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Nardobd

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Hi Vicky...just wondering how you got on with the Macmillan nurse today. Are things any clearer for you?


Best wishes


Nicki

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i nikki just to let u know my lovely partner passed away yesterday morning he seemed fine monday a bit bloated and just accepted that he needed to start making plans which he was going to do tues tue morn he couldnt move and had to go to hospice where we decided to get wed which was lovely but also very sad the disease just moved on so rapidly and i lost him wed morning now im so lost and just cant accept it we was supposed to have months not days the only comfort i have is i made sure i was with him when he took his last breath thank you all 4 your kind support and advice b4 this i shouldnt be organising a funeral i should be on my honeymoon with the man i love and always will the kids seem so lost but going to do my best by them as that is what there dad would of wanted


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Joined: Fri Apr 23, 2010 11:24 pm

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Vicky,


Have been reading your thread and was so sad to see your news that your partner had been given such a harsh diagnosis. I have just seen that he has passed away - can't possibly imagine how you must be feeling. Just to say there's lots of people on the forum thinking about you. Keep using it and find support from it.


thinking of you at what must be such a difficult time


x

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Hi Vicky


I've been reading your post over the last week and your latest came as a shock. I'm so terribly sorry to hear your sad news. I thought myself and Blue were young to have this on our shoulders (41 and 35) and I cannot imagine what you are going through.


Be strong and fall apart if you need to. You know there is much support here for you.


Take care


Clair

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Hi Vicky,


I replied on another thread so thought I would send message again. I was so sorry to read about the loss of your partner at such a young age. The effects of this cancer are devastating and the pace and aggression of it means you hardly have time to get your head around it. I am 29 and lost my mum last year, on 18th june. 4 days after my birthday. She was only diagnosed a month or so previous and died as a result of complications from CT guided biopsy. I know this probably doesn't help much, but you are not alone and you are in my thoughts. I for one never imagined my first proper close experience of death and funerals would be dealing with the arrangements for my mum, but you will find the strength to give your partner the best service possible, and may even surprise yourself with the courage you may find lurking within you. Be strong.


I have also started a memorial book for my mum, so that I can show any future children that I have what their grandma was like. I have put pictures in it, and cards as well as messages from the service that I organised. Everyone is different but it may help you focus on the good things and help you and your kids to talk about your husband and keep the good memories alive, and provide some comfort when the waves of grief roll in. It is so tough and such an emotional rollercoaster but do not be hard on yourself and allow yourself time to work through it. Lean on family and friends, it will be hard going for them too but I tried to keep my feelings to myself and it has proved harder that way.


Find out if the Hospice your partner was in offers counselling for families. They may send you information after a while but if you need it before hand just ask. I have gone to support groups as well as individual counselling sessions and it has helped a great deal to try and process the varied emotions and thoughts I have felt along the way, and have made some good friends in the process, who I find it easier to talk to as they have been through the same experience.

My thoughts are with you and your children and your families. Please do not hesitate to get in touch or use this forum to express your emotions. Everyone on here is very supportive and it is a good place to write and let out some of the emotions.


Rach x

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Oh bless you Vicky, I am so very sorry to hear of your husband's passing. I lost my mum just over a year ago to this most vicious of diseases - she lived a year after diagnosis but sadly was one of the ones who never improved with treatment or had any real quality of life. It was a year of false dawns and she really suffered.


You are so young to be facing this with little children. I lost my first husband to cancer when I was just a couple of years older than you and I found a lot of comfort from joining a Young Widows online support forum, it was American based but there were many British members (including several who turned out to live nearby). I made a lot of new friends, surprisingly some whose situations mirrored mine almost exactly. They dragged me through the dark days and eventually I was able to move on in ways I never thought possible. I know it is hard to comprehend right now but you will come through this terrible time. Be patient with yourself, one day at a time. If you are offered help, practical or otherwise, take it.


Like everyone else here, you are in my thoughts. X

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vicky1389

thanks 4 ya support lifes just so cruel i just cant imagine being on my own never had to since i was 14 its just started to sink in as still feel like he coming home in mornings it hits me hardest i just dont seem t function without him if it wasnt 4 family and friends i dont think i would get up at mo they helping me out so much kids really misbehaving aswell which i know isnt there fault with all thats going on im haunted about the last day i cant eat as everytime i do i just be sick im trying to 4 my kids sake but just cant when will i stop feeling like this i cant go out as dont want to see people didnt think about life insurance and things like that most of our money went into his accounts which i cant use as dont want to get done 4 fraud they wont help til death certificate which i get wed but wont be able get straight away luckily got enough in my account 4 now dont know where to start with getting benefits and funeral grants its all really scarey and i shouldnt be thinking of this now but its reality and got to try and get things sorted to be honest if it was not 4 the kids i would not be bothered i dont know whether to see my doc as just am a wreck and getting worse i hate him 4 leaving me and the kids but i now its not his fault and he is not in any pain but i feel so robbed the day he died we was supposed to be taking the kids out to make memorys 4 them i feel that after the liver biopsy he got worse now i find out the biopsy wasnt successful anyway after that he felt more pain and on monday the mccmilan nurse said his liver was starting to swell i will never 4give the hos 4 not just leaving him alone if they knew it was terminal which is what they knew weeks ago so y didnt they tell him then and let us have weeks how can we be told on thurs that he had months then he be dead on the wednesday its just not fair the hospital said not to worry bout the kids getting it because its rare in young people but my gp said more the case as he was rare so he going to send off genectic tests of them as dont ever want to go through this again my biggest fear is of death im glad i was with him at the end but it will haunt me forever my oldest son who is 10 will not even talk about his dad or look at pics of his dad im worried he will end up lashing out where he bottling it up sorry about my rant xxxx

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Oh Vicky, I just want to give you a big hug.


It's so very, very hard for you right now but I'm glad that your friends and family are helping out. It will get easier, but it takes time. Anger is part of grief, so allow yourself to feel angry and deprived - it's not just self-pity.


Ok, practical things:


Seeing your GP - Yes, yes yes! The GP will be able to give you medication in the short term, both to help emotionally and possibly for the sickness (but also see below). If you want counselling (for you and/or any of the children) your GP will be able to open doors for you on that score and if you need short term help with practical things then they may be able to refer you on to an appropriate organisation for that.


Eating - you know you have to eat, but don't try to force yourself to eat full meals if it makes you sick. Smoothies, milkshakes, snacks, fruit, nibbles will keep you going for a short period. Better to eat those things and keep the nutrients. You can't go on like that for ever but it's better than nothing just for the time being. Speak to your GP too.


Benefits and grants - this is a huge area. There are organisations which specialise in this and you might want to look at the following websites:


Turn2Us - part of the Elizabeth Finn Care organisation and a registered charity which specialises in ensuring people get the benefits and grants they're entitled to: www.turn2us.org.uk/default.aspx


Direct Gov - the government's website. The benefits section is http://www.direct.gov.uk/en/moneytaxandbenefits/benefitstaxcreditsandothersupport/index.htm and special information regarding bereavement is http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Bereaved/index.htm


Genetic testing - there are positives and negatives and you have to be sure that you could cope if you get the news that one or more of your children is genetically disposed to the disease (incidentally that doesn't mean they definitely will get it, just that it's more likely). It's such a personal thing but you have to do what is right for you.


The hospital, biopsy etc. Again a huge issue but this is one which can be dealt with when you're ready. I would recommend speaking to your local PALS (Patient Advice and Liaison Service). Most large hospitals have a PALS department in the hospital itself but if you want to find your nearest go to www.pals.nhs.uk. They can organise a meeting with the doctors where you can ask whatever questions you have and will even accompany you if you need it.


Finally, don't try to do it all at once! It all takes time. Be kind to yourself and take all the help you can get. If there's anything I can do, just shout.


Love

nicki xx

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Hi Vicky,


Sorry to read that you are really struggling at the moment. I went through similar feelings when my mum died and it is completely natural to feel the things you do. I also felt angry about my mum leaving me behind to deal with everything, followed by sadness and guilt for being angry with her, when she is no longer around. I hope you have friends rallying round to help you, and if you don't (some will back away as they will not know how to deal with it or be afraid that they can't possibly help), make sure you ask them, even if its only something small, it will ease the burden a little on you.


The Hospice should be able to give you a pack about what to do when somebody dies, its full of useful information and places to go for support, and will also provide details about practicalities etc.


Funeral costs can be paid for out of your partners estate (bank accounts etc). This is the only thing that such money can be used for until the probate and legalities are all gone through. My mums accounts were frozen once I had notified the bank that she had died, but as sole executor I was allowed to draw money for funeral arrangements via the bank. There is a lot to take in and I had relatives giving me lists of things to do. If you are unsure about what things you need to do then pelase get in touch.


With regards to your children, it is understandably a tough time for them too, considering you had so little time to prepare for this. Ask at the Hospice about what they can provide for kids. My Mum was in the Pilgrims Hospice in Thanet and they offer bereavement support and family days for kids to help them cope with their feelings and remember the good days and memories.


Please get in touch if you want any further advice.


Rach x

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thanks all for listening to me rant the other day funeral arrangements are all arranged for the 18th which im dreading applied for all the benefits that im intitled to which i hate as never had to rely on benefits before but know we need them im still finding day to day things hard to cope with kids still getting very tearful about it and my oldest son wants to know so many answers about cancer which i cant give him i just feel empty without him as we always been together since i was 14 and dont know where to start with life at mo got so much support which im gratful for but also feel like im in goldfish bowl and dont get to think for myself properly i know they mean well but i wouldnt do anything silly as im all my kids av got now and im not selfish but i think half the time they think thats what im going to do and they stay with me til l8 then come bk really early in the morning i want to tell them just to let me breath a bit but dont want to throw there support in there facces as they mean well the hardest thing the other day was choosing the flowers i couldnt physically do it hope u guys r all ok xx

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Hi Vicky


We're here for when each other need to let off steam so rant away!


Day to day life is so very hard at first, I know. Just keep plugging away at it and it will become easier to deal with. If your son has questions could he or you post them here - we'll help if we can and if we can't we'll at least point you in the right direction.


Everyone around you is concerned for you, knowing how difficult you are finding things. I know it feels a bit like a goldfish bowl but, as you say, they mean well. If you need a bit of breathing space, find an activity they can't participate in - go for lunch with a friend (on the basis that the conversation will be about normal things), join a class of some sort (it doesn't matter what it is, it just gives you some time) or whatever.


Don't forget we're here for you and my thoughts are with you and the children.


Nicki xx

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Hi Vicky,


You are doing well - and you may feel like you are on auto-pilot and just being controlled etc - but let it run it's course, it may feel strange - but you need it at the moment, and your family need to be able to help you through this too - they love you.


As for your eldest boy asking questions, or for any of your children really - check this site out, it's very good - gives lots of advice and support and is specifically for bereaved children:


http://www.winstonswish.org.uk/


Thinking of you x


Juliana

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  • 2 weeks later...

Hi Vicky,


I hope that the service went well on the 18th and that although it must have been an extremely difficult day, I hope that you feel a little more able to tackle the next stage of this extremely tough challenge. It is a very slow process and all the emotions will take time to process and work through.


Just wanted to let you know that we are all on here still thinking about you and your family.


Take care and you know where we all are when you need to let off steam!


Rach x

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hi duane had a lovely service the amount of people who turned up to show there respects just showed how loved he was our kids done him proud that day just taking things day by day thought i was not doing to bad til yesterday my aunties husband passed away with no warning he left to small children which set of a trigger i think then was speaking to a close friend whose mother has just found out she got stomach cancer but they think they found it early enough and the bad part is i felt jelouse that duane didnt have that instead im really starting to miss him and cant bring myself to take kids to out as know thats when its going to hit me because were not out as a family people keep offering to take us out but i just cant as when im at home its like im in a protective bubble and dont have to think about it as its like he is in hosptal or at work my oldest had his football presentation sunday and was really hard when he got his trophys as even though he had alot of people cheering him the 1 person who should of been there is not our local paper asked to do a small tribute to duane and it ended up on front page which was nice in a way but also bad because were normally private people since then lots of people ringing and sending letters asking me if i want to talk about it i do if it highlights pancreatic cancer more and makes people aware of it as i had never heard of it b4 this and always assumed that every cancer you could treat with chemo i knew there was a chance you could still die but didnt realise how fatal pancreatic cancer is the more i read on it the more angry i get that not enough gets done just wish there was something i could do my heads in limbo my mind at mo is like it keeps running film projecter and keeps running the month that he died its a month 2moz that duane died and a month 2day that we got wed im really trying to be strong which i have been but 2 day it just keeps hitting me hope you guys are all ok sorry again about my essays xxxxxxx

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Oh Vicky, you are going through a hard time. I'd love to be able to give you a hug, but a virtual one will have to do.


I'm sorry you've had a couple of bits of bad news which understandably acted as a trigger for your own feelings about losing Duane. It will get more bearable. After all, it's still early days yet, although I bet it feels like a lifetime to you.


Don't forget we're here and we understand. Vent away whenever you need to.


Nicki xx

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*hug*


You are doing so well, under the most horrendous set of circumstances. Knowing that I am going to leave my 3 kiddies when they are so young is totally soul destroying, I take comfort in knowing my husband is an amazing father, shares the same morals as me and we have the same parenting ideas/standards. Also, both set of grandparents are always around to help, I know my children will be loved and looked after. I am sure Duane felt the same way about you, and you are doing a great job. Don't rush yourself or your kids into going out, getting back to normal etc - you need this grieving time, it is far healthier to go through it and slowly resume normal life as and when you feel comfortable and able, than try to rush into normality before you are emotionally ready. Take your time.


Juliana

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Vicky


sending you loads of hugs. I was so upset to hear about Duane and was wondering how you were.


Just take each day at a time, if you want to go out, then go, if not stay in. Maybe go out to dinner in the next town to you, where no one knows you. I know sometimes when my hubby wants to chat to his friend, they will go for a drink where people don't know them, then they can talk freely without people looking or listening.


As for being angry about this type of cancer, its funding, cure and the devestation it leaves, we all feel that way and I repeat, take each day one at a time, if you want to get involved you can, but take time for you and your kids, you will know when you are ready to take the next step.


Take care and keep in touch


Clair

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  • 1 month later...

hi all just thought id drop u all a line been reading some of the posts on here lately it just breaks my heart that not enough gets looked into pc and seeing how you all cope best you can me and the kids are coping best we can im starting to learn things that i never had to do before which is hard but i know duane will be proud of me the kids are a bit of a struggle my oldest keeps getting into trouble at school but im hoping once they get councilling it might calm down a bit im going to do a skydive for pc research even though im terrified of heights i think this cause deserves it i had never heard of pc til duane got diagnosed and didnt realise how little money went into research just feel i need to do as much as i can to help others im still going to see my local pal as think more help and information could of been given to duane and dont want other families at that hospital to go through the same as duane at first they sent him home on wrong meds which caused him great pain he never had a oncolagist we got told no way would it be hereditary but since all this i have learned different and also they shouldnt have done the liver biop i know the outcome probably would of been the same just think the hospital needs to be more aware of it and know more about it as they didnt seem to know alot hope you all are ok

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Hi Vicky and thanks for letting us know how you are doing. I'm sure Duane is very proud of you and looking down from whereever he is with a huge smile!


I think you're very brave doing a skydive - have you let salma@pancreaticcancer.org.uk know? she might be able to russle up a little more sponsorship for you, or at least publicise it.


of course everything is still a challenge right now but at least you are dealing with it all. I think you're marvellous.


Love

Nicki x

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  • 1 month later...

hi all just thought id write a quick note me and kids slowly getting there it was duanes birthday on the 30th so i took the kids to where me and him went when we was younger then we let of 29 lanterns off as my youngest wanted daddy to have candles in heaven was very emotional and was dreading it but we got through it and i know duane would be proud i have been given the hire of a hall for pancreatic awareness week as really want to raise money for pc but not sure what to do just wondered if any one had some good fundraising ideas the hall is not that big and i have never done an event before i have actually started learning to drive as i will be able to take kids out scarey but im doing it im also doing a walk for my local hospice on the 18th of september have not booked my sky dive yet but am defo going to do it and my 2 oldest boys are doing the big fun run in october to raise awareness i know it sounds alot but feel pc deserves so much more money into research thank you guys for listening to me rant before still get like it and miss duane so much but i know he would want me to concentrate on the kids which im doing hope you guys are all as best as can be xx

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From Moderator


Thank you for sharing your story with us, we are all very sad. Though proud to have seen your strength


I will get in touch with the people at PCUK dealing with the Awareness Week activities to get in touch with you about fund raising activities you might want to consider for your own event. I am sure others will want to give you their suggestions.


As far as PCUK research activities are concerned, you probably know that PCUK awarded Research Grants of about £400k recently in 2010 encompassing the basic science of the disease, diagnosis and new treatments for its treatment. I understand that the planning for the Grant giving activity for 2011 is now underway so fund raising activities are vital.


In the meantime, our thoughts are with you at a sad time.


Ray Hope

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Dear Vicky: Just wanted to say that I think you’re a total star to be fundraising with so much else on your plate. Sorry I’ve no Big Ideas to offer for your ‘event’ (have you asked the kids/family? Might be some inspiration going on there, or as someone else was saying try the charity’s office.)

Best of luck with whatever you choose to do and let’s hope it gets in the papers! Big hugs, Jen

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Hi again Vicky


I have been in touch with the people at the PCUK office about Fundraising.


Please can you email enquiries@pancreaticcancer.org.uk. Tell them what you are proposing to do and they will send you a Fundraising Pack.


We all wish you good luck with the effort as I know know funds are always badly needed.


Ray Hope x

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  • 2 weeks later...

Hi Vicky,


I haven't been on here for a while but thought I would pop back on to catch up with whats going on with PCUK. I read your post about all the things you are planning to raise funds for PCUK and to raise awareness. As well as your own personal achievements, learning to drive etc.....


I think you are doing amazingly well and Duane would be so proud of you for doing something so positive out of such a nightmare situation. I organised a music concert this year, called music4life (visit http://www.music4life.ukcharities.com for more info) to mark the one year anniversary since losing my mum. Unfortunately the weather was rubbish and the event was not as successful as I had hoped, but I am thinking of doing it again next year (have inherited my mothers stubbornness and determination not to give up!)


You are absolutely amazing to be doing all the things you are doing, it has taken me a year and although I feel things are a little easier I still miss mum terribly, but that keeps me focussed on trying to make the most out of my life.


You should be proud of yourself for what you are doing, an inspiration to others, especially juggling everything around your kids!


Keep going with all your efforts. My email is [Removed by Administrator]if you would like to keep in touch or if I can help you with any fundraising bits....


Best wishes

Rach x

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