A year of Fundraising events for NAC...

[BeckyJane]

No one on her will know me (except Pat Pinchin) as I'm not usualy a forum person.

Pat suggested I share my story on her as I will be fundraising for the NAC after I had to visit there for tests in the beginning of December this year (2016).

Briefly about myself -  at the beginning of 2016 I was a healthy 36 year old (mother of 2) who loved going to the Gym/Cycling/Running/Boxing/Weight lifting etc etc (I'm sure I am hyperactive). I have always wanted to do charity events - Since the age of 17 I have wanted to do long distance cycling as well as marathons for charity. 2015 I was meant to do the Cross Wales Walk (44miles) but as always - life/kids/job got in the way and I put things off (yet again). I have done one half marathon (2011 - Badly as ran in new shoes. My time was over 2 hours - very dissapointing for me). I assumed I would get around to more at somepoint -  eventually.

Things started to go wrong sometime near the start of this year. I went to donate blood but was turned away as iron was low (was feeling perfectly fine). GP said it was really low and gave me iron meds that made me soo ill (damaged my stomach). I went off food completely as was always vomiting. From then onwards was always ill. Joint pain that went as fast as it appeared, swollen ankles after an ant bite that never went away... 6 months of going to GP with new symptoms that couldnt be explained. Eventually was refered to a Renal Consultant who wanted a Kidney Biopsy done as was loosing protein in urine. Whilst doing blood tests though, spotted something and refered me to a Haematologist who spotted something else and decided to do a Bone Marrow Biopsy. I asked if he was looking for Cancer. When the answer was 'YES' I cried and cried till I had to stop in order to stop scaring my 9 year old daughter! 

By this point my stamina was soo low and weight lifting was not an option. I wrote my will and planned my funeral (ever the dramatic person). The Bone Marrow showed Amyloid Proteins. Never hearing of this before I just went by what the Consultant told me... That I had Myeloma and Amyloidosis which was affecting my Kidney! He kept apologising. Cheamotherapy was likely. Bloody heck. No wonder my Husband and I started to cry as we walked out.

The Kidney Biopsy was finaly done (Soo painful - knocked me off my feet for 4 weeks) but showed that I had 'focal and segmental glomerulosclerosis' NOT Amyloidosis in Kidney's. I'm confused by now but still crying. This scarring of the kidney is why I was loosing stamina (was causing fluid on the lungs) and the muscle loss. I am now on a medication for this which seems to not be working - steroids is the next option.

But going back to the Amyloidosis - I was refered to the NAC. Having worked in the NHS/Care Sector all my adult life, I can say that I was surprised at their standard of care. Was bloody brilliant. I asked questions from the minute I arrived and no one avoided the answer, they were all as honest and helpful as they could be. (Including Helen Lachmann who I spoke to over the telephone a few days before). We stayed in the hotel as live on the Coastal side of Wales. My 9 year old Daughter had to be with us as I have no family other that my Husband/Children. All the tests (except MRI) were done on the first day. MRI the following morning. Was not the best of places to visit for my daughter given the situation but we made the most of it by taking her to see thhe sights of London in the evenings, Belgian waffles seemed to cheer her up. I'm greatful I didnt have to be an inpatient as she would have hated leaving me in hospital again. When I had the Bone Marrow - It was so clinical and scarey - I had to walk passed the patients having Cheamotherapy. Arriving at the NAC, I was ready to usher my Daughter away from such sights but all testing was done well away from view of the waiting rooms. I'm soo greatful for this as had no idea how to explain things to her given I was not sure myself.

The Results - I was prepared for the worst only to be told that the 1% Amyloid Proteins in my Bone Marrow seem not to be in any organs or doing any damage - YET (Kidney tissue was not there to be re-tested, so they could not give a 100% on this but results will more than likely be clear also). So for now, regular testing to catch any changes early.

Wow I'm tired just writing all this down. It's been a lot more complicated and stressful than just the above but I didnt want to write it all down.

Its taken a while but now its all sunk in, where I am now and what might be in the future.

In 2016 - I have gone from being fit and healthy - just always putting things off - to thinking I will never be fit and active ever again therefor never doing the thing's I would like to do - to its going to be okay for now so get them all done asap!

Hence the list of fundraising events (in aid of the NAC) to come...

https://www.justgiving.com/fundraising/RoadRunners-Amyloidosis-NAC?utm_source=facebook&utm_medium=updates&utm_content=RoadRunners-Amyloidosis-NAC&utm_campaign=updates-facebook

Starting with a 5k in Jan (14th) which my daughter and I will do, there is going to be a year of fundraising.

In Feb-  my son (17) will do a half marathon (Actually I think he is doing one every month until his 18th Birthday when he has a Marathon planned).

My Husband will finaly do a Marathon. He has been putting that off for years but given his age (61 -  not that age matters, he's a good runner) and given the last year of thinking I may die, he thinks its about time he too should just get on with things.

Myself - I will start off slowly with the 5k (I may have to walk some) then another 5k (running it all), a 10k, a half marathon and if I can get there, a Marathon late in the year. I also  plan to do the Cross Wales Walk (41.4 miles this year) on the24th June 2017.  (My Husband, Son, Daughter and some Friends will do this with me).

And a Triathalon. there is a team of us that plan to do the local one of these. A friend will Swim, Husband will Run and I will Cycle. (We had planned doing this in 2014 but excuses were made).

Wow it's going to be a full year.

On the above Just giving site I will add each event as the last one has passed, adding photos to document my progress and the support I get from my Family and Friends. As well as raising funds, I will always be acompanied by someone ready to answer questions, hand out leaflets in order to raise awareness about Amyloidosis.


T-Shirts have been ordered. Leaflets will be printed soon and I am even just about to buy a treadmil to help with the training.

So heres to a Fantastically Full 2017.

Becky Jane

[patpinchin]

Hi Becky,

 Great to see you here. Whilst you may not be a forum person this one is different because we all have a connection to amyloidosis. Suffering from a rare life threatening disease can be very lonely especially when those around you, your family and friends, work colleagues etc.... have never heard of it and have difficulty understanding such a very complex disease as is amyloidosis. We share experiences here and are of mutual support to each other. We also have access to professional medical advice when necessary via Miriam our friend and forum moderator.

As you and members of your family and friends are embarking on a very full programme of fundraising I am glad you intend to stay in touch with updates and photos. I am very excited for you. I also urge forum members to support you with donations to your just giving page. It is very easy by clicking on the link in your post. I have said this many times before, it is not necessary to know fundraisers personally, first and foremost it is The Amyloidosis Research Fund (ARF) which will benefit from donations. Every patient should know just how important that is in supporting the clinical and research work of our wonderful NAC. Ultimately that means every patient benefits from the hard work and self sacrifice of our amazing fundraisers. There is a poster on prominent display at the NAC telling us all how dependant research and clinical work are on the Amyloidosis Research Fund. Many members here have cardiac amyloidosis. The ARF helped fund the new state of the art Cardiac Imaging Suite which means that patients no longer have to go to another London hospital for their cardiac MRI scans. What a bonus. Thirusha Lane, NAC Lead Nurse and David Hutt, head of Nuclear Medicine, rode from London to John O' Groats a couple of years ago to raise many thousands of pounds towards it. More recently the NAC has invested in a new mass spectrometer costing £500,000 which is essential to their advanced research. Professor Sir Mark Pepys told us in his letter published in the last newsletter that he was able to contribute £100,000 from the ARF towards the new instrument which meant the NAC was more likely to be granted the remainder from a medical grant. It is very easy to understand just how very important The Amyloidosis Research Fund is to our Drs and Scientists.

As for your visit to the NAC Becky, what I told you in advance of your visit turned out to be exactly as I had explained. Indeed the compassion, care and outstanding expertise every patient receives there is unparalleled. Every question is answered and nothing is too much trouble. Even overnight accommodation is arranged for us. You had a very long journey from rural West Wales and having to take your young daughter must have been daunting for you.  Nothing could have been bettered. Everything is extremely efficiently done in the most professional, calm and friendly way. Excellence in everything they do is the NAC hallmark. Patients have often had a very worrying time before their first visit to the NAC. After that initial visit they leave feeling much more reassured that they will be cared for in the very best way possible because of the NAC's unique ability to be able to diagnose accurately and work in collaboration with patients' local Drs with treatment plans where appropriate and regular monitoring.

From the amyloidosis perspective it is good to know that for the moment things have not progressed. Now you are in expert hands of some of the very best Drs in the world for amyloidosis, you will be closely and carefully monitored. I hope there will be a way of tackling your kidney problem and that it will not impact too much on your life.

Thank-you too for telling us all about yourself and your long complicated story which led you to the NAC. Indeed you and I have exchanged messages before but all amyloidosis stories are helpful to all sufferers and their families. Everyone here will benefit from reading your post.

Thank-you so much for your fundraising plans. You and your family are certainly going to be very busy and also have a lot of fun I am sure. Fundraising for the ARF has a two pronged benefit. In addition to raising very welcome funds for clinical work and research at the NAC, fundraising events such as marathons,  5k runs,  triathlons etc reach out to a lot of people. As you intend to be accompanied by a friend who will give out leaflets with info about the disease, you will be spreading much needed amyloidosis awarenesss. If your friend carries a donation bucket or tin.....make sure it looks official......people who have been informed about the incurable life threatening disease are much more likely to donate. Often local businesses are very generous to fundraisers if approached in the right way. Sometimes a small business wil make a charity their "Charity of the Year" as did The Window Company in Manchester in 2016. The company boss organised 4 different fundraising events for the ARF and raised over £8,000. Raffles at fundraising events often raise generous amounts of money especially if those buying raffle tickets know how their money is going to be spent. That's where the usefulness of concise leaflets about the disease help a lot. At two concerts for the ARF my daughter's poignant poem expressing what it feels like to be diagnosed with an incurable life threatening disease was found to be very moving to those present. It was read out to hushed audiences before the sale of raffle tickets, so a lot of money was raised. By spreading awareness of amyloidosis you will be playing an important part in the promotion of earlier diagnosis which has the potential to save lives. Thanks to active awareness programmes and fundraising over the years plus the very important UK Annual Amyloidosis Network meeting for Drs across the U.K. the NAC saw 4,000 patients last year. Although there is still room for improvement, earlier diagnosis is exponentially improving year by year.

I wish you and your supporters every success and look forward to future instalments.