What awful weather, and so I thought I’d put down a few words in recognition of how well things are going. Yesterday I chose to leave the house for the first time in 5 days. Nothing too strenuous, just an outing to stop me going stir crazy, and a trip to Tesco to buy lots of thing I didn’t want. Food shopping seems pointless at the moment, I may as well nip down to the local farm and grab a bale of straw, it will taste just as good as the food I’m wasting now. I go through the motions of cooking, but it’s always a long slog to end up with a plate of blandness. Apart from that, it’s been easy.
Chemotherapy continued at The Christie last Thursday. We’re now over and beyond original plans, chemo has been extended. MRI results were in, and had been seen by Mr L. The next stage will be discussed by the hepability team today. The MRI scan confirmed what was found in the CT scan, no significant change. No growth, no shrinkage of the tumours in either my liver of lungs. They will now consider the options, there are various procedures that can be tried to get the best results from a liver resection, if that‘s the way forward. I‘m hoping so and not really considering other options at this stage. By the time you’re reading this I’ll be anxiously waiting for the phone to ring to let me know what’s been decided. Dr. S and Mr L had spoken briefly before chemo last week and agreed between them to stop the monoclonal antibody drug Avastin, so last weeks dose was my last one. This has to be stopped six weeks prior to surgery, so I’m seeing this as a positive sign. However, that only leaves me with one line of defence, which also leaves me feeling a little uneasy. I don’t want the tumours to start growing again, I’ll have to hope that the Flourouracil continues to work on it’s own.
Whatever has been happening elsewhere, I’ve been continuing to deal with the side effects of chemo. I can’t complain, it could have been worse. There are farce worse chemo regimes than the one I’ve been on, although coping with three different drugs and their effects has been hard at times. Providing you’re prepared to write off three days after chemo from fatigue, and then accept that you’ll only have enough energy to do anything every other day, nausea, and worst of all a mouth that feels like the inside of an inferno most of the time. It’s like the lining of your throat and mouth is peeled away every morning. The prescribed mouthwash might sooth it for a while, but it comes at the cost of losing all sense of taste or feeling in the mouth. In the circumstances, losing all sense of taste is not such a hardship when everything tastes the same anyway. Apart from that it’s been easy.
Except for the sleep that is. Or lack of it, or not knowing when it’s going to happen. I still fall asleep during the day, I can’t help it, I can’t keep my eyes open. Despite the afternoon nap, I’m falling asleep again by 9pm. No wonder I then find myself wide awake at 3am. I try and catch up with TV I’ve missed in the early hours of the morning, I’m watching so much I’ve almost learnt sign language. (You have to watch TV at 3am to understand that.) Apart from that it’s been easy.
Except for the dental problems. I’ve still another two weeks to go before I see the maxi jazz thingy doctor at the hospital. I can’t help but shout in my head “We Come 1” every time I see the words written down. One of the two teeth that are to be extracted is so loose I could pull it out myself, it’s like being a seven year old again. Apart from that it’s been easy.
Boss DN came again at the weekend to remove my chemo pump, and a telling off was in order again. This time, I’m not getting the line into my chest flushed often enough. She noticed a graze on my forehead, the result of a bit of a twist when I stood up the other morning. Somehow one of my legs failed to function properly, leaving me spinning on one leg trying to keep my balance and kissing the wall as I passed on my way to the floor. I tried to convince DN it was just a loss of balance, and just to prove the point repeated the malfunction as I stood up to get out of the chair nearly bringing DN down to the floor with me. It was worth it just to see her face, but she still considered it significant enough to record it on my school report. She left me with her reprimand over the flushing, promising to call me Monday with an appointment. She kept to her word, and we have plans to meet again to play the balancing game.
So, that’s it, I’m sitting waiting for the phone call from the Liver team. I apologise in advance to any unsuspecting person that calls about PPI you’ve only got yourself to blame. I’m not sure just how much the hospital will tell me over the phone, but at least I should know dates of appointments and a rough idea of what they have in mind for me. This is a pretty big step and is likely to map out the next 6 months of treatment and hopefully surgery. You may have noticed all my moans and groans have come out as the tension rises. I didn’t start writing today with that in mind, but by the time I came to read it back and composed my thoughts into some sort of order I realised there’s an element of depression in there. It would be easy to pretend everything is great, but that’s just as dangerous as being depressed. I’d rather see it as a depressing read than being depressed. Put it down to the weather. What awful weather !