B is for Brutally honest

I've been feeling shitty the last few days and it's been a real challenge to find the positives.... so I have just allowed myself to wallow for a few days. It is crap feeling low and I don't like being that negative, but sometimes it just takes so much effort to find the bright side, especially when each day brings even more crap... how much more can I be dumped with?!

You know the cliché quotes you see on Facebook which are supposed to be uplifting and tell you how to live your life? The one I'm thinking of is "Dance like nobody's watching, Love like you've never been hurt, Sing like nobody's listening and Live like it's heaven on earth"... the ideas behind them might be worthy, but I still find it annoying. Well anyway, I have hijacked this wise old quote, shortened and personalised it:

"Scratch like nobody's watching"

The rash that started last week has extended, spread, gained momentum, multiplied, worsened, grown, enlarged; in other words there is a lot more of it than there was before. My body now looks like a dot-to-dot puzzle or as if there was a thirsty mosquito trapped in my bedroom last night. The itching is random and seems to flare up for no apparent reason, at this very moment the back of my thighs incredibly itchy but earlier my boobs and nipples were the focus. It has also spread to my inner thighs... near my private bits, and scratching those parts in public is quite a challenge. Some people, (often men) seem to manage to have a good fumble in public but I was trying to do a kind of rubbing movement with my arms or elbows to relieve the boob itching, but how do you scratch your lady garden politely in public?! Well, in the whole scheme of things, who cares? I haven't exactly been taking pride in my appearance lately either... no make-up, scare-crow/bed-head hair... some people might buy expensive products to achieve that effect but mine is doing it involuntarily.

Our weekend away wasn't the success we had hoped for. Got the news on Thursday morning that I couldn't go swimming because of the rash and also my white blood cell levels being way too low.. I was so gutted and so upset, I welled up when Nanny told me the news. Anyone who knows me, knows that swimming is my favourite form of exercise and if there is a pool, I'll be in it! Basically the reason I chose the hotel was because of the swimming pool so being told that I couldn't use it was really shit. So, after pulling myself together and telling myself it's not the end of the world... (again) I was ok, but I had no appetite and was feeling worse and worse over the course of the weekend. We were there for 3 nights and we didn't go out for dinner once because I had either been sick, or just felt too nauseous; I feel really sorry for Ed because he had to make do with snacks and home made sandwiches in our room (which was lovely!) every evening. Because I was feeling so low physically, it was hard to keep my spirits up and I felt like I was grieving for the life we used to have. I suppose it was especially noticeable because we were in a hotel and I was thinking of what we would normally be doing while we are away... going out for dinner, sleeping in and getting up and getting downstairs just in time for breakfast, having drinks, doing some walks, using the pool/gym and just having fun! Well, this weekend was slightly different. The weather didn't help, apparently Zeeland is supposed to be the sunniest part of the Netherlands, but we saw the sun for about 3 hours in total... and 2 of those hours were when we first arrived on Thursday afternoon. I did get some driving practice in the liquorice allsort (aka Ed's parents Peugot 107) this weekend though! It was really great driving around there as opposed to in Utrecht because the roads are really quiet! Was good to be driving again, even if it was in wind and rain.

I went back to the hospital again yesterday and today for blood tests and to see a dermatologist. Apparently the rash is very aggressive and unusual in its severity and expanse. That together with the low white blood cell count, which has dropped again today, is why I am feeling particularly crap... good to know. I have got some cream and some tablets to help. Started taking one tablet last night and it did seem to help stimulate my appetite and subdue the nausea so I made really healthy roasted veggie tomato sauce and had it with couscous and spinach and beetroot (would rather eat beetroot cold than have to suffer drinking the juice!). All good, managed decent sized portions and felt really much better... then about 2.5 hours later it was ejected from my body from two orifices. Really?! Well, even after that I still felt better than I had at the weekend so anyway that is a positive I guess.

The conclusion of all this is that I am not going to continue with this type of chemo drug. I'm so relieved. I have an appointment next week with one of the lung doctors and we are going to discuss the next steps. I imagine they will come up with another chemo drug, but I also want to explore other options.. chemo is so bloody hard on your body...I don't know how I would feel without chemo of course, but I really feel like my body needs a break from this. Nanny has agreed and so it's certain that I won't be having any chemo next week (was scheduled for next Friday) and not before I am going back home either (22nd March) which is so great to know. So now my body has 2 weeks to get stronger before I fly back and I just hope I am feeling well when I am there.. I don't want to be weak and pathetic and looking like a skinny, pale cancer patient. I know my friends and family don't care and they would look after me regardless, but I care. I don't want the kids to see me like that, and I want to have the energy to at least engage with them and play some games, have chats and to be honest, my conversation has been pretty limited (in content and quantity) lately...again, poor Ed!

I am feeling slightly better than 24 hours ago, so that must be the tablets kicking in which is good. Just knowing that I don't need to have the same chemo again next week is a big boost.

Well anyway, I feel that Yazz's 1988 classic "The only way is up" is an appropriate thought to end with. So actually, not that negative after all.