Eight years that I would not have had if the current rules had been in place. Patients will be denied the chance to have the same based purely on some bad luck, and that is fucked up.Continue Reading...
Archives For July 2016
Do the right thing Jeremy. We don’t deserve to die.Continue Reading...
The 27th of July.
Woke up at stupid time AGAIN. I am sure it is the fault of the Tramadol even though it is supposed Fri have the opposite effect if anything. I would mind less if it was actually doing anything for the pain but I am in just as much misery as before, even more so today because the tops of my legs hurt. For crying out loud.
This morning I had an appointment at the Women’s to see a nurse about the problems I have being examined. Apparently, radiotherapy can cause a condition called vaginismus. Yeah, I’m going to talk about my vagina, if you are upset about that then skip to the next paragraph. People don’t talk about this enough, there is no information, so I’m doing it. It’s very painful and annoying but it can be treated, hooray! I have been prescribed these things called vaginal dilators. There are five sizes, the largest of which is apparently terrifying and I will never have to use it. I start with the smallest, obviously, and I have to use it every day until it is easy to insert, then move on to the next size up. I will require lots and lots of pillows, a distraction and a lock on my bedroom door. It’s going to be interesting.
While I was seeing her, Mommy went to see the pharmacist in haematology clinic (they’re on the same site) to ask how long we should wait before deciding the Tramadol isn’t working, as the doctor had said it would take a few days. It turns out she didn’t know what she was talking about because I should have felt relief within 30-60 minutes of taking the first dose. Obviously, that has not happened. My consultant was not around to prescribe more or something stronger, so we are ringing the GP at 8am to get an appointment and make them write something up for me. I can’t carry on like this.
Before going home, we went into town again to get my Pandora charm for Saturday because we won’t get another chance before then. We got the diagnosis anniversary one too, because it’s only a few weeks away anyway. They just have to stay in the boxes until the days themselves.
After lunch, Mommy went to see Grandma, and I set about watching more episodes of Stranger Things (only three left!) and writing up a monster blog post from Saturday and Sunday. It took all afternoon with the uploading of the photos too, then when I’d finally got it posted, something malfunctioned and the entire thing got deleted. Many obscenities were uttered.
I went to give the kittens a stroke to lower my blood pressure, then did it all over again. I have a problem with the cats now, because they are all my friends, it means that they all want to be petted simultaneously and I do not have enough hands! Nettie is the worst – if anyone is getting attention, she has to get involved. So jealous.
The 28th of July.
Yep, I am no longer sleeping past six am it seems. That’s fine, it just means I’ll get through more coffee and Netflix will definitely be value for money for a while. This morning, I finished off Stranger Things. It was so good.
I got a GP appointment today for 11.40, because we rang up at 8. I had the chiro first, and obviously we talked about what’s going on with my back. It seems that they know Mr. Harland very well; they refer patients to each other. Trine said that if she were having spinal surgery, she would want him to do it. She also explained what actual surgery he might do, which is really good to know. One of the receptionists is training to be a doctor, and she was in surgery with him just the other week! I am feeling very confident about seeing him now.
Straight to the GP who was on time, astonishingly. It was a lady I don’t know, and it didn’t go well. She hadn’t bothered to even look at my notes before seeing me. I got her to sort out the vaginal dilators, then we talked pain relief. She wouldn’t give me opiates. I have to take gabapentin in combination with the tramadol and regular paracetamol. I am not expecting it to work. I will try it and if/when it doesn’t work, I’m going back to hospital and getting Ram to write me up oxycontin or morphine. When we left I was so angry, I could just feel the tears in my face and couldn’t speak for rage.
I calmed down after an hour at home, had lunch, and this afternoon my friend Anna came round. We had coffee and cake and lots of chat. Memories from school, of Miss Jackson, the deaths of our respective pets (R.I.P. Polo and Oscar), all the crap that’s going on with my body. She is a teacher, so we discussed that a lot. Secondary school, which I think is probably harder than primary. All those hormones. She said some very disturbing things about the way girls talk to each other, it sounds dreadful. They have no problem calling each other slags, they are of the opinion that if you are drunk or in a short skirt, you are asking to be raped. It is horrifying. They need Anna because they are not learning about feminism from anyone else.
She left just after half four, and shortly after, a lady called Tracy arrived with her mother to view Nettie. Sheila rang me about it while I was in the changing room at the chiro, so I had to cut her off, but she emailed me the details and I set up the meeting. They are lovely people, very knowledgeable about cats and dogs – she has a boxer but she’s very timid and obviously wants something to mother. Nettie will absolutely fine with that; she is will be the alpha. Everyone was very well-behaved actually, But Nettie is who she wanted and Nettie wanted her. Perfect match. She’ll be picking her up in the morning!
Keep sharing and ask your friends to! Jeremy Hunt needs to see this.
The 25th of July.
Well, I have some drugs. Not the ones I hoped for, but I have to try these first before I can get anything stronger.
We rang up first thing this morning, and when Jo, the clinical nurse specialist we spoke to, rang back, she said to come in at 1pm to see a doctor. I then kept writing about Saturday until 11, when we went into town before going to hospital.
I desperately needed to replace the ballet pumps I’ve been wearing – they are nearly ten years old and literally falling to bits. Topshop didn’t have a pair in my size, so I went to New Look, where I ended up getting the same ones in three different colours. Sorry Phillip Green, none of my cash for you. I also picked up some trivial stuff like moisturiser and birthday cards, then lunch from Pret which we ate in the QE car park.
Up on 621, I waited over an hour for the doctor to appear. That was fine because I’d taken my diary so I could finish my writing. I got that done, then twiddled my thumbs and listened to music until I was called.
We had a chat, and she did some poking although to be honest that doesn’t really make it any more obvious where the pain is; it’s not muscular so it’s not tender. Just constant ache, made worse when I move at all. The strongest drugs she could prescribe were slow release double strength Tramadol, so I have to take that twice a day for a few days and see if it makes a difference. I’m honestly not expecting it to, but we’ll see.
We had to wait in pharmacy for ages because there was a palaver over the fact that it’s a controlled drug, but we were able to leave at about half three. When we got home, the kittens were ravenous, practically chewing my arm off. I did apologise profusely but they don’t care. They got food; they’re happy.
Tonight, I’m trying to get the video I made yesterday seen. It’s on YouTube, Facebook, Twitter and instagram, and I am begging everyone to share it with their followers. I want Jeremy Hunt to explain why he’s arbitrarily chosen this group of people who apparently deserve to die. Why he’s basing this decision on research that is 20 years old and has no plans to use current data or get any more, despite us constantly improving the science behind the transplants. Why he feels prosthetic penises are more important than the lives of people with cancer. What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has. It is a privilege to be the health secretary yet he treats it like a game, and he gets to play God.
The 26th of July.
Terrible night. I barely slept at all for no discernible reason. The pain wasn’t unbearable for once, I wasn’t too hot, my brain just wouldn’t go to sleep. In the end, I started watching Stranger Things on Netflix and I am gripped. Loving it so far.
I got up just before nine, and washed my hair for the first time since it was dyed. I wouldn’t mention it, but it had a slightly alarming effect. Because the colour is so vibrant, the water and shampoo made the dye run, and when I had dried my hair, Mommy noticed that most of the back of my neck had been stained pink. I was really glad James had let me in on the tip of milk being a great stain remover. Worked like a charm!
My day has been talking and writing. I got an email from a journalist from the Birmingham Mail wanting to talk about my video, excellent! Before I got back to her, I spoke to Simon at Anthony Nolan to make sure I had all the points I needed to cover. The writer, Anuja, rang me as soon as I replied to her, so then I talked to her and that should be in the paper very soon!
After lunch, I spent most of my afternoon uploading photos from the games on Saturday and writing because I am behind again. I’m not quite finished because I then got another interview request but it was email questions, so I stopped the blog-writing to answer them all in probably far too many words. I suspect I will be edited considerably.
I am so tired. Sleep tonight please.
The video is here, please watch it and share it with your friends.
The 23rd of July.
Wow I am in a lot of pain. A ridiculous amount. I cannot move without it and even sitting still it’s there, just not quite as excruciating. But that is because of all I’ve done (or not done) today so let’s rewind to the beginning.
Meant to get up at five but woke an hour before that. Not ideal but OH WELL, it meant I had extra time to have coffee and not get stressed. Always glad for that.
We had an interesting start in the assistance office; a guy came in and was very annoyed because the station staff wouldn’t let him through the barriers because he didn’t have a ticket. This was because he had been out all night and lost his friends, his phone and his wallet. All he had was his keys. He was obviously still a bit drunk because he couldn’t grasp the concept of having to dial 91 before the phone number he wanted to get an outside line when trying to call his grandparents to help him. The woman dealing with him had the absolute patience of a saint. The grandparents didn’t seem able to come to his aid, and he was getting more and more wound up, so in the end, I took a tenner from my purse and just gave it to him so he could buy himself a ticket. He was only going to Lichfield so it wasn’t going to cost him that much but it was fine. He then wouldn’t leave until I gave him some details so he could pay me back. I scribbled down my name and number but I am not expecting him to contact me. I don’t suppose he’ll even remember what they’re for. I just hope he got home safe.
Our journey was not particularly exciting. On the train, read the paper, listened to the Ghostbusters soundtrack. Rhythm of the Night has become my jam since seeing the film. Just before we arrived, a girl was about to go to the toilet, which I am always sat next to, being in the disabled space, and she suddenly said my name. I looked round and it was Charlotte who I met when our TCT group went to the Royal Albert Hall for the comedy night a few years ago. She has a brain tumour, but from what she said, it seems to be relatively dormant. She’s getting married, so I got to see her engagement ring and it is gorgeous. She and her fiancé were down for an exhibition. Must arrange to meet up with her; it’s been far too long. Euston assistance was not so good this time – a Virgin chap got the ramp for me and the man appeared as we were leaving. He looked pretty irked by the fact that I was off the train without him but we waited the five minutes that he’s supposed to arrive within so it is not my problem. Be on time mate.
We went up the road to St. Pancras which was full to bursting of what seemed to be school parties with suitcases, so we didn’t hang around and went straight to platform 12 to get on a bullet train to Stratford International. There was some fun lift Tetris with us and two people with bicycles, but we manoeuvred ourselves successfully. We folded up the chair once on the train and Mommy stayed with it in the vestibule, and I sat with a family from Yorkshire who were going to the games too. We were lucky to get on when we did, because it filled up to the point of sardinedom. Mmm, sweaty. I was glad our trip was only going to take 6 minutes.
When we arrived at Stratford, we went over to Westfield to get ourselves some lunch. Waitrose was straight ahead, so we picked up sandwiches from there, then spotted a Bread Ahead stand! DOUGHNUTS. They had about four left, so I bought a chocolate one for me and a crème caramel one for Christine. We came across a horde of people going to the Olympic Park, so we waited out of the way of them to meet up with her. While we stood outside John Lewis, Mommy suddenly started hitting me on the arm. I didn’t know what I’d done wrong, then realised it was out of excitement because Michael Johnson (four-time gold medallist and very famous sprinter/now presenter of athletics) had just walked past and she is a massive fan. She was like me when I saw Adele in Liberty.
Christine emerged from the crowd, and we joined the mass of bodies heading for the stadium. I’d forgotten how far it is. Past the Orbit and it’s terrifying-looking slide, a group of people surrounding Gabby Logan, taking photos of her doing a piece to camera (weird), and we finally found our gate.
We were in wheelchair position seats, and had a really great view over the whole stadium. We were at the finish end, facing the line itself so it was perfect for taking photos. We were also in the shade and it stayed that way all day, thankfully, as we could see the people on the opposite side in the sunshine just baking, fanning themselves all afternoon.
We began with the para-athletic events, and the day got off to a great start with Richard Whitehead breaking his own world record! Unfortunately neither Jonnie Peacock nor David Weir won their races, but hopefully they do at the Paralympics, when it actually matters. Libby Clegg got a new world record too, with a guide she’s only just started running with.
There was a half hour break before the able-bodied athletes came in, so we ate our lunches and took the opportunity to use the toilets which were very close by. To kick it off, some of the big names were brought out on the backs of trucks, being driven around the track with flames being sent up to emphasise how exciting it was.
I won’t list all the events we saw – there are photos. We witnessed two false starts, both by team GB athletes which was very annoying, for them and us! Poor Martin Rooney. Jess Ennis-Hill and KJT were long-jumping away, and I’m hoping I got some decent shots of them. The men’s relay was a huge success, with the GB teams taking first and second place. Admittedly the Jamaicans weren’t there but still, it bodes well for Rio.
The last and main event was the 5000m with Mo Farah. The first twelve-thirteen minutes are not particularly thrilling, but for the last couple of laps the crowd got louder and louder, and for the final one, everyone was on their feet, clapping and yelling at Mo to win. It was clear that he would, but to actually witness it with my own eyes, to be a part of that moment was pretty special. It was nice to feel great about this country for a minute.
Leaving was slow, to say the least. There was only one way to go, with everyone being herded like sheep in the same direction by stewards. There were even people with stop/go lollipops which everyone obeyed without question. Only in Britain would that system work. At several points we had to cut across the flow of traffic to get to step-free access, but generally most people were very accommodating. One of the great novelties of being in a wheelchair is that people will apologise to you and even break into a run for absolutely no reason.
We eventually got to the station, where there was a very long queue for trains back to London. However, a member of staff came up to us and said we could go straight to the front. Another wheelchair perk. We went down to the platform where a train was waiting and in no time at all we were away again!
At the other end, we made our return to Euston where we bought some food and went to see the assistance people. We had open return tickets back (even though I’m certain I booked a specific train but that’s what the machine printed out so whatever, I’m not going to quarrel with it) so I wasn’t sure if they’d be able to help us, but we were sent straight to a platform. However, when we got there, we couldn’t get on the train because they hadn’t been able to couple the carriages. In the end it got fixed though, we got on in coach G and were home an hour earlier than planned. Smashing.
The 24th of July.
Agony. Agony all day. I can’t stand up straight. Not even in an “I can but it hurts” kind of way, in a my body physically will not do it kind of way. I can’t lie flat on my back without putting my knees up. I don’t walk, I waddle. It hurts all the time. It feels like my pelvis is literally crumbling inside me. Hospital tomorrow; I need some drugs.
This morning I was writing, and this afternoon, Daddy and I went to see Star Trek Beyond. Every scene with Chekov broke my heart, and there’s a lot of them. It’s so tragic. Plus there’s a whole thread about Ambassador Spock/Leonard Nimoy’s death, so a lot of it is pretty bleak. There are comedic moments too, but I’d expect nothing less with Simon Pegg as a writer. Of course there are flaws but I wasn’t expecting it to be amazing, just an entertaining couple of hours and a distraction from the pain, which it was.
When we got back, I decided I wanted to make a video, to ask Jeremy Hunt why we can’t afford second stem cell transplants now. I didn’t feel like writing was enough – I want people to hear how passionate I am about this, to see me, and a blog post won’t quite do that. First I needed to plan what I was going to say, then record it and not hate it. It took a while. I managed to write what I needed fairly easily, it was the delivery that was tricky. Looking at my notes and the camera was not easy. I had to stop so I could have dinner, then I was straight back upstairs. I finally got a set up that worked, then I just had to keep recording myself until I got it right. By ten to nine it was done, and I’ve sent it to Anthony Nolan before I share it. It needs to be done right to have the impact I want. I’m hoping it’s going to be big. I need it to be. I will do anything to get this reversed, even if it requires being on film and hearing myself out loud, which I cannot stand. Please watch it and share it on Twitter, Facebook, anywhere you want. Get all your friends and watch it and ask them to spread it around too. Click here to email your MP with a letter asking them to write to Jeremy Hunt to ask him to intervene and change this decision.
The 21st of July.
Today has been so much nicer. It is warm enough to not have to wear a cardigan but not so warm that I’m incapable of breathing. This is what I would like all the time please.
I woke up when my alarm went off, but then went back to sleep for half an hour. The kittens are super hungry when I got their breakfast to them. This morning I did a blog post (I should stop putting that in. You know when I do a blog post. They’re here.) and had some more wool delivered. It was on sale, and I have plans for it – some green, glittery wool will make a Christmas hat, and some pink baby wool is for a baby blanket.
This afternoon, I have done much crocheting, not on the projects mentioned above though. Poppy the flowerpot cat, from the same pattern as the teacup cat I posted. Speaking of cats, we had a visit from Oscar! He actually came into the house and was very interested in smelling the doors the kittens are behind, so I had to move him on from there. We had a lovely time in the garden though. He’s so big now! Just a huge ball of foofiness.
Following him around with my phone was really painful. I swear my back is getting worse. I can’t wait for these appointments to come through because I can barely stand without support.
The 22nd of July.
I am super sleepy. I took 100mg of Tramadol earlier because the pain in my back was off the charts. I have been in agony for most of the day. Moving around this morning was ghastly. Anyway, the Tramadol did not help, not even in a happy-making way, but now it is leaving my system and I’m drowsy.
Another quiet day. Trying more to move too much because it hurts, and I can’t even crochet because my hand keeps cramping up. Not helpful! Only real activity today has been taking the kittens to the vet for their second vaccinations. We managed to get four in pretty easily, but then Nadia was under the chair. We were able to tempt her out with Dreamies, but she was still not in a position for us to pick her up. She slowly got through the trail we had laid out and we were able to sneak up on her. She was not thrilled but we got her in.
At the vet, a lady came out with two dogs, one of whom was very sleepy, obviously after an anaesthetic. Then it was our turn, and they were all fairly well-behaved, except for Nadia who held onto the carrier for dear life, daft thing. No concerns about anyone, they’ve all put on weight, although it would be good if Nova could put on some more. She’s only 50g more than Nettie, who is 5 weeks younger than her, so that shows how small she is. The rest are 400-500g heavier.
I am thinking of my followers and friends in Germany tonight. It is so sad and nonsensical. You are loved.
The 19th of July.
It is too hot for anything other than basic respiration. I have been outside a couple of times just to see what it was like. Thirty seconds was enough. I can barely breathe.
I was up early because I was at Black Sheep at half nine. I started having a worry that I’d got my appointment wrong because I hadn’t had a text message, but there was no point in ringing because I was the first appointment, so we just went and if I was wrong then I’d just come back to the car. However, I was right, and I just hadn’t had a text because their computer system is throwing a wobbly.
James and I had a chat and we went much more vibrant because I want it to last longer, but we don’t know quite what will happen because my base is so light. We shall see! Mainly purple with pink fringe and pink back. It is not subtle.
Went to the gym on the way home so I could take in my letter from Andy Toogood so my membership can be paused for free. Vlad tried to be funny about my hair change and asked if I’d had my glasses painted to match. I flatly shut those down. Do not make jokes about my appearance. I will not laugh.
This afternoon I have stayed inside, drinking water from the fridge and updating my blog. Tomorrow I can have a day off!
The 20th of July.
I really don’t want to complain about the weather, especially when I am so often freezing, but it is literally difficult to breathe and it appears that nowhere in our house is cool.
I managed to get to sleep last night without too much trouble, surprisingly. I swear, the last time I was this hot was in Majorca, when I had leukaemia and didn’t know. Not great memories. At least when we were there, we had a pool I could cool off in.
This morning I got to have a break from writing. I, like the kittens, have flooped. We have all wilted. I have been pouring extra water on their food to make sure they’re not getting dehydrated.
I got a lovely card in the post today from Anthony Nolan to thank me for last week. Bless them. Tomorrow they deliver the letter about 2nd transplants to the Department of Health, and I so wish I was going too! Then again, if I were to speak to anyone, I would have to work really hard to not get too angry. Probably best I am not there.