Struggling

Tillyboo 1 day ago

2 replies
35 subscribers
128 views

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

Gatsue16383 1 day ago

Hi Tillly,

My partner has just started on this journey , we are two months in with a poor prognosis. You must be so tired, yes I'm finding communication with doctors difficult and I'm a retired midwife. It appears they are judicial with information.

i am also upset and miserable not knowing how to ease his chemo symptoms which has hit him hard. Do you have any friends or family to sit with him so he's not on his own so you can have a few short hours. I try to get out on the garden or go for a short walk. I also just browse in the local shops and come back with something silly like a new mascara, daft I know.

I'm also not in the best of health and I do fear for the future perhaps go back to the doctor for more help it really sounds if you need care too. I hope things will get better, none of us are on this journey alone
J

Tillyboo 1 day ago in reply to Gatsue16383

Sorry to hear this.

We have no one. Due to 6 month keytruda first working then not, he had 7 wks without treatment, as keytruda was every 6wks. So went for his normal pre treatment bloods to have keytruda the following day, we were told sorry not working in such a brutal way it knocked us sick. So a week went by & chemo carbo/premex was started along with zometa. All was good, in fact he felt the best he had in months as aches in joints & ankle swelling. No nausea nothing. Justca little tired. My husband as never been symptomatic of lung cancer no cough nit breathless no chest pain coughing up blood. Just back ache & leg ache back had a hit of radiotherapyb n April.but not the iliac bone in hip. Brain met had cybetknife & gone.

Lung tumour was stable & lymph nodes shrunk with keytruda, then stopped working lung mass grew to 7 cms from 5cm in 9 mths & lymph nodes started to grown, brain ok no more spread.

So for a full 7 days all good after 1st chemo, 2nd week same so decided for me to have some respite. 4 days away. Within 24 hrs of leaving I got into my hotel sent a text hows to be hit with extreme diarreah & feeling sick. I said call number he didnt, he was having kidney function test on the Monday. So I contacted thevtrials wing at Marsden explained the situation & he was seen by onco put on urgent care IV fluids & steroids bloods CT. Diagnosis keytruda adverse colitis reaction. So he spent 4 days as out patient in urgent care & I spent 4 days on phones to docs waiting on calls etc. Suitcase was left packed doc advised all ok now stay.

I got home yesterday husband needs a sigmoidoscopy at Fulham Marsden to check bowel is on steroids & other meds as potassium calcium & somthing else had dropped. Saw radiotherapy yesterday & will have radiotherapy on iliac bone for pain prob 20th Oct, as this colitis as messed up all treatment going to Marsden Tuesday 14th to see radiotherapy for chat & CT measurement for radiotherapy to begin & will have bloods to see if chemo can be done on Friday next week oncologist will call Tuesday.

Its all a bloody mess. His weightloss as dropped, mostly from the gallons of fluid from knees legs ankles & toes & as reduced knee pain from osteoarthritis.

So just have to wait & see Tues re treatment. Husband eating normal now, but he cant keep having these sudden colitis episodes. As I havent the energy to keep going to hospitals after 10 mths. I need major surgery postponed as no one to look after me 8 wk recovery I also have spinal & hand grip nerve probs which I get results on 20th Oct.

We have zero support. So its got to the point someone will have to be paid to do what I do. He isnt ill now just looks thin & cant see that weight coming back even with food & protein drinks.

I'm to unwell to go out & hope Tues I make Marsden with him as he blanks out. Always been same with docs. I've been in bed since I got home yesterday & vomitted twice after eating 2 sarnies. Fell asleep & forgot to call my doc so emailed.

Lifes a mess & if he keeps getting bouts of colitis from treatment no idea what next plan is.

He said he feels like having radiotherapy on iliac & calling it quits as none of us are living just existing.

10 months of hell & if one more person says " have a positive attitude" I'll scream!

So literally no idea whats gonba happen & also my husband is my ex husband who moved back into my flat 10 mths ago & my lounge is now a bedroom &:my lifes stopped. I had no idea what I was letting myself in for, but known him 30 yrs & had to help.

How anyone beats stage lung cancer with 2 bone mets & one brain met I trully do not know, they must go through hell on earth to get there & I take my hat off to them for suffering this misery, as its no life just existing. Maybe if we had a good support network would help, but we dont & having someone on a phone doesnt do the things I've done over the months. And just had enough...

More from this forum

Struggling