Right now, I am filled with mixed emotions. Let me explain, 4 years ago I was diagnosed with cancer it took some getting used to just to accept I had it. I was knocked off my feet when I learned I had Hodgkin’s lymphoma. I cried for days, listening to ridiculous comments like “at least it’s treatable” “yea but you will get better” “your strong you will beat this” ” it will be over before you know it” so here we are almost 5 yrs to the day that I started treatment.
During that time I have had ABVD leading up to Christmas 2011, I had it every 2 weeks. I can recall how painful it was, how cold your arm was when it was going in. But I felt weak whilst appearing strong to those around me. My whole self had imploded in on itself. I was low, depressed even suicidal at times, I didn’t cope that well although the world could not see that. I just appeared as though I was walking on water. That nothing could touch me, no one could and a desease certainly was not going to.
The disease was everywhere, I was riddled with it from head to toe. They did not expect me to make that Christmas without treatment. But I got into remission from 4a. Now while that sounds amazing, I never once felt it had left my body. I never showed it but I was still in allot of pain which just kept getting worse and worse as time went on. My legs became so sore walking eventually became almost impossible. I knew it was hiding in my bones I just knew it. Scans were not picking it up. Because it only finds clusters.
We bought our dog Faith when we went ( we because me and my wife are 1) into remission. Faith was a great distraction as I made my way towards 6 monthly visits to the hospital. All was fine apart from the pain in my legs that was unbearable sometimes. The fact I could not feel my hands did not help either.
Then the day came, I felt a lump starting in my neck again, exactly where it had started last time. I did tell my wife but thought I would have my holiday with the lads and deal with it at a later date. We did and had a great 10 days together as always. I kinda knew the end of that holiday was the start of a nightmare. Although we had an amazing time, the cloud was hanging over me like a lead weight.
As I thought on seeing my consultant, he told me I would probably need ICE chemo as an in patient 3 days and nights at a time. Every 3 weeks. 2 weeks before this diagnosis I had set up Cancer stories (friends) on Facebook. Hoping I could reach out and help others in their time of need. Little did I know it would become something I would need in the future. Now just so you know (not a pity party) ICE chemo is no joke. It’s real nasty stuff, real nasty. It effects you from the second it enters your body effectively killing all good and bad in your body. I didn’t loose my hair on ABVD, I did on ICE although it took a while.
They made allowances for me as I did not want it done as an in patient, I had it daily as an out patient over 3 consecutive days. Walking through the doors on day 1 takes courage, I drove there and Andie drove home. It lasts all day leaving at 5pm from an 8am start from home. You wake up in the morning, feeling determined but having to get up with little or no sleep having the feeling of snakes inside your head eating you from the inside. Really that’s how it feels. You then have to walk though those doors again for another full day, although 1 hour shorter. Bear in mind your having drugs put in 3 times quicker than if you were an in patient.
You go home with the feeling of snakes even worse, you shake and cry. Then you have to get up gain courage and walk through the doors again. I tell you only the really brave can do such a thing. The power required is super human and is impossible to do. I am a good man and have allot of good strong friendships, people that are there for me no matter what. Of course God is there to, there is nothing like a chat with a buddy who can make you laugh in these situations though.
Cutting it short this process was completed 3 times having ice 3 days on the trot. In between the abcesses, 8 teeth extractions looking like marlon Brando just to get a transplant.
Transplant I hear you say, yes that was the next stage. I still needed chemo over a 6day and night period attached to my stand all of that time. Whilst isolated in a small 15 ft by 12ft room. That was hell. True hell. BEAM chemo is approx 1500 times stronger than any other chemo I had had before. I was going to go neutrapeenic, where I had no white blood cells at all to fight infection and risked dying. Everyday in there was like hell on earth. It was a horrendous fight that I had to win. I had won previous battles could I do this too. Man I was scared, more so for my wife and family than for me. My wife had already lost her dad at 59, and lost her mum to Cancer at 63 with only 4 hours warning.
Can you imagine what she was going through, I can’t. But Andie came everyday I was there bringing me a coffee everyday and sitting with me from morning till evening. She is my world, my strength when I have non. My light in the darkness. My crutch on rough ground, my buoyancy aid in deep water.
Well today I went back to the place where I was isolated and discharged back to southport hospital. It feels like the end. Feels like I have come to the end of a road and there are no celebrations, no flags. No people overjoyed, just an end of a road. I feel empty, where do I go now. What do I do now, rest. That’s what they tell me rest for 5 weeks. Then a scan in time to see if I am in remmission. But what do I do till then, people don’t seem to want to read my blogs anymore. I need to feel like I am of some use to people, like I have a purpose. Where is my purpose do others feel like me when it’s seemingly over.
I don’t know where to go from here but I need a focus that’s for sure. But non is there. No one is there, not because they don’t want to be but because of the dangers of infection.
I tell you the truth the end is almost as bad as the start, I feel like I am gonna get depressed. Then what would all this be for.
No I refuse that, no way I will get depressed and fade away. I am going to continue to encourage others, I am going to continue to love others where they are at. I will also continue to blog, why because I know it’s affected 2 people’s worlds and that makes it worth while. Even if 1 person reads a day and helps them to have hope or decide to live a better life. I want to be there for that person.
So feel free not to share my experiences, but I will carry on anyway. I will continue to reach out my hand and help others up where I can. I will not give up no matter how tired I get. We are made to help others not take from others.
My desire is that people out there somewhere are encouraged, even driven to save their lives by the experiences I have had. They can’t be just to end at a road that’s not finished. I need to find the start of the new road somehow. I will keep looking but for now I will just keep doing what I am doing.
Have a good weekend