Dad still holding on.

[Lulu]

Decided to start another thread -

Dad seemed to 'come back' after the worst few days ever last week - we even had a 'blessing' for him at home as my sister and I were so sure the end was near. We're not particularly religious but we both 'needed' something like that and Dad was amenble - and it actually gave comfort to all of us, I can't explain why but it did.

Anyway somehow he's still here with us and we started his second round of chemo (gemcitabine) last Thursday again - and he is Ok at the moment. He received a blood transfusion last week and that has given him a bit of colour back thank goodness. He's still barely eating and I asked the doc at chemo about giving him Dexmathesone(sp?) - Jeni had suggested it on one of my posts earlier. Didnt like the doc's attitude very much - was very dismissive with me (I had fought him for the creons) and told me it was only for patients who will not eat. He seems to think 3 digestives and a bowl of cereal a day is ok then - coz that's what we're down to with dad.

It's a hard enough journey but when you feel the doctors are dismissive it's even worse. Poor mum is so anxious about his lack of appetite I feel he really should have been given something to help. To make it worse dad seems to have adopted this 'oh doctor I'm fine, yes I'm eating well...' attitude, which usually ends up with one of us trying to sign behind his back 'no he is NOT eating ok'. I'm not sure if Dad just wants to 'please' the doctors or if he is actually confused and thinks he IS eating well.

He has little or no energy and just sits in the house every day. Weight still at 53k (he used to weigh 75k plus)but we figure it could be fluid in his feet which we pointed out to the doctor. However doctor said he was very pleased with the 3k weight gain (felt like screaming at him 'it's probably the fluid build up')

Macmillan nurses come in every week to take some blood for testing before his chemo, but Dad has gone from someone who earlier this year (May, June) was out doing something every day to sitting is a chair at home constantly getting thinner and thinner.

At least the pain seems to be under control with the morphine and the nausea has abated thank goodness.

Notice there are a lot of 'newbies' coming here now and some are so young it's heartbreaking - I wonder if this horrible cancer is becoming more widespread or am I just noticing it now, are there any offical figures for the UK? Love to everyone x

[laura]

hi there lulu, so sorry to read about what seems to be, indifference, to your dads condition, i have never heard the reason for giving creon is for people who dont eat!!!!

can you get some printed info from jeni at pcuk? or speak to the specialist nurse attached to the oncologist? or even your macmillan nurse,

i havent done it myself, but you could look up creon on google and print the info off, and ask the dr to explain his theory, we are all entitled to ask questions and recieve a civil reply.

wishing you luck with your search, and all the best to you, dad and family, stay strong, love laura xxx

[yorkypaul]

Hi Lulu.I'm sorry that you feel that your GP is not being very helpful. I have come across this (and incompetence!) many times during this horrible journey. For example, the district nurses wanted meds - especially increased morphine dose - writing up by the GP for the weekend as my wife was getting much more pain. Left the details on GP's computer keyboard where she couldn't miss it Guess what - she didn't do it!! Was she prepared to let my wife suffer over the weekend I wonder? Anyway, DN went to surgery and confronted GP and got her to do it there and then!! When I nipped to the pharmacy to get this boatload of meds, the pharmacist was very concerned. The morphine had been written up incorrectly!!! Had the DN not still been at the house (while I nipped to the pharmacy)he would not have been able to get the DN to check on the drugs sheet at the house to check what it was supposed to be, we would have been in a mess. Unbelievable. Stay on top. Don't let the GP treat you badly. Be polite but very firm. Ask questions till you get the answers. Hold on like a terrier.

I know (as we all do on here) how hard this is for you. Continue to use this site for support. I wish I had known what I know now about dealing with the system. If something doesn't seem right, don't accept it. Question, question, question.

Thinking of you,

Hugs,

Paul x

[PCUK Nurse Jeni]

Hi Lulu,

Will email you regarding your post.

Latest figures for PC rates in the UK are about 8,085 new cases per year diagnosed.

Kind regards,

Jeni.

[Lulu]

Hi everyone, just thought I'd try to update and catch up with everyone. We've had a rocky 9 days with Dad unfortunately. Last chemo they told us his blood count was down to '1' - but if he felt well enough they would continue with the planned chemo session at a reduced 75%. So Dad and I were left to make the decision and we decided as we were there and he'd had a full examination, temp ok etc he was ok to go ahead.

Big mistake.

Since that session he has gone steadily downhill with a new symptom of collapsing (3 times in last week)GP came out and said it's because his BP is too low, prob caused by chemo. Yesterday was the saddest day so far when my mum phoned me at work almost in tears to say she'd managed to get him downstairs only for him to collapse at the bottom (thank God it wasn't mid-stair or they'd both have been injured) he refused to let her get a neighbour for help and we're all miles away at work. Instead he managed to crawl his way to the chair. Dear God this man was fit as a fiddle and booking a holiday 6 months ago, how terrible this all is.

He's completed 5 chemo sessions in total now but I'm not sure if this week's will go ahead as he is so unwell. Added to our worry now is mum who is 74 and suddenly seems to have gone to pieces, we think she thought there would be a slight improvement once chemo started but has now had to face the fact that it's not happening.

It's so horrible seeing your normally strong parents crumble under this awful thing we are having to go through. Add to this confusion I have picked up a vomiting bug and haven't manged to see them for 2 days and it will be another few days before I can risk it.

I once saw a description of this illness as "it's like a hurricane has gone off in the house and we're all trapped inside" and that rings so true now. Diagnosed in August and I have an awful sinking feeling we're not far away now. Trying to stay positive but seem to have lost all my positivity and fight these last few days. Apologies for sitting on my pity-pot today but I know I can vent at will here and none of you will judge and all of you will understand

Jeni, thanks you so much for your email, I appreciate it so much. Lulu xx

[laura]

oh lulu, i am so sorry to read your post, i have no wise words that will alter things, as you said this disease is so selfish, it reacts so differantly to each person, just as symptoms pre assesment are so varied, it really is trying to evade scientists looking for a cure, its time will come tho, just not in time. i guess .for us .

i really hope that dad is getting the best care, and that his symptoms are being controlled, and that you all experience a peaceful time.

i can relate so well to your mum, i am 72 [n a bit!] the thought of bri not being in my life, makes me feel physically sick, like all of the others on here. nothing i can do, thats the hardest bit isnt it?

lulu your in my thoughts, also your dad and family, im sending love and strength your way carry o doing what you have you will be okx love laura xxx

[PCUK Nurse Jeni]

No Problem Lulu.

Please call us if you need us, or give our number to your mum.

We would be more than happy to speak with her, even if to give her some reassurance.

Also, your dad.

Take care and stay strong,

Jeni.