My Dad My Dad

[Ellie]

Hi Chinup

We had bad news on Tuesday. My husband had a scan and it showed something on his liver. We're now waiting for him to have an MRI scan next Friday, to show things in more detail. He's also seeing his specialist in Leeds on 1st April - what was supposed to be a regular check-up. Our local hospital are sending all the latest info and test results through to Leeds, so hopefully we'll know more when we see him.

I am still trying to be positive, trying not to panic yet, because after his whipple they said there was something on his liver, which turned out to be a blood vessel. Maybe it's the same now. Except why is he getting the back pain? No one seems to be able to answer that. Bad headaches could be down to the chemo, but the doctors said it shouldn't cause back pain.

This is the bit I hate - just waiting around for the results. I can't even write what's going through my head at the moment. I don't want to put it in words. To get this far and then find things are going wrong again....

It's even worse for you, having seen your husband go through it and now your mum. I am so sorry for you, and your poor dad and I hope everything is being done to help your mum right now.

Thinking of you and sending my thoughts and best wishes.

Ellie

x

[chinup]

Hi Ellie

Sorry to hear your latest news, that's very worrying for you but don't get too disheartened. There are quite a few treatments to keep tumours under control in the liver, I know a big operation would be out of the question but there are other procedures, such as hepatic embolisation which can be very successful at slowing down tumour growth, if that is what it turns out to be. My first husband had several of those and they really did the trick. The main thing is how your husband feels, if he is quite well apart from the obvious then they will be willing to have a go at other treatments. As i remember, enlarged livers can cause shoulder pain rather than back pain but I know you will have been through every option in your mind to explain away the back trouble as something innocent! is your husband on any medication which could be causing the headaches?

My mum is still with us, some days she seems ok and manages to walk a few steps, other days she has little or no energy. She is still eating a little, but she has other problems building up now, she said it was getting painful to eat and I noticed that her tummy is bloated and hard in places, and she still has very bad oedema in her legs and feet. It's the way she looks which gets me most, she is so thin now and her face is very sunken. Pain is sort of under control - she has doubled her morphine over the last week though. She spent a couple of days in hospital last weekend having a blood transfusion which doesn't seem to have done a great deal but I think it made her feel that she had done something. She's still with it though, she says funny things which make us all laugh but somethings the look on her face is heartbreaking, I can see the sheer overwhelming sadness in her eyes which she tries so very hard to hide. Mum and dad are getting help from carers and district nurses but dad is still running himself into the ground and wont take a break, we are there as much as we can be but there just aren't enough hours in the day and things are very stressful. My husband is an absolute tower of strength for all of us though, he never lets things get on top of us and is really taking a lot of the strain, he keeps me smiling at the end of the day which is very important. I hope that you and your husband have lots of kind support and not just people who want to be kept in the picture but don't actually do anything when it really comes down to it. Take care now, and keep positive, just wait and see what they have to say to you - I know it is the hardest thing to deal with, the waiting, and I do feel for you.

All the best to you both, XX

[lorraine]

HI Ellie & Chinup

Iam just dropping a note to you both, to say iam thinking of you and your families.

Stay strong and positive, it's hard put you will find the strength from within.

I still look on this site most days to see how you guy's are getting on.

I see other people are writting too,i wont to answer some of there questions,and start writting then stop ,as i still find it hard to write.I feel letting go of this site is letting go of dad all over again, as i let out all my feeling on here .So even if iam not writting iam still reading and thinking of you both very much as you both gave me lots of support when i most needed it (thank-you).

Take care

I am here for you both

lorraine x

[Ellie]

Thanks Chinup, your message cheered me up a lot! I AM staying positive - just the odd moment when I let things get to me and it helps to write on here. Apart from the back pain, my hubbie seems to be ok and we've just had a lovely day out in the Yorkshire Dales, enjoying the sunshine and scenery. It helped to take both our minds off things.

I know nothing will help you do that, as you're seeing you mum so ill, and all I can say again is that my thoughts are with you. Wish I could say more to help.

Lorraine, hi again. Nice to hear from you and thanks for your support, too. It's still early days after losing your Dad, isn't it, so you're bound to still feel raw and hurt so much. It's so nice of you to post and offer your help and support on here still. I hope the memories you have of your Dad in happier times will help heal your pain eventually. Again, I wish I could say more to help, but only time will do that. Your story on here did a great deal to get us all writing in and helping each other, so if one tiny good thing came out of your dad being ill, it's that you've helped other people in a way. Hope you don't mind me saying that. I know you will wish you'd never had to write about it - like the rest of us on here, but it does help to know others are going through the same, or a similar thing.

Anyway, thanks again and kind thoughts and best wishes to you & Chinup.

Love

Ellie

xx

[chinup]

hello everyone

thanks Ellie and Lorraine for your support, Lorraine I understand how you must be feeling, it's so hard to keep moving forwards somedays isn't it.

It's bad news here I am afraid, Mum is now in our local hospice after deteriorating quite a lot last week. She was so upset to have to go in - even after everything that has happened to her she hadn't really come to terms with how much the cancer has advanced and when the GP came to do a home visit and started talking to them about resuscitation orders and the like, she and my dad got very panicky. My dad was finding it so hard to cope at home but was desparate to keep her there. She is feeling very sick a lot of the time, keeps bringing up bile, she's started to look jaundiced now and is painfully thin. Her stoma isn't working, she still has pain, she's full of bruises and bedsores. Honestly folks, it is just heartbreaking to see her like this. Anyway, she is fairly comfortable in the hospice and the staff are looking after her extremely well.

Can anyone give me a bit of an idea of how long we might expect her to live now? Sorry for the blunt question, i just wondered if we were looking at days now, my mum and dad have always made it clear that they don't want to know this information and I haven't had an opportunity to ask the staff.

Take care everyone, hope all is going as well as can be expected for you. XX

i

[lorraine]

Hi Chinup

So sorry to hear about your mum my heart goes out to you and your family.

Dad was in for about 10 days its when they stop eating and drinking thats when you start counting days . Dad started to slow down and just didn't fancy food ect from the monday and he stopped on the wednesday and by the sunday 3.15am he was gone.The last 3/4 days with dad were just a waiting game you could tell by his breathing pattern each day that things were changing ,and by that time he was out of it anyway in no pain.The last smile i got from him was on the wednesday morning and that was it.And to me thats when dad said goodbye because the last 3 days it wasn't dad at all and i found it very hard mainly to do with the changes i saw .It is hard but you do find the strenght to stay strong ,you may go home and cry for England but that fine as you need to believe me.

Sorry if i've been lunt too,i found it easier to now what was giong to happen and i think that gave me strenght too.Say/Spend as much time as you can as changes can sometime happen very fast (as with my dad)

Thinking of you at this time .

Lorraine x

[chinup]

Hi Lorraine

Thanks for that, I do appreciate you taking the time. I know how hard it must be for you to be even reading here on this site, never mind replying to people. I am in this strange limbo at the moment, I don't want to see my mum like this anymore as she is in so much pain and discomfort and I can sort of accept that it would be be better for her to go sooner rather than later - in a way it would be a relief. But on the other hand it still makes me numb when I try to imagine how it will be when she is not here, I just can't believe it is going to happen very soon. We went up to mum and dad's house to sort a few bits out over the weekend and i went into the room with her hospital bed and commode and bits and pieces in, the pillow and duvet were still dented from where she was lying, it very nearly finished me off.

Anyway, despite what it must sound like, I think I will be ok. I faced all this once before when my first husband died of cancer in the same hospice, so all those bad memories are coming back to me as well now which makes it really hard. I am trying to plan ahead, do you think that is a good idea? We were thinking of booking a couple of holidays - seems awful that we can think about things like that at a time like this but it seems to help. My dad, although in pieces at the moment, is likely to be quite independent and will want to take himself off to clear his head, but we could always take him with us.

Thanks for the practical information too, I hadn't realised that mum might go so quickly after stopping food intake. Did your dad get jaundiced at all? I read that this is a sign that the liver is failing - i could feel that her liver was very enlarged last week some time. I haven't seen her yet today but apparently she was very sick in the night - surely all these things are an indication that her body doesn't want any more food? Also she seemed a little bit confused and withdrawn yesterday which I haven't noticed before - almost as if she hadn't really noticed we were there - I understand that this is quite normal though. Bless her, it is her 69th birthday on Saturday - not sure if she will make it now.

Thanks Lorraine, one day at a time for you - hope your sad memories of the last few months are starting to fade a little bit. all the best XX

[Ellie]

Dear chinup

Just to say, my thoughts are with you. To have to see your Mum go through this, after losing your husband in the same way, must be twice as hard.

Wishing you strength to see this through. Hope your mum will be kept peaceful and pain free.

You are in my thoughts.

Love

Ellie

xx

[lorraine]

Hi Chinup

Dads tummy also started to get bigger due to the liver/tumor growing and he did start to go very slightly yellow.He was shrinking in weight as the tumor was getting bigger.Just to say the time scale i said in my last letter may be different with your mum,i didn't wont to scare you.But the nurses did say to me about dad that when people stop taking fluids/food the swollowing motion stops and then it can be days/or even up to 2weeks,but each person is different .Dad stopped drinking and also found it hard to swollow pills thats when we knew .The nurses were great and as soon as they knew the time was near they told us to stay over (that was on the friday night) we stayed from then on.I think you build a trust with them and we trusted them to inform us when the time was near as best they could.

Take care,thinking of you and your mum

Lorraine

[lorraine]

Hi Chinup

How are things going at the moment ?

Thinking of you

Lorraine