So, I guess this is more so I can share my thoughts and feelings at the moment which I view as a healthy outlet rather than allowing my brain to create a mismash of catastrophizing (something Im very good at).
Some background I guess is helpful for you to understand. I met my husband when I was 22 (I think), in a nightclub. He just kept staring at me very weirdly and in the end I went up to him and told him to stop as it was strange. He started with the 'Your the most beautiful girl Ive ever met' lol and that was it, I fell for him that night. Our first date was a week later, it lasted 24 hours and we saw each other every day pretty much after that. I knew the night I met him I loved him and told my mum that was the man I was going to marry. He told me he loved me 3 weeks later, we moved in together after 3 months, pregnant in 6 months and married in 9 months. He is the love of my life, my soulmate. I just dont work without him. And that holds more true now than ever. We've been together now for 18 years. Hes my warrior. He was 29 when he first diagnosed with a brain tumour. We had been married about 4 years, we had a 3 year old and a one year old at the time. I was at home washing my hair in between the chaos of 2 small children and I had about 6 missed calls on my phone from his work. I called them back and they told me my husband had had a seizure on the shop floor (went down in the middle of serving customers) and that an ambulance came and he was in hospital. I wont go into details but he was diagnosed with a grade 2 oligodendroglioma. He had surgery which was successful and life carried on pretty nicely until 5 years ago. The head turning started, a few seizure like symptoms started and we knew. His scan confirmed the recurrence and off again for surgery, radiotherapy and chemotherapy. His surgery was a little problematic and his heart rate dropped to 28 bmp and they had to bring it back up which gave them a scare (and us), but he coped amazingly throughout and life again went on as it does. It had turned to a grade 3 oligoastrocytoma. These past events are very brief and I dont want to go into too much detail but it gives you a glimmer of what we have been through up until this point. Our lives have been dominated pretty much by these events, they always remain 'there', in the form of epilepsy or migraines and the stress of scans but we have managed to make it 'our normal' and we have been happy even when these events have been there.
Fast forward 5 years and we now have teenagers, 16 and 13. He had finally reached the yearly scans and life was starting to look up. We actually made a 5 year plan in January where we talked about saving for a deposit for a house and looking at careers for me finally. He had no symptoms of anything. He has always suffered with migraines since his illness started and that has nt changed so they never concern us. He had his scan a few weeks ago and neither one of us had any worries. He's fine. He had no signs this time. We never even considered a recurrence. Oh how your life can change in one minute. We had the phone call from a new doctor and bam, its back, talk about knocking you down. We both just stared at each other, knowing what this means. This isnt an abstract sentence thats full of imaginary scenarios of what may or may not happen. We've lived this twice. We know whats to come. And there it was, the past experience and what came with that, plus adding on teenagers now and their emotions. Plus our own dissappointments and dreams that are now 'on hold'. We never planned a future because we never knew if we had one. So we lived day by day and appreciated all the time we had. And that time just kept coming, to both of our surprise. But now. Our lives have been thrown into chaoes, again and we never even saw it coming. We've gone into survival mode, organising our finances this time and knowing where to get help, and in a way we are more prepared than ever. He needs button up PJ's and certain things for hospital.
Hes so incredibly brave and faced each surgery with calm composure, but hes scared this time. Hes unflappable, and we re both scared. His heart went dangerously low last time and scared the surgeons, so we know thats there lurking in the corner of our minds. What if? I dont speak it, we will get reasurrance from the doctor and I know when hes in surgery it will be incredibly difficult waiting. More so than ever. I have hung on by a string so many times over the years, just getting through each hour, the minute sometimes when its too hard. We are waiting for surgery dates and we know nothing other than its back and surgery is next.
I feel like Im Ok most the time, I get waves of emotion that ride over me and takes me to food. I get fed up with people telling me to be positive. I know people dont know what to say and I have the most beautiful friends and family. But it grates on me, and I know its me with the problem. I feel unable to express a negative emotion without being stopped and told to 'be positive, you must be positive'. I am positive, but Im also incredibly sad and angry. I am allowed to feel any emotion that my mind and body is experiencing right now, because that will help me process this weird situation. Being positive isnt always in my head. It is, alot of the time. But sometimes its not, and thats Ok too. There s alot to come, and I hope by writing this down I can get through this time with my thoughts being expressed and clearer.
