My dad diagnosed April 12...... SHOCK :(

[Helen wright]

Hello,

First time for me using this forum.

So many very sad and touching stories i have read and feel so much for everyone, as you dont think about situations like this until your thrown in the deep end with this devastating news!

My dad has been back and fourth to doc's for well over a year with all the symptoms, if only we had researched!

In April he had to go to hospital with survive stomach pains, after several tests and scans we was told the horrible news. After experts in London viewed his case we was hopeful as the said this was operable! Thank god we thought…..more scans were done and confirmed the operation. So London we went for op. When they cut him in half they then realised it had gone to his liver in 2 places! How could this of been missed we ask!

Now he had been all through this pain of recovery, home for a week, then, with infection to the liver back in hospital L . such a massive devastating blow and our hope vanished.

We now feel like have are grieving for someone who is still with us! We will get strong again and fight this together, but its so raw at the mo.

Hes loosing so much weight but he has a very good appetite, no sickness but he does have very runny toilets that float and are very pale….does this mean he is not digesting his food properly? Ive read about Micro-creon to be taken with food to help break food down in? am I right? If so do you know who we would need to speak about this to arrange this? Is it our consultant who takes forever to get back to us or can we go to our doc? If im wrong any idea what we can do, as he is so weak. We obviously want to get him strong so he can start his treatment.

Hope to hear soon

Kind thanks Helen x

[laura]

hi helen, sorry about your familys situation, awful isnt it?

creon is enzymes in a capsule [ well at least bri's are ] the strength he takes is 25,000

they aid digestion of food, because the pancreas is unable to do its job!

should be a specialist nurse attached to the consultant, she could authourize them, as could a macmillan or similar, nurse, also your doctor, unfortunately some gps are not very familier with creon, how it should be taken etc, they are not specialists after all, so dont just ask for micro, you cannot overdose on creon but you most certainly can NOT take enough, am happy to help with more advise if you need on this but Jeni the nurse on here would be more appropriate for you, however feel free if i can help ,

am sure dad will feel better and hopefully put on some weight when this has been addressed, all the best, laura x

[Helen wright]

Hi Laura, thank you very much for your advice,

we will be trying to sorting this out as soon as we can now. I think the weight

Loss is getting him down as he's always been a strong man, a builder actually,

So never not been able to do anything really, well physically .

I ment to mention last night that he didn't have his op, they just closed him back

Up....so he's going through all this pain and discomfort for nothing really, he should

Really be having his treatment by now.when they first found tumor in April it was

3cm now in June it's 7cm x 6cm is this how fast this cancer grows? Any advice about the

Next best steps once he feels better.

Kind thanks Helen x

[laura]

hi helen, bri also was unable to be operated on, unfortunately, because of where pancreas is situated a clear view, even with scans, cant always be totally seen untill the op,,

bris tumour was/is wrapped around "superior mesenteric vein" and the risk of removing it was felt too great, a couple of "bypasses" were done and he too was sewn up, his scar took nearly seven weeks to heal! he also lost 4stone in the begginning, he has regained 2 stone and is doing well.

he had 19 months of chemo "Gemcap" and certainly responded well, has a scan every twelve weeks, the first two scans showed a shrinkage, and currently is stable, chemo has ceased, but reviewed each time we have a scan.

perhaps you will know more when you have meeting with oncology, we have a friend,.

twice has had tumours removed from the liver, his mets came from bowel cancer, so dont despair there is a lot of help out there.

do hope you have a good hospital/oncology team looking after you all ?

kind regards laura x

[Helen wright]

Hi Laura, thanks again for your quick response..

Bit of a delay from me, we went to see oncologist other day, so we learn that my dad has it in stomach linning too, so it's spreading fast . He also has caught shingles so on meds for thst...he hopefully if he stays well,will start chemo in 3 weeks at [name removed - moderator] hospital. He had bloods done and it showed hes liver function had dropped from before, but they said it could b paracetamol so dads stopped taking them and will have re bloods done this week.

But as of today he is in tremendous pain again! My mum is just taking him up the hospital again as the pain could be down to another infection?? Or could it b the cancer?, We really don't know. If it is infection we don't know why he keeps getting infections!!

Poor dad, he's worried that the future will be constant pain and suffering, it just doesn't seem fair,....

We get given numbers to ring at hospital so he doesnt have to wait in A & E and no one answers or returns calls, it's so frustrating not knowing who to contact

You said about Bri and he's op, and is his contained in pancrease? was he having a lot of pain before or/and after the op? Did he get any infections?

Thanks again And kind regards Helen xx

[laura]

hi there helen,, the begginning of treatment etc always seems slow, but they, oncology, have to get it right, and also have dad in optimum health, quite usual to pick up infections, hes obviously very low. even on chemo you have to be very aware of infections and other people with colds etc. so yes bri did have several infections, at one time they left him on a low dose antibiotic for several weeks.

yes, thankfully brians tumour is contained within the pancreas, we do get scanned regularly cos its such a sneaky disease.

have you contacted Macmillan, or similar, depending what you have in your area?

b4 diagnoosis bri complained of a lot of discomfort high in diaphram and feeling of food not going down properly, does have back ache but has long standing [15years] of prolapsed discs, so still suffers with back pain, this is treated by morphine twice daily, 60 mg, with oromorph for breakthrough pain, the tablets seem to have it under control,

it isnt certain if the cancer is causing pain or the back, but our macmillan nurse is able to get his meds adjusted immediatley, so cant speak highly enough of her care.

be polite, but PERSISTANT, that dads pain gets sorted, ask the doctor what he would prescribe for his father? could be helpful. hope some of this may b of use, cos our situation is differant to your dads, for which i am so sorry, so i feel bad sometimes writing to people who are having a far worse time of it,than us,

kind regards to you all laura xx

[Helen wright]

 Hi Laura

Don't be sorry! Everyone is so very pleased to hear hes doing well, It's nice to hear positive things rather than all bad, it keeps our hopes higher, I'm just praying my dad responds well to his treatment, rather than just horrible side effects.

My mum asked me what size was Bri's tumour before treatment, and what chemo has he been on?

As with bri my dads lost a lot of weight and we're struggling to get any weight back on him  with all these set backs! Trying to build him up ready for treatment. Any suggestions how to put on weight and increase immune system??

Much appreciation for your time x

Helen xx

[rachelqt]

Hi Helen

Just been reading your story, so sorry to hear about your dad. I find it hard to watch my dad going from the big strong man he was to needing our care now and fighting this illness.

He too is inoperable, with a spread to a lymph node around his liver. Although we have been blessed that he has never had pain, his digestive systems seems to suffer with things like nausea (kept under contol with anti sickness) wind and rumbling tummy.

He was diganosed just over 10 months now, he has been in hospital a few times with various things like infections and now recently he is in hospital after getting a bypass due to his tumor blocking food from going into his stomach and causing constant vomiting. This operation is to give him a better quality of life. He is still in hospital recovering but we hope to get him built up again soon.

Despite all these set backs he has had a good quality of life when out of hospital, enjoying going for walks and his two grandkids. To begin with it was hard to adjust from going from a working man until sitting at home all day!

His tumor was 2cms, although we were told its not to do with size but where its positioned, not sure if this is true? He has had 4 months of chemo called Gemcitabine, which he tolatrated very well and got positive results. They took him off to see how he gets on, and will put him back on it when he needs it again. He has been off it 4 months now.

My mum made milkshakes with full fat milk and cream, rice puddings, pastas with creamy sauces and gave him chopped up fruit and nuts to nibble at during the day. He lost 3 stone and we eventually managed to get 2 stone back on after time. If your dad is not putting on weight and is eating well, you should ask for Creon which would help your dads body to absorb the nutrients better and keep weight on.

Hope your dads chemo goes well and keep us updated. I know its hard to do but keep positive and enjoy any good days you get!

Takecare Rachel xx

[Helen wright]

Hi Rachael

Thank you for your response and advice, very much appreciated! Good to hear about treatments of others and problems they hit and how it gets treated, I then feel we can try to control the situation more or be aware of certain things.  X

I hope your dad is recovering well....Any idea when u will get him home? So much better to be in your own surrounds and comforts!

 Been very hard for me to get on here lately! With everything that's been going on with dad, we've just had baby, Daisie-Mae 8weeks old, so hard fitting everything in and being there for mum n dad! 

Dad held Daisie for first time other day! Think he was scared about dropping her as hes been so weak. So that was lovely and to get pictures, was nice. Just praying for more nice days like that. 

Dad seems to always be very tired and sick, very few good days! I hope this changes when/after he has chemo...

He's appetite has faded a bit, he feels hungry but then when food is in front of him he only has little bit or he just can't eat it. 

Thanks again Rachael and Laura for your support xxx