Archives For hickman line

I am angry because I knew this would happen and none of them listened to me. None of them were concerned that I wouldn’t have ECP for two months, despite a recent, quite severe flare. So we carried on as we were told, slowly tapering off the steroids and waiting for the new line to be put in so I could carry on with treatment. But then, while we were away, the GvHD on my hands and arms started flaring up again, with us having to go up to ten and then fifteen milligrams, then twenty and today thirty of pred to try get it under control. Which means that I have to now endure months more of misery because every time I look in the mirror, I am reminded not only of just how unattractive and stupid I look with this huge moon face, but I’m also just reminded that I’m on these damn things that remove my ability to sleep and make my immune system weaker and more susceptible to one of the bugs that’s going to eventually kill me.

Half of my self-esteem comes from how I look because frankly, when my face is its natural shape and I’m walking around, I think I look pretty fucking great. However, when I’m trapped in my wheelchair and my face is abnormally round, it makes my short hair look ridiculous and I feel like I look like an idiot because this face can’t take short hair. My eyes disappear into my cheeks and I lose any bone structure I have. I know it sounds shallow, but it matters to me enormously, and looking the way I do and will continue to until about two months after I’m off steroids, makes me literally not want to leave the house because I have no confidence whatsoever. 

It’s fine for the doctors, nurses and people who arrange line insertions – they don’t have to endure the months of no sleep and suicidal feelings every time they see their reflection. I would do anything to not be on steroids. I would go into hospital and have photopheresis every single day if it meant I could come off them more quickly. I would up my tacrolimus dose if necessary. Or try rituximab. Anything. I cannot live like this. 

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The 1st of July.

Well today is better – I have not burst into tears like I did last night after dinner. We decided that we would try one of my 7mg Zopiclones with one of Grandma’s 3.5mg ones that we still have to see if that worked, but no, it did not keep me asleep.

Anne-Marie came expecting to flush my line (I don’t know why as I told her on the phone it was out, the daft thing), but she took out my stitches instead. It was a lot easier than last time because they weren’t really tight in my neck and encrusted in dried blood.

I worked out this afternoon while watching Alphas, and had to chase away the black and white cat twice. Oscar was asleep by the window the entire time and was completely unfazed.

I got an adorable piece of post today from a lady who’s read about me in Cosmo and DM’d me for my address the other day – a pretty Ted Baker notebook and a Ciaté caviar manicure set so that’s lot of fun!

Oooh I am so looking forward to going away on Friday.

The 2nd of July.

Apart from being woken up by screaming foxes at half past two then not going back to sleep, today has been pretty stupendous.

Mommy went to the Post Office this morning and the new Cosmo with my piece in was there! I was almost too nervous to open it even though I knew what it said. It’s pretty perfect; they haven’t changed the copy that Julie wrote so I’m happy. My story is particularly pertinent today as the main headline on the news all day has been David Cameron saying “We need new antibiotics or loads of people will die from resistant bugs”! Yes Dave. You’re a tad late, but it’s the thought that counts. Hi, my name’s Kathryn, and I’m going to die from a superbug that drug companies find too uneconomical to try and kill.

This afternoon I went to meet Rahul who I went to Hallfield with so he could give me the blanket his friends have made for me and it’s so nice! I will definitely be taking it with me next time I’m in hospital. I basically just spent the entire time talking about myself which is terrible but I did find out the basic things he’s done in the last ten years (done English at uni, now working/living in New York and here doing real estate) before his car ticket ran out and we both had to go.

Becky came round to see the magazine and let us know how she’d got on at the chiro, and it’s nearly eight o’clock and I want to sleep so much.

Oh and I had to answer the door to the window cleaner in my kitty pyjamas this morning. But y’know. Swings and roundabouts.

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The 25th of June.

Four o’clock this morning. I think when people ask how I am, I will start responding with the time I woke up. I listened to two Josh Widdicombe podcasts and did some sudoku to kill the time until seven when I got up. I wrote up a blog post and had some breakfast and coffee. Then I worked out during Jeremy Kyle and This Morning while Mommy took Grandma to Sutton.

I kept getting interrupted! First, a delivery, then a guy offering tree surgery, then the postman, then the phone! I was just like CAN WE NOT PLEASE?! I do not love answering the door all sweaty and disgusting.

When I was done, I had a really long, lovely, pampering shower. All clean and scrubbed and shaved, then moisturised and prettified. I felt super-cute about myself this afternoon.

Mommy and I watched the last two episodes of season 9 of Criminal Minds and it was so dramatic and stressful! We get far too involved.

Tonight the winning category of the Longitude Prize was announced and it’s antibiotics! I was so happy that I cheered and punched the air. In the future, people in my position with antibiotic-resistant bugs won’t have no hope.

The 26th of June.

A day of ups and downs. Starting with downs. I was awake at three, again at half four and by five I was wide awake. Listened to podcasts, got up just before seven.

My plan this morning was to ring the QE to find out what was going on with my new line, and basically the photopheresis team know nothing and will do nothing. Apparently they were going to offer me the 4th of July, but that is the date we go away and they knew this. As soon as I hung up, I burst into tears because I am so tired and stressed. Mommy rang Ram’s secretary, who spoke to him, and eventually I had another phone call from the photopheresis nurses saying sorry, there’s nothing they can do, the line people just can’t fit me in and the fact that I won’t have had photopheresis for two months by the time I do get it at the earliest, despite a very recent GvH flare, isn’t important and nobody cares. I have clinic with Ram on Monday and it is not going to go well. Peter Taylor would move heaven and earth to get me a line if it were necessary.

So after all that, I was really happy to go and see Fiona, Nick and baby Phoebe! She just slept in my arms and I couldn’t stop staring at her; she’s gorgeous. I can’t wait to see her again when she’s more awake!

This afternoon I read The Farm in its entirety and iced some cupcakes for Alison to take to school tomorrow.

I am just a wreck.

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The 19th of June.

I slept a little later today – I woke up closer to half five than five. I got up at seven because I wanted to get a workout in before we went to the QE for half twelve line removal.

We went out just before twelve to give us time to park and get coffee before going up to 621. We waved at Sharon when we got there and she went to ring Susie, the doctor who was going to come and do it. She was on her way so promptly appeared, and just talked me through what would happen as I’ve not actually had to have a line removed like this before – previous ones have happened under GA or mild sedation in theatre. This was in a side room on the ward. It was fairly unremarkable: I lay down with a gown covering my modesty, she jabbed me a few times with some local anaesthetic, then made a small incision. There was some tugging and rummaging, and she snipped all around the cuff that had embedded, then she cut it into two and made me take a deep breath in, then she pulled it out on the exhale. She then applied some pressure for a few minutes and stitched me up! No pain, no dramas. I got re-dressed, had a look at the line but there was no obvious visual problem, and we left. I got Mommy to take photos all the way through because I couldn’t watch without getting my head in Susie’s way.

When we got home, we had lunch and watched things on the box. As fine as I feel, I know I do need to rest so tomorrow will be a quiet day too. Just have to wait for a slot for my new apheresis line now!

The 20th of June.

Nice day! My Zopiclone plan didn’t work (I was going to take it when I woke up in the middle of the night, and it would knock me out for a bit longer, but I still was up at half seven) so I’m just going to have to deal with that. I think lorazepam would work but that is really a last resort.

My chest doesn’t hurt too much, and it’s a bit strange not having to move the line out of the way, but I’m sure that will change soon enough. I’d cancelled my session with Danny because I did not think it would be wise to put stress on my arms/chest, so I’ll see him next week (well that’s the current plan, we’ll see when the new line gets put in which I’m sure will scupper matters).

Mommy wanted to go to the O2 shop as she had questions about her phone, so we did that, I got some pants and pyjamas from Topshop, and we bought some cards from Paperchase, because we need to sent Christine one to congratulate her on her new job! She rang and I answered Mommy’s phone as she wasn’t there, then she appeared and I relayed the news which resulted in a very loud, happy squeal. I think we are all very relieved.

Nothing particularly exciting has happened for me today, but I am very content.

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The 17th of June.

I took a Zopiclone again last night because my tongue was aching like crazy. Still woke up at half five because that is my life.

I worked out again this morning because I know I won’t have time to tomorrow, plus I am going to consume approximately one zillion calories at Five Guys and Miller & Carter. I finished just in time for my ASOS delivery, only one item from which I am keeping. I also had a delivery of macarons from Dr. Tim! They are trialling delivery at Macarons & More and I was a guinea pig. I can confirm that they arrived intact, beautifully presented and testing even better than before which I didn’t think possible! I’ve had the lemon, the salted caramel, and the vanilla so far.

Mommy and I went to town this afternoon because I haven’t been for what seems like ages, and I got a dress from Oasis and a mascara. Selfridges are revamping or something and it’s dreadful. The womenswear is split between the 3rd and 4th floors, all price ranges smushed together. It makes no sense and is utterly bizarre to try and navigate. I have emailed them about it.

When we got back, we tried to flush my line again (it’s misbehaving) and it’s just sucking things up and won’t bleed. It won’t even give back the saline immediately after you’ve pushed it in. It’s a good thing I’m at the QE tomorrow.

I helped Becky decorate some cakes for her Grandma’s birthday (my piping skills were in demand) and tonight I have painted my nails.

The 18th of June.

Holy fucking God I am so tired. Steroids are the worst. I’ve been awake since five am. I decided to get up at seven-ish because I was too hungry to stay in bed any longer. This morning I began as I meant to go on, as today was going to be terrible in terms of diet without question. I chopped up some dark chocolate and shoved it into a croissant which I subsequently shoved into my face.

I met Sadie for lunch at Five Guys at half twelve, which was less busy than I expected. A queue did form while we were there though so maybe we were just early? I ordered a hot dog with ketchup (I was afraid of going too fat-heavy) and she had a double bacon cheeseburger. We had a medium Cajun fries to share, but they were way too spicy for my lips to deal with so I only ate about two. I saw Alison Hammond and said hi (we’ve met a few times so she vaguely recognises me now), and Sadie and I caught up on each other’s super-exciting lives. She has to write two chapters of her thesis by the 23rd, so today’s hangout was a tiny break from work. I knew I needed to leave town by 2 as we were going to see the photopheresis nurses about my line before liver clinic, so we went across to Starbucks so I could get a mocha cookie crumble frappuccino at about quarter to (I said it was a bad diet day), then I went back to the car and off to the QE!

The nurses are completely befuddled by my line’s behaviour, after having had a good go at it. They rang Ram and he wants it out ASAP, so I’m back tomorrow at 12.30 for someone to yank it out of my chest. Fun. Then we went to liver clinic, where we saw Philippa for the first time since before she went to have her baby! She showed us lots of pictures. We got in to see James very quickly and there wasn’t much to say – just told him what had been going on with my mouth and skin, drug changes, sporadic bleeding and he checked that Andy Toogood had made the referral which he has. Apparently this gynae lady is the wife of one of the liver consultants who I think I’ve met only once but it’s always good to have a connection. He wanted some bloods as I haven’t had any proper ones done for about a month, so after he’d advised me against any more fried food, I went and got stabbed and we came home!

Tonight Grandma took us to Miller & Carter because Maureen and Audrey have come down to visit (she calls them “the girl” even though they are in their eighties), so I erred on the side of caution and ate a sirloin steak and a few sweet potato wedges but was generally terrible company because I am exhausted.

It is half past nine and I am going to bed.

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The 5th of June.

Oh, steroids. I’m going to be painstakingly monitoring the shape of my face and, I imagine, the amount/quality of my sleep. Face size will increase, sleep will decrease. Holding onto sanity for as long as possible.

This morning I slept until 9.30 which was lovely and had quite a slow morning, just pottering and getting ready for Danny to come. He was a little bit late but then we worked hard for an hour, especially on dumbbell flys on the stability ball which has really worked my chest muscles so that will be interesting tomorrow!

Mommy made some biscuits (white chocolate custard cookies – hard to explain but they’re amazing) and cupcakes so I iced those and put some sugar butterflies on them, but they’re a bit messy for my liking. Not up to my usual standard because I didn’t pipe the frosting. When I can cope better with crumbs, I’ll eat some. Stupid tongue.

In other news, I think I might be developing visible abs? It’s difficult to tell as my liver scar is really rather in the way.

The 6th of June.

And there goes the sleep. Been awake since before six. Going to be watching much stuff on Netflix over the coming early mornings.

I got my hair washed before nurse Katie arrived to flush my line. Well, it flushed, but it wouldn’t bleed back. Hm. Not good. I told her I’d ring the photopheresis team and probably go up to 621 this afternoon. However, she was not particularly persistent with the line, so when Mommy came back from Grandma to coffee, I asked her if she wanted to have a go. She’s trained, so it was all fine and sterile, and after some pushing and pulling, we got blood back and I did not have to ring the QE!

While we were doing this, I was texting Dan as he was coming round with his girlfriend Emily who wanted to meet me and I’m glad she did as she’s an utter delight. They were a bit late as they came across a poorly hedgehog so called the RSPCA who came and collected it. When they arrived, I made some tea and we had biscuits, and we sat in the living room having nice chats and watching Oscar get stuck in the carpet while we extolled the virtues of living in Boldmere/Birmingham. They eventually had to leave as they had places to be (Jen’s!), so then I ate some soup and gave Oscar a massive brush so there was fluff everywhere.

Tonight I’m watching mostly Channel 4 and I’ve been tweeted by Josie Long so I’m really happy.

The 13th of February.

Oh wow I am sore. I was up at quarter to six so we could go to hospital for half seven. Thankfully, things in ambulatory care went well – I read the paper and ignored my grumbly tummy because I was nil by mouth. A nurse called Sonia admitted me, and not long after, they came to take me to have my line put in! Had to have the long chat about periods and how there is definitely no chance I could be pregnant, and go through all the risks on the consent form. They gave me some midazolam which made me a bit sleepy and fuzzy, although I did have to ask for some more because despite the local, it was still pretty uncomfortable. Once it was over, they let me pull out my PICC line which was fun! It was much longer than I thought.

They took me back to ambulatory care where I had to stay on bed rest for two hours, but I was allowed to sit up so I could adjust my body to aid comfort. Once the two hours were over, I was allowed to get dressed and go up to photopheresis. That went really well, thank God. The line is in a good place, so it won’t be awkward to get out of clothes, and we’ll be back tomorrow. I might need a bag of blood or two in the morning. I really hope not as that would make it such a long day.

Becky came over with some brownies and they were very tasty. I’m going to have an early night tonight; I’m so achy.

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Ambulatory care.

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Post-op breakfast, yeah!

The 14th of February.

Well my Valentine’s Day has been such fun. It began with me chasing the nasty black and white cat out of the front garden (a spectacle I’m sure the the neighbours all enjoyed), then going back to hospital early because I needed two bags of blood before photopheresis as my haemoglobin yesterday was only 9.2 and they prefer it to be over 10.

We got there at about half past nine and the blood didn’t arrive for at least another hour, so I just read my paper and waited for the porter to bring it. The transfusions were all very run of the mill; made me quite pink and warm but all in a good way. Then just after two o’clock, I was ready to get going on the photopheresis machine. Just before I did though, I thought I’d pop to the toilet, where someone had forgotten to lock the door so I walked in on an elderly lady who was obviously a patient sat on the toilet. I just blurted “Sorry!” and shut the door as quickly as possible. I went into the next toilet and made very certain that I locked it.This was all fine and dandy and I was pootling along, then when my cells were being returned, the machine kept alarming and not wanting to play the game. Eventually we swapped lumens, because the intensely high-pitched beeping were adding to my level of stress, which was further compounded by the fact that we were forced to listen to Radio 2 all day. We hate Radio 2. At the end of the treatment, you get a time of how long it’ll take to photoactivate the cells and give them back, which is usually about 15 minutes for me. Today, it was 99. It was a good thing I took a lot of food to keep me going! We finally left hospital at six. I was so on the edge of bursting into tears, I can’t explain.

So tonight I am absolutely drained. I’m still very sore and achy, and I would just like to sleep for a week.

And to round off my wonderful day, I whacked my head on the staircase after putting my boots down underneath it.

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We had to make Valentine’s Day cupcakes for a tea party at my Grandma’s nursing home. Seriously.

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Home time.

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