My mother has had a terrible experience waiting for tests, results and treatment. Over 3 months of waiting and have to chase up (and cry) on the phone, nothing had been started. We were told the end of May that her Ct scan at the start of April showed an 8cm tumour and it was Small Cell lung cancer. We were told a referral would be made to the oncology team. Only when being rushed in to a minor injuries unit as she was no longer able to breathe as the tumour was restricting her airway we were lucky with the oncall consultant who got further tests and results back within 24hrs and got her first round of chemo started. That was last week. Since her breathing has improved massively but now she has no strength and can't walk up stairs and was even stuck on her toilet. We've had no support, both Macmillan nurses in our area are off on sick. She's lost over a stone in a week and her muscles have atrophied. I'm not sure if this is normal or reversible. Is it the cancer it the chemo? Who is supposed to coordinate her care? Is it the GP? She hasn't got an oncology appointment for over 2 weeks. It's so bloody frustrating and lonely.
Hi Haf75
In terms of care at home that responsibility falls to her local authority, she would need a needs assessment and hopefully her GP should be able to chase that up. As a carer you are also entitled to a carers assessment so ensure you have the support you need too. There is a NHS page on this process here.
I certainly know the uncertainty over cancer or chemo; when my wife was on chemo we had a phone number to call if we had any questions and on a number of occasions Janice ended up being admitted do you have anything like that? If you cannot find any other route it may be worthwhile getting in touch with the PALS department at the hospital - they can be very good at getting answers.
Thank you for asking on here though - you are right many people find this process both frustrating and lonely but here we find friends who simply understand without question - it is hard but together we make a great team.
<<hugs>>
Steve
