My cancer journey started in 2008. I was a healthy, 28 year old enjoying life, working within the Fire & Rescue Service for the Fire Brigades Union. I had fallen pregnant in 2007 and suffered with really painful joints, skin rashes, extreme fatigue and hair loss - I was eventually diagnosed with an autoimmune condition Lupus SLE, however as I was pregnant, treatment options were put on hold. I welcomed Ben into the world on the 9th September 2007, one of the best days of my life.

In order to reduce the inflammation in my body, suppress my immune system and protect my vital organs, I would need to take a cocktail of medication for the rest of my life, so prior to administering the drugs, I had a routine chest x ray in April 2008 . A 10 cm mass was found in my chest cavity. I had open heart surgery to remove the mass and as I had no symptoms, it was thought it was a benign tumour. Unfortunately, histology confirmed it to be a very rare type of cancer - Follicular Dendritic Cell Sarcoma.

I recovered from surgery relatively well, my surgeon had got clear margins and there was no need for adjuvant therapy . I returned to work, and focussed on raising my son, who was becoming quite challenging, showing worrying behaviours, and not reaching milestones. Initially I thought it could be due to my illness, and the trauma we had been through as a family. Lupus still caused me daily pain, the medication had awful side effects, which robbed us from a lot of quality time together , but it became apparent when Ben was around 2 years old, he had additional needs .

Ben was diagnosed with Autism and a Learning Difficulty in January 2011. He was then later diagnosed with ADHD and Sensory Processing Disorder . It has been a long, hard and emotional journey and I have had to fight continuously to get him the support he needs. He has taught me so much and made me a much better person, he inspires me and drives me like nothing else in this world. I immersed myself into supporting and caring for Ben, whilst juggling my role as a National Learning Centre Manager , so I could give him the best life possible. The future scared me - the cancer bomb was always ticking in the back of mind . How would Ben manage without me? Would he understand ? Would he remember me ? As the years went by and with each passing x-ray, and CT Scan, my confidence grew, ‘No Evidence of Disease’, ‘No Reportable Change’ - dare I say I got a bit blaise, and I thought I had beat it. How wrong could I be?

My Oncologist, who had now become a friend, said with a smile , in April 2017. ‘ Last Xray Claire, You now have as much chance as the next person, nearly 10 year disease free .I hope I never see you again’ You are normally discharged from oncology after five years, but as FDC Sarcoma is so rare, and not well documented or researched , she was keen to monitor my progress.

My oncologist was equally as devastated as me, when the x ray was reported, showing a mass in the lining of my lung and then a further CT scan also revealed another mass in my vertebrae.

In June 2017 I had a thoracotomy, another major operation, but it was the only way to get to both tumours. Surgery wasn't as straightforward this time, my sympathetic nerve was severed , resulting in horner's syndrome as well as severe neuropathic nerve pain and my lupus also went into flare . I also needed 30 rounds of radiotherapy as the margins were not as clear this time around.

I had expected to bounce back and recover just like I had in 2008, but no matter how much medication I took, what the physiotherapist or pain clinic advised, I was still crippled with pain daily. I had to stop working, I felt like cancer was slowly chipping away at me, it had taken my independence, confidence and I was in severe pain daily - now it had took my career , another bit of my identity was gone - but so was the cancer !

I found a new normal, I was able to take time to appreciate the smaller things in life, taking Ben to school, going to the park, spending quality time with my family, reading, researching , volunteering, but all the time my first and foremost priority was Ben, making sure I could be the best Mam I could be, and he was happy . I had secured him a place in specialist provision, he was making great progress and we found a new routine .

Cancer puts life into perspective , it shows you what is really important , it's not the house, the car, or the holidays, but it's the memories you make along the way, the people you meet, the friendships and bonds you make, the lives you touch and I was damned if It was gonna take that from me too.

In 2019, I VERY unexpectedly got the most unplanned surprise - I fell pregnant! I admit, I was very undecided on what to do…. I physically struggled to look after myself and Ben, I already needed lots of support and help from family and friends. What if the medication had affected the baby? What if the Lupus flared? What if I miscarried again? How would Ben cope with changes to routines and being an only child ? What happened if the cancer returned? I spoke to my medical team and Oncologist , I had had 9 years cancer free, and it is such a rare cancer that they can't predict trends and patterns, but it was low grade and she said to me Claire, “ What's the difference between possibly leaving one child to leaving two, except they wouldn't be alone ?" I knew then that I needed to give Ben his forever friend , this is the one thing I could give him that would be with him for his lifetime , someone who would look after him if I couldn't, someone who would have his back just like I had my Brother and Sisters.I had been clear for 9 years ,I could be free for another 9 or more years.

I carried on with the pregnancy - it was complicated and difficult and I knew it was risky , but I put on my game face , smiled and my little miracle fought to defy the odds. I knew the day I found out I was pregnant he had been sent to me for a reason, and sure enough, my gift arrived on my 40th Birthday - 4 weeks early due to Pre- Eclampsia on 2nd October 2019.

I wasn't able to have my image monitoring, CT Scans and Xrays, whilst I was pregnant but soon after delivery I had a chest xray as I had a severe infection of cellulitis . I was pretty poorly, but I had battled worse and I knew I would get better, just had to dig deep and allow my stubbornness to get me through - again . The chest X ray showed signs of infection in my right lung, so it was repeated again in November ,and it was all good and reported as satisfactory. I felt okay, I had a cough, but it was flu season - I was tired but I had just had a newborn baby and the nerve pain was always more severe in the winter months, nothing unusual and surely life wouldn't be so cruel?

My three monthly monitoring scan was in February 2020, I had an uneasy feeling after the scan, but just dismissed it. My Oncologist rang me with the results and said that there was a thickening on my pleura, she thought it could be due to Lupus or residue from the infection , but wanted to double check with a CT Scan.

The CT scan shows I have 4 tumours on the left side of my pleura, although there could be more. The cancer is stage 4, metastatic. I will have experimental surgery in May, where they will operate and investigate the extent of the spread. The hope is that there are just the four tumours, they can access them, and resect . If there are several tumours, the surgeon is not prepared to to remove any tumours, he said it would be like ,painting over rotten wood, they will eventually come back . I will then need systemic treatment, however due to the complications of my immune system and Lupus, I need a personailsed targeted treatment, I cant just have standard chemotherapy . The treatment they are prepared to give me is to help prolong my life , so I can have as much time with my boys, the medical team are aiming for two years, but I need more !

I don't know what is worst, the feeling that I may not see my boys grow up together, it kills me to even think Zac will not even remember me, or the sheer sense of loss and despair that Ben will feel when the world is just too much for him and he is overwhelmed, struggling with everyday life and he just needs his Mam. I will not be here to reassure him, comfort him , stroke his hair and let him fiddle with my ears

I know every child needs their Mam , but I am Ben's constant, I am his safe place, when Autism, ADHD and his learning difficulties prevent him from being a typical 12 year old boy I am his friend , protector, and his advocate .

Zac may grow up not even knowing who I was, how much I wanted him, how much hope and joy he has brought to my life in these six months. He is my miracle , and I am wracked with guilt that I brought him to this world knowing I wasn't in the best of health, but I want him to know how very special he is to me , the best 40th birthday present any Mam could receive . I love him with all my heart and he has the most amazing big brother to tell him all about me .

I want to see Zac learn to walk and be there for his first day at school . I want to see Ben go to a shop independently, cook his first meal, would love to see him take his first driving lesson - I want to see them play together, comfort each other , fight with each other and enjoy a bond. I know I may not see their wedding days or even meet my grandchildren, but I need to enjoy their childhoods with them , and create memories that will last a lifetime .

I am looking at lots of options, including second opinions, not that I don't have 100% faith in my NHS medical team, but FDC Sarcoma is so rare, with only 700 cases ever reported worldwide , I need to make sure every decision I make is the right one.

I have enquired about Proton Beam Therapy, but I don't know if i will be a candidate for this until after the experimental surgery. Proton Beam costs £40,000 -£ 80,000.

I have also looked at radical surgical procedures, including removing my lung, pleura and diaphragm which would not be done on the NHS. I am willing to try anything and everything - I have been bought my first bottle of cannabis oil, which will last me 4 weeks.

I have made contact with a Doctor in Calafornia who has successfully treated two of my Facebook friends in the USA with his rare type of cancer .I am looking at targeted therapies, clinical trials both in the UK and Overseas and I will never ever give up, therefore I am asking you all to stand with me as I fight for my life and try and get as many tomorrows as i can, with my boys

For the first time in 12 years, I am scared, I am frightened , not for me - but for my children. I will take everything that this has to throw at me, every ounce of pain, every bad day, every tear and every knock back and then some more, if it means I get to stay with my boys . The risks are much higher this time, even entering a hospital increases my risk of contracting Covid 19 and I know my chances of survival if I contract Covid are very slim, but I am willing to take that risk. Time isnt on my side and I need to know the outcome of the surgery as soon as possible, which will then determine what other surgery and treatment I need.

All monies raised will be spent on my cancer treatment, medical advice, consultations, 2nd opinions and alternative therapies. I would also like to use the fund to help support the hidden costs of cancer travelling, parking , overnight accommodation, wigs, self care and holistic treatment.

If I do only get 2 years, I want to make everyday count so my boys can look back and recall happy times . I have already started writing a journal for Ben and Zac and so I would also use the fund wisely to make as many magical memories along the way, so they can look back and recall all our happy times together .

I know times are really tough now , especially with Covid19 People are struggling financially and emotionally, and that's why I have found it especially hard to ask for help ,when I know there are millions of people suffering right now. I am fiercely independent, sometimes to a fault, and would never normally ask for help, but if I don't try everything and anything then I will always think what if ? Did I really do everything I could? I am swallowing my pride to give myself a chance to beat this , I will not let you down, I will fight this with everything I have, and with you all alongside me I know we will see brighter and better tomorrows. I have fought this for the last 12 years and I promise you all, I will fight this for the next 12 !!!!!

Thank you all for taking time to read my story, I appreciate any support you can give to me and my boys, whether that be a share of my page, a donation in money or of your precious time , I really am so grateful . Please look after each other , life is very very precious and very short.

Love

Claire X