Newbie, advice and support please?

[laura]

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]

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]

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]

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]

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

[charney]

Hi Sammy Lou.

sorry to say but they never really got the nausea under control and thats what she

hated the most and complained of, her pain she could cope with although she hated upping

her oramorph dose. she had only just been prescribed some new nausea pills when she

suffered the strokes and had only taken them once, so im not sure how these would have worked, All I can say is that her medical team were trying all they could to contain

it and were determined to get it right. the funny thing is that when she had the first stroke all her nausea and pain went away but did return, but by then she was on a morphine driver as she had suffered more strokes and a dvt in her leg. All I can say to

you is that she was very peaceful and in no pain at the end. My husband is coping very well , my sister in law not so good and like every one on here the first milestone is the hardest and Christmas this year will be hard. My love to you and your family, pls don hesitate to ask any questions on here, if I cant answer them I am sure another extended family member on here will be able to.

xxxxxxxxxxxxxxxxxxxxxxxxxx

[DRAD3]

Hi Sammy Lou

So sorry to hear how things have deteriorated and totally understand your fear and worry for what's ahead. My question is with regards to the pain management and why the MST hasn't been upped if your mother in law is using oramorph regularly? I thought that oramorph was for breakthrough pain and if this was being used often, then it meant that the MST should be upped. It really will make all the difference if her pain is managed appropriately. I do hope this can be sorted.

Sending you lots of love, Sammy Lou and hoping things become easier for you all and that you are able to enjoy some precious lovely moments together as a family.

Deb

xx

[Sammy-Lou]

Thanks to you both for your replies.

Cheryl - Yes this is what Anne is like, suffering terribly with the nausea, like Audrey, she too says this is far worse than the pain, which although is bad (she is rating as 6 or 7 out of 10) she can cope with this but the nausea seems to be really getting her down.

I thought the same Deb, surely if she needs to use the Oramorph so often then the MST needs to go back up - I think I am going to try to put a call into the pallative team at the hospice as I don't think she is being completely honest with them and also I think the MST is not being increased because she is worried that if she allows that she is going to be asleep a lot like she was in the hospice and that is getting closer to the end than she wants to get.. It breaks my heart to think she is suffering. I do understand why she is doing it but I'd hate for her to leave it too late as I've heard that a decline in the final stages can happen very rapidly. She is such a strong willed lady that I am worried she is being very clever and hiding her symptoms from the medical team so she can carry on at home for longer.

She has told her eldest son this week that she won't leave the house again, not to go to the shops with someone else or anything as she tried to go out last week and really struggled, was in so much pain she didn't sleep at all that night and spent the following few days in pain and sleeping most of the day.

Are the hospice allowed to speak to the family in confidence because I think she would not like it if we speak to them behind her back?

Thank you again, your endless support is appreciated so much.

Cheryl - I'm glad to hear your husband is coping well, sorry about your sister-in-law not coping as well, I hope Christmas isn't too awful a time, like you say 1st major milestone, it's always going to be hard so my thoughts are with you as they are with all of you brave and lovely people xx

[susikus]

I just posted a long reply and it has not appeared - very frustrating! I essentially said that your m-in-law need not be in so much pain and that the dose of MST could be upped. If it controls the pain better it won't make her more sleepy. Do you have any idea what dose she is taking? It comes in 10mg, 30mg, 100mg and 200mg tablets. Realising this really helped me because when you start on 10mg twice a day and you end up on 180mg twice a day it seems like an awful lot, but then you understand that there are 200mg tabs and realise that people need that much. Then also the macmillan nurse told us that the dose of oramorph for breakthrough pain should be one third of the twice daily dose - so Pete would have 45mg oramorph at a time - and if you need oramorph every day then you should increase the MST as it is easier to keep pain at bay than to get back on top of it. We also found that nausea increases pain and vice versa, so good anti-nausea meds are needed too. Hope this helps Sammy-Lou, lots of love, Sue, xxx

[laura]

hi sammy-lou, been catching up on posts, having been away, so sorry to read of anne's deterioration, really hope by now you have been able to talk to someone re pain control, difficult i guess cos your mum in law has the final decision! but really hope she will consider her options, awful, awful situation to be in, for you all, to you and your family and all my other friends on here, i think about you all often and hope you are doing ok, bri and i are ok, scan on friday, consultant next week, now i year since last chemo!

love and hugs to each and every one of you, laura xxxxx

[Sammy-Lou]

Thank you for the replies. Sue thanks for the insight re the MST - I am pretty sure Anne was taking 60mg each time when she was in the hospice and then she asked for it to be lowered to 40mg as she wanted to be a bit more mobile and awake as she found she was sleeping alot! I definitely think that the pain needs to be under control and I too agree that nausea and pain come hand in hand as when one gets bad so does the other!

Good to hear you have been away with Brian Laura! Hope you had a wonderful time, Brian's story truly is inspirational, glad to hear he is doing well!

I had a very honest talk with my husband the other night and he agrees that there is a possibility Anne is masking some of her symptoms to the medical team because surely if they saw her in as much pain as she is in when my husband visits then they would have increased the MST wouldn't they?! He spoke to his brother who also agrees that they have to contact the hospice to discuss it with someone as no one wants to see her suffer the way she is. He called and left a message yesterday and was going to try to speak to someone this morning, he has gone to his mum's now so I will find out more when he gets home later this evening. I just hope they can offer something to make her more comfortable.

I mentioned to hubby that I had read a lot about people's experiences on a forum and asked if he really knew what to expect.. I know everyone is different and I'm very much of the school of thought that knowledge is power and I know that he deals with things when they are fact, when they actually happen but I think I actually provoked a thought that it might be a good idea to do a little research. I just don't want him to be shocked by anything. He said that seeing her at the weekend, he's realised that he probably won't be able to spend christmas with her like we'd hoped, that we have less time than we'd prepared for and if I know one thing it's that this awful disease is sneaky and can surprise you at any moment.

Could I ask what people's experience is, towards the end is there a rapid decline like I've read?

Thanks everyone for your advice and support thus far, sending warm wishes to everyone!

Sam x

[Sammy-Lou]

Just a quick update, Anne didn't make it into the hospice on Friday for her check in the day unit as she felt too unwell to go! My husband spoke to the medical team who have suggested not upping the MST until she is taking oramorph 4 times a day (She tells us she is taking 3 times). When we visited on Sat she was in so much pain and very nauseous again, she actually didn't open her eyes or really look at us for the first hour and a half, then she took some oramorph and within 5 mins was able to sit up and she said "Oh You've had your haircut short.." I don't know whether she has started to get confused as I've had my hair like this the last maybe 3 times we've visited and she's commented on it before, or if she was in too much pain before taking the oramorph to really see me and so it wasn't until she was out of pain that she actually could focus on something other than the pain. Surely if she's in that much pain she should be taking the oramorph more thus needing to up the MST??! It was awful to see her like that, she said she was getting pains in her chest when she breathed in too? Worried this is the blood clots again?! She has eaten very, very little for almost a week now, maybe 2 small bowls of soup and nothing else as she says she can't face it. Oh and after speaking to the hospice they thought it sounded like she had a urine infection too, the GP has prescribed something for that and hubby is going over to stay with her again tonight and has said he will speak to the hospice again. I just feel like we are not really getting anywhere and it's probably because Anne is so stubborn but I just wish she could be more comfortable! Feeling helpless and totally stressed out by it..

[Catherine]

Hi Sam,

How are things now? Did the urine infection get sorted out? My mum has had 2 in the last few weeks and they have completely floored her. (Sometimes literally). I'm so sorry that it is all so stressful and hard for you at the moment and really do hope things improve soon. Is your mother in law in less pain? It makes me so sad reading all the posts about people in pain. I'm sorry I can't be of any use with pain killers, unless we're talking headaches and then I am spot on.

Sending you lots of love and hugs

Catherine xxxx

[Sammy-Lou]

Hi Catherine,

Sorry I haven't been on for a while, what with Xmas coming and my little girl hasn't been sleeping, I've really had no time for anything. Anne is still in pain and constantly nauseous but still fighting on, the meds they gave her for the urine infection seem to have helped, I was concerned that this was a sign of her kidneys failing?

Despite the duretic she is filling with lots of fluid again and the ascites is clearly visable in her abdomen although not sure about her legs yet. She is now taking another painkiller along with the MST and Oramorph although it is not getting rid of all the pain she says she is ok with being in some pain and discomfort if she is still able to get up for short periods (long enough to take herself to the bathroom etc).

My husband spoke to her about Christmas and together they decided we will have Christmas day at my brother-in-law's house as it is close to her house so she can be brought over for dinner (not that I imagine she will manage to eat) and then be taken home to rest as it will probably be too much for her to cope for more than a couple of hours. Oh I just hope that the meds can make her comfortable enough to enjoy some time with the family...

I will be thinking of everyone over the next week and praying everyone can have some cherished moments with loved ones and for those who have sadly lost I hope you can get through the festive period with as little heartache as possible.

A friend of a friend sadly lost her 2 year old daughter last week to a neuroblastoma and my heart is breaking for her this christmas.. A cruel world we live in, my thoughts are with every person affected by cancer in any form...

Love and best wishes to everyone, in my thoughts xxx

[charney]

Hi Sammy Lou

I was wondering how things were, my thoughts are with you,

Big Hugs

cheryl xx

[susikus]

Oh Sammy-Lou I hope you get to have a good Christmas with Anne to look back on and cherish in the years to come. Such a hard time of year to be ill and in pain. My thoughts are with you all. Take care and enjoy every moment you can, with love, Sue, xxx

[Sammy-Lou]

Thank you both Cheryl and Sue, sending you both, along with all the wonderful people from this forum as easy a Christmas as possible.

I'm not a religious person but I find myself praying, begging for this Christmas to pass without sadness, Anne is deteriorating quite rapidly in health and heart now. Last week her carer sadly did her last shift with Anne before retirement which was an emotional time for both, Anne seemed to lose hope alongside this and was very teary and told her sons she doesn't want to and can't live like this anymore. Absolutely heartbreaking to see my wonderful strong Mother-in-law reduced to a shadow of herself, a former nurse who has spent a lifetime caring for others and now no-one knows how to make things better for her.. I feel overwhelming sadness about what is going to be our hardest Christmas and I hope we get through it without all constantly being reminded it will probably be our last together...

The smiles tomorrow might be fake but what else can we do..

Sending love and strength to everyone, you will all be in my thoughts..

Sam xxxx

[PCUK Nurse Jeni]

Hi Sammy-Lou,

So sorry to hear about Anne. Sorry to hear that she is seemingly giving-up hope.

It is a difficult time of the year for loved ones who are unwell and for those caring for them, and with the retirement of her carer, it is bound to have all manner of emotions attached to it - maybe fear of getting another carer who she will get on as well with etc...

As you say, it could be your last Christmas together, and I am sure that you will make some memories whatever.

Hope it goes OK and is not too difficult for you all.

Kind regards,

Jeni.

[DRAD3]

Hi Sam - I do hope you manage to have a happy Christmas. It is difficult not to become totally overwhelmed by sadness, I understand, but somehow finding peace and enjoying the simplicity of sharing precious time together will hopefully be enough for this year. I am thinking of last Christmas when my husband knew it would be his last and I do remember it as one where we were just happy to be together - it is tinged with sadness but it also makes me smile. Will think of you along with others who are finding this time of year difficult.

Deb

xx

[Catherine]

Hi Sam,

I really hope you have managed to have the Christmas you had planned. I am so sorry that your MIL is in so much pain. It breaks my heart that in this day and age there is so much suffering and sadness. This really is a cruel disease. You are in my thoughts xxxx

[Sammy-Lou]

Thanks everyone. I hope Xmas passed without sadness for you all..

I really must try to update things more often as there is always too much to tell.

I'm so grateful for spending the couple of hours we did with Anne on Christmas day, it looked as though she was going to be too unwell to manage at all and at 11am she was in terrible pain and not joining us at my brother-in-laws but after some oramorph she managed from noon for a couple of hours. I doesn't matter that she couldn't manage to eat but she was there!

She has been in such terrible pain and the ascites seemed to be worsening, her tummy is so swollen.. Following a trip to the day unit at the hospice we have the news that her MST is being increased, finally, something I've thought needed doing for such a long time.. they also told her that the swelling in her abdomen isn't all ascities.. It's at least another 3 tumours... on examining her they could be felt..

I was just starting to feel positive that she had surpassed her prognosis of 3 months given at the beginning of september.. now we are looking at up to 8 weeks.. 8 weeks is nothing and everything.. it's so much more than we expected but so little time.

My husband is being strong and not showing any emotion, he only said it was more time than he expected too..

Cherish every moment..

Sorry I haven't had time to catch up on everyone's threads, I will try my best to get a look over the next few days, I follow many of your stories and think about you all often..

Sam xx

[laura]

sammy so sorry that mil has deteriorated, but pleased mst increased, please be, that she is kept OUT of pain, my thoughts are with you all, strength and love coming your way laura xx

[charney]

Sammy so sorry your MIL is not good, Im glad you got to spend christmas Day with

her my thoughts are with you

Big Hugs

cheryl xx

[susikus]

Thank you for the update Sam, so glad you got to spend a little of Christmas together. I hope the coming weeks are as peaceful and as comfortable as possible for your mil. She definitely does not need to be in pain.

Lots of love

Sue

xxx

Edited January 11, 2013 by susikus

[DRAD3]

Hi Sam - So sorry to hear that things are so difficult but it was lovely to hear that your mother in law was able to be with the family at xmas - as you say, moments to cherish. All I can say is to reiterate what has already been said about being insistent that the pain management is given absolute priority now. It is so important that your MIL is made as comfortable as possible - time is precious and should be pain free and peaceful. Thinking of you and wishing the very best for you all.

much love

Deb

x