Hiya, it’s taken me a long time to actually post on this. I have been reading since early
February and hadn’t felt such a need to until now.
My mum was diagnosed with BC in 2011, she had a double mastectomy, 3 lymph nodes removed and a year of chemo (including Herceptin). That’s all I really know about it. She was never ill, it never affected our lives and it was almost over before it began. Apart from her hair she probably never needed to tell us (my brothers and I) about it and we wouldn’t have guessed.
Mum went into hospital on Feb 17 for emergency back surgery (she told us she had a compression on her spine from a fall when we were skiing at Christmas) and last Friday (23 may) she came out with BC mets on her brain and spine.
Mum can’t get up or walk by herself, she can’t really speak, she can’t swallow or blink so her eyes dried out so much her corneas may be permanently damaged. Basically she is totally reliant on us.
Although she hasn’t been left alone in hospital at all since 2 weeks after she went in, including nights, having her at home was a scary prospect. Especially as she was refusing the offer of carers and we haven’t been allowed to tell anyone that she is ill.
She and my Dad have moved into my house with my boyfriend, dogs and I. So far it is going much better than I expected, and it is so nice to be at home and not have to travel 50 miles each way to the hospital every day to be with her whilst Dad went to work.
However, it is at times like now, when it is nighttime and everyone is asleep but I can hear Mum coughing away downstairs that I get to thinking.
I don’t know how I am supposed to feel. I think it would be easier if I had a timescale. If I knew she was going to get better then I could be patient and hopeful. Unfortunately google means that perhaps I have read too much of the negative stuff, but I haven’t read anything that makes me see she is going to get better and I could come to terms with that if I knew how long I had to do so.
I have given up my entire life to be almost her sole Carer, and whilst I couldn’t live with myself if it was any different, I don’t know how long I can do it without turning resentful, which is the last thing I want to happen.
I guess what I am asking is if anyone has any information they could share that might give me an indication of time. Mum has her head buried so deep in the sand and refuses to speak about it, has instructed the Drs not to speak about it and even when Dad has tried they are reluctant to tell us anything concrete incase they get it wrong. It’s all so frustrating and so utterly crap!
I was so blasé about cancer until this year even though my Grandma is also quickly losing her battle. I take it all back and now truly understand what people mean when they talk about their battles.
Thanks for listening (reading), I hope to hear from some of you as I cannot talk to anyone else about this at the moment.
Love,
S
Hi SJG410
Welcome to the BCC discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site, who I am sure will be along soon to offer that support. In the meantime could I suggest that you give our helpline team a ring, lines open at 9am today until 5pm, and have a chat with our staff who are here to support you and your family through this. Calls are free, 0808 800 6000.
Take care,
Jo, Moderator
Hi S
I am so sorry to hear about your mum, it’s a nightmare and no amount of positive thinking helps in the night time when you are awake and worrying,
my mother had leukaemia, like you I changed my life to spend my time with her, I gave up my promotion and flat to move back to my home town so I could be close to home.
I have never regretted my decision but it really took it’s toll on me and my life, I suffered from severe depression for a while. I think one problem you have is that you don’t really know what’s going on. If your mother has instructed doctors to withhold information from your family then they have no choice. However you need help for yourself. My mother’s doctors told us in the end that it would be a few weeks at one point but they were wrong and we had her for months.
The macmillan nurses can help with counseling, or maybe your GP could arrange for you to speak to someone. I think you need some support away from the situation, just for yourself, you are trying to stay strong for your family but you need to keep a little something back for yourself.
I hope you get the help and support you need.
take care
Keeks