Hi,I'm new here and was diagnosed on the 3rd July.I would like to hear from anyone with this rarer type of bladder cancer.
I had a CT scan yesterday but am not due to see the surgeon till the end of next month.I was told on diagnosis that the bladder would have to be removed.The operation sounds very daunting.I am usually sole carer for my elderly mother but she is currently in a local care home.I feel very guilty for not being well enough to look after her, as I know she just wants to come home.I am trying to come up with an alternative plan for her care but have had no luck so far.
Best wishes to you all
Hi winkers60 and welcome to the community, although sorry you find yourself here. It must be extra hard for you with the situation with your mother. As you know squamous cell, is a rarer type of bladder cancer. I have no personal experience of it, but we have had members here in the past who seem to have come through it ok. If it comes to having your bladder removed, we have people here with experience of it and someone may be along to share. As regards your mother, you may like to look in on the Carers Only Group . There you will find others looking after loved ones and may be able to offer some advice. You may also find it helpful to ring the free helpline on 0808 808 0000 who will be able to advise on what help, financial and practical, your mother may be entitled to. Best wishes.
Best wishes to All, rily. What is a Community Champion ?
Thank you so much for this helpful information.My situation is harder with the worry over my mother.We don't have lots of friends and family to help out as they all live miles away.My sister has been very supportive but works full time.My partner is brilliant too, but he is disabled with a rare muscular disease.A Macmillan support worker is phoning on Thursday so I'm sure that will be of help too.Best wishes Jane
Hello Winkers60. Sounds good that you have a MacMillan support worker call booked. At the risk of repeating something you may be already well aware of. have you registered with your local Carers Association? They tend to have the name of the county where you live in the name. Sadly what they offer varies widely, but any support you can get would be good, some are brilliant. There are all sorts of things, chat groups, free outings, phone support lines, priority at your GP....and it is fine for your partner to register too as your carer despite the fact that some of the time you may be caring for him as well as your Mum.
Our Carers Association provides an emergency card you can carry in your purse. You fill in a form giving details of who you care for, on the card they print a unique reference number and a phone number. Then if you meet with an accident etc emergency services would call the phone number, give the reference number, and appropriate emergency care can be set up for, in this case your partner, and or Mum if she comes home. Peace of mind. I also use mine to claim 2 for 1 entry at the swimming pool and various discounts, all helps if you aren't rich.
All the best,
Thank you so much Denby,I shall find out about my local group and join.It is just mum & I at home usually.She was fit and well until a brain haemorrhage in 2004.She has been stuck in the care home since May as I had to have the cystoscopies/turbt.I was on carers benefit but that has been suspended for the time being.
I just want to sort something out for mum so she can come home,even if I cannot care for her initially.I think it will take some time to recover if I do have a cystectomy.
I am very grateful for your help.
Just pleased to be useful Jane. If you haven't already seen it, Macmillan offer you a booklet by post or downloadable, free just call them, about " invasive and advanced bladder cancer," which give lots of lowdown on the surgery should you need it. There's also a stoma discussion group.
Hopefully the carers' group can give you their experience of good/less-good care agencies in your area etc to help you get Mum home with the minimum of difficulties.[We had to sack the agency recommended by the hosp when my mum came home, due to unreliability and unkindness, though that was back in 2008]. MacMillan also offer financial guidance.
I think all on here would agree you're wise to be realistic that recovery will take some time.
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