Archives For July 2017

The 22nd of July. 

Writing this on Sunday morning because I was not exactly in a fit state last night. 

This morning, after breakfast and coffee, I had a lot of typing to do – two long blog posts done. When I have to write very long ones, I use the laptop, but it’s not good for my wrists. My body is so broken. 

I had some lunch, then got myself ready to go to Becky’s for her birthday barbecue. When I arrived, I was presented with a glass of rosé and took a spot in the garden, under the gazebo. It wasn’t super warm, but it was at least not raining. All of the usual gang were there – Chris, Alison, Jamie, Lorna (and her boyfriend Will), Micky and Stuart, Michael and Barbara. Other people were going to come and go as the day went on. 

We managed to soldier through the first shower, but after about 5 o’clock, it was getting a bit chilly and we decamped into the living room. I sat next to Luna, one of the cats, so I always had someone to talk to. We played Cards Against Humanity, which I have not done before, but I won three black cards so I was pleased with myself. 

By the time I had started my third wine, it had got to about half past nine, and I was quite sozzled. Decided it was time to go home – I needed carbs and water, and if I’d stayed, I would have continued to drink and things could have ended rather messily. 

The 23rd of July. 

Hmm well rosé does not agree with me. The last time I had it was at Jill’s when I also had Four Loko and some kind of apple shots so the hangover could have been attributed to any of those. Today I haven’t been hungover, but I’ve had really unpleasant heartburn since last night. Had some Rennies today but it still isn’t 100% gone. Ugh. 

I had a nice morning watching ol’ Nish on Sunday Brunch, writing about yesterday and trying to ignore Rita Ora. I don’t know why, I just find her incredibly irksome. Grandma didn’t go to church, so she came to us for lunch, which we actually had at lunchtime, not mid-afternoon. 

Afterwards, I went upstairs for an hour or so to have a lie down and stretch of my stomach, give it a bit of a rest, while I listened to some podcasts. I came back down to say bye to Christine, and crocheted some more of the minion while the cricket was on. Then I went to see the floofs, and watched one episode of Orphan Black. I’ve got two episodes left of season 4, then I’ll actually be on the current series. 

Grandma has gone home, and I’m starting to think about some tea. More carbs, I think. 

The 20th of July.

Second trip to London this week! So much wheelchair – my bum is not going to thank me. Left much earlier today, as the train was at half ten, so we could have lunch in Covent Garden before the show. We went to Timberyard because it’s my favourite, despite them not doing crodoughs anymore. I had a ham and cheese croissant, a chocolate chip brownie pie and a flat white, after which I was very full and had to undo the top button of my jeans.

We had to pick up the tickets from the Donmar at two, then we waited for Christine to arrive inside the foyer. The rest of the audience seemed to be elderly people, but then again, what can one expect for a Thursday matinee? Anyway, once she appeared, we went to find our seats and settled in for Committee (or The Public Administration and Constitutional Affairs Committee takes oral evidence on Whitehall’s relationship with Kids Company). We went because Naomi was involved in the development, and we were intrigued to see how it had turned out. It was a musical developed from the transcripts of the session in which Camila Batmanghelidjh and Alan Yentob were interviewed, plus testimonies submitted for evidence. Considering the material, it is interesting and entertaining. The set is very smart, and the performances of the singers are really remarkable. I’m not sure I entirely grasped the point, but I enjoyed it.

After the show, we went for a drink, then dinner at Hawksmoor. I didn’t really have much room in my belly, so I decided to go for some lemon chicken with Béarnaise sauce and buttered greens, while Mommy and Christine had steak/a burger, then panna cotta. I just wanted a lie down.

We paid the bill, then we had about an hour before we had to be at Euston, so we decided to walk/drive back. The weather was nice, so why not?

The 21st of July. 

Everything hurts. My butt hurts, my legs hurt, my back hurts, my neck hurts. Sitting in the wheelchair for two out of three days is very bad for my body. 

I gave myself a lie-in this morning because I was awake until two, burping. I don’t know why – another mystery of my fucked digestive system. So there wasn’t a huge amount of morning left after breakfast and coffee, and I spent what remained watching BBC Newsroom and writing about yesterday. Tomorrow I will write two very long blog posts. 

After lunch, I started crocheting the minion I am making for Herbie, while I watched Orphan Black. Three episodes done and most of his yellow body. I have much crocheting to do, so I will have to have some industrious days. 

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

The 16th of July. 

I’m not feeling quite so terrible today. I slept until half past nine which is a lie-in to me, and spent my morning enjoying Joe on Sunday Brunch and writing up a blog post. Back on schedule for at least one entry. 

After lunch, I had a hairwash, then tried on a bunch of clothes. I cannot find something in my wardrobe that goes with the shirt I got – if I put it with a skirt, I look like a teacher (and not in a good way), and the only item that it worked with was some pink shorts. If I were going to be able to stand up while I talk to people on Tuesday that would be fine, but I can’t do that and breathe. However, when I sit down in the shorts, they become really too short to be appropriate. So tomorrow after liver clinic, shopping we will go. 

I have been to pet the kitties, and I made Bree purr! The only times she has purred have been when she is feeding from Betty, but this afternoon, Betty was not near her, and I stroked her into submission. I am the best at cats. 

The 17th of July. 

Last early start for a few days. This morning we had to leave the house at 8 to get to liver clinic at 9. Got there only just in time, but still before the doctors! Still, James didn’t exactly have chance to start running late, and there was only one chap ahead of me. We had a chat about my recent stays in, and he was delighted to say that while I was incapable of breathing, my liver coped extremely well! Good work, liver. He was also happy to do my referral to the lymphoedema clinic, and he is good at doing things, so hopefully they contact me relatively soon. 

When we were finished, we went to town to find some trousers to go with my shirt for tomorrow. Incredibly, the first pair I tried on were right! I tried on a few more, just to make sure, but they weren’t as good, so we were done pretty quickly and were home by lunchtime!

This afternoon, I watched two episodes of Nashville, only crying in one, then I went to sit with the kitties and watch Orphan Black. There was a fly in the room which they found greatly interesting, so much so that Bree chased it into the window. Stupid kitty. 

The 14th of July. 

I have not really felt up to participating in life today. Not quite under the heavy cloud, but definitely not feeling myself. 

I didn’t have a great start to the day; up early again for the dentist this time. I saw the dentist first, and that was fine, but then I saw the hygienist and it wasn’t my normal one. I did not like her. She was very against me using a manual toothbrush or floss picks, and she was adamant that the kids’ Sensodyne Pronamel toothpaste isn’t minty (it definitely fucking is) and wouldn’t listen to me when I protested. She said I had loads of plaque, then cleaned my teeth really aggressively and painfully – there was blood all over my face and bib which has never happened before. She really didn’t seem to care about my history, or the fact that in all the time I’ve been at this practice and seeing Mrs. Richards, nobody has felt that I had any problems. I was very glad to get out of there. When I had to rebook, I made a point of making sure it was with my normal hygienist. Not seeing that woman again. 

Got home where I could finally have my coffee (no time before I went out), and I rang the lymphoedema clinic that has been recommended to me. They said I needed a referral, so on Monday I’ll get a consultant to write a letter. 

The rest of my day has been spent looking for something to wear on Tuesday. Fuck my arm. If I weren’t right-handed, I’d have chopped it off. 

The 15th of July. 

I am so tired. Another bloody early start for another morning appointment. This time it was to see the eye man at the QE. They were not running so on time today, so my 9.50 appointment ended up being more like half ten. Still, it was good news – said they were the best he’d seen them, which would certainly tally with how I feel. I can cut out one eye drop, so it won’t take so long to go to bed, and he’s prescribed something that might be better than Hyabak. 

Got home about twenty to twelve, and the stuff I’d ordered from ASOS yesterday had arrived. I’d sent for a couple of shirts and a dress. I’m definitely keeping at least one shirt, not sure about the other, and the dress is going back. It’s too dark for me. Shame. 

This afternoon, I listened to the tennis while writing up the venoplasty blog post, and I’ve been to pet the kitties a few times. There is interest in Bree but I really need Betty to go first, or she’ll freak out of she’s alone for the first time in a new place. Bah. 

Finally finished that doily I have been working on. I think next I will do some things for the new babies that are coming soon – Peter and Sophie’s, Michaela’s, and Robyn and Stu’s. All the babies!

The 12th of July. 

Venoplasty day!

Any day in ambulatory care means getting up before six which is not ideal, but necessary. I was last to arrive in my section, but that didn’t matter because I was third on the list, so there was no rush with my admission. I didn’t expect to go down until about eleven, so I was very surprised when a porter arrived at twenty past ten. The nurses didn’t even know, so I had to quickly go pee and put my gown on. 

Across in angio, I said hi to all the team, and Mr. Singh (who put the PICC in) came to consent me. Then Andrew came and we had a chat about the plan – it was left unspoken that this is our last shot. 

On the table, I was prepped, covered, cleaned. It is a testament to the greatness of the team that I have to be essentially naked in front of the whole room for a while but at no point did I feel undignified or unsafe. My groin was ultrasounded to find the vein, but there seemed to be trouble getting into it because I heard a lot of talk about scarring, then a dilator had to be used to hold it open so the sheath could go in. Then there were issues with the wires – people had to keep getting different ones from the wall. I think it was to do with the length or the stiffness? They were having to get all the way from the groin up to my neck, which is pretty far. They did a couple of runs with the gadolinium to check everything was in the right place, then it was time for fun and sleepy drugs. I got the nice, warm fuzz, then the discomfort of having balloons inflated inside you. I think they did maybe six inflations in total? They used the two biggest balloons available, in one site in the neck vein, one in the SVC and again a little bit further down. Then everything came out, and I had the awkward five minutes where a man leans heavily on my groin to stop the bleeding and there isn’t much to say. 

I went into recovery about twenty past twelve, where I had to stay for half an hour to make sure I was fine before they’d take the PICC out. When it came to that time, the nurses had changed, and the new one hadn’t done it before, so we had to grab a doctor to do it. The nurse watched closely, but there isn’t much to learn – just pull it out, then put some pressure on the hole. Then the nurse was able to ring the ward, where a student nurse said someone would come for me. Forty five minutes later, she rang again, and the staff nurse said she hadn’t passed on the message, and came straight away. I was fine; another nurse had shared her Jelly Babies with me and I only had twenty minutes of lying flat left. 

Back in ambulatory care, I asked Mommy to get the flowers and chocolates from the car because Emelda and Tracey would be gone by the time I’d be able to, so she delivered those and then got me some coffee and a sandwich, which I was only too eager to get into my face. Then we just had two hours to kill, so I was checking the tennis and talking to Mommy about what had happened in angio and what we do now. I have to keep my arm elevated a lot and try to squeeze the fluid down. We’re going to see if the massage people at the chiro do lymphatic drainage, and if that could help me. I’m also considering acupuncture. Anything that will get this swelling to go down. Anything at all. 

By half past four, I’d got myself ready to go, so I was given my discharge letter and we were out of there. I had a ticket to hear Matt Haig talk about his new book, How to Stop Time, at Waterstones at half past six, and I needed some dinner first. I ended up having a cinnamon crêpe and a chocolate milkshake because I am an adult and I can. 

Because of the wheelchair, I had to use the lift to get to that second floor, where the event was, which meant I basically jumped the queue. However, I chose to sit at the front which was good for watching the interview, but then I was at the back of the queue for the signing. However (and I honestly don’t know why this happened), some people near the front said I could go in front of them, so I got out a lot quicker than I might have. I just wanted to tell him how much I loved Reasons to Stay Alive. I’m so excited to read this new one. 

The 13th of July. 

Trying not to get sad. I’m pretty sure the venoplasty isn’t going to have worked. I’ve spent most of my day looking for effective treatments for lymphoedema. 

I had a chiro appointment this morning, which I was very thankful for because a) my neck has been really clunky recently and b) I wanted to ask about the massage/lymphatic drainage thing. Turns out my neck muscles have been recruited to help me breathe so they’ve got all stiff, and Trine’s not sure if they do this but she’ll find out on Monday. 

When we got back, I wrote a long entry about yesterday, watched two rather short Wimbledon semi-finals, and did a lot of internet research. There are the standard treatments of drainage massage and compression garments, but honestly they don’t sound very effective. There is a chance that acupuncture may have a small amount of benefit, but I’d want to know somebody who’d had it, not just pick a random practitioner. Or there are surgical interventions, and frankly I am leaning towards those. I will try anything. I just want my arm back. I want to not feel deformed. 

The 10th of July. 

One more day. Will have to find some activity to pass the time tomorrow while I count down the hours. I think a lot of crochet. 

Better sleep. This morning I wrote up a blog post (back on track, although Wednesday’s will be late), and I spoke to Nicola about the bloods. She rang the labs to ask about the biochemistry, and they denied all knowledge of it. Hmph. She said I could come into clinic this afternoon to have them done again, so after lunch, off we went. 

Arrived at the hospital just before two. Neil sent me down to the nurses who had the form, and I got stabbed again. That vein is going to stop cooperating. Anyway, the biochemistry has now been sent off again and if the labs disagree, they will get a telling off. 

I think we were back out within ten minutes of entering the car park, so after getting home, Mommy went back out to Grandma’s. I did some Cats Protection adoption admin while listening to the new My Dad Wrote A Porno, then it was Orphan Black and floof time. Bree sat on me for maybe a whole minute which sounds like nothing, but that’s the longest ever and I didn’t have to try to keep her there. She goes on the website tomorrow. I am prepared for the deluge of potential adopters. 

The 11th of July. 

Crocheted the day away. Up, breakfast, coffee, blah. Got out the doily I have been working on for the past few weeks. Most of the day has been WimbledonB and crochet. Just after twelve, we went to M&S to buy some flowers for me to give to Emelda (Andrew’s secretary) and got a pretzel and cinnamon swirl for lunch because why not?

This afternoon, back on the crochet with one eye on the tennis. I planned to go and sit with the kitties, but pretty much as soon as I sat down, Betty did a poo, so I left again. They smell absolutely awful; I cannot be in the room with one. So, back in the living room, I watched the last two episodes of season 3 of Orphan Black. It’s so easy to get through when there are only 10 episodes per season. 

I don’t know how much I’ll sleep tonight. The biochemistry hasn’t shown up on myhealth which is annoying/concerning. They can bleed me in the morning if necessary but ugh. I just want this to be over. I want to not have to wear oversized clothes or be able to make dents in my spongy tissue or feel my veins being squeezed. I want to feel like me again. 

One nice thing happened: a girl I went to Guides with sent me a message to say she has signed up to be a stem cell donor because of me. One more.