Jan’s Journey: Continuing the Battle with Mesothelioma Part 1
September 5, 2012
It has been a while since we have last heard from Jan, so I wanted to reach out to her to see how she has been. If there are specific questions I haven’t covered that you would like to ask Jan, feel free to comment below.
What has changed in regards to your diagnosis since we last spoke?
I am still here, which is a bonus! On the serious side my mesothelioma doesn’t seem to want to give up its fight. Having finally gone through the EPPDecortication when my pleura, diaphragm and pericardium were removed, I thought finally a chance at getting my life back to normal. As you may be aware it took quite a few months to get through recovery and of course, as is my luck, I was left with a lot of extra pain.
In the April of 2010, a small sighting showed up on my scan but I hoped it was wrong. It was confirmed that December that the mesothelioma was indeed back. Thankfully, only a few tumours were visible on the scan. Although I do have some growth in my right lung, it has remained slow growing.
Have you tried new treatments?
In July, I was getting an irritating burning sensation. Because I had lost some weight I could see a lump appearing just above my breast, the mesothelioma had travelled outward and attached itself to the bone and muscle which was quite painful. I had 3 sessions of radiotherapy which seems to have calmed it down, although every few weeks I can feel it flare a little. In March 2011, I returned to UCLA and had Cryo-Ablation on the largest tumours. I hoped I only had a few tumors, but on reading the scan it seems the mesothelioma had started to spread. Unfortunately, cryo-ablation still isn’t available in the UK, and staying in LA isn’t really an option. Between procedures you need at least a 7 day interval before they can do the procedure again. My doctor in UCLA is trying to get some hospitals in the UK interested, but as it isn’t a cure he is finding it difficult to get them on board.
What is your attitude/mindset towards this diagnosis?
I have always tried to be positive, from being told I have less than a year to live to still being here, I believe this has helped. We all have bad days, even when you haven’t got a death sentence, but we get through them. I try and tell myself it’s normal.
My only hang up at the moment is that the mesothelioma only stayed away for a year after so much pain I put my body through, although I am assured it is indolent. I know it is still there and still growing, so I have to be as stubborn as it is. When I read other stories where they have had remission for longer than 3 years I feel happy for them, but a touch envious that it didn’t happen for me.
I always believed that I could keep buying time, either by having chemotherapy and then finally having the surgery. My mesothelioma seems intent on destroying me, having had so many treatments over the past 8 years. I know others who have had only one or two treatments over the same period, but having seen 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 down days tend to be when I don’t feel that well. I call them my “Nothing Days”. It’s usually if my body is more achy than normal and I haven’t slept well, or when I wake up and my chest and ribs hurt which then makes every joint in my body ache. If I’m not careful on these days I could end up feeling sorry for myself and that would be a waste of a day. Before you ask, yes I have had a few of those days over the last 2 years, duvet on the sofa wishing I could stop the world so I could get off for a few hours.
I get frustrated that I don’t have the energy to do things and tire easily. I forget what I have put my body through to try and rid it of mesothelioma. We expect our bodies to function as normal, forgetting that they have been battered, poisoned and zapped with radiation and are still trying to combat a cancer that doesn’t know how to die. I loved DIY projects and would decide on a Friday to decorate a room over the weekend, I can’t do that anymore. I was once house proud, pulling furniture out to clean behind etc, these days I rely on my husband — say no more!
My up days are when I get out of bed and the pain is on a bearable level, it’s even better if the sky has some blue in it and the sun is shining (very rare these days in the UK). If I’m not at work I enjoy nothing more than being with my husband and dogs walking over the fields and enjoying the fact that I can still appreciate life.
I love going on holiday just for the heat, I am one of those that now spends her time on the sunbed reading a book rather than in the pool swimming or walking up and down a beach. My dream would be for the UK to have the weather of California, Florida or even Spain. I would love to rent a house in the sun but hubby wouldn’t plus I could never leave my dogs and the heat would be too much for Bear (one of my dogs).
I have rare days when I wonder why do I put myself through the pain and discomfort of the cancer, what will the end be like, will the pain get worse, how will I cope. These are the days I spend more hours reading about trials or research on mesothelioma and then find something sad and wish I hadn’t read it.
Then I have the normal days when I go to work, I forget about mesothelioma and just concentrate on the job. I still get frustrated because it has affected how I work and how much work I get through. I am a lot slower, I have found my memory is terrible and I have to write notes about everything.
Any tips or advice that you would like to share with others?
This is a hard question, don’t be pushed in to one direction by your doctor. Although our options aren’t that varied, think carefully about them. We still don’t know the best route to take for treatments as each person’s mesothelioma is different. I know people who have held back until they really had to do something, and others that have gone straight on to chemotherapy or through surgery
Learn as much as possible about your own disease, how much growth you have, is it thickening at the bottom of the lung or all around, is it individual tumours or does it look like mass mountains, which strain of mesothelioma is it. These are important questions that should be asked as soon as possible.
We all hear the word terminal, but in essence what changed in your body from the day before? Don’t let the word terminal take over your life. I know that sounds easy to say, especially after surviving all these years.
Sometimes I would say ignorance is bliss, never read sites when you are feeling low just in case you come across a sad story.
We would like to thank Jan for taking her time to share her journey with mesothelioma on our Wall of Hope. Next week we will share Part 2 of Jan’s story.
UPDATE: Jan’s Journey Part 2