It's been a while since I've had the energy or motivation to do anything never mind a blog post. The second round of chemo really knocked me for six and since then, I have struggled to do anything and it's only in the last few days I have started to resemble human form again. I'm still in a lot of pain and am taking a lot of morphine which also has the impact of eroding any motivation I have for tasks as it pushes me into this form where I just want to fall in and out of consciousness whilst some discovery channel quietly rumbles in the background. When I started the first round of chemo I was fairly upbeat as there were lots of highly trained doctors and nurses around who were constantly assuring me that things would be ok, however there were known side effects. I also remember three days after the first infusion that I had a chat with Carol and we agreed that we would not go through another round if the side effects got worse. We had that chat again after the second round but this time we were absolutely locked in and that we would not be going through another round. With all that said, I go for my next round of Chemo on Monday 13th, giving me something like 6 or 7 days of the cycle where I have a chance to live. As the effects of the cycles are cumulative, I am not expecting the luxury of a week of normality on cycle three and at present am planning for a full cycle in bed. Things are changing as usual though and the shifting sands will no doubt come into play before I visit Ross Hall on Monday for the next infusion.
The second round of Chemo was a very long day. Carol and I arrived at Ross Hall around 10am and we left the hospital that night after 6pm. Again, the staff at Ross Hall are great and helped me get through the second infusion by giving me a heat pack for my arm. For me, the second round of oxaliplatin is by far the worst experience as the drug tends to crystallise in your veins initially causing numbing then pins and needles and then finally bruising. Apart from that, the experience wasn't too bad in the hospital however the ride home was tough as every bump and every corner taken my arm would echo and amplify ever millimetre and send waves of pain throughout my body. By the time we got home the nausea was kicking in and because I hadn't slept for a few days prior to the treatment, I more or less passed out on the couch, waking every 10 minutes or so with the urge to vomit. Carol brought a bucket and left it beside me while I slipped in and out of consciousness. At around 1am, Carol tried to get me to move to bed but I was done. I had no energy and any movement at all just made we want to hurl. At that point I am on 3 different types of sickness meds, each of which didn't seem to offer any relief. This seemed to be the mode of operation for the next 6 days or so where I had no voice and could not eat or drink. It was hell. My mouth was so dry but I couldn't swallow. I was so hungry but the thought of food made me vomit. I spent all time in bed until eventually either a change to the anti nausea regime kicked in or the infusion effects eventually wore of. The time without food or water or exercise however has a knock on effect and it was at least another week before I could think of getting out of bed and attempting to do stuff. Needless to say this was a different type of hell than the first round and again Carol and I were adamant that this was the last round as the Chemo itself was having little effect of the tumours but was killing me in the process.
I got my appetite back eventually and it was then that I started to realise the symptoms of my oesophageal tumour in that food started to get stuck as I swallowed. Honestly this just about broke me. For a couple of weeks I couldn't eat because of the effects of the chemo and then once I got an appetite back and was in a ravenous state, I came to realise that my diet had to change in order to be able to process food. This means a diet of mainly soft foods like scrambled eggs, shakes etc. I have had a few occasions now where food or pills have got stuck and the feeling is very unpleasant and somewhat worrying. I had been thinking about a procedure to stretch the gullet and when Dr Yosef phoned this week to check in on me I asked if he could organise this. I got word today that I am expected on Friday for the procedure so this will hopefully help a little with the food processing side of things. Dr Yosef when he called also mentioned that my results for Herceptin had come back positive which is one respect is good as I now qualify for Herceptin use however in another respect this is fairly bad as it indicates a highly active and aggressive cancer which is very difficult to treat. My hopes are that the authorisation and approval for Herceptin use are in place by the time we go for the next round on Monday. Herceptin side effects seem to be less than that currently being experienced with the oxaliplatin and potentially offer up a different hope. In the event that we don't get the authorisation to proceed at this point, I am thinking that we will look at reducing the dosage for the current infusion regimes in order to get more life at the other side of the session. I just can't face 2 weeks in bed with no food after the next round. It will end me.
So that's it, this is were we now are. Sorry for not getting something posted sooner but you will realise that I have been in a zombie state for a while and have not had many days where I could finish this detail.
