A wonderful woman my mother has died.

[millyjo]

My dearest most beloved mother passed away on the 3rd July 2009, having been diagnosed with inoperable, metatastic PC on the 15th April 2009.

The shock of being told the diagnosis, put mum into what I can only say was mental shock. From the moment of the diagnosis she stopped living.

The 75 yr old who looked 55, was trendier than me, fun loving, active, physically fit , beautiful, intelligent women became someone I didn't know.

My brothers and I gave up jobs, and our time to be with her during her darkest days.

Despite knowing the prognosis, she insisted on having chemotherapy, which as her billirubin was high, her liver disfuntional was maddness really. But we supported her in that wish, it gave her something to keep going for.

Another wish was that she was cared for at home, and not left to vegetate in a hospital or hospice. This as a family we ensured did not happen, despite her having to have blood transfusion and IV treatment, we arranged for it to be carried out at home, by a team of intermediate community nurses. They came day and night, and were so very supportive and understanding.

Her deterioration was rapid and devastating for us to witness, her voice changed and she stopped talking as she once did...animated and witty.

A woman who thought nothing of walking 15 miles, was now unable to walk to her commode unaided. Her beautiful feet swollen and painful. .they were beautiful ,as many had told her. Even though they were puffed up like melons, I washed them and painted her nails as she liked.

When there was no other option than for her to go into hospital, we spent 24hrs with her, much to the amazement of the nursing staff. Nothing was too much for her, she was wonderful.

Even up to the end as with any relatives of an terminally ill person, we were waiting for that miracle, so when we witnessed her last breath it was unbelievable. The only consolation was that we were all with her and she was at home. and as we had to wait 5 hours for a doctor to register death, this gave us time to say our goodbyes.

The horror, which is the only thing I can call my mum's last few months, I fear I will never forget. My dreams are filled with the nightmare. But fortunately she was never aware of how I and my brothers were feeling, we always smiled and tried to jolly her along, kissed, cuddled her and told her that we loved her, all the time,

She was Welsh and loved to sing, and once in an Operatic Society. To honour this we arranged for a Welsh Male Voice Choir to sing at her funeral, which she would have loved. We left the crematorium curtain open so we could see her, and she could she us. .so many people commented on the idea being wonderful. So I, we, hope that after the months of suffering she went through, her farewell was pleasurable for her.

Sorry this seems to sound a little self pitying, but it is as many of you must feel or have felt, and somehow it feels theraputic to be writing it down.

Condolances to others who have gone through this.

millyjo x

[millyjo]

Not having a good day at all today, feel demotivated and cannot stop myself from crying. I have been through mum's clothes, smelling them caressing them. The whole house is so full of her.

I don't know whether I said but my partner and I lived with mum, so it is difficult to have any respite from the terrible memories of her illness.

It has only been 5 weeks since she passed.....god where does the time go?, but my partner has sugggested that I redecorate, or alter some things in the house to help me, but just going through her toiletries in the bathroom reduced me to tears.

Have even taken to spending the odd night on her bed.....am I going mad, am I ever going to get over this?

Tears are rolling down my face whilst I write this, my partner is at work and I don't feel able to talk to anyone else about my feelings.

My one brother has gone abroad for two weeks, the other does his own thing without little thought for my well being...feeling sorry for myself maybe?

Sorry to burden you all with this as you are going through your own tough times.

Take care

My thoughts are with you

love millyjo xx

[pauline]

hi Millyjo

you are not going mad just through a really emotional time i know exactly how you feel i lost my wonderful dad just 2 months ago and even though we knew he was going to die it is such a big shock when it happens i'm still in shock now utter disbelief that he has gone every now and again i will cry for no reason at all he was the one who fixed everything for us ( my husband bless him is not int diy ) so the other day to my horror something went wrong in the house and i called my mum to ask for dad to come and fix it then we both bust into tears how stupid is that ??????? i miss him so much every bone hurts with the realization that i'm never going to see him again.

like your mum p/c took hold very quickly from being told he had IT to him passing away was only 14 weeks.

i'm sending my love to you at this time

Pauline XX

p.s if you would like to talk to someone pm me and i will gladly give you my number XXX

[rach]

Hi Millyjo,

Reading your message made me cry.... I lost my mum on 18 June, approx 6 weeks after her diagnosis. She went in for a biopsy and suffered complications and never came home. She died 4 days after my 29th birthday. My partner has been brilliant, dropping everything to be with me at my mums bedside.

Everyone said i coped remarkbly well, getting on with the arrangements etc. I gave her a beautiful send off. The first few nights back at the home, where i lived with mum, were very strange. I wanted to change little things so it didn't feel so much like she was just going to walk back in the door. I had a horrible dream one night, where I imagined she came home and i was so happy and then when i realised the reality, i felt so stupid and upset. I try and talk to my boyfriend sometimes but he doesn't know how i feel. Unless you have experienced it no-one knows what you're feeling.

It has hit me harder now the funeral is over, when you have time to try an get your head around things. I am so sad that she has gone, but take comfort in the fact that her suffering is over and she was spared the fight against the chemo and the cancer. I sometimes feel completely empty and lost and despair that i seem to have lost my way and don't know what to do. The things you have mentioned are completely normal. I have never experienced pain like losing my mum.

For her service I put togther a memorial book, covered in pictures from her life, and inside it I have put a copy of the tribute I read in the service. I also have the poems that were read out as well as a copy of the order of service. I got people to write in it about mum or any sentiments they wanted to express. It is a good way to create lasting memorial to your mum, that you can read from time to time, and reminisce. When I read my mums book, athough i am sad she has gone, I am happy and proud to have had such a wonderful and beautiful mum who touched the hearts of so many.

Please feel free to keep in touch, even if you just want to vent your frustrations and feelings. This website and forum has been a great source of information and support to me at this time. You are not alone and my thoughts and best wishes are with you.

Rachel

[Guest]

Hi millyjo,

I’m so sorry to hear about your mom. And I really understand what you are going through right now!

My mom was diagnosed on 9th April and died unexpectedly on 18th July, so all very similar to your mom. I understand totally how you feel about not being able to explain these feelings to anyone; I really believe that you can’t comprehend the horrors of this until you have lived it.

I certainly don’t think you are going mad. I live in Holland and am back home now so for me its different things that ‘trigger’ me off. Like not receiving text messages from my mom and not being able to pick up the phone to her every time my son does something new, and most of all not being able to ask her opinion on things! But while I was still at my mom’s house, after the funeral I also slept in her bed, on her pillow. And I opened her toiletry bag (she was in hospital when she died so we had to bring her things home with us) several times just to get that smell of her deodorant and shower gel.

They say that things get better with time so for now I’m just hanging onto that hope and trying to take each day at a time. Please know that you are not alone and there are people who know what you are going through.

Take care and stay in touch!

Love Lisa xx

p.s. its perfectly ok to feel sorry for yourself – I have those moments aswell!

[millyjo]

Hi all,

What can I say, othe than thank you so much for all your kind words and support, despite you all having your own pain. You are all selfless and wonderful people.

They say time is a healer, but at the moment it is passing so quickly, but my pain feels worse.

As you say Lisa each of us have our own triggers for our tears and saddness, as yours the thought of not being able to telephone her, and mine is to shop with her, to laugh with her over a glass of wine, to cuddle her, even to argue with her and make up, to spend days with my nephews her grandsons, the holidays to Tuscany, the Lakes, the morning shout of hello from our bedrooms. . .the list is endless isn't.

Unfortunately mum passed away just before my nephews 12th birthday, which he in his innocence asked me 'do you think grandma had remembered my birthday?'. . I told him 'there was no doubt she'd remebered as she loved him so very much. On his birthday I bought him a present from grandma, but had to explain that she'd forgotten his card. He cried and said 'that her passing should have been on national news', and my other nephew asked me 'when would he ever feel happy again?'

I'm whittering on again, apologies.

If you ever need to talk just give me a shout, as I don't want this all to be me me me.

Although have to say being able to post on here really does have some theraputic quality.

PC is one of life's tradgedies.

Love and condolances to all you beautiful people.

millyjoxx

[Nardobd]

Hi Millyjo

I just wondered how you were getting on and how your nephews are doing? I'm sure that it's all still very raw and painful and if you need to vent please don't forget we're here.

Love

Nicki xx

[millyjo]

Hello Nicki,

Lovely to here from you.

What a lovely person you are to take the trouble to care about others. . .you are an angel!!

How are things with Ted?

As for me, well things are as tough as ever, really had a bad week this week, finding it so diffiicult to even talk to people, other than my one brother. . I'm glad I have him.

We seem to be on a level, as to how we are dealing with the loss of mum, whereas my other brother my twin, who is living with me now, is being an absolute b.

Many hours I have spent just sitting going through photos, letters, post cards, mobile txts and even an answer phone message I received from her when she was in hospital...her voice wasn't hers, it had then changed. . . but she just asked 'where are you?''. . .I wasn't there!!

It is so hard not to beat yourself up about such things, I try so hard not too.

We have just booked a holiday in Tuscany for next year to scatter some of mums ashes, which if I'm honest I'm not totally convinced will be good for me, purely because we are staying in the very same villa we used to go to with mum. I've cried ever since I booked this morning. . .am I being silly.

My nephews are a lot better thank you, although still constantly aske about her, which is natural and healthy for them. I am very close to them anyway, so I have sort of taken over spoiling them that bit extra in the ways Grandma did.

With them being school holidays I have been able to take them out for days with my partner, whom they love dearly.

It is such a lovely day and all I can think about is her. . .

What a waste. . .

I hope everyone else is coping with their difficulties, am thinking about anyone who is going through it.

Love and god bless

Millyjo xx

[Nardobd]

Hi Millyjo,

I'm sorry to hear that you're having such a tough week. It's early days yet and I can completely empathise with finding things so very difficult, but I'm pleased to hear that your brother is helping. At the risk of stating the obvious, we all deal with grief in different ways and although your twin is 'acting out' (I think that's the phrase), he's hurting too.

I am sure that you're beating yourself up for no reason - it's clear from how you write that your Mum couldn't have had a more loving and caring daughter. When she made that phone call, you could have been dealing with other things for her, shopping, laundry, etc etc or even on your way to the hospital. I know it's tempting to keep that message but if it's going to cause you emotional pain then why don't you delete it in the knowledge that you couldn't have loved your Mum any more than you did and that the phone call is an unfortunate snapshot of that one moment in time, not a reflection on your relationship.

Of course you're not being silly about the holiday next year. It's too soon yet for you to be ok with these sorts of things but the Villa will bring back many happy memories and I'm sure there will be laughter mixed in with the tears.

I'm pleased to hear that your nephews are doing ok and it seems that they've done you a good turn too - keeping children entertained can be very absorbing. Even so, it's completely natural that some days all you will be able to think about is Mum and don't beat yourself up over that either! There are lots of cliches but I'm determined not to go there. Just be gentle with yourself and pamper yourself as much as you can.

Ted's doing ok, although he's having a bit of a problem with one leg and he's just recovering from a cold which means we haven't been able to do a lot since his chemo finished. I'm just so grateful that I have the opportunity to spend some real quality time with him - in that sense being unemployed has been a Godsend, although it has its downsides financially and mentally.

I'm sending some prayers your way and if you need to talk just let me know.

Kind regards

Nicki

[chinup]

Dear Millyjo

I haven't been around for a while but I just wanted to say how sorry I was to hear about your mum. You reminded me very much of just under five months ago when we went through almost exactly the same with my mum. She was so horribly ill at the end, particularly so when her voice went very strange in the last week or so. You talked about your mum's feet - just the same as my mum. She used to look down at her once slim feet in despair. It was my sister's job to rub and massage them with cream. My mum had gorgeous unlined skin (having unashamedly lavished only the very best beauty products on it for most of her life!) and it was my job to cleanse and moisturise it for her. Even though she was very jaundiced at the end I still did it and she really enjoyed it. But it was quite devastating to watch and I will be honest, I don't think I will ever get over those dark days. She also decided to have chemotherapy which in hindsight was a mistake and we wonder if it made things even worse. Anyway, her wish was to be at home but we were unable to fullfill that as she had uncontrollable symptoms, but my dad never left her side and was with her when she died, on her youngest granddaughter's birthday.

Five months on, we are all starting to feel a little better, some days a lot better and we remember her with a smile and other days something happens - like today I was searching through the drawers for someting and I found a photo of her that I hadn't seen for years, it hit me like a blow to the chest, sounds daft but I was breathless for a minute. I can't say things will improve quickly for you because they wont but I promise that you will start to find a way through which suits you best, all in good time. Everyone is different. As Nicki said, please don't put yourself through any additional grief by thinking you could have done more, you sound like a wonderfully loving daughter who did everything she could. Look after yourself, it does help to pamper and look after yourself and let others help out and share the burden. Make sure you are sleeping and eating properly, if not, then get some help from your GP and keep sharing your feelings. All the best to you XX

[millyjo]

Hi everyone,

Sorry I've not been in very often since my ma died, especially after all your kind words of support and caring you gave me at a difficult time.

I have tried to catch up with what's happening with everyone. . but so much has gone on since I was last on.

Whatever, my heart goes out to all those going through the pain and suffering of loved ones with PC, and those who have lost someone through it.

Ted I send you my love, despite not knowing you. You have the most wonderful woman supporting you, and I send my love.

Selfishly I now turn to me. . .I'm really quite a nice person honest.

I think things have got worse since my wonderful mother died, and my life has become quite pointless.

I met my partner in 1990, and from the offset my ma wasn't struck. A year into our relationship things changed between ma and him. . .infact they didn't need me around to enjoy themselves. Don't get me wrong he still loved me! What happened was that we became a threesome.

Ma and us became our life, wherever we lived, wherever we went on holiday, albeit the lakedistrict, Tuscany, afternoon drinks watching cooking programmes or eggheads we were with her.

My brother would telephone to say he was calling around and she would say 'Let's lock the doors'..lol. She loved him dearly, but we were having a good time.

My partner is having a tough time, not just with having to cope with me, but also having to cope with his own feelings of loss.

I've turned to a few drinks and diazapam, but feel more desperate than ever! Any suggestions please.

Thinking of you all.

love

millyjo

[Nardobd]

Hi Millyjo and thank you for your kind words - Ted will be reminded of them at appropriate intervals!

I'm sorry you're both finding things so very tough. When someone you love is in distress, due to a situation you can't change, all you can really do personally is offer your 'presence and prayers.' Sometimes even that's really hard to do, particularly if you are both dealing with grief. So, it's time to get some support. You've obviously seen your GP, but they can do more than hand out a prescription. If you think counselling would help, then your GP may be able to arrange that.

Another option is Cruse, the leading Bereavement Support Group in the UK. They are keen to provide support and offer information, and advice too. You can ring their helpline on 0844 477 9400 or email them on helpline@cruse.org.uk. You might want to look at their website first, which is www.crusebereavementcare.org.uk/index.html

It sounds slightly strange but Macmillan may be able to offer some help. They have a group called "not alone" which is for people who have lost their loved ones to cancer (community.macmillan.org.uk/groups/not_alone__after_the_loss_of_a_loved_one_/default.aspx) NB there is no "www." before community. Macmillan also offer bereavement counselling in some areas.

Whatever you decide, we'd like to hear how you're getting on from time to time and it goes without saying that your friends on this forum will do anything we can to help.

Sending love and prayers in your direction.

Nicki xx

[dorabcoelho]

HI<

after few months without browsing on this site , today I missed my mum who died 19th July. I miss her everyday but today I just couldn~t stop crying and thinking of her. That was when i decided to check the site again and saw your messages.

I understand what you feel as I~ve been through the same.

Lets just thinking about the good times and when the sad moments come around just change for a moment of smile and laugh.

Our mums are in peace and they are free of pain. Their feet are not like melons any more and I am sure they can now talk. My mum stopped talking 4 days before she died.

I just hope that you can find comfort and lets be positive and have a good memory rather than the sad ones.

The love we carry will be always with them.

love

Dora

[Trevor]

Millyjo / Dora

I was touched by your notes on here. I'm not sure if this would help but have you come across a website www.muchloved.com .

Here you can create your own on-line memorial to your Mum's. You can upload photos, music,poems etc & make it available to all her friends if you wish, or just keep it to yourself.Maybe when you get down you can just log-in & take a look to remind yourselves how great your Mum was when she was in her prime.

Take care & God bless

Trevor

ps - in the words of the immortal Bob Dylan - "She ain't dead, she's just asleep"

[millyjo]

Hello everyone,

Sorry I haven't replied to your posts, but finding it hard to cope with everyday things at the moment, and using the computer is last on my list. . .self pity again lol

But now I'm here, and will take this opportunity to say once more thank you for all your kinds words of support.

It has been five months since ma died, but it still feels like yesterday, and I still expect her to walk in the door.

I do feel that living in her house and having to relate to her friends makes it difficult to move on. Her friends/neighbours she knew for 40ish years, all the kids grew up together, we went on holiday, weekends, birthday parties and so much more.

One friend whom I love dearly has I feel found it difficult, where she was a frequent visitor to our home, I see very little of her. She lost her husband just after we lost dad, and since then she and ma spent many hours together, and on the day of her funeral she spent the evening with me and partner and after several drinks broke down as I'd never seen her before. At the time we vowed we would keep certain things going, such as walks, weekends away etc., but the reality is somewhat different. She came around this week, the third time since ma died with some mince pies and a xmas card. I chatted as normal and she stayed for a while, had a glass of wine and filled me in on all the goss as she would have with ma. Despite this, myself and my partner who was there at the time felt she seemed a little awkward, she is obviously finding it difficult too.

So what am I whittering on about lol. . .well I suppose I'm trying to highlight that despite my attempts to be normal and cope with things, others are struggling with ma's death and as such make normality difficult. Not a criticism of them, but a indication of firstly how loved ma was, but also my feelings of desperation are not unique to me.

Things get easier? . . waiting for that day to come, but sure it will.

Xmas has been cancelled, not just my decision. Unfortunately, my sister-in-law lost her uncle 2 days ago, whom she was very close to. My brother is trying to cope with his loss and also support her. . .bless him, he's a beautiful person.

Oh flipping heck I'm whittering arn't I? lol

How is ted Nicki?

Best go and get the day started.

Love and god bless

millyjo xxx

[Nardobd]

Hi Millyjo and it's great to hear from you again

I'm sorry, but not surprised, to hear you're still finding things difficult. Still "baby steps" and all that. I don't think time makes it easier, just a little less rawly painful (if rawly is a word - well it is now!)

Your Mum's friends will be a little awkward - they are trying to think of how you must be feeling and no one knows the right words so they just avoid the situation as much as they can. The particular person you mention might also be feeling embarrassed at breaking down in front of you. Just keep going and I'm sure that eventually you'll break through.

As for normalcy, I'm not sure that the new "normal" will be the same as the old one. That's natural and not necessarily a bad thing. We grow from our experiences (good and bad) and learn from them. So, it's going to be a little different but eventually you'll find that a minute, hour or day seems "normal" even if it's different from before your Mum passed away. That then becomes the new benchmark.

Sorry to hear about your sister-in-law's uncle too. It's a really hard time of year to lose someone. I'll send out a prayer for her.

Ted's ok. He had a little hiccup in that his stent in the bile duct got blocked and he's been jaundiced again. The stent's now been replaced and we're just waiting for the jaundice to disappear so that we can get some accurate blood results. Scans show that the tumour may have grown slightly but is still considered stable because the tumour is so hard to differentiate. We're back on the "wait and see" rollercoaster but we're both keeping positive.

Don't ever worry about "whittering". We all do it and sometimes it helps just to vent.

Keep us up to date from time to time.

Nicki xx

[millyjo]

Hello everyone,

Apologises for not being here too support as you all were in my time of need.

I do check the site to see how you are all coping with the illness and as a carer.

How is Ted doing? How are you nicki?x

Every day is consumed with my thoughts of what I can do to, firstly help others suffering from the illness, and secondly how to support carers and family.

The nightmare of my mothers illness haunts me, I wonder when i will feel better mentally.

I have been speaking to my mothers relatives, and it seems that this illness may be genetic, as my grandmother died from pancreatic/liver 1972, my auntie died from the same 2002. So what does my future hold?

I assume it can be genetic?

Read the post from Susshi Sue, not being pesimistic but think worth following up?

Anyway, despite lack of posting on here my thoughts are with you.

Love

Millyjo xx

[Nardobd]

Hi Millyjo

Just knowing that people such as you, Penny and others are checking the site now and then is really encouraging and supportive in it's own right. Don't worry about not posting - support can be given in lots of different ways.

Ted's jaundice has gone and he's feeling pretty well in himself. We recently investigated a clinical trial but once we had all the information felt that the pros were outweighed by the cons. Like so many other carers, the emotional part of me wants to scream "No! You have to try everything!" but at the end of the day, if it's going to affect his quality of life and/or not provide the cure we're desperately searching for then I have to accept his decision and support him in it. Logically, I know he's made the right choice both for him and us as a couple.

I'm fine and still very determined that we'll beat this horrible disease somehow!

As for what you can do for others, I'd encourage everyone to look regularly at the PCUK fundraising page (www.pancreaticcancer.org.uk/PCFundraisingevents.htm). There are things going on all the time and I notice that they currently have a DVD for sale. I don't know whether you work or belong to any groups (church, hobbies, whatever...) but, if so, what about obtaining some of the PCUK merchandise on a sale or return basis and ask your colleagues to purchase some?

If you're talking about taking time to give support personally, what about contacting the team at your local hospital and just offering your services, either as a hospital visitor for patients with PC who don't have family nearby or, perhaps, in other ways such as accompanying patients to appointments if they need it? Have you thought about volunteering at a local Macmillan centre?

I'm so sorry that you're still suffering so much. I know that it all seems like a nightmare when you lose someone so close - when I was just 17 my fiance died and I remember going round convinced that I would wake up soon! As I said before, the new 'normal' comes gradually, so give yourself some time and don't be so hard on yourself.

As Penny said, only a small amount of those with PC contract it genetically. Do, though, contact the Europac team who can give you the help and support you need on that score.

Don't be embarrased about asking for support here either - the charity is for everyone affected by PC and it doesn't stop when bereaved!

Sending thoughts of strength and comfort your way.

Nicki xx

[LittleMissOptimistic]

Dear All,

I am deeply sorry for your loses and I totally feel for you.

I lost my mother Febuary 2010, I was 22 years old then.

I still feel the sorrow and pain just as hard as I ever did.

I started a new thread here recently:

http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=4&t=484

Please check it out and lets support each other, as only we can truly understand each other.

Know that your loved ones will want you to be happy and keep walking.

Stay strong.

Ella

[millyjo]

Dear Ella,

Thank you for your kind words, and also condolences at the loss of your mum.

You were young to loose someone so dear, my heart goes out to you.

It is good to have support of others and this site and people like you.

As you I still feel the pain of loss and also the horror of the fast and tragic loss of loosing my mum.

I hope you are ok.

Millyjoxx