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The final finish line to my Oxford story and to the Amigos Charity series, has been crossed… An emotional return and extremely emotional finish line where Anne my main physio through out the years battling at John Radcliffe OUH, met us and shared very tearful happy hugs!

I am emotionally and physically exhausted struggling to find the right words but I hope the photos tell the ending to this TOS story for me!

The words ‘Thank you’ to my Oxford team,, to all of you who have supported us through out this journey, also seems such a small word and can not clearly show how it’s meaning is so deep from my heart, especially to those so dear and precious, Wendy, Sally, Samantha & Lorraine who without these beautiful souls in my life I would not have found the light in the darkness and made this monumental finish line! 💝

Finally, this special weekend has brought a perfect ending to this long battle and chapter of my life!…To the new chapter, new beginnings, adventures and more importantly and simply, to a brighter future!

THANK YOU EVERYONE… The Amigos Charity Total Stands At £2,349.65 with gift aid!! 💖💖💖

It has taken me a while to post as I am utterly overwhelmed emotionally, mentally and physically!

I’m struggling to think of the right words to express the deep thanks to all the beautiful souls that were part of the this epic and amazing day & the training to get here! Thank you seems such a small word but it is said from the depth of my heart! What a day! What special people!…

My Amigos Lorraine & Sam
Di & Norman
Cheryl
Tracy
Dean
Matt
Zoe
Lauren
Oscar & Frank 😍

So the event…

3 mile swim - I think somebody definitely looked down on us as the water conditions were the best I’d ever swam in and the weather literally held off till we got out of the water! I don’t know how we did it but with the amazing support crew, we somehow swam 3 miles in just 2 hours!!…My body knows it’s done it and the last 10 mins seemed to go on for ever as each of our bodies saw the bridge and finish line and got a little excited and ahead of itself as there was still some swimming to be done to get to that finish!…We Did It! Everyone amazingly and proudly DID IT!…We did it in true Amigo style, plenty of fun and laughter along the way…Zoe with her new Kayak managed to somehow stay afloat, though in a prone position by the end with a deflating boat due to many human errors like valve not shut properly or sections missed and not actually inflated 😂 but somehow managed to stay dry to the finish line but, Most of the comical mishaps, with out shock,from my 2 other Amigos who were supposed to be paddle board support but honestly what a comedy ‘carry on’! … We all swear they were going backwards! The only swim support crew I’ve ever known that actually needed supporting and rescuing themselves by the remaining support crews and swimmers! Seriously, it is true! … I’m actually seeing a pattern here LORRAINE - Extra miles at Holkham and paddle support needing support! 🤔😂…BUT the hilarity did not stop there as we had undressing issues by SJ and a near return to the water by Diane who forgot her deflated Kayak was behind her when she stepped back!…Just simply the best day, the best crew, the best friends, the best laughter and the best memories! 💝

Our beloved ‘Frank’ stage 2 - OMG! We and he survived, though with all the creaks and bangs there were doubts along the way!… We started the stage cheered off by an amazing cheer team and were kindly shadowed by Diane’s little mini and David’s truck while protected at each junction and any fast arriving cars by the wonderful Mr & Mrs Les on a surprise and awesome bike support - in a downpour of rain! - They bravely took charge of all junctions to allow us continual biking and Mrs Les went head to head with the few cars that dare speed towards us! Lorraine managed to hit turbo speed thanks to this amazing support and protection, Frank was in shock at the speed and hit speed wobble 😱… We had one pit stop for his poor back wheel and my weight 🤣… We had moments where I wasn’t sure when they turned my back seat wasn’t going to carry on and become a Unicycle! BUT, Frank and the Amigos made it to Sutton St James and the final chapter…

The Amigos Do 3-Legged Stage 3 - This stage I struggle for words 🫣!…I hurt from laughing so much, some how we only managed 3 spills and restarts, and somehow we managed to March & trip all our way through 0.5 miles to the finish line at the Hat & Feathers Pub… The support we had through out the day brings tears to my eyes full of thanks but especially on that final stage sharing the laughter, the near misses, the marching band music from SJ and the attempted conga line along the path!…Thank heavens the finish line was a pub! Medicinal drinks were required ☺️

To share a hug and drink with all the wonderful friends who supported us all the way was indeed an honour and humbling! Thank you seems such a small word but from the depth of my heart…Thank you all! What an achievement for everyone this morning swim, what a laugh and joyous day but more importantly, what memories we have made while raising money for amazing charities and helping me finally say thank you to my awesome team in Oxford!

Thank you again to all who have supported us through the generosity and kindness of donations that have taken us to an emotional dream target of £2000! THANK YOU!

Now, I hurt, I am exhausted but, I am absolutely buzzing and so grateful and know how lucky I am in life to be surrounded by such beautiful friends and family!…Next, we will face the emotional return to Oxford, which held both my darkest moment and the light to my future, in 3 weeks today for our Amigos finale at the Oxford Half Marathon 💗

💝 Thank you from the depth of my heart 💝

7 years ago my biggest battle began with this special team in Oxford John Radcliffe OUH, led by an amazing and kind surgeon Mr Giel.

My first appointment I found immediate knowledge, understanding of the many individual bodies complications of T.O.S and more importantly, the harrowing journeys many sufferers face in their battle to find help as this opens awareness to trust issues , and the need to proceed carefully with the patient.

We agreed all non-evasive treatments first due to my fear of further damaging surgeries. I was placed in to the amazing skilled and knowledgable hands of Anne Alexander and Hester Bishop. They were both at my side through the hardest battles we faced on our journey together to tame T.O.S.

It wasn’t just the physical battle, we also had to work through the mental & emotional tolls created from the past fights to be heard and believed. This skilled and wonderful team knew this…

Anne, on our first appointment gently got me to talk and open up to all my symptoms, no matter how small or silly I felt they were! To admit my fears and trust issues without judgement, just compassion… I was finally able to speak all I was living through - The pain, slurred speech, mobility, vicious headaches, racing heart but, what was more amazing was Anne and Mr Giel explaining the headaches and slurred speech issues, though rare, had been voiced by other T.O.S sufferers!…I was not going insane! It was all real!

Anne had also seen that through the years of fighting TOS and the curveballs it threw at us through treatments, that I had grown to hate my body as it felt it was always punishing me with pain no matter what I did - Damned if I do, Damned if I don’t - She understood what was happening with my emotions towards my body and at an early appointment brought a medical book with clear illustrations for me to be able to finally see the vast area, brachial plexus nerve system, muscles, ligaments and ribs all being affected! I will never be able to thank her enough because, for the first time ever, I could clearly see and understand how much was not working and finally grasp the serious trouble my body was in. Anne and Hester continued this through the years we fought TOS, helping me learn to no longer hate my body but, actually, be in awe and respect of it’s ingenuity, trying to find a way to work around the disability!

All of these little victories were a huge step forward with the biggest emotional breakthrough happening with no warning…I was discussing an issue with an exercise when in the blink of an eye and totally against my stubborn character, I just began sobbing uncontrollably as years of fighting for help rolled out of me with every tear and, in its space, was replaced with hope! Anne sat at my side throughout, just giving me comfort and strength till the last tear had fallen and then simply looked at me and said, “About time! I’ve been waiting for you to finally let go, Well Done!”…I realised that moment how right she was, the past needed letting go so I could be free to focus forward to the future!

This last bit of part 2 , I have thought long and deep whether to share but, realised it was such an important part to why I so desperately want to raise money and thank this amazing team and to also, bring awareness to the true evils of TOS and pain…

After a seriously intense appointment where my surgeon had to push areas beyond limits to find pieces to an extremely complicated puzzle and then a long journey home, the pain crescendoed in one awful, dark and scary moment…

My body became stuck in an endless tunnel of unbearable levels of pain raging through my upper torso to my head where movement and sleep were impossible, begging and praying the pain management would kick in soon…It Didn’t!!…Void of any awareness of anything existing outside of the pain to the point of one single moment in time at my next dosage, numbly staring at the tablets, mind in a hollow void with 1 simple thought, ‘No more pain’…Thankfully within a split second horror replaced this thought and when I was physically able, and sheer panic, I rang my team pleading, “We need to stop, we need to stop now! I can’t do this anymore!”… Hester was there that day and knew instantly this was not me. We spoke on the phone without time limit, processing through my horror, shock and anger as I love life, my family and have many dreams I want to achieve!…How is this possible?! How can pain take me this close to losing the life and people I LOVE!!!

Hester moved fast and got me to Oxford for a face to face where they would help me understand what happened - Pain can be dangerous, deadly and truly blinding - Fear hit me as I realised and voiced my grave concerns to my surgeon and team… “As years go on and I get older and worn out with the constant pain, will I always be strong enough to see what is happening? Will the pain blind me so much that it will be too late to see?!”… This was the moment it was realised by all, the tide had turned and my life and future was now riskier than the surgeries needed….

Now, the plan was preparing for major invasive unknown surgeries around my brachial plexus and neck…(The final part)

Our Charity series covers many months with multiple challenges and events where we chose to raise money for 2 amazing charities…One for me to thank for my future and the other , a more local based charity that has helped each of our own families so are, pretty sure, helped many of you and your families or friends too.

The Alan Hudson Day Treatment Centre is part of the Arthur Rank Hospice and provides many services and treatments for adults living with advanced serious illness or life limiting conditions through Wisbech & Fenland.

All of the money raised for this cause will go to the Alan Hudson Centre and help them fund and provide all of the following…
- Treatment Service.
- Living Well Service … Tailored programme offering creative & social activities with refreshments.
- Complementary Therapies … Reflexology, Massage, Relaxation, Hairdressing etc.
- Important Inpatient Services.
- Social Group.
- Bereavement Group.
- Community Specialist Palliative Care Nurse.
- Hospice At Home Service.

As you can see, this amazing centre tries to offer so much to patients and families but, need the communities help and kindness to fund all!

Please, help us raise more funds for this important centre and help them continue providing all of the above, & more, wonderful services for those in our community living with these awful illnesses and their families. 💝

Today we are sharing the details of our 3rd event…10am Sunday 22nd September 2024…Triathlon 3 Amigos Style Across 3 Counties!

This is probably the most challenging personally and as a team. It is definitely quirky and will challenge 3 Amigos team work to the absolute limit to be able to make it to the finish line with out a visit to A&E !! 🤣

Stage 1 (Norfolk) - Personally the hardest challenge I’ve faced both mentally & physically since my operations!…3 mile swim ‘The Heron Pub to Magdalen Bridge’. Thank you to all our friends supporting us in training and on the day both swimming the distance at our sides or boarding/kayaking with us to keep us safe and fuelled.

Stage 2 (Cambs) - THE MOMENT YOU HAVE ALL BEEN WAITING FOR… a bike circuit on ‘Frank’ with distance TBC as we master how far this strange, quirky, beast, brain child of Lorraine’s! Can actually cover safely on the Cambridgeshire rural roads! ⛑️

Stage 3 (Lincs) - The final stage of this triathlon continues the 3 Amigos insanity as we walk/March/trip/roll (who knows what else! 🫣) 3 legged, connect with straps all the way to the Finnish line…Hopefully a pub!!

Training is in full flow (literally) to reach stage 1 immense distance target! 🤞

Please keep supporting and helping us reach finish lines and fundraising targets… Our dream is to reach that £2000 target! 😇💝

The 3 Amigos took on the Holkham Triathlon Relay raising amazing funds for our Charity series…

Firstly, thank you everyone for your kindness, caring and support for the 3 Amigos! It all means the world to us and is all so deeply appreciated!

We trained as hard as we could to challenge ourselves at this amazing event but, the one thing we were unable to prepare was our nerves on the day…Oh there were plenty of them! So far out of our comfort zones!…. Oh and the other thing we were ‘unwilling’ 🤣 to prepare/train for was the 3am alarm for travel & 6-7am start!

The day was one of the best experiences ever! We each gave all we had…Me 1.2 mile swim/Lorraine ‘50’ mile bike/Sam 13.1 mile run…We did in in the awesome 3 Amigos style, fun and unlimited laughter!

So so soooo proud of my beautiful Amigos! All did amazing and beyond our own stage hopes - Lorraine enjoyed her stage that much that she literally went the extra mile(s) for the Charity cause!

Thanks everyone again for your humbling support! Now we move on to our training and preparation for Event 3… 💝

I was 22 yrs old (Now 50) when my battle began. serving in the Royal Navy, something I had dreamed of since 8 yrs old and sadly something I would lose to the crippling TOS.

The condition was so rare those years ago, no knowledge or awareness through the medical profession. No expensive mechanical tests showed TOS which unfortunately led to my toughest battle at the start, to be believed! The pain, the loss of function were real but due to the narrow minded Dr’s not willing to look outside the box, look past black and white text books, brought me to the most crushing moment where I was told they were referring me to a psychiatrist as they can find or see nothing wrong…Years later with a diagnosis and help, I sadly found out this was the outcome for many sufferers!

Thankfully with the support of my family, I kept battling to be heard and believed, and finally with some luck, I met a consultant that knew how to look outside the box and with 1 simple test, used no expensive equipment, diagnosed TOS and immediately operated removing both my 1st ribs as I also had rare dual TOS.

The weight of the world had been lifted having a name to my hell but sadly, my battle did not end there as the extremely invasive early known operations and the deterioration of TOS caused years of worsening pain and function. The pain was with with me every second of the day & night, through every little movement no matter active or rest, I felt damned if I did and damned if I didn’t, literally living feeling constantly punished by my own body.

Those years back, after the surgeries, nothing more could be done, I lost my career in the Navy but, I chose to live my life trying hard not to let TOS win and tried to keep active as my motto became ‘damned if I did & damned if I don’t so I will’!…but eventually, after running Brighton Marathon to raise money for Diabetes Uk for my son and nephews, the disability and pain became so severe it took my function and control of my upper limbs, my speech and my short term memory and 7 years ago, at the most excruciating pain raging through my upper torso, limbs, neck and head, I finally reached out again to my old surgeon for help as, sadly, still minimal knowledge and awareness. Thankfully he kindly guided a referral to his friend, an amazing surgeon at the JR Hospital OUH Oxford who was also not afraid to think outside the box and use innovation to solve major traumas to the brachial plexus system.

Now my journey with Oxford begins…

It’s hard trying to condense over half my life battling TOS to a story I can share that explains why I so strongly need to thank my team at Oxford while hopefully bringing awareness to TOS but also, the battles faced by many with rare and hidden disabilities or illnesses.

TOS stands for Thorasic Outlet Syndrome, it affects nerves and blood flow to the upper torso/limbs. It’s a crippling complicated condition that varies its attack on individual bodies and follows no rules.

I will share my story throughout our Charity Series over 4 parts to condense but cover a battle covering 30 years...

Our first event to kick off this charity series was Quiz Night Friday 17th May … Thank you to everyone who so kindly came and supported us so generously on the night!….£895.90 on our first event and more donations given online by beautiful friends who couldn’t make the evening but wanted to support us and our hopes!! …. With your humbling generosity, Quiz night total & online support, We have managed to hit our first Charity target of £1,000 🎉💝

Please do not be fooled by the ‘Hand Therapy Dept’ emblem of the Oxford JR Hospital team on our Charity page and tops, this is their, already inspiring, day job where they work alongside my surgeon in the plastic surgery department rebuilding bodies and lives!…For my journey, they were a team who learnt to look past black and white text books, think outside the box, adapt to curve balls rare conditions throw as they follow no rules invading your body!

I am sorry it has taken me so long to bring my story to this page but, something mentally happened I never expected! From the miracle of Oxford, I literally hit the ground running, locking my past with its darkness in a box, solely focused on my future and making the most of everyday!…Opening that box to share with you has overwhelmed me, reduced me to tears reliving the hell myself and my beautiful family faced, unable to put it to words…

Maybe sharing for this Charity series will bring light to that darkness, maybe sharing my story and this moment of struggle to open the box will reach somebody in their own struggles and let them know they are not alone, to reach out and to keep fighting…

Please keep following and supporting us as over the coming weeks, I will finally share my TOS story in small instalments and keep you up to date with our training and future events still to come! 💝

The 3 Amigos will take on the Outlaw Triathlon Relay at Holkham

Leg 1 - Me - Open water swim 1.2 miles … Unable to swim for 9 years from TOS & traumas of surgery, re learning to use muscles and move upper limbs! To complete this will be a special & emotional moment for myself and my team in Oxford JR Hospital.

Leg 2 - Lorraine - Bike 56 miles! … Possible summer heat of July with plenty of hills, pot holes and more obstacles to overcome around the narrow Norfolk coastal circuit.

Leg 3 - Sam - Run 13.1 miles! … Again in the possible heat of July in her worst nightmare of loops x 3 and plenty of hills to tackle through the loops.

Each discipline has the added pressure of cut off times so, the tough training is well under way! 🏊‍♀️🚴‍♀️🏃‍♀️💗