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DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Sat Sep 15, 2012 8:21 pm

Hi Sammy-Lou
So glad to hear the palliative care nurses are on the ball and making sure that your MIL is as comfortable as is possible. This really will make all the difference. Do not worry about whether you will cope in being there for her or for your husband - you will be absolutely fine as you have been so far. You will realise now how much strength you have and this will see you through, I promise. Take care and love to you, your MIL, your husband and the rest of your family.
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Sun Sep 16, 2012 5:03 pm

My husband is with his mum now and she's having a real rough time with sickness at the moment, it dies seem like her pain is under control but she is vomiting lots and worse after drinking or eating (the little she is) Today she has had some cornflakes (this morning) and a cup of tea (at 2pm) but has vomited since. I have read lots about other people who suffer terribly with sickness having a stent put in to help with the bile, I'm just wondering if we should ask why this hasn't been offered to my MIL as she has suffered with nausea and vomiting since she was diagnosed? Any advice would be great, thanks x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Newbie, advice and support please?

Postby laura » Sun Sep 16, 2012 11:22 pm

hi sammy, so sorry mil is having so many problems, all so very draining isnt it? talk to the pallative nurses they may suggest different meds for the nausea, or can pursue for you, the question of a stent, i know its a shot in the dark, but feel sure someone on here used sea sickness bands and found they helped!
do hope you get it sorted. love and best wishes to you all, laura xxx

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Wed Sep 19, 2012 2:44 pm

Just to update - my mother in-law is being moved to a hospice today or tomorrow as her bloods have finally started to pick up so she's at less risk of infection. She will be having the drain fitted for her ascites at the hospice as its been making her do uncomfortable since they took the 8 litres. She has started to look a bit better and has actually tried to eat a little over last 2 days which is amazing. Thank goodness for a great palliative nurse who sorted her pain relief as this seems to have been the turning point! We are hoping that it will be a short stay at the hospice this time and that she will get a few good weeks at home before having to go back in there as she has told my husband that is where she would like to be for her final days. I'm sad she has chosen not to continue with chemo but I completely understand her reasons and just hope she is comfortable until the end.
Thanks again for the love and support I have been shown here xx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Wed Sep 19, 2012 8:36 pm

Hi Sammy-Lou
So glad to hear the palliative care nurse has helped so much - they are truly wonderful aren't they? My husband was so anti palliative care - he saw accepting them into the house as the beginning of the end but I thought they were wonderful and really concentrated their and our efforts on the quality of life which really becomes so much more important towards the end. It is lovely that your mother in law is happy in the hospice and has expressed her wishes to you to be there when the time comes - it makes it so much easier for us carers to not have to try and second guess and worry about making the right choices for our loved ones. So loving of you to understand her choices and stand by her, difficult though this must be. Continuing to think of you and sending love and strength.
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Sun Sep 23, 2012 6:05 pm

My mother-in-law has been in the Hospice now since Thursday and I'm so relieved for her, it seems like a wonderful place where she will be looked after and allowed to relax. I can't thank her palliative nurse enough for arranging the hospice so quickly and getting her pain under control. Her ascites is very bad though and she has had terrible swelling in her legs for over a week now, her palliative nurse discussed with me the possibility of not draining it as it is reaccumilating so quickly, in a nicer way she kind of said it was questionable how worth it it would be! She has been put of a duritic to hopefully help. Her sickness and nausea is still terrible too, although shortly after her anti sickness meds she is able to manage a little to eat. The hospice is lovely, only 12 beds, each room looking out onto a beatiful garden which is great for her as she adores her garden at home, it's do much more comfortable than the hospital and at least they can manage the symptoms better there. Our little girl (22 months) has a rotten cold so we've had to stay away and my husband is staying at his mums so he can stay germ free and still visit, I'm finding things hard without him at home much although I know I can't complain and even feel awful for thinking about myself.. We have been trying for baby number 2 since before mum got her diagnosis, we spoke about maybe stopping but decided we had to carry on with life, however hard it is to think of the future, each month the disappointment I feel about but falling pregnant is getting harder, a sadness I can't burden my husband with.. I'm just sat at home alone and feeling so sad, sad for us and sad we still can't give mum the good news which may help her fight this.. I know that's not important.. I feel bad wanting that little light in our lives..

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Newbie, advice and support please?

Postby laura » Sun Sep 23, 2012 6:35 pm

oh sammy-lou, am so sorry your feeling so lonely, really understandable, we all have our needs, irrespective of whats going on, so please dont feel guilty, cos it wont change anything, will it?
am pleased for you all that your mum in law, is where she wants to be, cant ask for more than that, and your happy with the care shes getting, so all good there eh?
perhaps your not meant to get pregnant yet! once all the stress has gone from your life, hopefully you will be more relaxed and nature will kick in? and then you will have a new focus,
we all care about you sammmy, your not alone , and all will work out in the end im sure.
love and hugs laura xxxxxx

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Newbie, advice and support please?

Postby charney » Mon Sep 24, 2012 10:08 am

I am so sorry Sammy Lou, I feel for what you are going through at the moment but your MIL is in the best place, and as Laura says I am sure when things have settled and your stress level is not so high you will have good news. Keep strong
love and best wishes
cheryl xx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Mon Sep 24, 2012 8:10 pm

Hi Sammy Lou
It is totally understandable that you are desperate for a little light - you have been so worried, sad and lonely without your husband, looking after your poorly little girl on your own - you must have felt like you were in a dark corner, what else would you want but a chink of light? Do not feel guilty - it is not wrong to hope for something wonderful to happen - and it will, Sammy Lou. I am so happy to hear how lovely your mother in law's hospice is and how settled she is there with some pretty views and good care - it seems like they have her very best interests at heart which must be reassuring for your husband and you. Do not beat yourself up - you are going through an extremely difficult time and managing amazingly well. Keep strong and keep the faith that things will turn out for the best. As ever, we are here for you.
Much love
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Tue Sep 25, 2012 1:11 pm

Thank you so much for your endless support, I have had a few dark days but your kind words have helped bring me out the otherside along with my husband coming home last night for a couple of nights. I'm feeling better about things today, funny how some days it just all gets on top of you and yet others you manage to get by ok. Anne, my mother-in-law is being well looked after at the hospice and I'm hoping to be able to visit at the weekend, I think it has been getting to me that I've not seen her aswell, feel so helpless so far away. Yesterday a consultant visited and spoke about trying to reduce the swelling in her legs, he didn't mention how and she is already taking a duritic so not sure what he will do but I really hope it helps. A family liaison nurse came to see her and gave her 3 memory boxes to put together for her 3 grandchildren.. I almost cried for her when my husband told me, that must have been really hard for her, I know she loves them all dearly and the thought of missing out on their lives must be breaking her heart! I think the memory boxes are such a lovely idea, I've been thinking of what else we could do, my parents are coming to visit today with lots of photos they have found, some of my daughter with her Nanna on the day she was born and her first christmas. I will be going through our photos too, I thought I could maybe make a memory journal for my little girl as she's only 22 months and I just want her to know the wonderful lady her Nanna is! I also thought about going to one of those build a bear shops and having teddies made for the 3 children, even getting those sound boxes to put in them, their Nanna always says 'Remember.... I Love You' when we leave her house so maybe she could record that so they could have a lasting memory of her voice so they will always know how much she loved them x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Newbie, advice and support please?

Postby laura » Tue Sep 25, 2012 6:01 pm

hello sammylou, really happy that you are feeling brighter today, well done!
memory boxes sound lovely but as you say must be so hard for your mum in law, dont know if i would be able to do that!
relief for you and hubby that she is happy where she is, thats more than half the battle,
keep on going eh, love and strength to you all love laura xxxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Tue Sep 25, 2012 7:32 pm

Hi Sammy Lou - so glad to hear you have had a better day. Those dark days are so difficult aren't they? So glad you are able to come onto the forum and get your thoughts into words - I think that, in itself, helps - stops the thoughts just going around and around getting nowhere. I had a tears in my eyes reading about your lovely ideas for the memory boxes. Sad it is to be having to think about it, I think it will be really therapeutic for you all and will bring you great comfort. Continuing to think of you and your family.
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Sun Nov 18, 2012 10:20 pm

Well it's been 6 weeks since my last post and we are so lucky to still have my MIL with us. She got gradually stronger and stronger in the hospice and was eventually allowed to spend some time at home, something she'd been desperate to do before the time comes. I have such mixed emotions cos its such a rollercoaster, she has up and down days although it seems more down days now. Since she went into the cancer unit to have her pre-assessment for her chemo to start (back in the first week of sept) and this devestating stage of her PC journey started we have been confronted with so much sadness and uncertaincy. First the draining of 8.5 litres of ascites, the blood clots, the mini stroke, the drop in her bloods, the internal bleeding, isolation in hospital where we couldn't even see her without gloves and gowns, to thinking we were going to loose her there and then, the first dose of chemo which had to be stopped half way through, to her decision to not continue with chemo at all and the transfer to the hospice.. The wonderful hospice who got her pain controlled for the first time in months, got her to start eating again, who helped her lower her MST dose from 60 a day to 40 so she could stay mobile enough to spend precious weeks at home, twice daily care visits and hospice at home.. Now just when she seemed to be getting stronger... She's in terrible pain again! The sickness and nausea came back 2 weeks ago along with the pain, she is deteriorating again, very weak, pain up to a 6 or 7 even with oramorph all day and the MST, anti sickness tablets have been changed but the nausea is back..
I'm scared that time is slipping from us.. We were told at the beginning of Sept to expect 12wks and it's approaching.. Fear, angst and utter sadness; it was our daughters 2nd Birthday on thursday, we had a tea party today for close family and Nana couldn't make it because she was in too much pain! Tears are flowing as I type because I wanted nothing more, for our daughter and my MIL, for her to be able to spend just an hour with us today.. I can't begin to imagine how devestating it must have been for her not to be able to come... She didn't even call, I understand why, my husband has gone to stay with her tonight, he said she's in terrible pain and the hospice have advised she keeps taking the oramorph and that is all...
Such a cruel, cruel disease. I know that it's a moment my daughter is never going to get back and both of them have been robbed of having each other in their lives, I'm just so sad for them both..
Sorry for such a rambling post, couldn't be further from being in control of my emotions right now

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Newbie, advice and support please?

Postby charney » Mon Nov 19, 2012 8:20 am

Hi Sammy Lou, I have been thinking about you and how things were going, im am so sorry to hear about your MIL as you say it is such a rollercoaster ride and such a wicked disease, my heart goes out to you and your family. Keep Strong
Big Hugs cheryl xxx

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Mon Nov 19, 2012 11:55 am

Thanks Cheryl, I've read your story about Audrey's fight against this awful disease so many times and one thing which strikes me is the similarities between our experiences. I know each patient is different but just wanted to ask if Audrey's pain and nausea ever really got under control? It seems Anne (my MIL) gets some relief but it's short lived and not long before she's in tremendous pain again and the nausea seems up come hand in hand! I'm so worried cos I've read some awful stories about not being on the correct dose of painkiller leading to an absolutely unbearable end story, rather than a peaceful one; she's such a stubborn and brave lady, I really couldn't stand for this to happen to her because she's not having enough pain killers?
Hope you and your family are doing ok and managing to keep strong, my heart goes out to all of this wonderful extended family as Christmas draws near
S xx