Night Nurse on Elm Street - Part 10

Daytime television is rubbish.

You would think that given no choice, and having to lie in bed not able to go anywhere or do anything then having a television in my hospital room would be fantastic, it really isn't. There are only so many property, antique and cooking programmes you can watch before your brain is freeze dried. Not to mention the gladiatorial monstrosity that is the Jeremy Kyle Show, how on earth is that man still on television? He's like an insincere Spitting Image puppet with a microphone and a license to patronise.


It's the second day in hospital and I'm feeling so much better, I know I'm not going home yet although I keep testing them, apparently they are sure, I'm in for a third night, and then it will depend on whether my blood tests show a huge improvement in my white blood cell count. I can deal with this because I am definitely feeling brighter, the nurses are making me laugh and my hair is fixed into place until I can do something about it at home. Good job too that I have so many lovely visitors coming in to cheer me up and keep me smiling. One friend who felt as if she may have a cold coming but was unwilling to let me down came to see me anyway to wave through the window and leave me some magazines, fabulous and really appreciated. I'm allowed magazines, I'm not allowed grapes, blueberries or anything which can't be peeled (risk of infection...I'm not even joking) now I know The Boyfriend is good but even he draws the line at peeling grapes for me.

Another day and another stomach injection, but that wasn't phasing me today, a splendid friend was coming, she had given up her day off to spend it with me in my hospital bubble and I couldn't wait to see her. She's one of those friends who totally throws herself into every new situation with absolute gusto so when she arrived in the ward to see me she took it all very seriously, acting like an extra from Casualty she adopted an immediate sense of self importance by walking around wearing a plastic apron and latex gloves, smoothing down the apron and pulling on the tips of the gloves. It was the laugh I desperately needed and I responded by scratching the back of my head and pulling out a chunk of hair...much to her horror.

Aaaahhhh....good times.

I continued with this general feeling of good humour when The Boyfriend came in to visit. I taught him the no-teeth-name-game, if you have never played it I thoroughly recommend it, seriously it is brilliantly funny. We fell about laughing, I didn't literally fall because I was attached to a drip, but I never let a small thing like a medical reality get in the way of having a good time and we were in hysterics when my favourite junior doctor came in, we told him about the game but his professionalism stopped him joining in although I have a feeling he really wanted to have a go.

We discussed my symptoms and although my throat was better I had been experiencing severe shooting pains up the back of my head, and no, not because I was pulling my hair out, I only did that once. The doctor thought that the pains were down to the infection I had, it was probably in my ear, he promised that the liquid paracetamol would soon be arriving on the drugs trolley and that would help. So a good day all round, the doctor left, The Boyfriend left, I ate my dinner and lay down waiting for my meds so I could sleep.

The severity of the shooting pain was definitely worsening, I tried to settle but couldn't, whichever way I lay it hurt, badly. I called the nurse to see when the meds were arriving. She came in, switched off the call button and reassured me that they were on their way.

"It really hurts" I said, pressing down that side my head trying to subdue the sharp throb I could feel.

"I know and I can't do anything but I promise they are doing the rounds" she said, and left me to my headache.

Three hours later and I was still waiting, I had used the call button a couple more times but the poor nurse could do nothing, they had to wait for those qualified to give medication before anything could be done. It was now so bad that I could not do anything except walk around the room holding onto the side of my head trying to squash it and make it stop. It didn't work. By now I was in tears, it was almost six hours since the junior doctor had told me the meds were on their way, I was in agony.
Someone must have heard me crying, I opened up my blind and looked out onto the reception area, I must have looked a state, distressed teary face, sticky-up hair, my hand clamped to the side of my face.  I was, to put it mildly, going slightly mad with the pain.

Within ten minutes a different male nurse came in to the room. No apology no explanation just a very abrupt 'Can you sit on the bed please?' I went to lie on the bed and I asked if he was going to give me liquid paracetamol, he didn't reply. I asked again because I was desperate for the painkiller, I knew the other medicine would be the antibiotics to fight the infection but it was the liquid paracetamol which would help the pain and I needed it, actually I had needed it six hours ago.

Obviously aggrieved at being questioned, he looked at me and said "I tell you what, do you want to check the sheet and see what medicine you should be having, then you can tell me what I need to give you" He then shoved the form towards my face.

"I just need the liquid paracetamol" I replied, but I was pretty shocked.

He grabbed my hand so he could put the drip into the cannula, he adjusted the reading light above my bed to see better. Thinking it would be better if he put the overhead light on I asked if he wanted the light on, the truth was my poor arm had really been through it and I was afraid the cannula would come out or even worse the painkillers wouldn't go in. He didn't like that.

"I CAN SEE what I'm doing" he almost yelled at me. "I can see." he said and carried on.

I was now too scared to say much else, he adjusted the drip and I then remembered the other drug.

"How long will this take?" I asked.

"About ten minutes" He replied, then, as if he read my mind about the second drip he continued almost smirking, "To change that one and put the antibiotics in you will just have to call someone else." He walked out and he didn't wash his hands then either. Rude, scary and unhygenic...

I fell asleep immediately through sheer exhaustion, but an hour later the nurse who had been to see me previously came in and the door made a squeaking noise as she walked in and woke me up, I sat bolt upright in bed and was shaking, I was really terrified he was back in the room again. She calmed me down and checked the drip, it had fallen out, no surprise there then. She put it back in and I made her promise me that he would not be coming back, she apologised over and over again that the meds had taken so long, she had thought they had been given to me hours before.

I don't want to bang on about this, one bad experience does not make the NHS, this had definitely been an exception, I was in a pretty bad way the next day, and it was only by having a chat to one of the lovely nurses who had been there on my first night that I discovered he was in fact an agency nurse, and not a regular member of staff. She was appalled and I was told to make an official complaint. To close this particular episode I can say that yes, I have made a complaint, but I also made it perfectly clear in my letter and my thank you card just how wonderful everyone else was in that place, because this is the really sad thing, they all do a really tough job, it is only when you are treated badly by one that you realise what an astounding bunch of people the rest of them are.

I left the hospital that day, I had been given the almost all clear, I was much better and they could see I was on pins because I was so desperate to leave. Sometimes there really is no place like home.

Once back home I had the longest shower of my life and used shampoo for one last time. See? Every cloud and all that, putting away the shampoo and expensive matching conditioner will save me a fortune, not to mention the savings I am making on razors.

Having no hair is weird, I have a lot more sympathy for bald men now. If you bang your head on something it hurts, a lot, more than you would think. If it's cold outside it is really cold, and there is no getting away from the fact that you look like a grown up baby unless you add lashings of mascara, and I don't know many blokes who could do that. People's reactions in general have been interesting, most have been utterly lovely, I, apparently have a good head, 'have' I said...so that helps. I was fitted out for a wig and yes it does look okay, but I don't feel like me in it and it itches my forehead like nothing else on earth so I only wear it if I feel I have to, and always under a beanie with the fringe part popping out.
We went out for lunch one Sunday to a lovely restaurant, I was either feeling brave or stupid, or in fact just warm, so I took my beanies off while we there. I had given the waitress a heads up that I would be doing that and she was lovely.  However, I wasn't prepared for one woman who was unable to get a proper look at me as she was facing away from our table, and having been told by her son / toyboy that there was a baldy in the vicinity she spent the entire meal craning her neck or turning in her chair to look at something  behind me so she could check me out. That was uncomfortable and a bit sad for someone who really should have known better.

My advice to anyone who sees a female baldy (and it is obvious that we haven't chosen to look like this) is to give them a big smile, tell them they are being brave, seriously, even a sympathetic look works because it takes so much courage to just go out there trying to be normal, no wonder you don't see us around much.

One lovely friend who has a huge heart but not always the best way with words saw me a few days after my second chemotherapy session. I wasn't feeling brilliant, so I didn't have my usual slap on, I warned her I didn't have any hair and asked if it was okay if I took my beanie off and promptly whipped it off. She stared at me for a few seconds and then said:

"OH, have you seen Breaking Bad?"

Hair Today, Gone Tomorrow... Part 9

Feeling well and actually being well are two very different things, something I was to find out very quickly. It's a very steep learning curve this whole business, sometimes you pick it up quickly, other times it takes quite a while to sink in, it's terribly exhausting, a bit like a new job only without the benefits.

Three days after the first treatment and I was literally sick of lying around feeling weak and looking pathetic. I was up for going into town, looking at shops seeing people, anything for a normal life...The Boyfriend agreed only if I wrapped up warmer than a polar bear and we didn't stay too long. It didn't take too long to realise that I was not as alright as I thought I felt, a decided lack of interest in any of the sales items should have been a major warning sign but I persevered as I loved being out.
Even my appetite came back, much to The Boyfriend's delight I wolfed down a sausage in a baguette, the first thing I had eaten in days, I'm not sure which was better, the food or his delighted face as I finally ate something, just as good as retail therapy. I was on the road to recovery I was sure of it, I was going to be fine.

The following day taking a trip to see my Dad and finish off some Christmas shopping all seemed like such a good idea, driving for two hours? No problem...shopping, wrapping presents, working, eating, everything was starting to feel a bit more normal and I was delighted, a bit wobbly, but delighted nonetheless, I had no more chemo until the new year and just a routine pic line to be fitted after Christmas and I was feeling more than good, healthy even.

I woke up one morning with a bit of a sore throat but I thought nothing of it, it was that time of the year...everyone was coming down with something or other. But later that evening when my temperature started to climb I wondered if I should call the number on my special Heat Card.

I don't have a donor card, I'm not sure anyone would want my organs, the state they are in at the moment, but I do have a Heat Card, I have to carry this around with me, it was drilled into me at the first oncology appointment and also at the first chemotherapy session that this needed to be carried everywhere. I was given so much information that I am surprised anything stuck but this did. It has seriously fierce designs on the card, fire and brimstone and scary stop signs.  It's all to do with spotting the signs of Neutropenic Shock, this is what happens when your body cannot cope with a run of the mill infection, it sort of stops working properly due to immune levels post chemo - told you it was a learning curve.

The simplified non technical explanation goes something like this: while I am feeling sicky and rubbish just after each treatment my immune system takes a spectacular nose dive making me totally susceptible to catching anything from anywhere which isn't clinically clean. For you that would be fine, you have legions of healthy white cells battling away in your body protecting you from all manner of bacterial evil. My legions of good cells have been zapped away by the chemo on it's own mission to rid my body of, well pretty much anything...
Immediately after treatment I can't really move about much so no harm done. Then I gradually start to feel better and I behave in a normalish fashion going about my daily beeswax like leaving the house. This is not good, in fact this is very very bad. Going to the supermarket for example is a death trap, I'm not kidding, think of pushing a trolley and how many people have pushed that thing before you start your shopping? Have they all been spotlessly clean? I doubt it...But remember that I was told that I should feel better after a few days and that it was more than possible to carry on my usual routine, so I grabbed life and carried on regardless.

With a rising temperature I decided not to risk anything and I called the number and said I had a bit of a sore throat, and a temperature. They ran through some questions and advised me to take my temperature again, it was on the up so the nurse told me that she would call my local A&E and tell them to expect me. She also told me to pack a bag, which prompted my total lack of taking this seriously, I almost laughed out loud 'an overnight bag' surely not? I wasn't that sick. She persuaded me to pack one in the event they kept me in overnight, she knew what she was talking about.

Five hours later I was lying in a bed linked up to a drip and with an oxygen mask firmly in place, we were none the wiser as to what was happening or going to happen. The Boyfriend was struggling to stay awake but struggling even more with the idea of going home without me. I was being filled with fluids as I was badly dehydrated so very soon I was desperate for the loo, but no one had passed by for ages and as I wasn't allowed to go to the main toilet in the corridor (too many germs) I had to wait instead to ask a nurse, but only a nurse who was dealing with my case for help. That help involved a commode, yep I had to ask for a portaloo to be brought to the room. If that wasn't embarrassing enough it took nearly an hour before we were able to flag down anyone who could help, by which time I would have happily risked all manner of infection in the main toilet if only I had known how to unhook myself from all the wires.

A&E in crisis before Christmas? Yep, they weren't making that up.

The male nurse assigned to me, with a bare minimum of English was unable to tell us what was going on and could only repeat that the doctor who could help us would be along shortly, yes,the results of my blood tests were back but he could not tell us what they were, only the doctor could tell us and he would be along soon but they were having to deal with an emergency.
By 1.50am having heard the same reason yet again and having been very patient (no pun intended) I had had enough and I asked yet again how long we could be expected to wait to find out what on earth was happening. I knew they were busy but there are only so many hours you can wait with no new information whatsoever, and listening to someone tell you in very broken English for the umpteenth time that 'someone was coming' before disappearing for another forty five minutes you start to ever so slightly lose it. I was annoyed, tired and fed up, not to mention the fact I didn't feel too great and so, to my eternal shame I spoke loudly and slowly and made it clear that I wouldn't accept what he was telling me because I simply did not understand.  It was enough to alert the attention of a passing staff nurse, she understood the situation immediately and came in to see me.

"I have seen your results, your white blood cell count is dangerously low, and you have very low blood pressure" She continued, "I am heading home now but I can tell you that your chest x ray was clear so you do not have a chest infection but they need to find out what is causing the infection so you will be admitted to the Acute Medical Unit and you will be in for at least one night, probably two."

She then smiled kindly and said someone would be along shortly to take me to the unit where a bed was waiting for me and yes The Boyfriend should definitely go home.

Hallelujah!! Okay, I know it was not good news but information is key, and having been in the dark for hours it seems it does not always pay to be super polite, occasionally very occasionally it does pay to question the crib sheet lines you are being repeatedly fed. The Boyfriend didn't like leaving me but at that time in the early hours I think he was pretty relieved to be heading home and so was I for his sake. Within minutes I was being wheeled down corridors towards the unit where they had a quiet dark room and a bed waiting for me, I was fast asleep within minutes.

I was in an isolated room, no one was allowed in, without wearing gloves and an apron, I wasn't allowed out. I had a window to the ward so I could see people pass by and could see them looking in at me, I was hooked up to a drip to keep me pain free and hydrated and still I didn't really know what had happened except that I was pretty sick, my temperature was being kept at bay but I had all sorts wrong and a very sore throat. However my brain was telling me that there was also something else not right but I couldn't quite figure out what it was...yet.

It's early rise in hospital, the first round of medication is given between 5 and 6 am so no chance of a lie in, then you have breakfast and the doctors come round to give their prognosis. I still wasn't well (turns out that it takes a bit longer than a few hours to recover) my white blood cell count had hit rock bottom, and here comes the fun bit, I was going to need a stomach injection every day to build my white blood cells back up, that's what the man said, a stomach injection every day. When they tell me things like that I always say something along the lines of 'Are you sure?' or 'Really, do I really need that?' just in case they have somehow made a mistake. They never have so far but it doesn't stop me checking.
I was also told I would also need daily blood tests to monitor the count before they let me out, at this stage I wasn't seeing stars just needles, loads of needles. The infection was thrush in my throat, who knew? I swear I have not licked a supermarket trolley. Apparently there was no fight left in my poor body after the chemotherapy so I had picked up a bacteria from somewhere and it had knocked me for six. And I wasn't going anywhere for at least another 24 hours they said.

"Really?" I questioned them, "Maybe I will feel better later" I said hoping they would double check their notes and realise they should have released me first thing.

They shook their heads and backed out of the room leaving me alone.

So after all that good news and a piece of wholemeal toast I lay back in the bed thinking I could really do with a shower, and that's when I noticed the thing that my brain had picked up on before. Hair, my hair, loads of it, on the bed, on the pillows, on the floor, everywhere, and not just a few hairs which come out naturally, and not actual clumps, but way more than should be falling out, and a whole lot more than I wanted to lose from an already cropped haircut.

It's not as if I didn't know it was coming, I just didn't expect it to happen when I was on my own in hospital and feeling so unwell. It was a horrible moment, I can't dress it up or make it funny because it wasn't, it was seriously awful. I went into the bathroom and looked in the mirror, my hair was sticking up in tufts at the back, I gingerly smoothed it down and then tugged at a bit, it came out in my hand and I just stared at it in shock. If I could have stuck it back on I would have done.

I climbed back into bed, but before I did I brushed down the sheets shaking and staring in disbelief as the floor started to resemble a hair salon after a haircut. I sat in bed in shock and disbelief, not here, not now, my brain was screaming I simply wasn't prepared for this to happen so quickly.

Two nurses came into my room to change the bed, I started to apologise for the hairy mess on the floor and started crying as I explained:

"So sorry" I snivelled, "My hair started falling out, I just wasn't expecting that just yet, not here in hospital, I don't know why I'm surprised, it's not like I didn't know it was going to happen" I said through tears.

The lovely nurses were so upset seeing my distress which I was doing a really crap job of hiding. Sympathetic and caring they reassured me, went to fetch stuff so I could have a shower and said if I wanted to talk about it they were there for me. Kindness is a buggar when you are already upset, I just shook my head (gently though, so nothing else fell out) thanked them profusely for being so lovely, apologised over and over for the hirsute area around my bed and with tears falling down my face I went in to have the most careful shower I have ever taken in my life.

I can't explain why it hit me so hard, being ill, being in hospital, it happening so soon after the first treatment, all of those are good reasons, but actually it was the reality of it. I had a temperature during the night, my hair was stuck up at different angles when I woke and it felt different, it felt like it wasn't part of me anymore, it had stopped growing, it was on my head but it wasn't my hair anymore. I couldn't pat it down, ruffle it, or smooth it because I was scared it would come out. That made it real, really not mine. Chemo was proving to be the Heineken of chemicals, reaching the parts others could not.

It wasn't the worst of times but it was close.

My right arm was also having it's own bad hair day and was giving everyone hassle, unsurprising really, since my operation back in October I cannot use my left arm as a pin cushion so all bloods taken and drugs administered go into the right. Add into the mix the fact that the chemotherapy drugs dry you up and you can imagine the nightmare the nurses, doctors, everyone had trying to find a vein which would play ball. So when the junior doctor came in to tell me that my blood test had gone missing I wasn't over the moon, poor man / child (far too young to be a doctor as I told him) was devastated and could not apologise enough...He sat down next to me and tried to take some blood, it took three attempts  I was looking away from him while he was digging around and I was crying, it had been that sort of day, then I felt him stop and I turned and realised he had stopped because he saw I was upset.

"Sorry" I said again for the fiftieth time that day, "It's not been the best day, my hair is falling out and my veins don't work, I'm normally a lot happier than this.."

He looked so totally downcast sitting there with his syringe and so close to tears himself that I burst out laughing.

"It's fine, honestly" I said, "I'm sure we will find one that works soon".

We both then recovered enough to start laughing and talked about how rubbish the whole day had been. I told him he looked far too young to be a doctor, he admitted he was young but I said it was fine, I had noticed that he had quite a big head and that usually meant he was probably extraordinarily brainy so I trusted him. He even found a working vein in my stupid arm.

"I'm taking these directly to the laboratory" he said, clutching the test tubes, "I shall hand them over personally" he assured me, "no more blood tests for you today".

The people in this place are amazing, they care and it shows and that is incredibly important because being in hospital is no laughing matter. The nurses the junior doctor, the cleaning staff, all of them made a rubbish time more than bearable.

Which is why when someone isn't caring, but is in fact the opposite, it really stands out as the exception rather than the rule and is incredibly distressing as I was to find out...