful thing in this journey so far. Take care and thinking of both you and your daughter.
Deborah
Camac, so sorry to read of your daughter’s diagnosis. I don’t contribute to new threads very much these days, but was another who could not ‘read and run’. I did a bit of googling (shhh, do’t tell anyone) and spotted this on the MacMillan site which may be helpful: be.macmillan - Stock updates UNfortnately you can’t read it online, but your local macMillan people should be able to get a copy for you.
BCC have a booklet on breast health for people with learning disabilities, buit unfortunately it doesn’t include treatment. You can see it here http://www2.breastcancercare.org.uk/publications/breast-health/your-breasts-your-health-supporting-people-learning-disabilities-bcc163
I’m not sure if any of this helps much, but I do hope you find the support you need, and that your daughter’s treatment proceeds smooth;ly with a good outcome.
EDIT I have also found this one from Plymouth NHS trust http://www.learningdisabilitycancer.org.uk/pages/cancer\_journey\_pack.htm
Hi Camac
Could I suggest you give our helpline team here a ring and have a chat, I’m sure they’ll be able to help you in some way. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
Take care,
Jo, Facilitator.
Hi Camac
sorry to hear about your daughters breast cancer & it must be very scary for her & you. I was treated in Liverpool at the Linda McCartney centre & attended a brilliant headstrong session there. It was one to one & my friend also came with me. I tried on dozens of different scarves to see which suited me & a volunteer wrote down all the website addresses & models for me to purchase later. It made a very difficult experience a little easier. If you can get to Liverpool I can’t praise it enough ( ask for Doreen she was wonderful).
hope that helps
S x
Hi Camac
They have the Headstrong sessions at Clatterbridge as well and the ladies I saw were lovely and really helpful. They also sell scarves and other headwear at cheaper prices. Ask when you go on Tuesday they should be able to book you an appointment.
I have nothing but praise for the Onc unit at Clatterbridge everyone is so nice and caring your daughter and yourself will be well looked after
Best Wishes
Jill xxx