Hospital & Hair

I spoke too soon! Last Thursday really was my best day. It’s been a bit of uphill struggle since then. The coughing fit I had whilst at the doctors on Friday morning was more than a one off (I was getting a prescription for mouth wash – no one tells you that one of the most vile side effects from chemo other than the nausea/ hot flushes/ hair loss/ bad taste in your mouth is incredibly sore gums and mouth ulcers. Please someone invent an alternative to chemo – it is barbaric!) Anyway where was I? The cough – I thought it was just one of those embarrassing tickles that you get from time to time, but no as the day developed – so did the cough! What didn’t occur to me as I sat in another garden centre, this time with my lovely friend Helen (once my driving instructor!) was that rather than a side effect (as in my confusion I thought it was) it was actually on the list of things to phone hospital immediately. This I didn’t realise until I got home and checked the list of side effects, discovered it wasn’t listed and then it dawned on me ( I knew I’d read it somewhere) that it was on my emergency card that I have to carry in my wallet. Checked my temperature: 37.5 ~ not good in chemoland! So, reluctantly made the call (I say reluctantly because I’d had a fab day and had purchased a tent! Just a small 3 man tent, enough for me and Brad (dog) & possibly A.N.Other and I wanted to see if I could put it up by myself (it’s that independent streak of mine)… dreaming of warm sunny days when I might be well enough to through it in the back of the car and spend a weekend at one with nature!
Anyway, I digress – the week that followed has been an interesting one. Had to go to the ward Friday night for bloods, but they said that although my blood count was low I didn’t have to stay if I didn’t want to. Needless to say I came home (it was the same ward that I visited mum on many occasions). I then spent the next 4 days trying to fight off the virus. Another trip to hospital Tuesday meant I was finally put on antibiotics and it was touch and go if I was allowed home as my blood count was very low at 0.4 (1 is deemed safe; 3 ok for chemo; 8 is normal) and my temp was 38. The deal was I could go home but would have to be admitted if my temp went above 38…
… So, 3 hours later when it reached 38.5 there was only ever going to be one outcome – admitted to the ward that whilst is one of the most amazing hospital wards I have ever had the misfortune to experience it is also a place that holds a lot of painfully sad memories for me and for my family. To get my head around the fact that 6 years on I am the patient is harder than I imagined and very difficult to put into words.
That was Tuesday night. Wednesday they put me on intravenous antibiotics as the worry is that when the immune system is basically wiped out the body can’t fight infection and although antibiotics themselves can’t do much to fight the cough virus they keep other nasties at bay – the main concern being it turns into a chest infection and/or pneumonia. They did their job and by Thursday my blood count was on the way up 1.1 and I was allowed home – just the 18 tablets a day to keep me going!!!
It is a relief to be home, the nurses are completely lovely and some even recognised me from when mum was there, but being a cancer ward it is a tough place to be mentally. On the one hand it made me realise how lucky I was ~ hopefully in remission, no tumours and no signs of secondaries – just the effects of chemo; on the other hand it reminded me what a cruel disease this is and it’s a lottery as to whether or not it returns – it does not discriminate. The lovely, positive and smiley lady opposite tells me that she has only a couple of months to live and the poor, poor lady in the bed next to me who was planning on going home, arranging for a bed to be put in the lounge and for the care of nurses to support her in her own surroundings, very suddenly (had been sat up chatting all day) succumbed to a chest infection (which is what happened to mum). I’d forgotten about the oxygen tanks and how hard breathing becomes once the lungs are infected, the panic experienced when it feels like you can’t draw a breath – the need for injections to calm you and injections to ease the pain – cancer truly is a cruel, vile disease. As I lay there overhearing the urgent calls to family members to get there asap I just cried – I cried for the lady who was in pain and who didn’t have long left; I cried for her family and their pain of seeing her like that – and for the pain of loss that was to come; I cried for mum and what she had to go through and I suppose I cried for myself. I am scared. Please God do not let that be me. This was my lowest point. In the end I had to take myself to the lounge just to get away from the awful bubbling noise that the chest makes with every breath taken and I suppose I knew that I needed to get myself together. I felt really selfish given all that they were going through, it’s just that for me it was very close to home. The battle for me now is as much a mental battle as a physical one.
When you are first diagnosed you think a lot about dieing and then somehow that gradually subsides as you get through the op and then tackle the chemo. But I suppose the truth is that there is always that element of doubt tucked away in a corner of your mind and it is a question that no one can answer (not even the oncologist). Getting your head around that is half the battle. If ever I needed a reality check with regards to fighting this disease I just got one. Next time when chemo does its worst I will remember all of the above and I will not allow myself to even consider that chemo is too awful to continue with. All I can say is that it had better be doing its job! The fact that my hair is now falling out suggests that it is at least working -this is as reassuring as it is distressing. I will keep you updated, as Ruth Picardie once said – watch this wig! (Or in my case as I do not want to wear a wig – watch this buff! ~ A slightly trendy alternative to a bandana!). XXX