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marie souter

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PCUK Nurse Dianne

Hi Marie,


Bless you, I saw your post about the fundraising, it sounds like you are a very musical family. Well done for being so active and I hope you don't mind me joining in on your post. I just wanted to say that our fundraising team can supply you with any items if you would like, that may help for your event or even advertising your event. If you would like any support from them or even a banner, notices or such, some pin badges to sell or anything else please feel free to give them a call or email.

(fundraising team: 0207 820 6705- fundraising@pancreaticcancer.org.uk).


Hope you are otherwise doing ok.


Regards,


Dianne

Support team.

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Hi Dianne,


Thanks so much, we had already been in touch with them we have received banners, balloons, collection tins, the works, just gotta work round the local businesses to drum up support.. wish us luck will let you know what we raise..


xx hugz

Marie

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Hi Marie


Thinking of you and hoping the day went absolutely perfectly - even if it did rain today I hope it brightened up for you and your Mum.


Love and hugs


Cathy xxx

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marie souter wrote:

> funeral today and the weather is terrible .. hope the sun comes out to

> shine on mom x


Dear Marie


I do hope all has gone as well as possible today as you laid your dear mother to rest. My own mum used to say "Happy are the dead that the rain rains on!" but she had some little saying for every occasion!


For your sake and for the comfort of all attending I hope it cleared up - we had a beautiful day for my brother in law's funeral a couple of weeks ago and it made life so much easier.


Thinking of you still


Love and Peace


Mike xx

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Hi guys ty so much .. the sun did actually shine as mom arrived at my door and this carried on til we said goodbye from the church to the crematorium to her wake .... she has some beautiful flowers and we managed to raise almost £100 for PC research in her name which we will be donating tomorrow .. we also managed to secure a meal for 2 for raffle at the pub we used for the wake for our PC event on 14th December AND we managed to also secure a weekend away for 2 at a cottage also at her wake for the event... we had lovely words said and I think we did her proud. Thankyou so much everyone for your continued support x

On another note if u email enquiries@panact.org you can actually receive PC awareness posters to distribute to doctors practices and chemists .. as the misdiagnosis can go on for years ... http://www.facebook.com/photo.php?fbid=739742882708982&set=a.165023010180975.44499.135525579797385&type=1&theater this is the link to the poster you can get and the PC team supply multiple posters for free xx

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Hi Marie


You may have seen from other threads that all was not unalloyed joy today as trial now terminated for me in the light of excess growth of a small lesion in my lung from 1cm to 1.4. causing small amount of fluid in lung but not enough to do anything about just keep an eye on. Chemo to continue as usual and today went fine with no side effects.


At least I've got 4 less tablets to take now and don't have to keep working out when I can take them in relation to when I've eaten or vice versa. I've been convinced I was only on the placebo anyway so not too bothered and have been reassured that though levels of monitoring will be less intensive I will still receive regular checks. I'll discuss increased visits to GP when I get back from Lanzarote.


Think my poor wife is more worried than I am as she has set great store by the trial, as indeed I have, but she has more difficulty grasping the new situation and can only see the downsides. I now have no need to attend hospital on my week off chemo and I'll still be seeing the Professor every 4 weeks so will make the most of my weeks off for good behaviour. As I'm no longer locked into the trial regime of Gemcitabine I've already discussed with him possible alternatives but am staying with it for now and maybe introduce something else if the "rogue little lesion" continues to misbehave!


You stay strong and take comfort from all you did for your Mum. Take what time out you can just for yourself and your close family and make sure you get some well deserved rest! My own daughter, a single parent, is a rock but has it very easy compared to you as I am still self-sufficient - I know she will be here when the time eventually comes but her brother is also a great support and unlike your Mum I am quite happy to welcome any outside agencies who can lighten the load.


Love and Peace


Mike xx

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Oh Mike I didn't see, I am gutted for you .. actually tears streaming down my face...my mom had had multiple tumors in her lungs but they actually never seemed to bother her too much, she wasn't even breathless. I had such high hopes for the trial for you but I am so pleased you are still on chemo. Is the fluid on your lungs causing you many problems? You are such an independent person and so strong I know you won't let this drag you down. Your poor wife, I think us relatives actually take news harder cos you guys are so resilient...I'm a wuss in comparison. I got up this morning with a bit of a chest infection and freaked out a little as I was in ICU last year where they saved my life as I had 3 relapses of pneumonia .. I shook off the woe is me then got on my raise money bandwagon for PC research and thought ... I aint letting a little chest infection stop me .. look at these people on here .. still battling on despite the adversity they face day in day out..I'm never gonna feel sorry for myself again..


Always thinking of you and your family

hugz

Marie x

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Marie, what a lovely tribute to your mum. I haven't done one for Ray yet but fully intend to.


The Tribute Wall is so sad but so uplifting at the same time.


Much love

Julia x

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Hi Marie


No problems from lung at all, walked my 4 Jack Russell's for a good hour in glorious sunshine yesterday and after a blood test this morning for genetic testing enjoyed quality time with my daughter. An hour at her home playing with her two new kittens with much hilarity watching them chase a laser dot round the room followed by a pub lunch with a friend of hers in my favourite Chester pub. Met my granddaughter from school bit of shopping and then home as she was asleep in the Car within minutes! Another super day.


Home to fused lights but only in living room and kitchen - beyond me so electrician calling tomorrow after my chemo. Life goes on and really looking forward to Lanzarote on Thursday. So pleased to hear that you're still throwing yourself into your fundraising but don't neglect your chest infection as your health is too important to disregard.


Love and Peace


Mike xx

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Hey Julia,


Oh did you see my mom on the tribute wall ... I love that pic of her she was so dignified on it ... let me know if you pop one on of ray I would love to see his picture as well xx

I think though we all have our own way and it takes time and your own time is good enough..

having a bad day today myself missing my moms lovely voice...in my dreams I'm still sorting her meds out and taking her to the loo, making her endless cups of teas, and me shouting at the docs .. wish I could have better dreams where we're doing something less .. based around her sickness .. time will change that.. is that something you find you're doing as well?


Hugz

Marie

xx

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Hey Mike,


I want to move to your house, it just sounds like its filled with joy..(hopefully you have your lights fixed now) funnily enough my lights downstairs all fused day before yesterday as well...How you feeling now? Oh my chest infection..bit of an overreaction on my part .. turns out my asthmas reared its ugly head now I'm home and surrounded by my 3 cats .. may have no choice but to re-home them ... also that info I got from pancreatic cancer research, the posters there are specific info JUST for the docs to raise their awareness and stop all this misdiagnosis there is a module on there they can all do which counts towards anything theyre working towards, the PCR team sent those out to me as well so I'll be making sure the docs in this area are given that module to complete .. the donations are coming in still for our funding night on dec 14th ... my sis has just had some amazing donations towards a raffle from her local cash n carry she uses for her business .. we're going to the big shops soon .. tescos asda, morrisons etc ..


hope your all still ok

hugz

Marie

xx

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oh what lovely pictures from the both of you, what a handsome man xxx

It's actually my dads memory today as well 4 years since we lost him to right sided heart failure and copd caused by hospital negligence .. mom to misdiagnosis for 2 years ...

Feel like I'm disconnected and floundering .. its horrible without your parents it just feels like the glue who holds you all together is gone .. spending today surrounding myself with all his favorite things xx

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Hi Marie


I understand what you mean. It must be so hard to lose 2 parents close together (as 4 years isn't any time really is it?) and today will feel a very poignant day having just lost your Mum too. It will take time and there are bound to be wobbly moments on the way.


Julia and Kate - thank you for the links. Kate - your tribute brought tears to my eyes.


Cathy xxx

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ty so much Cathy, it really doesn't feel like I came to terms with my dads death yet when we had moms diagnosis and another terminal illness to battle so, you're right 4 years is nothing considering I had 43 years with him .. feels like I ought to spend all my time today thinking about him as I had no time to focus on his loss whilst looking after my mom so although mom is entering my thoughts almost every second I am doing all the things dad loved and today is going to be a sci fi day as dad was a trekkie, I shall leave a seat for dad beside me with his fav sweeties and a pint there .. and imagine mom sitting on the other side rolling her eyes lol ... sparing a thought for all those who have lost xx

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Marie thank you so much for your message on the tribute wall <3


I can't imagine losing both parents, it's hard enough losing one

I am really struggling at the moment and not having a good time of it. I've distracted myself for the last 6 weeks doing fun stuff, going out etc. but I came down to earth with a bit of a bump at the weekend and it all seemed to hit me so there have been lots of tears this week.


I have no idea how you get through something like this - there is so much to process. It's not just the fact that he is gone but the fact that he got it in the first place, the decisions that were made throughout treatment, what he went through towards the end, what we went through as a family alongside him, the conversations we had etc. etc. So many layers to this that I don't know where to start or even how to.


I've got family to focus on but it's hard.


xxx

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I know exactly what u mean its not just their passing and your loss its everything u couldn't process as your focus is to keep your loved one going .. Everything will happen in its own time there is no logical flow to how your grief will hit you. Anger is my primary focus anger at her misdiagnosis and things that happened all through her care nevermind the last few days. I would really love to talk about this kat but it has to be someone who has already lost their loved one ... I'm sure admin would give you my email address if u want to just go blurgh like I do ... I'm here for u regardless tho x hugs Marie

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  • 3 weeks later...

Maaan I am so sad ....you see everyone getting on with their lives .. whats supposed to be a happy time and I just feel so so so lost ... I'm floundering miss my 3am cuppas with mommy where I'd dry her tears and hold her close she'd put her head in the crook of my neck and I'd stroke her head til her tears stopped and she would then sniff blow her nose and say 'can i have another nice cup of tea pet?' we'd then talk for at least another hour about nice things, we'd talk about everyone from me jeanette jan and john, the grandkids how proud she was of ALL of them her great grandchildren, how pleased she was she got to see little Dominic born, her brothers and sisters, her mom and dad her lovely John my beloved dad. Aw man mommy come back man even for a minute I miss you so bloody much I'd give anything to see your lovely smiling face your cheeky grin ... sticking your tongue out at me, complaining about me, you used to say 'I don't know what I'd do without you' and I would say back 'there would never be a world where you would ever have to do without me' .... I would think when you said that, 'What am I gonna do without you though??' I pushed it down and choked it all back....I only cried a couple of times in front of mommy, I was there when she was told she had cancer and it was inoperable, her little face ... and twice more in the early hours ... we would talk and I would have tears falling from my eyes as my heart would bleed as I told her ... 'you're my best friend the best mom, I'm going to be lost without you mom I don't know how I am going to be without you, your so much more than just my mom so much more' and she'd hold me and mop my tears and say, 'I aint going anywhere yet I'm fighting this, I promise I intend to be around a long time yet.' She would say she was worried how I would cope without her and I had to promise her I would go on and not fall apart like I did when dad died .... but how do I do that? I'm trying to to hang on to my family, my husband my lovely kids and grandkids, trying to find something to hold onto, but when am on my own and my mind strays to her which it ALWAYS will... I feel such loss such despair .. I try to imagine mom and dad happy together all healed in mind and spirit I hold onto my grandchildren and hold them close remembering they are part of her and I wanna hold them even closer...this is what my mom gave me the opportunity to have .... wish you were here mommy wish you were here love you more than words actions deeds gifts all the money in the world than all the stars ..... come back I wish you would come back you and dad x

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