I feel as if I should be in confession; bless me father for I have sinned.. it's been nearly two weeks since my last blog entry. I do have quite a good excuse though.
To cut a long (and painful) story short, I was in hospital for a week, went in on Wednesday 7th and was released on Wednesday 14th. So the second chemo session wasn't as 'light' as we had hoped it would be. I had diarrhoea with blood in it for over a week so they kept me in. The other annoying effect is that my weight has dropped again quite a bit - the lowest weigh-in was 54 kg. Maybe for some of you featherweights out there, that doesn't sound bad, but considering my 'normal' pre-cancer weight was always hovering around 65 kg, then it gives you an idea. I've lost pretty much all muscle mass and I'm just wobbly and weak, not good anyway, but certainly not good for fighting side effects of chemo or recovering.
The diarrhoea combined with loss of appetite just made it worse so on Saturday I had a tube inserted via my nose into my stomach so that I was at least getting the daily calories I needed without having to eat. The whole experience wasn't pleasant, and I have now discovered that my gag reflex is very sensitive! It only took a few minutes to insert the tube, but it was really grim. You can't feel the tube in your stomach at all, but you do feel it at the back of your throat and that is a weird, and uncomfortable, sensation. Each time you get disconnected, the tube needs to be flushed with water, so they syringe about 20 cc of water into the tube.. sounds simple enough. Well, that was the one of the worst parts.. I have no idea why, but that really made me gag... the nurses were all surprised at how severe my reaction was (probably thought I was being a complete wuss!) but I couldn't help it. At certain points, even though you don't taste the liquid going down, you can feel it and that sometimes made me gag as well. All in all, not an experience I would recommend.
Despite the tube and the diarrhoea, cramps, weight loss etc... oh and I forgot to add (as I write this I fear I am sharing too much, but since this is my outlet, here we go).. herpes on my right bum cheek! Yes, part the chicken pox virus has been happily living dormant in my body for years waiting for the opportunity to manifest itself! So, this was its moment to shine and where did it decide to shine? On my bottom! This came in the form of a bruise like rash on my bum; we thought (Ed, Caela and I) it could have been from lying/sitting down a lot, but on closer inspection by professionals (6 at the last count) they diagnosed it as herpes. Not serious, caught in the early stages (wish the same could be said of the cancer), so had a week of tablets and it has cleared up. So, where was I .. despite all the crappy symptoms, the week in hospital wasn't as bad as it sounds.. after the first night I had my own room, thank goodness because the cacophony produced from the three older ladies in my ward was quite unnatural and disturbing. I spent several hours awake listening to the alien sounds trying to liken them to anything.. the closest I got was the Tardis from Dr Who, bubbling test tubes from a laboratory and weird animal noises!
Needless to say, I was very happy to be moved to a private room which was very nice. A room with a view, albeit of Leidse Rijn (newly built residential area) and an en-suite bathroom! The timing of this hospital visit was also shit, because Caela had only arrived the afternoon before.. so at least having my own room, with lots of space to spread out, meant that Caela was basically with me most of the daytimes so that was really nice. Of course we'd rather having been out doing other things but if we had to be there, then it was a nice environment to be in.
There is some good news! My doctor, Dr Herder, who is leaving, or rather has left to move to Amersfoort hospital (not far away) came in on Saturday morning when Caela was there too, and told us that the chemo is working well and the tumor cells in my body have gone from 1,100 (before any chemo) to 300 after the 2nd chemo!!! She said this is a really good result, they like to see the number of cells below 500 after the 2nd treatment and so that is a really good figure!!! I'm so pleased, I mean, after having to deal with all these side effects, it really would be unfair if the chemo wasn't even working. Heartening to know that the cancer is also suffering. In addition to that, she also told us that once I have had the four initial chemo sessions, I will move on to 'maintenance' chemo which is only one type rather than the two types I am having now, and that means the side effects are much less severe. Phew. At some points in the last couple of weeks, I have been in tears wondering how I was going to cope with continuous chemo with these side effects... I didn't think I could handle it. Well, at least I don't need to worry about that now.
So after a week, the doctors and nurses all agreed it was fine to let me go home, with the tube still in and I would get a sort of 'Dora the Explorer' backpack with the machine and bag of food in, so I could have my food on the go! I got out around midday on Wednesday and the woman from the company supplying the food and equipment came around 13.00 to deliver and explain how to work everything. Within a couple of hours of getting home I was hooked up to the machine.. not too complicated and the same food as in the hospital. The first day was ok.. I mean, like I said, it's really not a pleasant experience, but I just tried to focus on the goal: getting fattened up for Christmas.. yes, literally. I am flying home on 21st December and I need to be strong enough to go, so the plan was to be on tube feeding until the morning of 21st and then take some liquid food supplements with me to England to make sure I get my calorie intake if eating real food still isn't going that well.
Well, the best laid plans.....yesterday around 17.00 I didn't feel good and had to throw up and the tube came out which was quite a disgusting and heave-worthy experience. The tube was hanging in the toilet out of my nose... I was still heaving, crying and thinking how horrendous this all was and Ed came to my rescue, as ever, calming me down, pulling the tube out of my nose. God, how disgusting. After a few minutes when I had brushed my teeth and calmed down, I just felt a huge relief to have the thing out. Then I started crying again because I just couldn't face going back into hospital .. not again! My lovely friend, Karen arrived on Wednesday and I didn't want a repeat of last week... urgh. Ed called the hospital and they said it was fine to stay home tonight, I had almost had a bag of food anyway so they are going to call us this morning with their recommendation. My suggestion is for me to start eating properly, because my appetite is definitely coming back. I can't eat as much as normal yet, but I can build that up and I have these liquid food supplement drinks that the dietician had ordered for me to take to England so I thought I could try a few days on that instead of the tube. I am crossing my fingers that they agree that is possible because I really, really, really don't want to have the tube back in.
Once again I have to say how fantastic the healthcare is here. I know we pay for it, but it is just incredible how efficient, fast and well-organised everything is. All the departments in the hospital work together so they get a whole picture of the patient and it's just impressive. The nurses and doctors are all so kind, friendly and helpful, no question is too stupid, they have time for you, they are sympathetic and just amazing. They were also really complimentary about my Dutch (always a bonus!) which makes me like them even more! I think the only time I spoke English to staff was when Caela was around because some of them spoke in English so she could understand and there was one male nurse who seemed to like speaking English,
So my mission for today and the next few days is to eat as much calorific food as possible. I know she is only trying to help, but speaking to my mum on the phone last night, she started suggesting foods to eat, in the end it became a bit of a tennis match back and forth with her suggesting something and me returning her serve with a 'No, I don't fancy that!'... "What about custard, .....yogurt... milkshake" It doesn't help just listing foods at me, mum! I am fully aware of which foods have high calorie and nutritional value but that doesn't mean I want to eat them or have a taste for them. The really annoying thing is that even when I start eating something I really want to eat, after a few mouthfuls I get a strange taste in my mouth which doesn't go away so that is why it is sometime hard to finish things. I really hope that my taste buds start to come back once I am on a different type of chemo. Also wish I could have some booze! I'm not going to at the moment because it's not a good idea while you are on chemo and I actually don't even really fancy it, I just like the idea of it.