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The 7th of May.

The eyes are less sleepy today, and that is welcome, but what is less so is that it has been painful to have my left eye open since I woke up, no matter how many eye drops I put in.

It’s been a day of mainly blog admin, so a short entry today. This morning, I wrote about yesterday while watching Sunday Brunch, occasionally muting it when Pixie Lott was on (I’m sorry but I just can’t stand her).

After lunch, I finished typing up the six blog posts, and they are scheduled to be published over the next several hours. While I did this, I watched four more episodes of 13 Reasons Why. Now I have four left, and I don’t know if I can be arsed to watch them or if I’ll just read what happens. I want to know, but the show is kind of a drag.

I have been thinking more about my arm. Of course I have, I think about it all the time. I wonder if we are being somewhat narrow-minded about the cause? Is there anything else that could be the reason behind the swelling? The only thing I can come up with is lymphedema, but if it is that, surely the compression garment would be having some kind of effect? None of it makes any sense.

The 8th of May.

I am desperate to have a nap again and my level of pain is still the same. Probably going to have to double the pregablin I think, so I will get even sleepier. But maybe that will wear off and the pain will get better.

The only interesting thing that happened today was that I had my appointment with Mr. Titley, the plastic surgeon that Miss Byrom had written to about me. First of all, I had to tell him my entire history, and there’s so many things to remember now. I’m going to have to write down exactly what I have been through and when in a relatively concise format. I almost forgot about the venoplasties, despite my arm being literally right in front of me.

Anyway. We then moved on to why I was actually there. I ran through my history with the Women’s and Miss Byrom and what we have been through so far. He talked to me about what he has done for Miss Byrom before, which is not like what I will probably need, so I may well need some kind of bespoke procedure. Typical of me. However, he can’t offer me any particular treatment until he knows exactly what he is dealing with, so I will need to be examined under general anaesthetic. He needs to talk to his anaesthetist who will need to talk to Dr. Thompson, then I’ll probably get a date for another ambulatory care day.

He asked what I’d like to get out of this, and frankly I just want one part of my body to do its fucking job like it used to. If someone were mad enough to want to date me, I don’t want yet another reason to put them off. Considering the fact that most men ask if I can still have sex when they find out about my disability, I’d like saying yes to not become a lie.

The 19th of September. 

It’s been about fifteen degrees today, yet I am wearing a thermal t-shirt, a jumper and a long cardigan. When it gets actually cold I think I will literally perish. 

When we went out this morning to the dental hospital, at home it didn’t feel cold enough to warrant a jacket, but in Edgbaston it was raining and freezing. Then inside, their “natural ventilation” air conditioning was going and it felt like a howling gale. I was having to hold the pages of my book down to stop them from blowing over. I was called in and saw Mrs. Richards straight away, no minions today, so we had a chat about how I am, she looked at my mouth, and I’ll go back in three months (which happens to be the ninth anniversary of my first transplant). No surprise tongue injections today!

Popped into town on the way home – I needed some pens from Muji, a new hoodie for the gym (I’m going back tomorrow eee) and some cotton wool pads. Also went to Pret for one of their chocolate chip cookies and a flat white to warm me up, which the chap very kindly wrapped a napkin round because it was very hot. Bless. 

This afternoon I’ve weaved in all the ends of my snood and fought the urge to nap. Trying would only make me sleepier anyway so it would be fruitless. Hopefully I will sleep well tomorrow night after my return to the gym!

The 20th of September. 

I am going to hurt tomorrow, as I had my first session back at the gym today and it was haaard. But more about that later. 

I was surprised to find that Daddy had gone to work this morning seeing as he was throwing up again last night. But apparently he felt okay and he’s not called so assuming he’s been fine. I put my gym clothes on so I had no excuse not to go, and did some research into moving my blog from WordPress to SquareSpace. It’s quite easy to move the blog across, it’s the photos that are an issue. If I decide to do it, I think I’ll have to spend another day in front of the computer. 

After lunch, Mommy took Grandma to fellowship, then when she got back I leapt into the car and to the gym we went. My card had not been unfrozen which was awkward but it got fixed, and I just have to pay the balance for September next time. Then I discovered that my heart rate monitor has died which was most inconvenient. Bah. Anyway, I went through my usual routine in a rather low-key fashion. It’s going to take a while for me to get back to where I was. I saw Vlad and explained that I can’t train with him right now, but he’s going to help me come up with a routine for my core. Lots of planks methinks. I didn’t see anyone I hate, just the girl I am incredibly jealous of because she has the most phenomenal body I have ever seen in real life. I want to be her friend but also I am very intimidated by her. 

And Brangelina! I am loving all the petty Jennifer Aniston gifs on Twitter (even though I very much doubt she cares).

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.