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-facebookStarting 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