Newbie, advice and support please?

[Catherine]

Hi Sam,

I'm so sorry to hear your MIL is not good. I hope that she can be in no pain and that you and your family can enjoy (I'm not sure if that's the right word) some quality time together over the coming weeks.

I'm pleased that she managed some of Christmas day with you all, thank goodness she had oromorph handy.

Treasure each and every moment you can. Thinking of you Cxxx

[Sammy-Lou]

Again I am going to apologise for the lack of replying to everyone else threads and the length of time it has take me to get back on to update. My Nan got rushed into hospital last Tuesday after suffering a silent heart-attack, even though she is 90 this year, she is a 'young' 89 and still very independant and mobile and rarely has any health issues so it came as quite a surprise. By all accounts we are lucky to still have her with us as she had absolutely no pain and when the ambulance arrived the couldn't get her pulse and we were told she had suffered a heart-attack caused by 2 large blood clots and the narrowing of an artery. I'm so grateful she was with someone, who acted quickly and called 999 so within the hour she was at a top london hospital with a cardiac catherisation, a stent and the removal of both clots...

On top of this Anne has been suffering with terrible pain and to the point where she can't move or talk and even after taking oramorph there was no improvement. I can see the latest tumours are effecting her terribly and we have all got to accept that this is a sign of the end coming. Family have been called to come from abroad as soon as possible to say their goodbyes and her sister has come over to care for her. My husband has gone to stay with her tonight, something which I think he is going to need to do more than the 2 nights a week he has done for the last couple of months.

I think it is so very sad and although I thought we had accepted the inevitable, it seems more real today than it ever has....

[Catherine]

Oh Sam, you seem to be having such a hard time of it. I don't know why life events and sadness all seems to come at once at times. It seems so unfair you have so much on your plate. Life just seems so cruel at times. I'm glad your nan is being well looked after though.

Poor Anne, it's wrong that in this day and age people should have to suffer so much. It must be heartbreaking to watch and not be able to do anything to help. I don't really know what to say other than I've been and will continue to think of you. Sending love and hugs Catherine xxx

[charney]

Sam I am so sorry to hear you are having such a hard time at the moment and sorry to hear Anne is so

Poorly. Sending hugs and love your way, keep strong

Cheryl xxxx

[laura]

hello sammy, oh, it never rains but it pours, such a struggle isn't it?

very pleased your nan received such prompt and lifesaving treatment.

with anne , so sorry that things appear to be deteriorating, i hope the family get to see her, but most of all that she suffers NO pain, am sure you will be on her case for this.

my thoughts and love to you sammy, look after you as much as you are able, love lauraxx

[DRAD3]

Hi Sam - so sorry to hear what a terrible time you have had. Life certainly does have a nasty habit of kicking us when we are already down - so unfair. Am glad that your nan is on the mend now but so sorry that Anne is still suffering with so much pain - is there any way this can be rectified - it does not seem right at all? What have the nurses/doctor said about this?

Deb

x

[Sammy-Lou]

I just wanted to update cos I have found it hard to lately and I know that now it's just going to get harder and everyone has been such a support to me that if I stop now, I may not be back for a while..

Sadly Anne has deteriorated quickly now and over the last few days things have taken a turn for the worst. Unable to make it to the day unit at the hospice on Friday, the consultant came out to see Anne and confirmed what we probably knew already, that we are now entering the last couple of weeks. No matter how much you prepare, it is still an awful shock to the system, I feel a little numb and as I say we probably knew as we've seen for ourselves but nothing can prepare you for how final it all feels.

My husband holds it all together and seems so strong but now I see he's like a lost boy who doesn't really know what to do with himself.. he's been here before, losing his Dad to lung cancer at only 15 but still I'm finding the easiest thing to do is to talk to him even if he doesn't talk back.. I've told him that now he needs to go every night after work or to take some time off, go and talk to his mum, sit with her, stay with her and be there as much as he possibly can. I will be fine taking care of our daughter, we will still be here in a months time and it's not important that he's home with us right now and when the time comes my parents will travel up (they are an hour away) to take our daughter to theirs for a few days so I can be with him.

The MST has now been put up to 80 morning and night and it's still not enough so looks like it's going to be increased again, everything has been delivered in intravenous form ready for a syringe driver and I know that it won't be long before consciousness is limited. I don't suppose the pain is helping but Anne is not sleeping at night now, she must be scared and I can't imagine what is going through her head but last night she cried a lot during the night. Another 2 of her sisters from abroad arrive in the morning, they are actually on their flights now and should arrive before 8am, I'm glad they are coming but it makes it even more real and more final.

I hope we are able to take our daughter again on Saturday but as she is only 2 I'm not sure at what point we stop as she has an amazing memory for her age (she recalls real detail of things which happened back in Oct last year) and she is so perceptive, this weekend she kept going over to check on her Nanna every time she came back into the room, she wanted to be next to her lots and I could tell she knew something significant was happening. My heart is breaking for her and for my daughter for the times they will miss out on, life can be so cruel...

Sorry if I don't spend much time posting on others threads right now.. I'm not even sure I'm making much sense on my own! I will, as always, be thinking of you all..

Sorry for rambling on

Sam xx

[charney]

Oh Sam my heart goes out to you, life is just so unfair.

Keep strong

Sending my love and support

Cheryl x

[DRAD3]

Hi Sam

So, so sorry - you know you are in our thoughts and we send our love to you, Anne, your hubby and daughter and all the family. You are doing wonderfully, so thoughtful, thinking about how everyone else is feeling and what you can do to make it easier for them - so selfless and caring - I am sure your family are so proud of you and so glad that you are in their corner. I do hope that Anne is well cared for and pain free and that she finds some peace in her final days - I too cannot imagine what it must be like to be in her shoes. I still think about that now, with my husband - their bravery is inspiring. Take your time and never feel any pressure to be on the forum - we are all here for eachother whenever it is needed and we will be here for you.

Take care, Sam.

lots of love

Deb

[susikus]

Hugs, Sam, this is so hard isn't it? Just let go and live day by day, doing the best you can each moment. Your daughter will take all this in her stride, as young children do, and will very likely not remember a thing in time to come. My girls' Nanny died when they were 6 and 7 and they were very involved and do not remember a thing now. My older daughter, six months later at nearly 8, discovered her grandad's body - he was sitting in a chair and had been reading the paper and must have had a heart attack - and she hardly remembers that either. My love goes to you and all the family and especially to Anne as she travels her last days.

Sue

xxx

[laura]

sam honey, so very sorry to read your last post, my love and thoughts are with you all at this difficult time. take care of you, wont you? your hubby and daughter are going to need so much of your time shortly, thinking of you all. love laura xxx

[Catherine]

Oh Sam I am so sorry, I hope Anne is pain free and that you and your family find strength and love in one another. You have been in and will be in my thoughts xxxx

[Sammy-Lou]

Thank you all for your kind words and on-going support.

We managed to spend some more time with Anne this weekend and although she is still clearly very frail and not eating or drinking she is able to still have short conversations and move around a little. She is finding things very difficult emotionally at the moment and is in tears a lot, especially seeing my daughter sing her "Twinkle, twinkle little star" on Sunday. Her sister said she has slept very little at night and has cried most of the night. To make things worse for her she had an incident with the carer this week too, an expensive piece of her sisters jewellery went missing when only Anne, her sister and the carer where in the house. Suspecting the carer Anne's other son confonted her and she didn't deny it, he said she would be given the opportunity to return it by Sunday or they would call the police.. After her visit on Sunday it was found on the prayer table Anne has in her bedroom - A candle had been lit there just before her visit so it definitely wasn't there before. This has been terribly upsetting for Anne and it's just something she shouldn't have to be put through in her fragile state.

I sometimes feel like we are in this bubble and then something happens to remind me that everyone elses lives carry on, my Nan having a heart attack a couple of weeks ago and sadly hearing my step nan had passed away on Saturday...

Life doesn't stop to allow you to grieve does it!

My thoughts are with you all.. as always...

xxx

[DRAD3]

So sorry to hear how difficult it has been lately - as if it wasn't bad enough before, to have additional sorrow and stress. You are in the middle of a constant battle, Sam, and you are right, no time to grieve - it's so unfair. Thinking of you and holding you in our collective arms.

Much love

Deb

x

[Sammy-Lou]

I'm hoping to get a bit if advice please;

I've been struggling with the same issue throughout Anne's battle and I'm now really worried if its not sorted now its going to be too late. The doctor from the hospice visited yesterday and has increased the MST again (by another 60mg a day which as I understand is quite an increase) because Anne is still having to take oramorph all day. Yesterday Anne slept nearly all day and couldn't get up at all (up until now she's forced herself to get out of bed if only to lay on the sofa but still she has been 'up', but she has told my husband she is only going to take the old dose of MST and top up with oramorph because she doesn't want to be asleep all day. She has resisted more MST every step of the way and I'm worried that as we are today 2 weeks from when we were given a 2 week warning, that she is going to rapidly decline now and not be prepared in terms of the correct painkillers! I'd really like some advice on timings because the hospice don't seem to have judged it right. I was thinking of giving the helpline a call, maybe if someone could have a read through the back story and then I'll call, would they be ok?

Thanks x

[PCUK Nurse Jeni]

Hi Sammy-Lou,

If you call the Support Line number on (020) 35357090.

Or alternatively, email us on support@pancreaticcancer.org.uk

Thanks,

Jeni.

[Sammy-Lou]

Thanks Jeni, I've left a message and hopefully someone is going to call back later today but if not I'll try to speak to you on Monday when you are back in.

Thanks very much x

[DRAD3]

Hi Sam.

I will leave Jeni to give you her expert advice with regards to the pain relief but wanted to just say that I am thinking of you and sending you lots of love and strength.

Deb

xx

[yorkypaul]

Hi Sam

Sending you love and hugs. This is such a difficult time. I hope I have someone like you in my corner when I am in this situation. I so admire your courage and strength and, reading your earlier posts, we share the same family values I think.

Say strong special lady. Hugs,

Paul x

[Sammy-Lou]

Thank you Debs and Paul, so kind of you!

And Jeni, thank you so much for calling me back today snd speaking to me for so long! I can't thank you enough for the advice and support, it's such a bizarre situation where really I didn't know who to turn to and think I just needed some of the things I had in my mind confirming and many questions answering which you did wonderfully and with such empathy and care! Today my husband spoke to the Hospice doctor and he assessed Anne again, he questioned if the time had come to thinking about moving to the hospice and spoke with my husband about this. The decision was made to fit the syringe driver and look for a bed ready for Monday. This weekend we are going to be all together at Anne's house for what will be the last time, my brother-in-law is going to stay there overnight with our niece and nephew tomorrow, one last sleep over. I'm so sad but relieved that we can do everything possible to make the last few days as comfortable as possible for such an amazing, wonderful and strong lady. I'm blessed to have her in my life and I'm so grateful for her bringing up my wonderful husband and making him the person I love and best father out daughter could wish for.

Thanks again to everyone who has supported me, helping me along this journey, you've all got me this far.. Hope you don't mind but I think I'll need you all a little more...

Love to all

S xxx

[laura]

oh dear sammy,you have had an awful time, havent you, your precious mil, needs you as does your hubby and daughter, i totally understand the feelings you have about wanting to do the right things, but feel your in a spin.

so glad that the hospice seems a blessing, i am sure that you will all be cared for in a serene, peaceful enviroment,

thinking of you all with much love, laura xxx

[Catherine]

Oh Sam, there are no words I can say to make your situation any easier. You speak so beautifully of Anne, love to you and all your family. I'm thinking of you through these tough times. Lots of love Catherine xxxx

[susikus]

Oh Sam, hugs my lovely, am thinking of you and all your family. One step at a time, you can do this. Lots of love and hugs, Sue, xxx

[DRAD3]

Sam - we are here for you as always and for as long as you need us. So glad that Jeni was helpful - she got me through, when I was in the place you are now. You seem to have everything organised to allow Anne to have a peaceful and pain free journey and this will make this easier for you as well. I will be thinking of you all.

Much love

Deb

x

[charney]

Dear Sam big hugs to you, it is not easy but you have been there for everyone every step of the way,

The hospice will be the best place for Anne, they will be able to keep her pain free.

My thoughts and prayers are with you,

Cheryl xxxx