Part 5

I feel like I've come through the hardest part of the treatment for now and moved on to a plateau which will hopefully remain fairly constant for the next three months. I'm getting used to the daily injections and am determined to learn to do it myself very soon. It will mean not having to wait around for the district nurses every day or ask friends to wait in the kitchen while I'm jabbed in alternate thighs. Don't get me wrong, I have my down days. It seems to be about once a week. Partly due to the frustration of being so limited physically I can hardly make it to the end of the road. I used to skate or dance for hours on end. How can I be this incapacitated?! I spend Thursdays at my friends' beach hut having an art afternoon and we lunch at the cafe next door. I love it, even though the weather is always grey and usually rainy when we go, it's the sight of the waves, sometimes calm and serene, sometimes tempestuous and angry. Moods all of its own. And it's okay to be like that I realise. Okay to always not be okay. As long as I keep shining the light of positivity and banish fear I can deal with this.

So it's been ten days now. I'm still not quite used to having no hair. I hate it really, even though what little I do have feels nice to touch. Soft and bristly underneath my fingertips and tingly on my scalp. I wear my wig most of the time except if I'm in my room with the door locked but it gets uncomfortable round my ears after a while and I'm starting to wear my scarf a bit more when no-one is about. Emily shaved it for me last Tuesday evening. I stood there with the scissors in my hand and tried five times to bring the blades together to cut off a lock of my hair. My thumb and forefinger would just not come together. Emily had to take over. The actual act wasn't so bad. A few silent tears rolled down my cheek when the scissors took the first couple of hacks out of my long blue hair, but the shaver felt nice against my head. Kind of like a massage, vibrating against my scalp. So I felt quite calm. I didn't watch though. Better that way. After Emily left, Asa turned up within about half an hour so I had to deal with wearing my wig straight away. He gave me a big hug and thought nothing of it so it was fine, even if I felt a little self-conscious.

My hair had thinned over a few days, not really noticeably but if I brushed my hand over the top of my head I ended up with a bit of hair coming away on my hand. I kept it in a ponytail and didn't brush the top of it from then on. A couple of days later I was sitting in the bath and when I washed myself most of my pubic hair came out and I realised I didn't need to shave my armpits anymore either. The one thing I did have to do was shave my legs though! I'm trying not to touch my eyebrows or eyelashes too much so that hopefully they will stay as long as possible. Mascara is a no no and the odd eyelash has started to come out when I put eyeliner on.

The day following the head shaving I felt pretty low, cancelled a lunch visit. I just couldn't face anyone. I was having a bad wig day! I went to my hairdressers in the evening and got my wig cut which made me feel a bit more confident, so by Thursday for my next chemo I was feeling generally okay about it. I've had quite a few comments from people saying it looks really good. Mum said “Have you not lost your hair yet?” The kids Dad asked if I'd had extensions put in at the hairdressers and then incredulously “Nooooo! Is that your wig?!” when I said I hadn't. Even my hairdresser asked where my wig was when I turned up! I'm still a bit self-conscious. To me it's obvious it's a wig. I don't think I will let anyone apart from Emily see me without a wig on. Even a scarf I can't quite manage yet. I'm sure that will change as I start to get fed up of the uncomfortableness of it. Half a day is alright but it makes the skin by my ears sore after too long. I always wear it around the kids. It is enough for them to deal with without seeing their Mum like that. The boys have been ill with colds and tonsillitis so have been staying with their Dad. My poor parents have had them during the day all week. I haven't really seen them. There is an ache in my heart and a sadness. They are only over the road but the distance seems immense.

They lowered my second dose of chemo drugs. My body had not coped so well with the toxicity of the first. It took a couple of hours of sitting around and only about twenty minutes at most of actually being syringed full of drugs but it was painless and sensation-less and over with for another three weeks. I didn't like being back at the hospital again after the last stint I had there. I felt a little on edge and was glad to get back home.

I had a lovely weekend out in the sunshine in my garden hammock and felt really well, buoyed up by happiness. Very little nausea at all and quite good energy levels. But by Tuesday I felt rough, like I had a cold coming on. I'm hoping it won't lead to hospitalisation again but I've packed my bags just in case and take my temperature every few hours. I need to try and boost my immune system before it depletes to rock bottom. I felt low in spirits that day too. After playing the piano for about an hour I went back to bed and spent most of the day there. Completely unmotivated to do anything.

Wednesday was a busy day. I had a heart scan at 8am at a GP surgery in Lancing. It was a detailed ultrasound of my heart, very much like when you have a baby. You can hear your own heartbeat too. The cardiac specialist said my heart was very healthy and he could tell I was very active. I have to have another one in six months. The chemo drugs can sometimes temporarily affect your heart but mine is fit and strong. Good news number one. After the nurses visit it was back to the hospital for an appointment with the oncology consultant. They had weighed me the previous week. The nurse said I didn't need to take my coat off as I'd just struggled to put it on. My arm is still slightly sore but I can move it pretty much normally now. It's just awkward with the plastic bit on the end of the tube to put long sleeves on. So I had apparently put on two kilos. I think that's about five pounds. In ten days! They weighed me again without my coat on this time. I think I need to have a sort out of my pockets - my coat weighs two kilos!

I went into the consultant and he had a listen to my chest as I have started to cough quite a bit and my throat is sore. He said it sounded fine and to keep an eye on my temperature but I'm confident I won't end up in an isolation ward this time. He said my bone and CT scans were clear so there was no cancer anywhere else and then he measured my tumour and announced that it had halved in size! I was completely amazed. It doesn't feel like it to me. I wasn't sure it had changed in size at all but he was very smiley and pleased with progress. Wow I walked out of there on air. I even did a little run! Good news number two!

Just under two weeks and I will be half way through my chemo sessions :)

Total so far £2635

Please donate if you haven't already. I really admire Emily for doing this and it makes me really happy as we raise more and more to support people in my situation. All the links are top left of this blog.

Part 4

I was starting to feel better and managed a 10 minute walk on Thursday (start of week 2) and 20 minutes on Friday. I was worn out later on though and sent the kids off to their Dad's for dinner whilst I had a nap on the sofa. I woke up with a fever of 38 degrees and shivering. I knew I had to phone the hospital and go in. I assumed they would just give me some antibiotic tablets and I'd be home a few hours later.

Unfortunately I had severe neuropenia which is when the neutrophils (a type of white blood cell) go down below 500 (normally they should be around 6700. Mine were 100!) Anything below 1500 is not good. They put me on intravenous antibiotics immediately, attaching it to my PICC line, and told me I would have to stay in overnight. This turned into 4 days in isolation in a 10x8ft hospital room. I was not allowed to step outside the door. Staff contact was minimal - blood pressure and temperature obs periodically, bloods taken once or twice a day, a saline drip overnight and 3 lots of antibiotic drips a day.

I had no bath or shower, just a sink in the corner, no tv, there was very little food they could offer me if any at all sometimes due to me being a vegetarian with a lactose intolerance and so I had to have food brought in to me from my brilliant friends. Visitors had to wear aprons, disinfect their hands and be illness free. Visiting times were limited to 3 and a half hours in total a day. I was woken at 6am every morning for my drip usually after only having 3 to 5 hours sleep. It drove me slightly crazy after a while looking at the same 4 walls!

After 24 hours my blood count went up from 0.1 to 0.3 and at the end of day 3 it was 4.3 ie 4300. I had my hopes up for going home the next day so my bags were packed by 8.45am! A little premature perhaps. They kept me waiting around all day until 4pm when a nurse said I would have to stay in. I was not in a good state at that time. My mind was set on getting out of there. They let me out of my room and I wandered aimlessly around the 2nd floor until I came to the chapel where my eyes lit up upon seeing a grand piano in the corner! I played for an hour. No one disturbed me so I guess it was ok to do that. It probably saved my sanity!

At 5pm a doctor came and spoke to me. My friend came and rescued me and persuaded them to let me go rather than me having to discharge myself. Without him I would probably have been in there another 2 days. They eventually located the right antibiotic tablets and that night I went back to his and had a break from everything for 24 hours. We danced and played music. He sang and I played keyboard. He took very good care of me and then took me to Emily's. Another episode of Fight Girls down and I went home.

I woke up feeling quite energised. Pretty much like normal, although I know to take it easy now as tiredness creeps up on you fast. I stuck some tunes on and danced round the lounge for a bit and then rested until the nurses came. They flushed my line through with heparin to stop blood clots and changed the dressing. I happened to see the line pull out of my arm by a couple of centimetres and as I bent my arm it went back in again a bit. It freaked me out and I had to lie down as I felt light headed! I'm not good with things like that although I have got to the point where I can watch my blood going into a syringe so I have made some progress. I can move my arm a bit better again now, still have to go easy putting it into coat sleeves etc, but after so much use over the last few days, the site of the line entry is quite sore and bruised now. I have a week for it to settle down until the next dressing change, and then it will be week 3 and round 2 of chemo.