A Mother in a Million

[welshgirl]

hello everyone

I haven't been on here for a while but thought I would give an update on my mum.

She is back in hospital for the second time in as many weeks for the second lot of ascites drainage, the first drainage was 14 litres, yes WOW!!! I didn't think it would be possible to drain so much.

My poor lovely mum is deteriorating now, she's lost quite a bit of weight and doesn't seem to want to eat so much. They told us on Thursday that because the ascites has returned so quickly that they don't think chemo will work for her any more, the chemo should have dried the fluid up but it seems too late for that now!!! Despite everything my mother seems in good spirits, or seems to be whenever we are around!!!

I keep cheerful in front of her but cry on my way home from the hospital, I just feel so so helpless. She has been discussing her funeral with me and what she wants and doesn't want, I just cant bear it, even the thought of loosing her, I'm going to miss her more than I can start to explain. She is nearly into her 11th month after diagnosis, so I guess she's done well compared to some patients. I had not heard much about pancreatic cancer before my mother's diagnosis but OMG do I know all about it now!!!!

Its such a devastating cancer that just seems to eat the inside at a horrifically fast pace, I just cant get my head around it really, I'm losing my mother to this awful disease.

My mother is a fighter and I think she'll fight until the end, I just hope the end is a long way away, I live I hope.

[Slewis7313]

Hi Nia, I really am sorry to hear your Mum (and you) have had such a difficult time. Despite my surgery still being a non-starter, I am really well at the moment, but I see how my close family (like you) struggle to watch helplessly as things develop in a way that we cannot seem to control. I really believe that soemtimes being an onlooker is so much more difficult than being the person affected by this awful illness. As you quite rightly point out, we all seem to become experts on Pancreatic Cancer in short time after having no previous knowledge of this terrible thing.

My thoughts are with you and I hope your Mother's strength spurs you both on.

Take care

Steve

X

[Cathy]

Hi Nia

I'm so sorry to hear that your Mum is in hospital. She does sound like a real fighter though and it is good that she seems in good spirits.

I hope you are getting support yourself?

Please let us know how you are getting on when you have time.

Thinking of you

Xx

[welshgirl]

Hi Cathy, Steve and everyone else

Thanks for your posts, mum is about the same today, no real change but she has eaten quite a bit which is good, she's not keen on the hospital food so she has been eating what I've been taking in for her.

Her stomach seems rather big again today, the duty doctor checked her over and seems to think that there is still some fluid there. We will know more tomorrow when the main doctor is back after the weekend, I think she will need draining again! The doctor told us last week that she will need draining every week but by the looks of things she could do with a permanent drain.

You are so right Steve when you say that its very difficult to watch all of this happen, I am totally devastated that things are deteriorating at such speed now, I just feel so so helpless. I cant imagine how it is to be the patient BUT by GOD its difficult to watch my mother like this. We were looking back at pictures only yesterday of her just after diagnosis and she looked so strong and healthy, and if anything, overweight and now to this, its just so difficult to take it all in.

I'm being as strong as I can possibly be at present, I knew that when I needed it I would find the strength from somewhere but I really don't know how all of this will affect me after mum has gone!!!

I will keep you posted on mum's progress.

My thoughts are with you all.

Nia x

[welshgirl]

Hello everyone

This is just an update on where we are with my mother's illness.

She has deteriorated so much during the last week, its really unbelievable, it really is. Last Monday my father, my son and I took mum to the seaside to sit and look out on the views, she ate an ice cream and seemed okish. Well a week has gone by and she is unable to walk unaided or even eat or go to the toilet herself now!!! Its such a rapid deterioration, all the family are in total shock.

She sleeps a lot now and her body seems to be in spasms, it seems like a twitching sensation through her body. I've told the doctor and she has taken some bloods to check her calcium levels along with some other tests.

Has anyone ever experienced this with anyone at the late stages of this horrible disease??? PLEASE PLEASE, if anyone has can you reply to my post, this is a horrible thing to watch. Its either part of the process or has the cancer gone to her brain??? I am just at a loss to work out how she has deteriorated so rapidly, the change is so so dramatic!!!

I would like to hear from anyone who has had this experience please.

My thoughts are with you all xxx

[Slewis7313]

Nia, I am so sorry to hear of your dear Mother's deterioration over the last week. I am not in a position to help at all with information on your current situation I'm afraid, but hopefully others will be able to offer advice. I am however thinking about you / your family whilst you have to deal with the fallout of this horrible illness.

Take care

Steve

X

[belgrade]

Hello Nia,

I write this message to you as I am gathering my thoughts in preparation for my husband's funeral tomorrow. He died last tuesday, five months after showing the first signs of this awful disease. Unfortunately, he was unwell from the start and spent much of this time in hospital. I write this not to upset you, but to prepare you in some way. He was readmitted to hospital three weeks before he died, following a weekend of severe sickness. On admission he was able to walk, dress and manage his own personal hygiene, although he was quite weak and spent at least half of the day sleeping. He started to deteriorate quickly and was unable to eat very much due to nausea and spent most of his time sleeping. His calcium levels were high and he was put on IV fluids. He was exhausted and so thin that movement was difficult, even turning over in bed was a huge effort and he too, became unable to walk. He was plagued with hiccups which lasted for hours on end, but theese were treated with medication. In the week before he died, he was transferred to a palliative care unit in our local hospital. He had developed ascites which didn't really bother him. In the last few days he stopped eating completely and only took sips of water, the nausea and hiccups stopped and he wasn't in any pain, but the deterioration was very rapid. He was sometimes confused and his voice became a whisper due to his weakened state and he just faded away, giving a final wave just before he passed away. The palliative care team were wonderful and I shall always be in their debt for the wonderful care he received during his final days. Dave is now at peace and I feel a sense of relief that he is no longer suffering and my daughters and myself no longer have to watch how this cruel disease can cause such devastation.

My heart goes out to you Nia and anyone else who is coming to the end of this journey.

Hilary

[Cathy]

Hi Nia

I also have no experience to offer you I'm afraid, only our thoughts for you and your Mum and your family.

You haven't said that she is in any pain which is a blessing and I guess she isn't- it would be important to know that she is comfortable. I assume she is now in a hospice and getting care? I hope you are all also getting support.

Please know that we are thinking of you and thank you to Hilary for posting at such a difficult time. I hope your husband's funeral goes as well as it possibly can do.

Lots of love

Cathy xx

[welshgirl]

Hi

Thanks you very much Steve and Cathy and especially Hilary, oh I do feel for you, you much have gone through hell to watch your loved one suffer like your husband did, at least now he is free of all that suffering! I know it much be dreadful for the patient BUT it is also heartbreaking to watch a loved one suffer like they do, its awful.

My mother was diagnosed back in October of last year and has had a good 11 months if you can call it good after being diagnosed with Pancreatic Cancer but now I see a massive change in her, I now know that the end is not far off.

She is with me now, along with my father, they are both here with me so that I can look after them, I have my GP calling every day just to check in on progress and the McMillan nurse is calling tomorrow, she is lovely and very supportive.

I have found the strength from somewhere to look after my mother until the end, I wish I didn't have to do it but its a pleasure, she deserves the best care possible. I hope she doesn't have to go back into hospital now, I'd rather she passes with all her family around her. I have been offered carers to come in but I and my family would rather do everything ourselves because I think my mother deserves the upmost dignity as she ends her life.

I will be thinking of you Hilary, I'm sure you are heartbroken. Be strong, I'm sure your husband would have wanted that.

I will post again to say how my mother is getting on.

My thoughts are with you all xxx

[Cathy]

Hi Nia

I am sure your Mum must feel very proud of you. You are doing a fantastic job for her and your Dad and clearly a strong lady.

Much love

Cathy xx

[welshgirl]

Hi Cathy

Thanks for your kind words, I am generally a strong person, but I am finding this very very difficult at times but my GP told me that when the time came that I would find an inner strength from somewhere to cope and to carry on, I certainly have done, its amazing how you cope when the time comes. I will have time to grieve after my mother has gone but for now I need to be strong for her.

My mother has never complained since having the diagnosis, she has been extremely brave and never once have I heard her say that she didn't want something done. Tonight I put her to bed and she started to cry, because she has deteriorated so much during the last few days she asked me what had happened to her and why had she got like this. I hugged her tightly and stroked her head, this is breaking my heart to see her like this but I told her to cry and that there was nothing wrong in crying so we carried on crying together until she fell asleep in my arms.

I now listen to her breathing and hope each night that she will see it through to the morning, I am just going to miss her so so much!!!

I know I rattle on but I'm just getting my feelings off my chest, it seems to help me. Whoever reads this, I thank you for taking the time to do so.

My thoughts are with you all and once again thanks Cathy xxx

[Bee]

Nia,

I can only echo everyone else sentiments. You are doing an amazing job and I am sure your mum and dad are really proud of you. I have cried reading your posts and can only begin to imagine how you must be feeling.

I am thinking of you and your family, and hope your mum remains pain free , she is obviously surrounded by love.

Hugs

Bee xx

[KATB]

Hi Nia,

I just wanted to say I have been reading your posts and I am right there along with you as my dad is so very poorly too. I've not really posted on the forum but I know what you mean about writing everything down helping - I've been bending Jeni's ear daily for a good couple of weeks now but it really helps to verbalise all that I am feeling and thinking, even if it is in writing. She is being an amazing support - I don't know what I'd do without her.

If it helps at all, just know that you are not alone in this.

K

x

[PCUK Nurse Jeni]

Dear Nia,

I am really sorry to hear about your mum, and how quickly she has deteriorated. From our experience of looking after pancreatic cancer patients, then we can certainly identify with what you are saying about the rapid decline, as we have witnessed this in the hospital setting. It really is difficult as you say, to see things change so quickly. Incidentally, did you get the results of the calcium tests, and were they ok?

You are obviously very strong and very aware of what your mum would want, and keeping her at home with you is such a lovely thing to do. Its good that you also have the GP and Macmillan nurse coming in, and offering support to you also. And I think your gp is right, you do find a resilience to carry on, to do the necessary things to make your loved one comfortable.

I am not sure that we can, and you have had great support from your forum family, but if you think it will help, do not hesitate to email us at support@pancreaticcancer.org.uk.

Our thoughts are with you,

Jeni and Dianne,

Support Team.

[Cathy]

Hi Nia

Please feel free to "rattle on" and get things off your chest as much as you like. You are coping amazingly and, in my view, doing everything perfectly for your Mum.

We will be looking out for your post.

Cathy xxx

[Slewis7313]

How are you doing Nia? I know you are going through a very difficult time, but my thoughts are with you.

Steve

X

[InfoForMum]

Hi Nia,

I was scared to read your post as I'm at the start of a less advanced, but likely to be ultimately similar journey with my Mum. Far from regretting it you've given me hope I will keep coping when things keep blowing me away.

I hope you don't underestimate how much your support means to your Mum. What you are doing is quiet heroism and it sounds like you got your strength from your wonderful Mum. More than that, it sounds like you've passed that legacy on to your son (a 16 year old boy volunteering hugs suggests a whole shedload more emotional intelligence than the average young man!).

I'm guessing you don't want to be told how good you're doing, instead, like all of us, you probably just want this to not be happening, but do know you've done your best and be gentle with yourself and I wish you, your mum and your family strength and peace to get through whatever comes next.

Sarah

XX

[welshgirl]

Dear All,

Thank you very very much for all your support and kind words, it really means a lot to me.

Its been a while since I sent my last post but since then we as a family have been going through hell, still going through the hell as my mother is still deteriorating at a pace that I never knew was possible for any human being.

To update you on my mother, since my last post my mother has been in hospital once more for acites draining but is now so so weak that she is hardly able to talk, did not eat a single thing yesterday and has just left us in mind and soul. Its just a living nightmare at the moment, having to watch the beautiful, strong woman that she was turn into this frail little lady that I hardly recognise any more. I hug her so tightly at times I think I might break her but I hardly get anything back from her. I put her arms around me and I pretent that she is hugging me back, this is heartbreaking stuff.

I have the doctor call on us on a daily basis now, the district nurses and McMillan nurses have been great. They have offered loads of help but I have refused any carers or any other help as I feel that I owe this to my mother, to let her have dignity until the end. I want to do everything for her, bath her, change her pads or do whatever for her, its my responsibility and I will not let any stranger do those things for her.

She has lost so much weight now, going from a very strong woman to a frail little lady, its amazing how she has deteriorated in the last three weeks. I got her to eat just a little today but it was hardly anything. My fears are that it may well have spread to her brain from how she is acting, its certainly a strong possibility but I guess we'll never know now!

I have been sleeping on the bedroom floor for the last three weeks on a camper mattress, I hardly sleep anyway but I want to be close to her to listen to her breathing, I dread every night when I put her to bed because I always think whether its going to be her last night alive!!!

Oh why why why did she have to have this dreadful thing inside her, out of all the cancers she could have had, why this one??? There is no answer!!!

She has been an extremely brave lady and never complained of anything but I now know that her time is running out, my dear dear mother, I will miss her dreadfully, I'm dreading life without her, she was always there for us.

As for my son and husband, they have been fantastic, helping with her care, feeding her, carrying her or just sitting with her. I am happy that she has had the best care that a person could ever have, she has been well looked after, I'm proud of that.

I dread each day as it comes as she goes further and further away from us and I also know that it could be her last!!!

My thoughts are with you all and I will keep you posted on how things go.

Nia xxx

[J_T]

Dear Nia, I know what you are going through and my heart goes out to you. Times are tough at our house too.

Nothing can prepare you for it. Positivity left the building quite a while ago. That's not being weak willed, that is the brutal reality of what you see before you.

I wish you love and strength. Your mum is lucky to have such love surrounding her.

Bless you all.

Julia x

[Jwilson]

Nia, I hope it gives you some strength knowing that other homes are affected by this terrible disease and that we are thinking about you. I have a trickle of sweat down my face but have just helped my freezing cold shivering husband to bed with a hot water bottle and two duvets. You sound like an amazing, loving daughter who will have no regrets once her mum passes. You can do no more than you are doing already.

June W

[belgrade]

My heart goes out to you and your family Nia. I know exactly how you feel and it is a very difficult path to tread, but you will find the strength to carry on, however long the journey lasts. I'm sure your Mum knows she is surrounded by love and knowing that you are doing everything you can will be a comfort to you.

Take care,

Hilary

[KATB]

Hi Nia,

I'm right here with you. You're right, it's total hell - I am going through much the same at the moment with my precious dad.

The questions you ask I also ask myself - why has my lovely dad got this awful disease? Why is he allowed to suffer in this way? None of it is fair and there are no answers.

All we can do is be there and look after them the best we can. Hang in there and know you are doing all you can - the most important thing of course, loving our beautiful parents.

Much love,

K

x

[welshgirl]

Hello everyone,

I was trying to think when did I come on here last and it was the 4th October, well between the 4th and now, the 20th, my mother deteriorated as each day passed and sadly she passed away on Thursday, 17th October at 12:50!

I am totally totally devastated! When she was alive I was trying to imagine how it would be without her around but I just couldn't imagine it but now the reality has hit, she's not here any more. Her funeral is on Tuesday and its a day I was hoping that would never come!

The last six weeks has been very hard for me, I didn't mind caring for her at all, it was a pleasure and she deserved the best care but it was just seeing the deterioration in her on a daily basis that got to me, whatever I did was never going to change the outcome but at least I feel that I did the best I could for her.

She lived one year and one week exactly from diagnosis. Apart from the time where she needed a stent at the beginning and the last six week, she had a fairly good ten months with not too many complications, went out and about and lived a fairly normalish existence.

The turning point was when they told her that the chemo was no longer working, she just gave up, always put a brave face on but I knew her well, she was just doing that for us, her family but I knew that the fight was over. On Saturday morning she sat at the edge of the bed and hugged me tightly and told me that she was dying, OMG I felt numb, devastated and just speechless, what could I say back to that, I said nothing just hugged her so so tight.

I've had so many visitors, I have nowhere left to put any more cards but people are very kind but I would rather be left alone.

I went over to the chapel of rest yesterday and will tomorrow again, she just looks so beautiful and at peace, I just cant believe that my darling, kind mother is not here any more. My life will never be the same, never. She was my rock, the person that was always there, no matter what.

I wish you all the best for the future road ahead, its hard but you will find the strength from somewhere to carry on.

My thoughts are with you all.

Nia x

[KATB]

Hi Nia,

I'm so sorry to hear this. It sounds like we have been through a similar journey the last 6 weeks and my darling daddy passed away on the 12th. My heart is broken and I know yours is too. We can only know we loved them and did everything we could for them.

Look after yourself,

Much love,

Kate x

[welshgirl]

Kate

I am so sorry to hear your sad news.

Life seems so unfair but one thing helps me is that I cared for her up until the end, I was with her all the way from start to finish and I know that my mother will live on in me as your father will in you.

You take care of yourself also.

Love

Niax