It has been a strange couple of days, the 15th was my 1st year anniversary since surgery and even John my surgeon sent me a anniversary message. I had posted a card to him also but I know he hadn't received it by his message.
I thought it would be a hard weekend on hubby but even my best friend Lorraine called up and she was reliving the day. I hadn't realised how on edge they both were. Having arrived at Sheffield at 4.00 pm expecting me to be in PCU I was still in surgery and they waited another 5 hours for me to come out. My only memories are of waking at 3 am and wishing I was dead then being hoisted in the air and nearly crying with pain, then my first night on PCU, when I was so uncomfortable and the nurse called Richard looked at me with despair in his eyes as I just could not get comfortable and wanted to rip all the wires and tubes out of my body! Seems I missed quite a few hours out!
I am still alive though and without that surgery and all the pain of recovery I would not be here to bore the pants off those that read this blog. It's also good to know that others too are still going strong and although I have probably had the roughest journey through recovery of them all, I have to remind myself that I had undergone a lot more treatment before hand than anyone else. I had even had my gall bladder out within the same 12 months so my body had been tortured quite alot.
I have asked if Dr Abtin came to England could he demonstrate his cryo on me to rid my left side of these nodes but I guess its not likely. I do hope that the convention this year brings more response to worldwide treatments offered and our British laws can be relaxed a little where these treatments are concerned. I often wonder how the big chiefs of this country would feel if their loved ones were suffering with mesothelioma and told to go home and die? I bet they would be changing the system left, right and centre to ensure the best possible treatment becomes available - maybe I am being a little too hard but having known a few people personally who have died from mesothelioma I think I have earned the right to be hard, let alone battling this disease myself. I thank God that we have some dedicated Doctors who have a passion for helping those with this disease but alas their are too few for the numbers that are emerging.
I wonder why meso can lay dormant for years, does it start poisoning our system from yearly on but we just cope with the toxins or damage in a normal way until it builds up and then starts multiplying in numbers. We know how wonderful the human body can be and it still amazes me that it can repair itself even under the worst circumstances.
A friend of mine rang the other day. A couple of close friends were mowed down by a wagon when they were out cycling, the wife was lucky to be alive and was unconscious for over three weeks. Image waking up not knowing what happened to you and being in so much pain, its bad enough when you sign up for it, but to be in ITC with no memory and horrific damage to the body? Yet 10 weeks later her pelvis is starting to mesh back together and for the first time she was able to sit up, with lots of support, but that is progress and a small miracle.
Over Christmas an old colleague of mine rang, he has set a candle in every church he has been to over the last 5 years. His late wife had mesothelioma, if I have already mentioned this please forgive me, and after undergoing surgery to remove most of her chest survived another 25 years, she died of something totally different but survived one of the most deadliest cancers out there. Anyway he has promised to light a candle in Mongolia when he gets there. When he lit one in Japan he sent me a card and I was mystified at first about the post mark until I opened it. This is why I think I am still going sometimes, other people have faith in you surviving and that adds to your own positive outlook on still being here. I hope he is feeling better himself having had to go through an operation over Christmas.
Still down on the morphine, at 200 a day I might even think about dropping it another 20 this next week. I don't feel that much different, apart from my eyesight is getting worse! This happened last January too but I am going to ignore the fact that my eyes improved after the cancer was removed as I don't want any negative thoughts entering my head .. now the weather is improving I will get myself to the opticians and get them tested!
Should you be contemplating surgery to debulk this terrible cancer please don't let my ramblings put you off, it was the best thing I ever did and I know when I email other survivors they faired much better than I, so please consider removing the cancer while you are strong and healthy .. I know it sounds strange to say go through it and put yourself through hell and a long recovery but the cancer is gone and if you haven't tortured your body as much as I have you could be back on the golf course within 5 months and living a normal life.
As for hubby, after getting this first year out of the way, he is becoming much more relaxed and I can feel the tension slipping out of him. No more heart attack pains, no more wondering whether I will see next month or not, no more booking holidays within 4 weeks of going, long term planning has now become part of our lives again, which before this time last year was something we would never contemplate since 04. I know he still bans me from doing certain things and going out when its cold and windy and gets annoyed at me when I do something that I know is a challenge too far, but overall he has been a solid rock for me, sometimes unappreciated I have to admit. Lorraine pointed that out yesterday when she said they were standing by my bedside and hubby said "I love you" and I retorted "That's all well and good but how's that going to help me?" This was the day after surgery, but I cringed when she told me yesterday.
The only way now has to be up and I mean business this year, pilates to strengthen, food to nourish and hopefully begin a normal life. Maybe my expectations are still a little high but I owe it to John and his Team for all those hours in surgery and the aftercare at Sheffield, my GP's, District Nurses and my Macmillan nurse, my friends and family and all those who have supported me through the last year .. including you. I don't wallow very often, just seem to when I write on here, but this is a cleansing of the negative side of me to ensure I face the day stronger.
My other best mate is suffering badly with back\hip\pelvis\knee pains, no one seems to be doing anything positive for her and the pain is wearing her down. Up until this she had no idea what pain was like day in and day out, as a nurse she is now empathising with her patients and has put me on a pedestal for dealing with what I have gone through .. bad idea. But with something so uncomplicated to sort out like doing xrays or ct scans they could find out exactly what is wrong. 4 different therapists have said 4 different things, occupational health have told her its a bulging disc, another said its inflammation in her hip joint, but no evidence to back up any diagnosis. It has made me thankful, although it took years before I was diagnosed, that something so dangerous as mesothelioma is now being diagnosed in early stages.
Here's to my new life, one year on, I hope that many of you are now in the same position.