The weirdest thing...

I'm feeling better and better every day now that I'm back at home. I've been told to not let my weight drop while on the treatment, so I've been taking full advantage of this perscription from the docs. I'm eating like a horse! At least four large meals a day with fruit and protein shakes in between. The funny thing is I'm still loosing weight! I was told that the chemo uses up a huge amount of calories as it is processed through your body,the nutritionalist ive been seeing has recommended 2000 calories per day while in an inactive state, more once I'm up and about, which I am. I suppose I should take advantage in between treatments while feeling sort of normal.

The weirdest thing happened yesterday morning. I had woke to a funny sensation in my upper stomach. I was hungry. Or at least my stomach was. The feed tube that's laying dormant in my stomach was being repeatedly pulled tight to my skin and then it would be released, it was as though my stomach was trying to eat the feed tube, grabbing at it and pulling it inside my body! It was the grossest thing ever, I was just stood in the middle of the bedroom thinking "what now?". I bolted downstairs and poured a big bowl of cereal and proceeded to chomp through it. My stomach turned its attention to this new input and stopped "chewing" on the tube. Okay, glad that's stopped, note to self- don't let your stomach get empty again.

The feed tube thing is becoming a real bone of contention at the moment. Of all the things that are being delt with in this its by far the most problematic, high maintanance, uncomfortable and generally weird element of the treatment. It was starting to get me down yesterday and I was wondering how I could get out of having it, while I'm aware of the important role it will play down the line, for now it's literally a thorn in my side.

Yesterday daytime was almost entirely consumed by phone calls either from or too freinds and family. Having been out of commission over the last week or so it was great to catch up, vent, but generally laugh about the situation. A coping mechanism perhaps, but one that works well.

Maintainance...

Looking back over the last week I think myself and Bethan have both agreed that I don't want to be placed back in that situation again while on this course of treatment. I think we have drawn the conclusion that due to the lack of facillites there i was getting sicker faster than i was getting better!

I had a really good chat with the community nurse who came over yesterday to clean lines and change dressings. She has made us aware of the level of support that is available to us at home. They can are pretty much able to visit on a daily basis, not that you would really need them to and are on the end of the telephone if you need information or just have a question, no matter how stupid it might seem. She also mentioned that IV hydration and other drugs are able to be administered at home on prescription from the doctor and that with cases where the patient would need it isolated in hospital 9 out of 10 times they are better off at home. This seems to make a lot more sense to me and offers us a viable alternative should I have further compplcations with the treatment.

It's great to be back, but I still don't quite feel right. Ive avoided laying around in bed and tried to stay active, even if that just means pottering around the house at this stage. The weather has been a bit crappy the last few days, but I'm really keen to get out for a walk in the fresh air today, even if it's just down to the shop and back. I noticed my legs while I was getting dressed this morning. The muscle that I have acquired on my thighs and calfs from years of peddling seems to be fading away. What was once hard sinewy power has begun to look frail and slightly depleted. I have had this happen before through injury and time spent away from the bike, but because it's never for that long it means that muscle memory has always helped me to quickly bounce back in a matter of a few rides. I get the feeling that 5 months off the bike and all the chemicals are going to put me right back to square one, or worse.

So, what to do? I guess the only thing I can do is try and maintain what I have. I can't ride a bike for fear of injury and I can't surf with all this stuff hanging out of my chest. I'm thinking, I live in a beautiful place, all I need to do is get out and walk. Ipod on and go, me, black flag and the cliff paths... It's the only way.

The Great Escape...

I woke this morning the sound of the tea trolley rattling down the corridor. My IV needed to be changed so I rang the buzzer for assistance. The nurse came and freed me of the IV line. "So, your off home today" she announced. This was the first I'd heard. "Yes, your blood test and everything have all come back negative, so I believe the doctors want to see you gone this morning", this was fantastic news, but it was about to get even better... "and you can use the shower across the hall if you need to". If I need to? I pounced out of bed and wobbled across the room with the dexterity and strength of a 15st new born foal. Its amazing what two weeks in bed will undo in your body. I snatched up my wash bag (noting the layer of dust on it) and crashed across the corridor into the shower room across the hallway. I'm not a particularly religiuos person, but when people talk about baptism and being "born again" this had to have been pretty close. I washed away the five days of sickness in a matter of seconds and stood there just soaking up the heat, with and hum that soon broke into a song, but soon realised that the bathroom door was all that separated me from the thirty or so bed riden folk on the other side, I knocked the signing on the head.

I returned to my "cell" cleansed and brimming with the prospect of escape. I started to pack, but stopped to eat the two slices of white toast and jam that had been left by my bed side while I was in the shower. Usually for me, toast is a high speed breakfast inhaled along with strong coffe while flashing a glance at the kitchen clock on the way out of the door. Today was different, I just sat there with time on my side enjoying every mouthful... superb.

After a brief discussion with the doctors we were handed paperwork and meds and sent on our way. As we approached Newquay I felt exhausted, but Bethan and myself had been chatting about the "house" all the way back. I wanted to go and see.

We have spent the last year renovating a house a couple of streets away from where we live on Pentire. It's been a long road, but one we have both enjoyed, even more so in the last few months as it has neared completion. The news of my Cancer has come at a time when we as a family are going through a lot of different transitions. The kids have just started big school, I'd just begun training as a teacher and Bethan was looking forward to picking up her career as well. With the new house almost complete it really felt like we were getting somewhere and that life was moving in the right direction. I still look at my current situation as a "speed bump", a period of time in my life where things are out of my control to a degree, but I still maintain that this is temporary, painful and uncomfortable, but temporary.

We pulled up outside the new place, i haven't seen it for almost a month. It looks amazing! "Are you sure you want to go in", " absolutely" I said. We jumped out of the car and went across the drive way checking out the freshly rendered exterior, it all looks so new! We went inside, flooring and carpets were all in, bathrooms complete, kitchen finished and decorating underway. Bethan and I went upstairs, and it dawned on me that the spare room with its own ensuite bathroom we had designed to accommodate our visiting family and freinds is soon to become my hospis, recovery room to house me during my terms of chemo recovery in the coming months. It still makes me feel pretty sad that we're moving into our new house under these circumstances, but it is what it is I suppose, and things could always be worse.

We drove back up the road buzzing about the new progress that has been made on the place. When we arrived home I got my feet up while Bethan went to collect Joel and Cerys. They came roaring in the house in the usual way, painty fingers and crusty sleeves fresh from a day of school.It felt like a month not a week since I last saw them both, and they both seemed to have doubled in size, with new manorisims, words and ways. We all settled down and watched KungFu Panda 2, myself and Cerys in the big chair dipping into our secret stash of Haribo... human again.

Oh yes, Egg and Cress!

Almost forgot to elaborate on the title of the last post. At 5.23 the afternoon I ate and egg and cress sandwich and then just burst in to tears, calmed my self down and had a strawberry yoghurt. That's the first full meal I've eaten in four days... Not sure what the tears were about. I called Bethan and we had a laugh about it, she reckons it was a big phycological hurdle, I thought it tasted alright.

Egg and Cress...

Day 4. I think annoyed, despondent and generally feeling like I'd had enough were the key vibes this morning. I'd been up almost all night battling the usual issues, the ward was noisy even though I'm in my own little cell. It just seemed that the moment I started to drift off there would be something, the moaning, the puking, the buzzers, alarms and the rasp of the Velcro arm band on the blood pressure monitor, the porters walking in at 4 am not even talking but shouting to each other down the ward like its a Saturday night out. There's treatment here, but it seems sometimes like there's very little care.

I've started making notes of what happens to me through the day, the meds I've been given, when my temperature and vitals were last taken and things like that as I'm sick of being asked when and what I've been given by people who I think it's kind of their job to know, because I'm way to ill, scared, confused to remember of the top of my head.

Okay, rant over for now.

They have discovered that I'm now "non- contagious", this still has had no effect in my isolation as they still believe that the condition I'm suffering with could be "viral" so don't want to take any chances. My feed tube flared up today and became really painful and bit messy and it was thought for a time that it may be infected, but the doc seemed to think not. It's been very difficult to maintain any kind of basic hygiene when I'm traped in a room with a sink I can barely reach and no toilet. I was unhooked from the IV pump for about an hour today while Bethan was here so she helped me have a stip wash using the sink in the corner of my room. You'd think having my own room would offer some level of privacy, not so, the tea lady still managed to barge in as stood there naked cradling my undercarriage in sky blue flannel. "Did you want tea love?", "er, no thanks".

It was a simple thing but it helped no end, and it was nice to just sit and chat together unattached from any kind of machinery with a change of clothes and clean teeth... amazing how rubbish you feel when the basics are taken away.

It's just gone 8.30 on Sunday night and the doc just called by to say that my blood counts are back up to where a they should be as a normal person, that's not a chemo knackered person but average Jo on the street- that it great news as it means that I'm in with a fighting chance in the infection stakes and I can start to repair and get better instead of just staying the same. I've also been started on some new antibiotic this afternoon that is to take out and "viral" bugs in my non aerobic system (gut etc) this should impact on the dihorea issue, the bad news is the camera crew are waiting if there are no improvements in the next 12 hrs they want to take a look. I have so got everything crossed that we dont have to go down that road!

Lock down...

Day 3 of isolation here on medical admissions at Trelisk hospital. I've been in this 8'x10' bleeched out, magnolia room for what seems like forever. Its a funny deal, aside from not actually being allowed to leave the room, I'm hooked up to an IV drip which limits movement even further. I've never even set foot inside a prison, but this has to be close, just no table tennis!

I was admitted here with dehydration following the sickness and dihorrea which has had me in its grip since I came off the chemo. While being here these issues have not subsided, this has made using the 'comode chair' I've been issued with, a chanllenge. Im not going to harp on, but using this thing in my current state has the same effect as pointing a jet wash at a breakfast bowl... No fun!

Ive not really eaten anything in the last four days aside from a hospital milkshake thingy that I was issued with this morning, this has left me pretty weak, which I didn't think was that big a deal until I had to ring the nurse to get the lid off.

I was running a pretty high temperature last night, which seems to have been brought back under control with antibiotics. The concern with all this is the way in which the chemo does a good job at suppressing your immune system. This makes you susceptible to minor infection that becomes really difficult to treat.

... So when's it going to end? Well, when my white cell count is back up and suggests I have a good enough immune system, when the dihorrea stops and I start eating normally again. We could be here a while.

Return ticket...

Well, no fun this week, battling sickness, fatigue and running to to toilet every 20 mins for the last five days. Due to not being able to hold fluids down I've wound up back in hospital. I've got a bit of a rattle in my chest which they are checking out and running all kinds of blood tests to try and rule out the possibility that some kind of infection is trying to take hold.

At this point it could mean 24 hrs or many more days locked down in here. Worth it though if there is an issue that needs attention. When I know more, you'll know more...