Author Topic: Lasting Legacy in Wife’s Memory - HELP ?  (Read 7399 times)

spudair

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  • Diagnosed: wife diagnosed feb 2013
Lasting Legacy in Wife’s Memory - HELP ?
« on: January 11, 2016, 09:19:19 pm »
Folks,

A few months back I entered my full story in the forum detailing our Amyloid Journey

Through the forum I have had many a query answered
been to amyloid and myeloma meetings
And met up with many friends and contacts.

Since my wife’s passing I setup a charity to create a lasting legacy
This Legacy would implement a missing service in my wife’s memory that would help other amyloid sufferers and help with our family grief..

When my wife was going through her journey she said it was a long lonely scary
Journey full of surprises and with little knowledge of amyloid she was unsure what lay ahead of Her.

Its now 2yrs and 7 mths since the charity was setup and I struggle to come up with a good idea to implement a missing service that’s much needed by the patients.

Things I have attempted but have fell on deaf ears..

I wanted the local hospital to have a NHS conference and invite UCL-NAC
They said that was not something they do in-house
I then approached the university where I work and they said we have nursing conferences we don’t really do this type of presentation.
So nobody interested in educating

I also suggested why not send a medical student to UCL-NAC on an annual education visit
they would come back from their visit put a paper together and circulate current Amyloid knowledge to various hospitals
the charity would fund 1/2 and our hospital would fund the other half of the cost of the trip.
initially the hospital personnel thought this was good idea, but hospital staff member left hospital for job change and replacement person binned this idea.

My wife’s diagnostic delay caused her untimely death and I thought if I purchased a light chain analyser for the hospital this would prevent delays in the future
These machines are £3.8k and £25 per user slide to check serum for Amyloid.
I would worry this device would be purchased and locked away in a store
And never used.
I felt if the doctors think amyloid during investigation there are cheaper alternatives to confirm the presence of amyloid. But they first need to think about the possibility.

At our meeting of the Scottish Amyloid support group in Falkirk last year
One of the patients suggested the presence of a support line that you can link
Up with other patients and talk through your treatments and feelings
On a phone network in a virtual environment.

My wife got a lot out of her trip to London and talking to other patients over the
Two day visit. (something I could not provide)
This facility could hopefully provide the linkup in a virtual sense (only an idea)

Some people live a distance from Glasgow,Edinburgh & Ayrshire where I live
And other than the London assessment visits they may not get a chance to buddy up with other Patients suffering similar symptoms.
If patients are fairly weak they may not be able to travel to London at all.

The main reason for putting this entry in the forum would be to get ideas of what’s missing for other patients on their journey and what resource could be considered that would make your journey more bearable while your not in contact with London.

The charity money started its journey at my wife’s funeral so at this stage I would rather start something in her name and create a new helpful service rather than donate to general fund.. I am struggling a little bit with grief and I need to do this to help me on my journey.

So get your thinking caps on and generate some discussion so I can progress
To implement a service that does not exist at the moment for the patients during 2016.

Also if the virtual presence of a non hospital meeting area is a viable option what
Ways should it be setup.
A mediator that knows all patients and hooks up suitable buddies manually (like a switchboard) 1-1
Or a service you phone into like a chat room and you chat to whoever is in there. (a meeting room of many people)
or volunteers that are there as a listening ear like amyloid Samaritans

I have no idea myself on setup and options but the service providers could assist here.

I have been mulling this over for months and I could not get my head round even composing the forum entry.. but take what you can from my entry and respond
With ideas..

Thanks for reading entry

Regards

Brian.

Hope this entry does not distress anyone..
our hospital was very slow to act on wife's symptoms or offer expected support to the patient
I need to work with all the past failures to make the process better for future patients.



Lesley

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #1 on: January 12, 2016, 12:20:16 pm »
Hi Brian

I'd like to offer my sympathies first of all to losing your wife to Amyloid. I understand grief and the grieving process. Only four months after I was diagnosed with Amy, I lost my husband to a heart attack.  Grief is a very heavy load to carry and I can understand your quest to make people aware of the very illness that took your wife.

I think unfortunately a stand alone quest in making people aware is very difficult. Unless you are touched by this disease there is no understanding, indeed I have now started to call this cancer to the 'outsiders' as that is a word they can relate to.

A company that my son works for has kindly chosen Amyloid as their chosen charity and they have started a Just Giving Page. They also knew my husband well and he is also mentioned. That is the only thing I can think of as they have a wider audience than the individual.

Hopefully there may be some more imaginative suggestions to help you.

Lesley


patpinchin

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #2 on: January 12, 2016, 04:04:43 pm »
Hello Brian,

Your despair and frustrations come through very clearly in your account of your efforts to establish a lasting legacy to your dear wife's very sad and ultimately tragic experience with amyloidosis. I think that all of us here can identify with parts of your story.

Your wishes to establish an enduring legacy of benefit to patients is most heartwarming and it is indeed very sobering to read that your robust efforts have not been met with a positive response. I think it is very difficult indeed to convince a hospital dealing with thousands of patients with more common life threatening diseases that a rare disease such as amyloidosis
affecting perhaps only a few patients in a decade, warrants the kind of recognition you would like. A lone effort such as yours, vigorous and well intentioned although it has been, sadly often does not have the rewarding outcome you had planned.

As someone who has suffered with this disease since 2003 and during that time seen great advances in drug development and the level of awareness available, I write with a certain amount of experience.  The user friendly informative NAC website we have today bears no resemblance to its predecessor. The creation of the NAC forum and another more long standing one in the US, sufferers now have access to more accurate and reliable resources than ever before. They are much used and valued by those to whom they appeal. We can make contact with others mutually affected in a way which didn't exist a few years ago. Consequently experiences are now shared and sufferers frequently forge personal friendships beyond the forum via phone and/or email.  Several of us who contribute here have done that and appreciate it immensely. Whilst there are always ways to improve, I am not sure that given the widespread geographical location of sufferers, these platforms could be bettered. Furthermore Scottish and London Amyloidosis Support groups have been established and hopefully more will follow. Myeloma UK support groups widespread throughout the UK also welcome amyloidosis sufferers. MUK provides a thrice yearly free newsletter AL Amyloidosis Matters to which all can subscribe: zara.gilmour@myeloma.org.uk
Myeloma UK sponsors the annual Amyloidosis Infoday which had its highest attendance ever last year so that too is gathering in momentum and helping sufferers and families. Myeloma UK also offers a free "Ask the Nurse" service by phone and email. Many sufferers use it for advice and have said how much it helps. The NAC and Myeloma UK's on-line resources are both excellent and a televised version of the Infoday presentations with slides by the NAC Consultants have been available for the second time this year on the MUK website. As I am unable to attend the Infoday, I really appreciate them and know others do too.  Already in existence, therefore, is a very wide range of professionally generated support facilities and resources for sufferers. However it would be great to see all of these resources more widely used. There is publicity about them on notice boards at the NAC, in newsletters, on the websites and elsewhere. Real efforts are made to engage as many people as possible but as with everything the best way is often by word of mouth from patient to patient. Awareness will grow exponentially, I am sure.

I am wondering if you have contacted Beth Jones at the NAC?  Beth has been managing The UCL Amyloidosis Research Fund (ARF) as long as it has been in existence. She is passionate about it, (as am I), very knowledgeable and mega friendly and helpful. I believe she may be the very best person to advise you: beth.jones@ucl.ac.uk tel: 0207433 2802. Her many years of experience in handling donations and legacies for amyloidosis could point you in the right direction. It maybe that there is some scientific equipment or a different but much needed expense to which your fund could contribute? It may not be possible for this to bear her name but there are other ways of doing that which I will come to.

 There are so many ways in which the ARF is used to the benefit of all patients. You only have to read the letter by Professor Sir Mark Pepys on page 9 of this newsletter to understand how much charitable donations are valued by and are of practical use to the NAC.
https://www.ucl.ac.uk/amyloidosis/nac/newsletters
You may have already read it but if so, I would recommend a re-read with fresh eyes in the light of what I have explained.  I think every patient would agree with me that purchases funded by the ARF free up much needed other monies to be spent on research and drug development probably the single most costly part of the NAC's work and THE one which patients and Doctors most urgently need.
 "Costly"  equals many billions of pounds. You might not have noticed that the regular very welcome and informative NAC newsletters patients and other interested recipients receive are funded by a legacy. These are published by Miriam and formatted and distributed by Beth before becoming available on the NAC website. 

The infrastructure for promoting awareness amongst the medical profession is already in place at the NAC with the work which Miriam is doing as Awareness Project Co-ordinator. This I think it is more powerful than anything an individual patient or family member can do because of the appropriate professional level and availability of resources provided at and by the NAC. There have been Annual UK Amyloidosis Network Meetings organised by the NAC for 7 years with the 8th taking place on  Monday 29th February in the Atrium at the Royal Free Hospital. It might be worth checking with Professor Hawkins' PA Jean Berkeley that the hospital where your late wife was a patient receives an invitation and information. j.berkeley@ucl.ac.uk  (0)20 7433 2816. It is almost certain that Haematologists and other Consultants of patients current and former do receive such information so a courteous brief letter to your late wife's Doctors there might serve as a gentle nudge to persuade a member of the hospital's medical team to attend. If you have a look at the last NAC newsletter 6 https://www.ucl.ac.uk/amyloidosis/nac/newsletters, you will read what a very positive impact these meetings are having on the profession throughout the UK. Funding for Doctors to attend such meetings is likely to be made through the the profession's continuing professional development allocation.

As my version of the disease keeps me more or less housebound I have found it therapeutic to work over the years with several fundraisers in support of their challenges. This has been both a privilege and inspirational.  It is worth noting that these have mostly taken place locally to where a suffer and/or fundraiser lives. Crucial I think both for local appeal and for widening the spread of awareness across the local community. You may find inspiration in reading about a range of fundraising activities for the ARF here:
https://www.ucl.ac.uk/amyloidosis/support-us/fundraisers
You may notice that one of the fundraisers has chosen a special piece of much needed scientific equipment and established a Cover Slipper Fund for which she set a three year target to raise £23,000 through a range of different events.
Food for thought for you perhaps?

I am sure you have been touched and moved by the posts on this forum of Alison Wheeler who very sadly lost her husband very soon after diagnosis and before he even made it to the NAC. Alison and her twin teenage daughters decided to do a staged walk over 3 years of the 206 miles of 
The Pembrokeshire coastal path in memory of a much loved husband and Dad. They also organised a fundraising picnic for family and friends. Both events were/are held locally in an area much loved by David well known locally for his professional work in nature conservation. The meaningful title of their challenge is: " Walking for David and for the end of amyloidosis".

I wonder if you have considered establishing an event locally such as a Fun Run to be held annually over a range of distances and so open to all from children to grandparents on or near a date significant to your late wife, eg her birthday. Family and friends would I am sure help you organise it. Most importantly for you and loved ones the event would bear her name. There would be an entry fee and you could distribute leaflets about amyloidosis to participants and spectators and add this link for everyone to access examples of how their money might be spent:  https://www.ucl.ac.uk/amyloidosis/support-us/where-does-your-money-go
The monies raised could then be donated to the ARF or banked towards the purchase of some new equipment needed by the NAC. A perfect and ongoing way to support the ARF financially and raise awareness of amyloidosis locally.  There is one such event held locally on a beach near me every Christmas Day in memory of a young man who tragically lost is life at the age of 16, 8 years ago, to a brain tumour. Gaining in popularity, each year the event attracts an increasing number of participants who have to wear a Father Christmas costume...or the best of that design they can muster! A great time is had by all, the memory of Alex is perpetuated and a large amount of money donated to a national brain tumour charity. There is publicity in the local press and media. A great amount of money, interest and awareness is generated. Out of tragedy and loss has come much positivity, love and enjoyment from an event for a local person held in the area where they were known and loved for a Fun Run which will benefit current brain tumour sufferers throughout the UK.

As explained above and also by Lesley, it is usually a more fruitful way of honouring someone's memory through local fundraising by adding to something already strongly established, namely the ARF. It benefits all patients and families, and most importantly, also supports the outstanding work of every member of our wonderful NAC team.  That way better treatments and awareness will reach patients by the most efficient and prompt means possible.

Apologies Brian for this long epistle! I wanted to address as many of the points you raised as possible. I hope it has been helpful.  :) :) :) :)

Good Luck Brian.
« Last Edit: January 13, 2016, 09:43:58 am by patpinchin »
Pat

georgeturner

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #3 on: January 12, 2016, 08:06:09 pm »
Hi Brian,

I know how much you and your daughter miss your wife and have been frustrated in your efforts to leave a lasting legacy to her, something that might prevent other families having to go through the pain that your family have had to cope with.
I hope other patients, families, friends and caregivers will give you some ideas on what they feel would have helped them to get a quicker diagnosis or to help them cope with amyloidosis.
I have been very lucky in getting a quick diagnosis and referral to the NAC, but I know others like your family have not be so fortunate.
Your idea of a virtual meeting place where people could speak to each other is something to think about. As you say, it would require a mediator to link people up and a fair bit of organizing. We have both met with Myeloma UK and they have helped us in setting up the Scotland Amyloidosis Support Group. It would be worth contacting them again to talk about the practicalities of doing this.
Lesley and Pat have come up with suggestions well worth considering too. I'm sure others will suggest a few more options.
I hope you can come to the Support Group meeting this Saturday, where we can discuss things with you.
Slainte Mhath,
George

Lesley

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #4 on: January 13, 2016, 01:43:10 pm »
I hope I can 'talk' from both sides of the fence here. I think Brian that you and I both lost our husband/wife around the same time.
I know, for me, once I had fought chemo and STC, along with grief,  I started to think of ways to raise awareness of Amyloid.
Trouble is, people are ignorant and want to remain so as its something that just isn't close to their hearts... until it becomes so!

For me the fantastic support of Ellen from Myeloma UK, not to mention of course the forum and the 'friends' I made here and also on the American forum.

This forum, for me, has been a huge prop but it took a while to take off and that was with all the backing and information they have. I think a virtual forum would be very hard to police and I guess would be costly. Possibly monies which could go towards much needed research/equipment?

Its so very hard when you lose a loved one and I truly know that first hand but Im just not sure you will be able to single headedly kick start a battle that we as a group find hard to understand at times, never mind outsiders.

I really don't want to sound negative but it seems a shame if you have monies donated that it doesn't channel its way to where its needed in the here and now.

I do hope you don't take offence at my comments Brian. I am truly understanding of the situation you are in

Lesley

patpinchin

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #5 on: January 13, 2016, 07:06:07 pm »
Hello Brian,
I am writing on behalf of my friend Martin Bolton-Smith with whom some forum members are personally acquainted and who many of us will know as the amyloidosis fundraiser extraordinaire. Martin has raised in excess of £23,000 for The UCL Amyloidosis Research Fund between 20012-15.  Martin is rather busy at the moment and he has asked me to express his thoughts on your post Brian. He also sends his most sincere condolences to you and your family.

Martin has been the main carer of his beloved wife Cheryl who has suffered from amyloidosis affecting multiple organs since 2010. It was a challenging 2 years of consultations with specialists and finally quite a long spell in hospital before Cheryl was finally diagnosed with AL amyloidosis and referred to the NAC. By this time she was very ill and has since had debilitating chemotherapies.  She is currently stable but only able to live a very limited life because of the incapacitating effects of her illness. Very soon after Cheryl received the diagnosis which was a significantly life changing moment for the couple, Martin decided he would spend the next three years fundraising for The UCL Amyloidosis Research Fund at the NAC.

His first thoughts were that it was a lack of awareness of the disease among the local medical profession which had caused the delay in diagnosing Cheryl. Something needed to be done to change that! He was determined that both his approach and the outcomes should be positive. With this at the forefront of his mind, he embarked on a number of challenges which dramatically changed his way of life too. "No-one said it wasn't going to be difficult", he kept saying to himself. He does not deny that it was a struggle at first but it did get easier over time. He had found something practical, energising and therapeutic on which to focus his mind.

Martin began with fundraising through social events at his local golf and bowls clubs. Both events raised rewarding amounts of money which he immediately banked via Beth into the Amyloidosis Research Fund. He felt that putting the money there straight away would earn interest and enable the existing fund to grow.

Then new ideas sprang to mind and Martin decided he would start running. This would involve a coaching and training programme to attain the level of fitness to run a 10km, half marathon and eventually a full 26 km marathon over the course of 18 months. At these events, Martin decided to enlist the help of friends to run an amyloidosis stall decorated with Amyloidosis Awareness balloons. It attracted great attention. He had a huge Amyloidosis Awareness banner made, acquired an Amyloidosis Awareness newsstand and his friends manned the stall with a tom-bola and cake sale. All small things but all the time raising more money for the ARF never left his mind. As a clear message to himself and all who saw him, Martin had a special t-shirt made to wear for his runs. Emblazoned across it in large red letters were the words, "The race is on.....for AMYLOIDOSIS".   Martin had always been a sports' spectator rather than a sportsman so this was a big step for him, but he completed all three runs with satisfying times and more money was banked in the Amyloidosis Research Fund.  Martin publicised his events in the local press, with a giant poster on the NAC waiting room wall, and in features in the two newsletters published by the NAC and MUK. Beth kindly printed off informative leaflets about the disease and the events for distribution at the NAC. A collection box for the marathon was kindly placed in reception at the NAC. Martin made the leaflets available in his taxi cab too.

Never short of ideas and inspiration, Martin then changed sports. He engaged a coach at his local swimming pool to help prepare him to swim the length of the English Channel in the pool in 12 weeks. Once this had been achieved and more money raised for the ARF, he bought himself a new bike and clothing so that he could train for the London-Brighton charity ride in the company of Cheryl's niece who joined him in this fundraising challenge for the ARF.
Finally Martin organised a major golf tournament at his club involving 24 teams of 4 players. In between the big events, Martin collected even more money by 2 cabbies' bucket collections at Heathrow airport starting in the early hours of 2 very cold wet/snowy February mornings. He covered the petrol pumps with Amyloidosis Awareness posters which he had had made to encourage the cabbies who pulled in for petrol to put some money in his collection bucket. Many of them asked about the illness and how it was affecting Cheryl which was very touching for Martin and Cheryl. More awareness was raised.  On both occasions £1,000 plus was collected in about 7 hours. To further add to the ARF Martin organised a fundraising summer BBQ at home and 2 clay pigeon shoots at a local club.

Looking back on these three very busy years of caring for Cheryl, working full time, training, organising and participating in this myriad of challenging events, Martin admits that they were exhausting and time consuming but at the same time cathartic and enjoyable. He also made lots of new friends. The work enabled him to come to terms mentally with the impact of Cheryl's illness in a way that was more manageable. Both he and Cheryl felt better able to cope. It had been fun, gave him and others pleasure but most importantly he had achieved his principal goal....to raise awareness of amyloidosis locally through fundraising for the ARF. By doing one he also achieved the other.

With his enthusiastic approach and eagerness to spread the word AMYLOIDOSIS locally as loudly and clearly as he could, I feel nearly everyone (including the local medical professionals ) in Martin and Cheryl's home town of Horsham and surrounding area has now heard of the disease. Hopefully if another patient presents with a range of vague or even definitive symptoms of the disease a swift diagnosis and referral to the NAC will be made.

It was during the first year of his enthusiastic charity work that the local press and media heard of Martin's work. Martin was invited to speak on local radio about it but most importantly to describe the disease itself which of course was unheard of to most listeners. Newspaper articles appeared and local businesses donated substantial amounts of money to the cause. 
Unsurprisingly Martin made headlines and became known locally as Mr Amyloidosis which made him quite proud and feel he had achieved his aim of raising awareness of the disease but also much needed funds. He was in no doubt about that. This was what patients and the NAC needed most. Martin had achieved his financial and personal targets. The money raised would support the wonderful work of the Doctors caring for sufferers and also the scientists in their challenging endeavours to discover better treatments and ultimately a cure for the cruel disease.

Martin sends his very best wishes to you Brian for whatever you decide to do to establish a lasting legacy to your beloved sadly departed wife.

Written by Pat on behalf of Martin Bolton-Smith
« Last Edit: January 13, 2016, 08:30:34 pm by patpinchin »
Pat

spudair

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #6 on: January 14, 2016, 12:13:13 am »
Folks,

Thanks for all reply's
very much appreciated
I know that working as a team will achieve so much more
I only wanted a named project that would keep Beth's memory alive for a little while
and also let the donators see where there charity money ended up.

I attend the Scottish Amyloid group meetup this Saturday in Glasgow
I will talk things out with the gang and reread your entries over the weekend.

again thanks for all time spent on responses.

Regards

Brian

http://www.rememberingbeth.co.uk



Pat do i owe you a new keyboard you have been on the forum for hours typing up responses.

Again Thanks


patpinchin

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #7 on: January 14, 2016, 09:34:44 am »
Yeah. Way to go Brian.  :) :)

 Take inspiration from the posts here, from what others have done/are doing.  With  the help of your great Scottish support gang get something going in Beth's memory.

Once again,  Good Luck.......and never mind my keyboard. It's holding up pretty well.  :) :)
Pat

patpinchin

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #8 on: January 15, 2016, 09:57:59 am »
Thank-you so much Brian for posting the link to rememberingbeth.

I found it very moving and thought provoking and would encourage all here to read it.
I now have a much better understanding of the type of long lasting legacy you had hoped for at your local hospital. Alas, it was not to be. Now you are looking for alternatives.

What has struck me most in reading the heartfelt tribute to Beth, is what a wonderful person she was; much loved by all whose lives she touched because of her joy of life, the care and love she spread and the energy and inspiration she demonstrated through what she did both personally and professionally.

 I can really appreciate the depth of your personal loss and also that of those amongst whom she lived and worked. Truly a person whose life was a gracious gift. How cruel that she and her loved ones experienced such suffering and that her life ended so prematurely.

In considering now how best to use the money donated so far and potential future gifts, I am sure that through whatever is decided upon, you will want to reflect Beth's wonderful qualities, the way in which she lived her life and her desire to reach out to so many. Beth must have been a very special person.

 May it bring you peace, pleasure and satisfaction, give enjoyment, interest and benefit to others....... donors, participants and recipients alike, and go some way towards fulfilling your wishes.
« Last Edit: January 15, 2016, 11:07:21 am by patpinchin »
Pat

spudair

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #9 on: January 20, 2016, 11:41:45 pm »
Folks,

Thanks for all the responses
Things are progressing in the background
I am in talks Now with Julian & Sir Mark
when I have finished the discussions and we decide how to proceed

i will post an update in the forum

Thanks again for triggering action & interest

and a big thanks to Miriam for putting me in touch with Julian & Sir Mark

would also like to thank the Scottish Support group for there support & interest
at our meetup in Snowy Glasgow on the 16th.

Regards

Brian

patpinchin

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Re: Lasting Legacy in Wife’s Memory - HELP ?
« Reply #10 on: January 21, 2016, 11:14:12 am »
That is such good news Brian.

Very best wishes that your discussions will lead to an outcome that will honour Beth's memory appropriately for you.

With the goodwill of the NAC behind you and their passion for awareness, together with the enthusiasm of your Scottish support group friends, I am sure they will.  :) :)

Pat