It has been a while since we last heard Jan, so I wanted to reach out to her to see how she has been . If there are specific questions that I have not covered that you want to ask Jan, feel free to comment below.
What has changed regarding your diagnosis since our last conversation?
I'm still here, which is a bonus! On the serious side my mesothelioma does not seem to give up his fight. Having finally passed by the EPPDecortication when my pleura, diaphragm and pericardium were removed, I thought, finally a chance to get my life back to normal. As you may know we had quite a few months to get through the recovery and of course, like my luck, I was left with a lot of extra pain.
In April 2010, a small observation showed on my analysis, but I hoped it was wrong. It was confirmed that December mesothelioma was back effect. Fortunately, only a few tumors were visible on the scan. Although I have some growth in my right lung, he remained slow growing.
Have you tried new treatments?
In July, I received an itchy burning sensation. Because I had lost some weight, I could see a piece appearing just above my breast, mesothelioma had traveled outward and joins the bone and the muscle that was very painful. I had 3 sessions of radiotherapy seems to have calmed down, although every few weeks, I can feel it a little flare. In March 2011, I returned to UCLA and had Cryo-Ablation on larger tumors. I was hoping just had some tumors, but from reading the analysis, it seems that mesothelioma began to spread. Unfortunately, cryoablation is still not available in the UK, and stay in Los Angeles is not really an option. Among the procedures that you need at least a 7 day interval before doing the procedure again. My UCLA doctor is trying to get some hospitals in the UK interested, but it does not cure, it has difficulty getting them on board.
What is your attitude / mentality towards this diagnosis?
I have always tried to be positive, to be told that I have less than a year to live still here, I think it helped. We all have bad days, even if you have not a death sentence, but we get through them. I try and tell myself that it is normal.
My only hang up the moment is that mesothelioma has only been away for a year after so much pain that I put my body through even though I am sure he is lazy. I know it is still there and still growing, so I have to be as stubborn as he is. When I read stories where they had remission for over 3 years, I feel happy for them, but a touch envious that did not happen for me.
I always thought that I could continue to buy time, either by chemotherapy, then eventually have surgery. My mesothelioma seems to want to destroy me, having had so many treatments over the past 8 years. I know others who have had only one or two treatments during the same period, but after seeing what came out of my chest, maybe I just had too much for the chemo to kill.
Can you tell me about your up days and down days?
My days tend to be low when I do not feel good. I call them my "Days Nothing". It is usually so my body is more sore than normal and I do not sleep well or when I wake up and my chest and injured ribs which then makes every joint in my body ache. If I'm not careful these days, I might end up feeling sorry for myself and would be a waste of a day. Before you ask, yes, I got a few of those days in the past two years, duvet on the sofa wishing I could stop the world so that I could go out for a few hours.
I get frustrated that I did not have the energy to do things and tire easily. I forget what I put my body through to try to get rid of mesothelioma. We expect our body to function normally, forgetting that they were beaten, poisoned and zapped with radiation and are still struggling against a cancer that does not know how to die. I love DIY projects and would decide Friday to decorate a room on the weekend, I can not do that. I once proud house, pulling furniture to clean behind etc, these days I trust my husband ?? say no more!
My up days are when I get out of bed and the pain is at an acceptable level, it is even better if the sky a little blue in it and the sun shines (very rare these days -ci UK). If I'm not working, I like nothing more than to be with my husband and dogs walking on the fields and enjoying the fact that I can still enjoy life.
I like going on vacation just for the heat, I am one of those who now spends his time on the deckchair reading a book rather than the pool or up and down the beach. My dream is for the UK to have the time to California, Florida or even Spain. I would like to rent a house in the sun but my husband would not be more I could never leave my dogs and heat would be too much to bear (one of my dogs).
I have few days when I wonder why I put myself through the pain and discomfort of cancer, it will be the end as will the pain worse, how will I cope. These are the days I spend more hours playing on testing or research on mesothelioma and then find something sad and wish I had not read it.
Then I have normal days when I go to work, I forget mesothelioma and just focus on the work. I always get frustrated because it affected the way I work and how much work I get through. I am much slower, I found my memory is terrible and I have to write notes on everything.
Any tips or advice you would like to share with others?
This is a difficult question, do not be pushed in one direction by your doctor. Although our options are not that varied, think carefully about them. We still do not know the best way to go for treatments such as mesothelioma each person is different. I know people that have held back until they actually do something, and others went straight to chemotherapy or surgery
Learn all you can about your own illness how much growth you have, is it thickens lung bottom or all around, is it individual tumors or does it look like mass of mountains, what mesothelioma strain it is. These are important questions that must be answered as soon as possible.
We have all heard the word terminal, but in essence what has changed in your body for the day? Do not let the word terminal take over your life. I know it sounds easy to say, especially after surviving all these years.
Sometimes I would say that ignorance is bliss, never read the websites when you feel low just in case you come across a sad story.
We would like to thank Jan for taking the time to share his journey with mesothelioma on our Wall of Hope. Next week, we'll share part 2 of the story in January
UPDATE :. Journey Part 2 January
