Hi all
We’ve been on a long journey as it seems many of you have too. Mums cancer started as a rare form of eye cancer which resulted in so many infections after surgery, then cells jumped and went to bones, liver, lymph and stomach.
We administered chemo drops ourselves at home initially which was horrendous. She’s then had radiotherapy, immunotherapy and lastly intravenous chemo. She now has her eye sewn together. She also has a pacemaker which means she has to have a cardio specialist available for any MRI scans and has to stop certain heart medications when she has blood transfusions.
4 years, 6 hospitals and a serious amount of repeating her various conditions to hospitals because they ‘don’t talk to one another’ one hospital had results from months ago that meant a huge amount of time in hospital repeating tests and scans she’d had elsewhere.
She is the most stoic women who’ll always say she feels ok which drives me mad!!!!!! we’re getting really grumpy with eachother.
Anyone in the same boat?
Hi Cathersb
Even departments in the same hospital seem to have more than enough difficulty talking to each other let alone when things are spread between hospitals. We have before now been sent simultaneous appointments in two different hospitals - sometimes it seems like the idea of a national health service might seem like it would be a good idea.
As carers many on here will recognize the role we have as appointment secretary.
I always know Janice is unwell if she actually wants to go to the hospital and fortunately we have a really good GP and that is really helpful.
One thing we found is that we now talk more about both our feelings without the other feeling the need that the other is being asked to fix the issue. It is really good to be able to share on here too - our life is more than difficult enough without having an option to vent somewhere and talk to people who understand because we share so much.
<<hugs>>
Steve
