The past few weeks for us have been hectic. Every weekend we’ve managed to spend in hospital! 3 seizures forming a cluster and fingers crossed not a pattern or continuation.

His first seizure was Saturday 19th May in the morning – second seizure Sunday 27th May in the afternoon and then third, Monday 4th June 2018 in the afternoon.

Nathan has full Tonic-Clonic seizures, he deals with memory loss, decreased heart rate, migraines, sickness, feeling fatigue, loss of balance and takes a while to fully recover.

Northampton Hospital were completely amazing, looked after the pair of us and Nathan got blue-lighted in by paramedics! The doctors and nurses calmed our nerves and relaxed us after a bit of a traumatic situation. I am currently full of guilt because I wasn’t there for any of them, I’ve helped him with all the aftermaths but heartbroken that I wasn’t by his side the whole time. I am extremely proud of Nathan for managing to recover and call me as well as paramedics to his rescue – not fully conscious or making much sense but he did it! Determination for you.

His CT scan results showed no sign of bleeding or blood clots which is a good sign! Everyone reacts differently to seizure and not a lot of people are fully aware of the side effects, the damage seizures can cause or know the seriousness of them either. Here is a fantastic website full of information: https://www.epilepsysociety.org.uk/

We’ve also been to Addenbrookes 6th June to meet his new Neurologist! Dr Ham is lovely and a specialist in Brain Tumours and Seizures – best man for the job.

He’s started Nathan on some new medication called Lamotrigine, small dose for now and increase every two weeks and see how his body reacts. We are hoping this stops and controls his seizures with less side effects than Valproate. We are also now quarterly checked up on rather than annually but this is good! Means regular check-ups! Gliomas are very slow growing tumours so even with all the seizures, scans won’t show anything for a little while.

I've been doing some research into Epilepsy alerts and alarms for carers which has been really interesting! We are now playing the waiting game, trying to get life back on track once again and live whatever a normal life is! Or at least try..

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We’ve managed to survive our first month together in our new flat and with Nathan in my care! I would like to say a massive thank you to our wonderful friends, my colleagues, connections and even to strangers! I wouldn’t have been able to do this on my own and the funding page is what allows us to have the flat with our estate agents.

To think a month ago I was on the edge, Nathan was being made homeless by our family and I honestly had no idea how to fix everything. We were both ready to just give up. Thanks to The Brain Tumour Charity & Macmillan for the support, the opportunities, the help, confidence boosting and being by our sides every day 24-7! Being just us two along with an awful lot of health issues, it’s been hard. Every day throughout the month was difficult but we’re still standing and keeping smiles on our faces!!

Nathan was diagnosed at 14 years old with an inoperable Glioma Brain Tumour – destroyed our family quite a bit at the time and we haven’t recovered as a family since. Nathan says it’s me and him against the world – basically big sister to the rescue!

Nathan has never been allowed treatment, the tumour is too close to his spine, eyesight and the high life risks. We just have to deal with the ‘side effects’ from the tumour: Seizures which cause him memory loss, being extremely tired to the point he will sleep for 48hrs, anxiety, depression plus a tone of medication to try and keep everything under control, the list just keeps going! Teenage years were ruined for him quite drastically but we learnt how to keep going and mastered the art of smiling our way through life to hide.

At 18 we were told that the tumour had become cancerous, but there was still nothing they could do. Gliomas are known to turn into cancer over time – but ‘thankfully’ in Nathans case, the tumour holds the cancer – if the tumour doesn’t grow, move or spread then neither will the cancer. Every Addenbrookes appointment we hope for the “NOTHINGS CHANGED” news because that’s the best news we will ever hear! (Only others in our situation will know and understand how even the nothings changed news is heart-breaking and gets you down - but you still smile and pretend you are happy with the news!).

If you took one look at the pair of us, you would never know. You would never hear or see what we deal with and what life has to throw at as us daily. We both find it extremely hard talking, asking for help and struggle saying these things out loud and people knowing. Saying that, I have had my own confidence boosted recently by people around me which I am extremely thankful for and convinced to share our story has helped us regain strength and attempt to get life back on track! Doing everything on my own has been hard, I’ve been slowly carrying on and realised it’s ok to ask for help and that I’m not alone. Nathan always tells me he just wants a normal life, how he hates that some days it’s the only thing he can think of and other days, like it never existed!

It's now been 2 years since Nathan had a biopsy, they put it off for years because it was too risky but as soon as the cancer appeared, it was time. The photographs are not for the faint hearted, gruesome to be completely honest but here is Nathan, a few minutes after waking up. Smiling away asking for a Burger King! He had to have a Craniotomy for an open brain biopsy, half of the procedure he had to stay awake for! With stitches across the side of his head, a metal plate screwed into his skull for a lifetime of support and he lost the feeling as well as some motion from time to time in his left side. Bit of a traumatic experience for all of us yet alone him and he’s still smiling away while were all crying our eyes out! We had no idea what to expect, no idea what the outcome would be or even what he really would have to go through. We had no support from his appointed nurses – who ditched him on the day – plus he never had the transition of being in the pediatric unit, he got thrown straight into the adult units on his own which did not go down too well.

I started raising funds for us both because our family members can’t understand Nathans journey, feelings or current state of mind and physical ability and were going to make him homeless. We are both living on my wages and as much as I was born to be a millionaire, for now being on entry level of my dream job will do me just fine! – one day it will happen! But also means I have to afford the pair of us, the house, the bills, the furniture, the extras, my car and anything else that life insists on!

It’s better late than never but also this April we finally met the Young Adults team in Addenbrookes who are so caring, helpful and were very apologetic for Nathan not being on any systems or radar! They are helping us out so much and contacting everyone that they need too, arranging appointments for us and being on call if we need them.

In our recent Addenbrookes appointment in April 2018, we got the “Nothing’s changed” news from Nathans Neurologist! Plus after I think it’s been 5 years.. with our lovely Dr. – he is referring us on! Don’t know whether it’s good or bad, however our new neurologist is a specialist within Tumours and seizures, so we will get so much more advice, knowledge and professional opinions! We are just waiting for the big meet and greet day!

After a year of Nathan applying for jobs and having no luck, Macmillan have been extremely helpful with Job Seekers as some people just don’t understand how health can have restrictions and inconveniences! Just as we manage to get it all sorted though, Nathan has been offered two jobs this week!! Both part time which I think is great to slowly ease him back into the working world! Great timing! I am extremely proud of him and he’s so thrilled too!

I am also on the Private carers group with the Brain Tumour Charity – it’s amazing and I would recommend asking to join if you are in the same or similar situation as me. Everyone on there has so much knowledge, experience, love and there is no judgement. It gives you a place to talk, to rant, to be angry, talk to people who understand, you can be completely honest with everyone and to genuinely feel safe and not alone.

Our estate agents are rather pleased that we have rent funded for us! Means we are trustworthy and we can keep a roof over our heads! The landlord is doing a few things to the flat which is lovely too: putting in a shower most importantly!! My work, I can’t thank them enough for being so understanding, caring and just being there for everything I need! That goes for certain individuals too! Me and Nathan have had our moments recently but been ‘picked up’ straight away by the people around us. I’m still pretty nervous and scared as anything could happen and I am a huge worrier!!

We moved into a completely empty flat too so a huge thank you to everyone for bits of furniture!! I am SO excited to have a bed soon its unbelievable. Making a house a home is very hard. Soon it’ll be our home. With everything all happening and going on! Nathan wants to have a normal life, so were going to try as much as possible. Currently arranging with all his doctors, making sure I have back-ups and if anything happens I have point of calls for emergencies!

We are using the money raised for our monthly rent but also towards council tax, bills and if possible, bits of furniture! We are extremely grateful for anyone and everyone for helping us out, means the world to us. What is nothing to others, is a lot to the pair of us.

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Hope you have a lovely day!