31st October, 2008. I spiked a temperature, so we adhered to protocol and went to A&E. I was admitted to a cubicle in HDU on Ward 15 for what I thought would be a weekend of IV antibiotics, but turned into seven months of gastric destruction and liver failure, liver transplant, unprecedented accidental stem cell transplant, and rehabilitation. It’s funny that a night on which people dress up as somebody else, I would start a journey that resulted in an entirely new identity.
When I had cancer, I was certainly sick and weak, but never as lifeless and limp as when I was in liver failure, and in recovery from it. Being a still fairly independent young woman, regressing to an almost childlike-level of dependency on those caring for me plunged me into an identity crisis. One’s identity is so tied to the physical self, at least in adolescence, I think, having that completely stripped away and changed put me in turmoil. I went from eight and a half stone at admission to just over five at my sickest. My stomach’s lining had been destroyed by GvHD and I had none of the enzymes needed to digest anything, so gastric nourishment was nigh on impossible, leaving me with only intravenous feeds as an option. It was so drastic, and my brain was so mixed up on morphine and ketamine, I couldn’t process my new exterior. I also had no muscle mass, having to learn just to stand and walk again. So much of who I think I am is connected to the image I project to the world, how I am perceived, that such changes to my body have had a massive impact on how I feel about myself. Even how I mobilise affects how I behave – if I can walk, I feel confident and happy and strong because you would never guess from my outward appearance that internally I am broken, but when I’m in the chair, I feel diminished, invisible, and much more like I have to put on a brave face to show that I am not my disability, I am just like you, I just don’t have the energy to walk right now.
At the moment I’m weakened, on steroids and a million miles from where I want to be. I’d hate to appear in the media right now because I wouldn’t want the image that represents me to look this way, even though I know that rationally, it is not how I look that will be what is remembered, but what I have done and the words I have said. What remains of me will be in the memories of my loved ones, recreated whenever they bring me to mind. How I am remembered is determined by who I choose to be, and when I feel let down by my physical self, I must fight the urge to hate myself, and instead put that energy into banging my drum.
Archives For October 2014
The 25th of October.
Oh God I have been awake since about half three, just constantly coughing and I’ve barely stopped. I am not looking forward to the clocks going back as that just means another hour of coughing.
Bless Dan. He’s home this weekend and texted to see if I was free for a cuppa but I could barely breathe just to breathe, never mind trying to hold a conversation. I sound like a cross between Wheezy from Toy Story and a walrus.
I feel so awful. I just want this to be over.
The 26th of October.
Zopiclone helped last night. It’s a shame it doesn’t work every night. Tonight might be a tough one.
Having a viral cough is one of the most frustrating illnesses. I am constantly tired but incapable of sleeping because of the incessant cough. I am sick of being stuck at home but don’t have the energy to go out. My hair desperately needs washing but I don’t have the strength to blow-dry it properly. And I’m stuck on 10mg of steroid until this shows some sign of improvement.
I am supposed to be at the dental hospital tomorrow which is not going to happen. I am very fed up of this and would like to be better soon.
The 23rd of October.
We have oxygen at home again. So that’s fun. Last time we had to have this, I think it was post-flu? Igor offered me a hospital bed but I declined the offer. There’s nothing they can give me so it’s best for me to be at home and have oxygen.
The Zopiclone I had last night didn’t work, so I won’t bother tonight, and suspect I might be in for a severe lack of sleep and it’s just going to be grand. I was at hospital from nine until half four having blood, photopheresis, pharmacy and x-ray, then we went into town to get manuka honey then decided against it.
So I’m exhausted, coughing and trying ever so hard not to say “I wish I was dead” whenever someone asks me how I am.
The 24th of October.
Another day of feeling dreadful. The oxygen helps, and it moves stuff around, but I am so worn out. I don’t know how long I can keep this up for.
Carol came round today and I was not much for the chat so I just coughed while she and Mommy talked and I occasionally interjected.
I’m sorry I have literally nothing to say but I fee like shit and there is nothing else happening.
The 21st of October.
I feel like hell. It took me hours to get to sleep because I couldn’t stop coughing, and this morning it took about an hour for me to get up and dressed.
I’ve basically not moved from the armchair because everything is massively difficult. I’m not sure how I’m going to get back upstairs. My abs, ribs and back ache so much, every cough is painful. I’m quite glad I have photopheresis tomorrow so they can take samples of the cack I’m bringing up and then see if it’s a virus or something they can actually treat.
I am so tired. I need to go upstairs really early because last night it took me forever to actually get into bed.
The 22nd of October.
More coughing. I had a Zopiclone which I think was beneficial, and I’ll do it again tonight.
I had to move out of the armchair to go to hospital for photopheresis. They gave me a sample pot for anything I bring up (unfortunately nothing has come up far enough so far) but they also took bloods and a viral swab so they might show something. They showed that my haemoglobin was 8.4 though so I’ll be having a bag or two of O-neg in the morning, meaning I have to get up early tomorrow so that just fills me with joy.
Ugh I just feel like shit because I’m exhausted and all my muscles and bones ache from the coughing. And I’m not even allowed ibuprofen because I’m on steroids! And we can’t taper the steroids while I’m poorly because that’ll make the gvh kick off more!
The 19th of October.
Oh, no. It seems I have developed a dry cough that is unproductive and is just an irritance. It also makes it very difficult to indulge in one of my favourite activities – talking.
I had Zopiclone again last night so my sleep was pretty unbroken which was nice and I didn’t get up until half past eight.
I watched Sunday Brunch, and Mommy washed my hair. This afternoon, I’ve read The Blue Nowhere, crocheted, and watched Agents of SHIELD. I need to catch up before the new series starts.
The reason I don’t think about the really big stuff is because it makes me like this – lovelorn and lonely, pining after something I can never have.
The 20th of October.
I seem to be rather poorly. I am coughing up junk and it has just got worse throughout the day. I really haven’t done anything in an effort to conserve energy for Ed Sheeran tonight.
He was super super good. For one man to hold an entire arena by himself for two hours is pretty spectacular. I couldn’t join in with all the crowd singalongs he was initiating because I would have bust a gut coughing. He can sing and play really well live. His rapping is also very accomplished – you can tell he has a frustrated hip hop star within. I was slightly offended by his insinuation that loads of women only liked The Hobbit since he was on the soundtrack. I think he’ll find some women have liked LOTR since it was in cinemas back in the day.
I am utterly exhausted and am not sure how I’m going to get upstairs.