Archives For July 2018

The 18th of July.

I love days like today. I live for them.

I went to London for the annual summer reception for the APPG for stem cell transplantation at Parliament. The journey down there was pretty uneventful; I just drank my coffee and listened to Surf Music by Paul Williams (thank you James Acaster for that recommendation). The assistance people were pretty timely upon my arrival for once, so I got out of Euston and made my way to Albertini, where I was meeting Laura for lunch. We have been friends for yonks, since we were both on LiveJournal about fourteen years ago, but have never had the opportunity to meet. I thought, seeing as I was going to be in town and she works near Euston, it was an ideal time for us to get together. She was already there when I arrived, and we got seated and set about picking our meals. I went for a pizze bufala (basically a margherita but with big blobs of mozzarella and extra basil) and she had mushroom pasta. We did a lot of complaining about the government, especially Boris, the Love Island recruitment process, what she does for a living, what I do instead of making a living, plus what I was going to be doing this afternoon. It was only a shame that we didn’t have longer, but she had to get back to work and I was supposed to leave about an hour to get through security at Westminster, so we said goodbye with a promise to do it again when we have more time.

I beetled up the road to St. Pancras because it was the closest taxi rank, and managed to poach a cab that had just dropped someone off. He took me down, and was able to stop the closest to where I needed to be, out of the three times I have made this journey. It turned out I didn’t need huge amounts of time to get through security, because a woman sent me down a different ramp that bypassed the queue, so I just popped my bag in a tray, negotiated the metal detector, and got gently patted down. I got into the main entrance, where I expected to have to twiddle my thumbs for the next hour. However, they had a small but interesting exhibition about women’s suffrage, so I looked at that, then found some Anthony Nolan people at the other end and we found some very agreeable members of staff to get me to the terrace pavilion via the accessible route.

When we got there, we weren’t quite allowed in yet, because they were still setting up the cakes and stuff, so we had to hang around in a little vestibule until we were able to enter. Once enough of us had arrived, whatever cordon was in place seemed to be lifted, and we were able to spread out. I said hello to everyone, then sat for quite a while with Laura, who works with Lucy (who helped me with the gig), and we talked a lot about carbs and the gym and stray cats wandering into our houses.

This year I did want to make a point of talking to more people, because for the past two, I have ended up only spending time with one or two and just talking to them for ages which is nice and all but I thought I would make a change. I made a beeline for Simon Bostic, who was the first ever recipient of a stem cell transplant from an unrelated donor. It was because of his story and his mother’s campaign to find a donor that Shirley Nolan was inspired and began what we know to be Anthony Nolan today. I wanted to find out more about him, and his life now, and (maybe rather egotistically of me) thought he would be interested in meeting me, as the first recipient of a completely unmatched donor. He and his husband were pretty shocked to learn the story, but once we’d got through that, we talked more about after effects, and how a transplant isn’t a magical cure, and chronic lung disease. His capacity is worse than mine, but I think his gas exchange is better because he is able to stand up and talk simultaneously, which I cannot do without getting breathless, even with oxygen. Lungs are weird.

Suddenly, out of the corner of my eye, I spotted someone that looked familiar. I turned to look, and to my utter delight I saw Manos! He was a reg at BCH when I relapsed, and was there all through the transplant and bad GvHD. I can’t remember exactly when he left, but he was then at the QE when I transferred there, and now runs the haematology/transplant department at Heartlands. He seemed equally thrilled to see me, and we had a massive hug and started reminiscing. I caught him up on how I am generally functioning now, and he told me about the developments on the ward where he works, and how he thinks about me when people want to give up on a patient, but he refuses to because he has seen impossible things happen. He gave an example of a patient that he has not forsaken even though everyone else wants to, but now that guy has gone to Israel to have a drug that he couldn’t get here, and now Manos is going to give him a transplant that means his children won’t lose their dad. Then he introduced me to Prof. John Snowden, Chair of the NHS England National Specialised Commissioning Clinical Reference Group (CRG) for BMT, who was one of the speakers. He’s also interested in people who’ve had solid organ and stem cell transplants, so we could have talked for a long time. However, he couldn’t chat much because he had to talk to the organisers about his speech and how it was going to run. My fellow transplant recipient and journalist friend Hannah was there, so we got to hang out again which was lovely, and I met Lisa Nugent, the head of donor recruitment for DKMS along with their head of PR, Nigel. We went to get drinks, and were going to continue our conversation when it was time for speeches. Mark Tami MP said a few words, then introduced Prof. Snowden. He talked about how long the NHS has been doing stem cell transplants, and about how we still have so much more to do, especially in our efforts for BAME patients, whose chances of finding a donor are monumentally worse than those of white, Northern European heritage. He also spoke about how the NHS is always at the cutting edge of transplant science, and what is being done with CAR-T cell therapy. Then he introduced Simon. He spoke about his mother’s efforts to find him a donor, to save his life, and to save her and other parents from the agony of losing a child when their death is preventable. He also talked about how magnificent the NHS has been in continuing his care after transplant, right up to this day, because the transplant is not the end. But hopefully it will be better for our final speaker, Farida Dedes. She was a student at Brunel, and became ill at the end of her first year. She was diagnosed with ALL, and was told she was headed straight for transplant, if they could only find her a donor. They really struggled, because she is black, and eventually she was told that they were going to give up searching, because nobody could be found. However, a month later, a donor popped up in Brazil. Amazingly, she donated her cells, and Farida had a successful transplant. She is now back at university, and will become president of the Brunel Marrow group next year, with the aim of really highlighting the necessity of adding more BAME donors to the register, because she knows first hand how devastating it is to be told one can’t be found.

I found her afterwards, because I identified with a lot of her story (mainly the sudden diagnosis and immediately living in hospital, and the need for transplant straight away) and we talked about having your life kind of ripped from under you like that. We were joined by Max Tami, the MP’s son, who also had leukaemia, but I know has also had issues afterwards. I think it was good for him to meet some people who understand.

We were then warned about the fact that it was nearly time to go (the people at Westminster are really arsey about you leaving the room literally as soon as the event has finished), so I made a move to say goodbye to people. I made sure I hugged Manos again, and got a photo with Simon to document our historic meeting. Then we started getting kicked out, except I couldn’t leave and nor could Simon (from Anthony Nolan) because he had a big thing on wheels that needed ramps too. They dicked about for ages, and only after half an hour of us getting frustrated, did the man in charge finally decide to get useful, mainly because I think he was worried we would wander off to places we weren’t allowed.

By that time, traffic was pretty bad, and I knew it was going to be impossible to get a taxi nearby anyway, so I started heading up Whitehall with the intention of finding a reasonable place to get a Hallo from. However, everywhere was too busy/inaccessible, and the route back to Euston was fairly straightforward, so I ended up just bombing my way back there, straight up Charing Cross Road, then right onto Euston Road, arriving at the station just in time for the platform announcement. I quickly bought a drink, a cookie and a copy of New Statesman, then met the assistance chap at the train and was on my way home.

The 19th of July.

That has been nowhere near as interesting as yesterday. I gave myself a little lie-in, although I am still tired this evening, got dressed, had coffee, breakfast. I started writing about yesterday, such has taken me all day, on and off.

I took a break so we could wash my hair, and I had to get changed, because the dress I had put on its currently too small. I’ve put on a couple of inches around my waist and I would rather they were not there, so I’ll have to get back into the gym.

We had lunch and caught up with Love Island (what a massive hypocrite Dr. Alex is), then Mommy went to Grandma’s and I sat with Dolly, trying to concentrate so I could finish writing. She was actually out this afternoon, sitting on the windowsill, so I occasionally chatted to her, and gave her some Dreamies.

When Mommy got back, she found some wet stuff at the bottom of the stairs, so she went up to investigate, and found a magpie freaking out in Christine’s bedroom, shitting everywhere. Thankfully she was able to get it out of the window without getting injured. Excitement, but a visitor we could have gone without.

When that was over, I went back to Dolly, and I got to stroke her! Finally reached that stage again. 

 

The 16th of July.

Early start for liver clinic. A very straightforward one – we got an excellent parking space, I had my blood pressure done, watched about ten minutes of tv, then I got called through. James wasn’t there today, so I saw a different lady. I don’t really have any concerns, and I answered all her questions in a satisfactory fashion, so I was in and out in no time. Had to have some bloods done, and remarkably, they got a vein the first time! I was very impressed.

This afternoon, I had to put my feet up against the wall again (I don’t know why this is so bad at the moment; maybe it’s the heat?) for an hour, then I had appointments at the dentist and hygienist. I do feel slightly smug after going because my gum score is always zero and they congratulate me on my brushing and flossing technique. Gotta have that good oral hygiene.

I got the information of the potential adopter of Dolly. However, I tried both the phone numbers provided, and one was out of service, and the other went through to a man who didn’t know what I was talking about. Not promising! I have emailed the woman, and we’ll see if she gets back to me.

The 17th of July.

Ugh, bureaucracy. I spent my morning ringing various phone numbers of government agencies, trying to sort out the renewal of my blue badge. I sent off the application yesterday when I got the reminder, but I knew they’d request extra documents because the website format doesn’t allow you to send enough. However, they want a letter that does exist – one dated in the last year that days how many points I get for PIP. I don’t have that because I haven’t been reassessed in that time as I’m entitled to it indefinitely.

First, I spoke to the Blue Badge people, who just won’t accept any other letters no matter how well I argued my case. So I had to ring the DWP to get an up to date proof of eligibility letter, and there are SO MANY PHONE NUMBERS. The number the Blue Badge people put in the email is wrong, the one on the last letter from the DWP is wrong, then I think I tried two more numbers and sat on hold for ten minutes before I spoke to someone. Thankfully, they were helpful, and my letter should be with me in 3-5 working days!

This afternoon, Daddy and I sent to see The Incredibles 2. That was good fun. I thought the twist was pretty obvious, but that didn’t dampen my enjoyment. The scene with Jack-Jack and the raccoon is very good, and Edna Mold is still the best. I highly recommend it.

Happily, the lady I emailed last night got back to me with a correct phone number, so I’m going to call her this evening.

The 14th of July.

Well, this morning was ghastly, but the afternoon was a joy.

We drove down to Ashford so I could visit Robyn, Stuart, Herbie and Ned, while Mommy and Daddy found a way to entertain themselves. The morning was so terrible because despite setting off before we even planned to, we arrived an hour and a half late. There was an accident on the M25, then the sat nav lady took us off to god knows where and we ended up going into and out of London. By the time we got there, I had gone through the full gamut of emotions. Importantly, the murderous rage had passed.

I love them. I got to distribute all my crocheted gifts, and they are going to try their best to stop the blanket from getting dribbled on. It actually goes very well with some of their furniture. I got to squidge Ned, and Herbie gave me some hugs when he wasn’t being a puppy or hiding in the cat house. We had lunch, then settled down to watch Despicable Me 3 (Herbie’s choice) which gave us a chance to talk because Herbie was transfixed. I asked the questions I had prepared for the podcast recording that got scuppered, so look out for that quality content on The Naughty Step.

I was forced to leave about half six, but next time they are going to come up to Birmingham instead. And it won’t be another two years!

The 15th of July.

Too warm to do much of anything today. It was just nice to be able to take the sleeve off last night, although because of the lack of sensation, it feels weirdly tickly whenever the sheet touches it. So I spent my morning writing about yesterday, not watching Sunday Brunch because Pixie Lott is, quite frankly, unbearable.

After lunch, I went upstairs to stick my feet up against the wall again (my feet got puffy during all of the driving yesterday) for a bit before the tennis started. Firmly on the side of Djokovic today – if I can’t have a storybook ending for Serena, I want it for him. Anderson has a weird dog that I don’t like.

While I watched, I typed up a late blog post, then Shaki arrived during the second set to pick up some of the donations from the cattery that we’ve been playing host to. Inevitably, she ended up staying for about an hour, seeing if Dolly might emerge but she refused. She did say that apparently there is someone who has registered interest in her so I’ll talk to them and hope to sweet baby Jesus that they are reasonable.

Djokovic won, then I found myself watching the World Cup final. Here, I wanted France to win, because when Croatia beat us they behaved like bastards. Very pleased, and now I will return to my usual state if feeling ambivalent about the majority of sport.

 

The 12th of July.

Well, the news is depressing. It is all about Trump’s visit and I would rather avoid. Bleugh.

This morning, I did a blog post, then I was at the chiro. Had to be selective about what Trine could do because I am still a bit delicate. My neck was the main problem anyway; I think it did not get on with the holiday bed.

When we got back, we changed my sleeve and took the opportunity to wash my hair. My whole arm is turning a lovely shade of yellowy-green.

After lunch, I sat with Dolly all afternoon watching NowTV. Well, I watched, she ignored me and stayed under the chair. I watched the first episode of Sharp Objects, and why Amy Adams has not won an Oscar yet is beyond me. And the girl they have cast to play her younger self is spot on. I also saw the pilot of Twin Peaks because it seemed like something I would enjoy and I thought it was of a similar kind of vibe. I am heavily into Lara Flynn Boyle’s hair. Not so much the fashion.

Got to take the dressings off tomorrow. That’s going to be a pretty picture.

The 13th of July.

Last night was the first time that the sleeve has really bothered me since I got home. I kind of had to just keep squeezing it until it stopped itching. I had all the dressings taken off today in follow up clinic, just so the wounds could all be checked and cleaned. They all look good, not really even much to clean. I have to start using this ointment three times a day which doesn’t really get absorbed by the skin, so when the sleeve goes back on, it soaks through a little which is not a desirable look.

This afternoon, I caught up with the most recent Agents of S.H.I.E.L.D (Talbot gone totally Trump), then I went to sit with Dolly and watch some more of Twin Peaks. She remained under the chair, which I think was a smart move because it is the most batshit thing I have ever seen. The scene with the dancing dwarf was really quite insane. Plus I keep having to go to imdb to work out where I know people from, like Laura Palmer is Ellie from One Tree Hill, and Shelley is Alice Cooper from Riverdale. I’m such a millenial.

The 10th of July.

Oooh I am very itchy. Apparently it is one of the many weird sensations one can get after liposuction so I took an antihistamine to try to counter it but it wasn’t really helpful.

I was able to take the sleeve off for a couple of hours this morning, which was very nice. The elbow and wrist have been squeezed particularly hard. Plus my hand is holding a lot of the fluid still; I still ask Fiona about that on Friday if it’s still there.

I spent my afternoon watching the tennis, crocheting and periodically visiting Dolly to see if she could be persuaded to eat anything, because she hasn’t since yesterday evening. I would go in, she’d ignore the food, but then she’d cry when I left. She has just eaten a small amount of fish, but then wandered off to look out of the window and howl. I do not understand this bloody cat.

The 11th of July.

The itchiness has calmed down today, thankfully. Instead, the issue of the day has been hand swelling – the garment forces some of the fluid into my hand, and it felt enormous this morning. I tried putting the compression glove on, but that just seemed to cut off the circulation to my fingers. Not ideal. Eventually I took the sleeve off for an hour this afternoon, just to give it a rest. My fingers are not shiny like they were earlier so it’s helped a bit.

My day has been remarkably uninteresting. I actually spent pretty much my whole afternoon lying on my bed with my feet up against the wall, trying to get some of the fluid that appears to have pooled in my feet to drain. I think I may have even fallen asleep. But after a few hours, it was too much pressure on my back so I came back downstairs. Sat with Dolly for a little bit because she is back to her habit of crying all the time. She does it whether we’re there or not, but I feel bad if I ignore her. Stupid weird kitty.

The 8th of July.

So, so tired.

I didn’t fall asleep until about 3 this morning because my arm hurt and I couldn’t get in a comfortable position and the sheets were a mess. Then I was woken up at 7 for my breakfast of toast, marmalade and coffee. I asked the nurses for my Tramadol, because the codeine did fuck all, and found that helped enough for me to be able to bend my arm, brush my teeth and sort out my bed a bit.

Anne had said I could go without seeing her, but I wanted to see what she thought of my arm today and find out what we were to do regarding dressings. She appeared at quarter to twelve, with Mommy and the nurse, which was excellent timing. She took off the bandages, peeled the sleeve down, then removed all the Mepores, trying not to tear my skin. It looks pretty amazing! It looks best immediately post-surgery, then the swelling will go up, but both arms looked nearly identical! And all the compression has alleviated some of the bruising. The nurse gave all the wounds that needed it a clean, then applied new dressings before putting a new sleeve on. So everything is good! I see Fiona the nurse next week, Julie in six weeks, and Anne in September. Then we just had to wait for pharmacy to send up my TTOs and it doesn’t seem to matter if it’s an NHS or a private hospital, they still move at a glacial pace.

I almost match. I’m so happy.

The 9th of July.

Sleep was good. I lay on top of the sheet with my arm on a pillow and managed to stay there until a reasonable time. The arm was less painful, so I think that helped.

I have done very little today. This morning, we watched Christine mace-bear at a graduation ceremony over live stream, then we caught up on the Taskmaster finale that we missed while we were away.

Sarah came back with Dolly, who despite having a lovely time at the cattery, scratched Sarah and wet herself when it came to having to get in the carrier. Poor thing. She has gone straight under the chair.

We had lunch, then I sat with Dolly all afternoon, crocheting and watching Zootropolis. She has not emerged, just like Boris. Suddenly my trip to the Houses of Parliament on the 18th has become even more interesting. 

The 6th of July.

Ah, home again, where the water from the tap tastes good.

Up very early because we left before half past eight. First, we drove to Ipswich to drop off Christine at the station there, then we continued for three and a half hours to home. My back was horrific.

We got here just before one, so we had time to pee and have a drink before Mommy and I went to The Spire for my cross-match. The receptionist sent me to the wrong place, so we wasted twenty minutes waiting for someone who wasn’t coming. Thankfully, a member of staff was helpful, and suddenly everything happened very quickly. I went to the right place, and the woman in charge came to apologise profusely and make sure shit got done. A nurse came to get me, and she’d bleeped a doctor to bleed me. He had to have two goes, but he got what we needed. On the way out, we were stopped by the manager again, who qoffered us free coffee and cake! We said yes please, because we hadn’t eaten since breakfast, and it was delicious.

We stopped at M&S on the way home to buy some dinner, then this afternoon, I have had my first Hibiscrub shower (I have to have another one in the morning) and a hairwash. Having to blow dry one’s hair in this weather is awful.

I do hope I sleep tonight.

The 7th of July.

Liposuction day!

I am exhausted, swollen, oozy and sore.

I got up early to try and drink loads of water before I had to be nil by mouth at 11. We got to The Spire at about twenty past, and someone from the ward came to get me and take me to my room. It was a slightly nicer version of an NHS cubicle room – pretty much the same, but I could lock my cupboard and I had a wardrobe. Fancy.

A nurse came to admit me and do blood pressure, sats and get a urine sample. Then they sent the doctor I saw yesterday to try and get some more blood from me because they were unhappy with the group and save from then. Unfortunately, my veins did not want to cooperate, and after two tries he decided he would let the anaesthetist try in theatre when they put my cannula in.

The anaesthetist himself, Gerwyn, came to see me next and we talked about all the boxes I had ticked on the form (he thinks I probably did break the record). We discussed the regional block, the risks, what else we might need to do. It all sounded very promising so that was grand and off he went. Then we just had to wait for Anne!

She came just after two o’clock and drew all over my arm to show where she was going to go in (basically everywhere), took some pictures for comparison, then I signed the consent form and it was time to go!

In the anaesthetic room, Gerwyn had two attempts at the cannula, unfortunately settling on the vein in the underside of my wrist, although he did put some local anaesthetic in first so it wasn’t as uncomfortable. Couldn’t get any blood but it was unlikely that I’d need a transfusion so nevermind. Then he ultrasounded around my collarbone to find the nerves he wanted to use to make my arm numb. We had to wait for it to kick in, then he started spraying me with the cold spray and poking me with a blunt needle to see what I could feel. Turns out a brachial block can’t numb the inside of the upper arm or the back of it, so they would try and get some local infiltration in theatre.

When we went in, I asked if we were going to do a Who, which they all found very amusing because nobody had ever asked that before, then they asked if I would lead it, so I did! I was prepped, made all clean, some leg massagers were attached to my calves to prevent me from getting another DVT, and a screen was erected in front of my face to keep the sterile and non-sterile areas separate. That was annoying, because I had wanted to watch. However, they asked if I wanted any music to entertain me, so I requested Death Cab. They were unsure until they heard it, and then they realised they are lovely so we just listened to them for two hours while Anne hoovered all the extra fat out of my arm. The noise is like a combination of an electric toothbrush and a drill. And in the places where it wasn’t numb and the local anaesthetic wasn’t reaching, it felt like she was shoving a long drill bit in and out of my arm. It was painful enough to get past just clenching my jaw – I screwed up my face a bit and even emitted an “Ow.” That means it is bad. If you are planning on having liposuction ever, I would recommend making sure you can be entirely numb, and if you can’t, be asleep. It’s not pleasant. When she was finished, all the little holes got stitched up, then covered in Mepore dressings. My entire arm is Mepore. Then, they had to try to get a compression garment over the top without messing up all the dressings. I had a quick look, and she was not kidding about the bruising. It’s rather dramatic. That was tricky, but they did a reasonable job. Blood and fluid has oozed out through it constantly since then, and it’s supposed to carry on until tomorrow evening. I’m not supposed to change the dressings for ten days, but I can’t see how they’ll still be viable even after tomorrow. I’ll ask Anne when she comes round in the morning.

When it was all done, at about quarter to five, I was taken to recovery, where we saw the very end of the football (It’s coming home!) and everybody told me how well I’d done. Anne said it went really well, and she removed a whole litre of fat. A litre! Even she didn’t expect there to be that much. After about half an hour and a much needed glass of water, I was taken back to the ward.

Here, I have had to do everything one handed, because my right arm was useless until about 9. I can flop it about, like Harry Potter does when Gilderoy Lockhart magics away his bones. I managed to get my phone out of the cupboard and ring Mommy, so she could come and see me because she wanted to. Then I rang Christine to tell her how it had gone, because it was easier than texting. I was brought the sandwich I’d ordered before surgery and some coffee, which happily did not taste like garbage. I was so hungry but it’s hard to eat an egg mayo sandwich with only one hand. Mommy arrived, I told her all that had happened, and she helped me sort out the sheets and shuffle myself up the bed. She left at about twenty past seven, and I lay and waited for my arm to come back to me, sending her a video every time the mobility moved up the arm a bit. By 9, I had regained most of the movement and sensation. It’s got its cons though – now I can feel again, I’m aware that it is quite achy. Will ask the nurses for some codeine, see if that helps. Then I will try to go to sleep. Not feeling optimistic.