Thursday, 22 May 2014


I started chemotherapy at the same time I started cannabis oil, lung cancer don't have markers to check my progress so it is difficult to see which one is working, I kept on the chemo as I feel it could work synergistically with the cannabis. The moment I feel toxic, I will stop chemo.
Alternative cancer treatments were what I was aiming for. I have read scary stories about conventional cancer treatments and how toxic it is. Patients die from the side effects and just the body not being able to take all that poison. But, these cancer cells are aggressive and needs to be stopped from spreading asap, I nearly died in Spain and I will do whatever it takes to keep living. I check in to the hospital for Chemotherapy, August 2013. They needed 2 days to stabilise me with steroids, and then we were ready. The nurse presented me with my very own - chemotherapy book. It will hold the records of my chemotherapy cycles and there is information on the side effects and when to call the hospital or go to A&E.  The goal clearly read "to prolong life and/or improve the quality of life".  There is no cure and it's palliative care I will be getting. As I watch the drip flow through my veins I try to convince myself, this is going to work, they have studied this, they must know what they're doing. I have friends who had cancer, they went on chemo and are now in remission, they didn't have lung cancer but it gives me hope.  I am getting 600mg of Permetrexed and 90 mg of Cisplatin in 4 cycles three weeks apart. How my body reacts to the chemo will be crucial. During one of our discussions, the oncologist's sentence started with "If you make it to the third cycle….." The team was not feeling confident coming into the treatment, for one, I was really weak, and they think I waited too long to get the treatment. What happened in Spain also made my condition worse than it should have been.
Chemotherapy is a type of cancer treatment used to kill cancer cells. The aim of the treatment may be to cure cancer completely, help make other treatments more effective, reduce the risk of the cancer returning, and to relieve symptoms. It is given in tablet form or through an IV which I had. My concern is that chemotherapy does not distinguish the good and bad cells, they just attack them all.
I stayed at the hospital for another eight days, that seems to be my magic number. I was too weak, they needed to keep me in. The hospital made arrangements for my home oxygen to be delivered ahead of my coming home. It was a long week, I slept whenever I can, it was hard as people kept coming in, doctors, medical students, the chaplain, the mobile shop, nurses, support groups. I was on steroids and pain relievers. I was getting moved around the hospital too on my bed, the CT scans, X-rays, ECGs seem endless. When I finally got clearance to go home, I felt relieved. While at the hospital I was still parenting, I would call to check if they've done schoolwork, if they've eaten, one time I ordered them dinner from my phone. I am very hands on, we home school, this new situation is very challenging for my kids too and I feel so guilty. It feels like I'm forcing them to grow up and mature now rather than on their own time, it's unfair. I was still very weak when I got back but I was happy to be home. My husband had to go to Hungary for business but luckily a friend came to stay with us for a week. I don't know what I could have done without her, thank you so very much G. She took care of me and the kids for a full week, even unpacking our luggage from the Spanish trip, training the new help we hired, and just being there for moral support, and to watch that I actually rest and not try to do stuff. I could not even manage the stairs, food had to be brought to me. At this point, we had to hire a full time maid too and a tutor for my daughter. I hardly stay in my room before all this, I was always up on my feet even at home. But, I'm stunned by my own weakness I had no choice but stay in bed. The first week was the worst and I hope that really was the worst of this wretched disease. I was so weak I only managed two full showers in a week. I was in bed most of the time, too weak to even read, the sound of the oxygen concentrator my only reminder that I'm still alive. The next two weeks, I slowly regain my strength but only just. Luckily, my side effects were manageable, my legs hurt, I feel tired, my eyes are teary and blurry, but none of the horrible things I hear like nausea and bleeding, thankfully. The second cycle was a breeze, I was cleared to go back home after chemo but I was still very weak and useless at home. But, at least I can now read and get back on to the University of Google for more research. The third cycle however was a defining moment. I had pleural effusion. A pleural effusion means that there is a build-up of fluid between a lung and the chest wall. The pleura is a thin membrane that lines the inside of the chest wall and covers the lungs. There is normally a tiny amount of fluid between the two layers of pleura. This acts like lubricating oil between the lungs and the chest wall as they move when you breathe. A pleural effusion develops when this fluid builds up and separates the lung from the chest wall. They had to drain this fluid so I can breathe better. A tube was inserted on my back. Let me say that this was more painful than childbirth, seriously. I was moved to a special monitoring ward for patients with advanced lung illnesses. I had gadgets attached to me and a nurse there to watch 24/7. I had that drain on for 24 torturous hours, I couldn't even walk to the toilet, I had to use a bedpan! and even that was excruciating. When I stabilised they moved me to a private room for some much needed sleep. Again, I was confined for 8 days. Things started to get better after the 4th cycle and my scans have shown a reduction in the size of the tumours, hip hip hooray! You can't have too much of this poison so they told me this is the last full cycle and I will now get maintenance chemo which is 600mg of Permetrexed every three weeks. I just had my 10th last week. Making it all the way here was a long, hard, trying, painful process. The cast of characters at the chemo ward constantly change, I don't dare ask what happened to them. I have nothing but adulation for the nursing staff, they are all genuinely sweet and nice and so committed to their work, thank you for looking after me so well and with dignity. 

I was told that chemotherapy will eventually stop working. The next plan is to join a clinical trial for more targeted therapies aimed at controlling my mutation. There is no known cure for my rare exon 20 insertion mutation so this is the only chance I have, or natural treatments which I will be exploring. I am now going for an integrative approach. Wish me luck!