Breast cancer aftercare

Hi Thirdparty75 welcome to the forum. Having recently had a relative in hospital some distance from me I can relate to a lot of what you are saying about costs.

I can also accept that things are far from perfect, but you sharing this is good as it brings it into the public domain and that at least lets people talk about these kinds of things which can only be good in the long run.

Have you shared this with the team at Macmillan as they are always keen to hear new things to help others if you felt able to give them a call and have a chat 08088080000.  xxx

Hi Gail. I've shared it in parts to Macmillan, especially the wig part, but my frustration is not knowing who is in charge of what, or how to contact the 'decision makers' as such. 

That said, though my cancer journey, I have found Macmillan to be helpful on support advice, where my breast care team have failed. This is just my personal experience of them, such as the prosthesis issue and being given one from them. It just wasn't suitable. 

I would be interested in how the monies from charities are divided up and what is spent on what.

Speak to www.cancerhaircare.co.uk about wigs - they are very clear that the NHS provision is supposed to match hair type for all ethnicities and want to know if that is not being supplied. 

I totally agree with you - sunhats, factor 50, coverups (wasn’t it easy to stay out of the sun this summer ️), vitamin d supplements, probiotics and stuff to help protect your nails/eyelashes for chemo, parking, petrol, button up PJs, new bras, head scarves - weight gain from steroids means new clothes too… I can afford it thankfully but I am very aware of how much I am spending on things that I don’t even want …. there’s a gap that needs addressing.  I had someone telling me how lucky I was to have the 5 year prescription exemption - seriously!  I haven’t needed any at all prescriptions for the last 5 years so it’s hardly some kind of bonus….. 

Maggie's have a financial adviser who was able to get me funding for taxis to get to hospital and back home. The lady in the hospital who does wigs and prostheses got funding for my wig and my bras and prostheses from somewhere too. The same adviser also filled out the forms for me (at a time when my mental capacity was too low to do it alone) to get government support, such as PIP and universal credit (after more than a year off work, I was no longer getting anything from my employer or any statutory sick pay,) and she was also able to get me a council tax reduction and probably some stuff I no longer remember now.

It may be worth getting in touch with a Maggie's centre near you; I believe they offer this help in all of their centres.

I appreciate what you're saying, but most of that has to be means tested, when it shouldn't be. I can be over 65, fit as a fiddle, with half a million in the bank YET,  I qualify for free state benefits. No questions asked. This is surely the wrong way round. 

I didn’t even thing about protection from the sun! I'm photosensitive from another autoimmune disease,  so these things have gone hand in hand for me over the past 16 years. There's an irony in there somewhere. The very purpose of a charity is to support the sufferer(s) and in most cases, this isn't happening to it's full potential!!.

I will look into the cancer hair website, because I was just sent to a European wig maker. Wasn't even given a choice or a voucher to go elsewhere,  so thanks for letting me know. 

Universal credit certainly is means tested. The allocation for taxi may well have been, I don't quite remember now, may be worth checking with Maggie's. PIP, as far as I am aware, isn't means tested, and neither  were the wig and prostheses allocations. 

I do, however, get what you are saying about the situation in general, which brings to mind other ills in the system, but that's for another time.