I'm really struggling to cope with everything. I've list 7lbs in 6 days cant eat sleep GP given me sleeping pills & diazepam.
I took 4 days respite & with 12 hrs of being away husband had severe diarreah & nausea. Didnt ring numbers I left. I ended up spending the 4 days away in contact with the marsden.
He ended up in urgent care on IV for fluids & steroids as keytruda which stopped in August, as not worked had caused this imflammorory colitis. But he left himself 3 days hoping it would stop, instead of phoning numbers I left.
I spoke to a nurse yesterday & said he was extremely ill when admitted & could have died left much longer.as all bloods had dropped dehydrated BP severly low etc
Hes on oral prenislone & other meds to raise calcium & other things ( sorry dont know what, as not been here).
Hes having to go to Chelsea Marsden on 24th Oct for sidmoudoscopy I presume to check inside of bowel.
Chemo ( carbo/premex) due 17th Oct & dont know if will go ahead.
He saw a doctor ( presume radiotherapy) for 5 x 15 mins session on lilac bone met not sure about L5 bone met, again husband doesnt take in or understand whats being said.
Before I left Saturday eveeything was normal, but obviously it wasnt but he didnt tell me, but then I think I would have noticed 20/30 trips to loo per day! Appetite was good in fact he looked really well knee pain gone swelling etc just felt a bit tired & nauseas, but going out in morn & eating, otherwise I would never have gone away.
Now theres umpteen appointments no idea what for, no idea about chemo literally do not kniw whats going on.
Cant find scan results only blood test results, which mean nothing.
I cant understand app useless dont want it, but apparently I set it up! Impossible as I was onto helpdesk downloading it.
I dontvwant app, I want normal appointment letters or calls for my diary. Literally have no idea what I'm doing. No food is making me more confused but cant eat, cant even stmoach tea.
Husband is totally useless with seeing docs doesnt lusten understand blanks out. I've told Marsden umpteen times hes always been the same & gets anxiety, relies on me for everything medical, but I'm now on my knees with stress confusion not knowing whats going on & had enough.
All I want is a doctor to call & explain scans why radiitherapy as bone mets spread, will chemo carry on & will these side affects keep happening. I havent the strengty to cope with anymore side effects, I can just about stand.
I dread to think how much weight hes lost in a week, hes likea bone & too scared to weigh himself.
So no idea of what to do I have no help whatsoever, but need it as cant take anymore. I know its cancer & scary but hes caused all this by laying in bed " hoping it would go away" instead hes almost killed himself by letting things get to point so bad ended in urgent care & for his nurse to say is he safe to be left & after this event, my answer is no.
He could go on for months years I have no idea & I cannot spend my life 24/7 7 days a week doing this, cant do it wont do it. I have my health issues which I've put on back burner.
I am so angry I feel like just going away & let him pay for a carer to come in.
He cooks cleans etc but cannot deal with cancer & doctors & lies to psychlogists who obvs think hes fine.
So I all I want is;
Oncologist to explain what all these appointments are, no clinic info just dates & times.
Scan results if anymore spread
And not have this usesless app with 100s of blood tests on meaning nothing, hospital letters only showing all these appointments.
Is chemo stopping is it working.
Just a human being to talk to to so I can fill in diary of dates to book transport etc
Had enough angry tired feel sick dizzy & feel like my legs will give way under me.
I have left phone messages & starting to get snappy, which isnt good.
Just had enough after 10 months my lifes non existent hes clueless like dealing with a child
