Tag Archives: transplants

Day+4

Please not this blog was written yesterday. Today is Day+5, but really, who is counting? 

I have to be blunt. This sitting around and waiting to get sick, is nonsense. It is a nonsense that is really is getting on my tits. That’s right, on my tits. I am aware that that statement is somewhat crude, but I do not want to use my very limited energy coming up with a more palatable way to express my frustration. Waiting to be deemed ill enough to be admitted to hospital is beyond tiresome. Knowing what that illness feels and looks like, and waiting for it to happen, is not something I would wish on my top ten list of worst enemies. It has to get worse before I can feel better. I cannot compartmentalise this yet. I cannot cross the bridge yet.

Today is Day + 4, the day I was admitted to hospital during the last transplant. I did not envisage outdoing my previous milestone. I planned, and I prepared, and I convinced myself that the treatment would take me down much quicker than it did last time… I am quickly trying to readjust my thinking. It’s back to the drawing board. It’s difficult to do that when every minute of every hour of every day of this last five days, I have waited with pure dread for the unforgivable mucotitus. The chickens have not hatched.

At this point during the last transplant, I felt worse than I currently feel. My bowel had already started to fill a reservoir, my stomach was cramping, I had not eaten for 24 hours and I had a fever. Today, I feel quite nauseous, but the three anti sickness pills taken three times a day, seem to be doing their job and I managed to nearly finish my lunch earlier. An outsider would be forgiven for thinking it was a piece of cake, but to the feeling of almost constant near vomit, add the need for 12-16 hours of sleep every day since Friday, burping after every sip of water, stiff joints and the occasional sweaty brow; and a poorly Emma you make. Just not poorly enough. What I experience now, I would  describe as ‘horrible’, but it is nothing compared to what is to come and I feel that most keenly. Am I allow to seek sympathy now when I know I am going to need so much more in a few days, or am I just crying wolf? 

There is a lady in the hotel who had her transplant on the same day as me, and she is waiting to become unwell  just like me. However, I am jealous of her, because unlike me, she has not experienced the ‘feeling unwell’ before. It’s ridiculous, but I think I found not knowing exactly what to expect much easier than I have the last 72 hours of remembering. I would be the first to admit that I do not recall how accurately I have remembered it all. Accurate or not, my current anxiety is real

As things currently stand, my White Blood Count and Neutrophils both stand above 2, I do not have a temperature, my mouth feels woolly and my stools are non-existent. I am eating, but I am unable to drink more than a litre a day. I am more than under the weather. 

I am whinging. I know I am whinging. I cannot help it. It’s the fatigue and the overwhelming fear that I will not be strong enough to manage the pain and inflammation of my body’s mucous membrane. That my friends, is the long and short of it.

Fortunately for me, I prepared for such moments of self doubt. There is the obvious response to my questions of coping and getting through it all, stolen from a sports brand, along the lines of just doing it.

However, when I feel like my ego needs a bit of stroking, I take my mind back to February 2015. “Hello a birthday weekend away with friends in February 2015”, I say. A weekend when, in spite of being at the end of a  very long course of debilitating treatment, and thus, worrying of nothing but my ability to stay awake, I defied all my expectations and stayed awake. I saw 05:00hrs for reasons other than my back hurting and steroids . It was hard work and required some preparation, but I did it.  I was so pleased and surprised with my three day performance, that I, rather delicately declared that I had “pulled some energy out of my arse”.

A few days after that, I was asked how I thought I was going to get through my transplant, and I responded with “I will just have to pull something out of my arse, that is what I have done so far and it has worked.”

So, can I pull something out of my arse yet?

EJB x

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Something Old and Something New

And now to interrupt your regularly scheduled programming to bring you breaking news. Not breaking news exactly, but news of a hospital new. Not a new hospital built in the 20th century exactly, but a hospital that is new to me.* According to my friends at Wikipedia, the hospital in question was founded in 1123. For the reason I was there, thank goodness technology has progressed since then.

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Exhibit A: A building not built on 1123.

Yesterday was Wednesday 11 February and yesterday I have travelled Eastward to the place they call the City, just a stone’s throw away from the place where a lady once fed some birds, to the hospital called St. Bartholomew’s. If you are not familiar with the place, Benedict Cumberbatch seemingly jumped off the hospital’s roof in 2012.

I have been referred to St Bart’s (we’re on a first name basis now), ahead of my proposed allograft transplant. I have known for sometime now that an allograft at the place where everybody knows my name was not going to happen. I had hoped I could get transplant number 1 out of the way before I was sent to meet a new team of Medically Trained People. I like to compartmentalise, but having had to wait for two hours packed tight in a tin of elderly sardines yesterday morning, it is probably beneficial that I got it out of the way, whilst I still have hair to have pulled out in frustration.

I heart the NHS and I understand the why patients need to wait. In the cancer business, my previous sentence is called a disclaimer because I am about to bad mouth the NHS. Not all of the NHS exactly, but specifically the St Bart’s waiting areas and their waiting times. I must be rather spoilt at the Macmillan Cancer Centre, because I found two hours of the waiting too, too much as evidenced by Exhibit B.

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Exhibit B: A chair with no view

You cannot see because Mamma Jones failed to photograph what she was asked to photograph, but there were not enough seats for the amount of humans on the floor. Nor was there sufficient room for people with walking sticks to safely navigate their way around the chairs. Nor were the seats sufficiently space apart to allow any form of privacy. My biggest bugbear? Very comfortable chairs. I believe at one point I described the waiting area on the first floor of the West Wing as ‘oppressive’. I am allowed to make sweeping statements like that because I have a really bad type of cancer.

Despite my first impressions of the hospital being damaged by the aged crowds and the customary, bright coloured walls designed to bring much cheer to those affected with cancer (exhibit C), the Medically Trained People were exactly how I like my Medically Trained People to be. The people redeemed the space.

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Exhibit C

The main doctor, Mamma Jones and I spent a good hour with, was informative and spoke to me in my sort of language. I almost understood what is going to happen to me. The head of the clinic, who popped his head round the door greeted me with ‘are you who I think you are?’… Well, personally, I just love that sort of notoriety. He had me at ‘you’.

Once that appointment was complete, I was sent across to another building, in the maze that is the hospital. The building had a meagre seven floors to UCH’s 17, but that did not prevent it from having a nice view when I was finally taken through to a treatment room. I say finally, for I had to part take in a little bit more waiting in another busy and cramped waiting area. In the small treatment room, I met another Medically Trained Person who have me reading material and in return, I gave her a cup of my pee. I then went on to give somebody else six vials of my blood on the ground floor. I failed to win the phlebotomist over in our five minutes with my wit. Unfortunate.

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Exhibit D – A Room With A View

All in, my trip to the City took six hours of my life away. I will say that the two hours of medical interaction was worth all the sitting staring into space and listening to other people complain. I’m allowed to complain, but anybody else who does so is just ungrateful… Anyway, in conclusion at some point in my future St Bart’s is going to be my hospital for around 100 days. Let’s say approximately 114 days based on the collection of papers resting in my hallway. I’m going to have to get used to the waiting and I’m going to have to get used to the seats, because I have a sneaky suspicion the Medically Trained People I saw know what they were talking about.

EJB x

* Apart from the time I went to the sexual health clinic because I thought that that was a thing grown ups should do.

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