How do we described something that is going to take us away from the life we love?
When you are first diagnosed with cancer the wind is totally knocked out of your sails, especially when its the last thing you are expecting. In today's world must people have an inkling that it could be cancer before they get under the knife, in my case and that of many meso sufferer's it's one of the last things we suspect.
When you are first diagnosed with cancer the wind is totally knocked out of your sails, especially when its the last thing you are expecting. In today's world must people have an inkling that it could be cancer before they get under the knife, in my case and that of many meso sufferer's it's one of the last things we suspect.
I started the blog because I had tried something different in treating the meso and from there it has become my personal diary as I battle through the disease. I have wrote about my feelings on that day, or complained about pain, all I can say is I am pleased the blog wasn't around when I went through the chemo in 04 and 07. I found something I had written and I wasn't in a good place, I was only on no 2 of the 07 round of chemo, how I managed to get to no 5 I will never know but we find the strength.
Not only does it take our strength but that of our family, the acknowledgement that maybe we don't get to do all those things together we planned when we started our journey together. Both parties try to be strong for each other, both in reality living a lie because we need each other to be strong together. Neither of us bring up the subject of meso, our discussions on it are short because we don't want to face the truth that we will hurt each other and tear apart the life we have created.
Three monthly doctor visits put us both on edge, both of us going into our own deep thoughts but still unable to totally discuss this terrible disease, yet having to face upto whether it has returned, or grown.
I thought I had beaten this cancer twice, once after the first diagnosis, surgery and round of chemo then after surgery again. Now I know it can't be beaten and I live with the consequences of what has to be. I constantly wonder if what I have done is the right way to go, but you have choices and you have to make them to the best of your ability. The specialists can't give you a detailed itinerary of what will happen because each case is so different.
I hate this cancer with all my being, it has destroyed my body, taken away the years I have grafted for and brought pain and suffering to my family and myself. There are days when I don't want to get out of bed because I have no energy and days when I have to get out of bed because lying down has created so much pain in my side. We have to make the most of each day and getting up each day is always that first step to staying positive.
Not everyone has the same problems or in fact pain, there's an old saying 'you cut your cloth according to your means' in my case I suffer from pain and we pretty much don't have a social life because I have chosen to carry on working and by the time my day is done I have no energy left to go out and about.
Holidays are the times I enjoy because I do nothing all day and soak up the sun and heat, unfortunately now flying always seems to leave me with problems after the event. After travelling so much in 05 I hate airports and wish there was an easier way to travel!
I hate the cold as it gets into every scar and every bone in my body, my back becomes ice from the inside out.
You may have days where your body goes into fight or flight breakdown, these are scary times, but like everything else to do with mesothelioma you cope, you carry on and you always have hope.
Hope for a new treatment, hope the meso just stops growing, hope that tomorrow will be better than today.
Chemotherapy is a hard regime if you are unlucky, but you have hope to carry you through the violent stomach pains, the nausa, the sweats. On day 6 you say never again, on day 18 you are ready to go through the whole cycle again, this is hope and determination. How we find the strength I do not know but we do and as long as I can fight I will.
I would say find support, join facebook groups that help with support either for the sufferer or for the family carer. Being a carer you are on your own, you have to be strong but unfortunately you will be the one that is left behind and as a dear friend once wrote in the matter of 24 hours she went from wife to carer, then from carer to widow. This isn't fair, we don't deserve to die and you as our partners don't want us dying.
I feel for each of you who is embarking on this journey, I have waited some 9 years (2013) for a different chemotherapy or something that will take meso from terminal to chronic, I can't see this happening in my remaining years but I do hope it can happen in yours.
Don't listen to statistics, it men seem to go down hill straight away because of the negativity it gives, don't walk out from your oncologists office believing you have 3 months, walk out with your head saying you can get more years. If they are unwilling to treat you find someone who will. There are other great oncologists out there, just research and research again.
Don't be stubborn, don't carry this burden yourself, your life will change, you become a 3 month planner but that's better than none at all.
Good luck, may you succeed where others have failed and keep this cancer at bay.
