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The 5th of May.

More trips out today. Busy busy.

When I woke up, I was struggling, because the oxygen cylinder upstairs had run out. However, things have improved since then. It is always worst in the mornings and evenings. After breakfast, I watched the new episode of Riverdale, and (no spoilers) SO. MANY. REVELATIONS. Also I am sick to death of Veronica Lodge always bringing it back to her and her dad. Do not care, shut up.

I had an appointment at the GP at quarter past one to discuss pain relief. The buprenorphine is making absolutely zero difference to my pain, and she seemed quite surprised to hear this. The next step is to try pregablin instead, so I’ll start that tonight. Fingers crossed it doesn’t affect my breathing.

We came home for about an hour, then we were back out to the dental hospital, just for a check up. They were running late, so I got a lot of The Burial Hour read while we waited. I got called by a young dentist called Joseph who looked about twelve, but was very competent. He looked at my mouth to see if there were any signs of GvHD while another dentist scribed, then we just had to wait for their senior colleague to check I was fine. He was with another patient, and while we sat, we got onto the subject of Netflix, and the girl who’d been writing watches Pretty Little Liars and Riverdale too, and they both watched 13 Reasons Why, so we were in no rush for him to arrive.

Dr. Khan finally came, and thinks my mouth looks the best he’s ever seen it, so they don’t want me back for four months.

As soon as we left, I reopened my book as I was at a critical point, and now it is finished. Oh, Jeffery. Clever, clever Jeffery.

The 6th of May.

Do not like this new pain drug, pregablin. So far it is not making my back feel any better, it has just made me really sleepy all day. Not exactly tired, but my eyes just want to close. It’s not ideal. I’m going to continue with it for a few days, see if the sleepiness wears off and the pain gets any better. I’m not optimistic but I have to give it a chance.

My day has been a really rather dull one, for the most part – I have been sitting with the laptop, typing up the blog entries that I have got behind on posting. There were six to do I got three done. They’re still not posted because I need to add photos and I do that on my iPad. It is very boring but it must be done.

I had a couple of breaks in which I went to sit with Sam and we were both sleepy. He is such a good boy that if nobody wants to adopt him, I will beg Daddy to let us keep him. He won’t live that long, won’t cost us a huge amount of money.

This evening I went out with Sadie to see Joel Dommett. She is a bit in love with him and asked if I’d go so I agreed – although I’ve already seen his show, I was interested to see how he would make the show work, going from a 90 seat room to an 1800 seat one. When we arrived, I saw JT, and we had a little catch up, then he had a look at our tickets and asked if we wanted to go in the wheelchair space instead. Considering they were better seats and I didn’t have to move, I was only too keen to say yes.

The show has definitely improved since October, and I think it actually works better in the larger space. I’d completely forgotten about Laser Dick, but by the second chorus I was singing along again. And he’s changed the ending, which I won’t spoil, but it’s definitely more suitable for the bigger venues he’s doing. He’s not coasting on the fame he’s got from I’m A Celebrity; he’s worked really hard and it’s paying off.

The 21st of September. 

Yeah everything hurts. Literally every muscle. I just got stuck in the middle of the living room because it hurt so much to move my legs. Mommy has found it all vastly amusing and has been laughing at me all day. 

This morning I did very little seeing as moving was so agonising, but this afternoon I had to extricate myself from the armchair because we had to go to the GP for our flu jabs. When we arrived, they weren’t actually open yet and people were queueing outside. Thankfully we didn’t have to wait too long before they opened the doors to let us in. We were told to have our left arms ready and Helen called our names. We both got jabbed and off we went!

When we got home, I looked into the whole blog-hosting thing, and it seems that SquareSpace don’t do domain transfers yet. Seeing as I just got a bunch of business cards made with my website address on, I kind of need to keep it. I still think I’m going to do an overhaul of the site but that can wait. 

When I came back downstairs, we watched the final episode of One of Us (I worked out the twist about two minutes before it was revealed) and I complained about being freezing. Thermal vest, jumper and cardigan. 

The 22nd of September. 

Today has been marginally better. My movement is about 2% better. Seriously, I am broken. I have actually tried not to move because I can feel how stiff I am and I know when I do have to get out of my chair, it’s going to be excruciating. 

Our only trip out today was to the Women’s Hospital for my follow-up appointment with the specialist nurse to see how I’m getting on with the dilators. She is very punctual – 1.45 on the dot she called me in, I didn’t even have time to open my book! She asked how it was going and I said not well; I am still on the first one and feel like I’ve made no progress at all. She asked a couple of questions to make sure I’d been doing it right and I have, so we had to go to an examination room. Jeans and pants off (with difficulty), legs akimbo, and she had a feel (it was more professional than this sounds). She said it feels quite badly stenosed, which is something you can get from radiotherapy or chronic GvHD, but to determine as to whether it’s that or muscle spasm, I’m going to have to have a general anaesthetic to be examined. So that’s fun. I do like the magic liquid sleep. 

Since getting home, I have stayed in the armchair and crocheted. I really want to stretch out on the floor but I’m not sure I could get up again. 

The 4th of August.

I have been sat in front of the computer in the dining room all day. More tickets for Harry Potter and the Cursed Child went on sale at 11am. 

First there was some stress because Chrome didn’t seem to be downloaded on Mommy’s account on the PC, so we had to do that before anything else. We got in the pre-queue easily; it seemed from Twitter that some people were having a lot of trouble. It didn’t matter what time you joined the pre-queue between ten and eleven; your place in the ticket-buying queue was a total lottery. We got number 38515. Some people I know got a better place, some worse. We just had to wait. 

After a couple of hours, we were able to deduce that we were going to be waiting until about eleven pm. Mommy had to take Grandma for her ultrasound, so I had to watch the screen. The website that I’m not on sold out just after half past one, so I was really glad Christine told us to use Nimax. 

To pass the time, I have been binge-watching Fringe (I have nearly two seasons to watch before it expires on the 14th) and crocheting the cookie jar kitten. I have been taking the morphine and so far it isn’t making a huge difference. It’s only three doses so I’m not surprised; I think it’ll take a couple of days. I haven’t been sick though so that’s a plus. I’ve finished the kitten, and now there’s only 2414 people ahead of me. It’s speeding up! I just hope we actually get some bloody tickets or I will probably cry. 

The 5th of August. 

Last night was one of the most awful I can remember having in recent memory. 

We got the Harry Potter tickets by half past seven, thank the literary/theatre gods, then it was teatime. I’d had my third dose of oramorph, and I’d felt a bit sick throughout the day but it had generally gone away. The evening meal seemed to make it so much worse. I couldn’t face even taking my normal tablets at bedtime, let alone another shot of morphine. No more of that please. 

I had to get upstairs, but once there, I just couldn’t leave the commode bucket. I knew I wasn’t getting to sleep until I’d thrown up; it was that kind of gut-wrenching, painful nausea that you know can only end one way. I sat on the floor in my pyjamas with my dressing gown around me, switching between too hot and too cold while watching more episodes of Fringe, seeing as I needed something to distract me. Mommy stayed until about half twelve when I sent her to bed (there was no point doing it any earlier because she would just lie awake waiting to hear me), when I thought it might be getting better. I very slowly managed to take my tablets, but I didn’t get into bed until about quarter to two. I watched one more Fringe, then lay not quite all the way back in the dark, holding a pillow/my forehead/digging my nails into my palms, listening but not paying attention to podcasts. This went on until half past four, at which point I was in absolute agony, far worse than the pain I’d been taking it for in the first place. Then I suddenly had to scramble out of bed and promptly vomited into the commode bowl, onto my pyjama bottoms and all over the carpet. I called out but nobody heard, then I threw up again, and again. I couldn’t go and get someone because there was sick on the floor that I didn’t want to stand in, so I rang our landline on my phone, and when it was answered I just wailed loudly. Mommy came back in (I realise from this description that it sounds like I live in a mansion and she was miles away but I don’t and she was next door) and helped me clean myself and the floor up, thankfully having been asleep so at least one of us was. The throwing up did make my stomach feel better, and I was able to actually lie down comfortably. I think I fell asleep at about half six, then woke up at half eight and again at ten, when I thought I should get up. So, three and a half hours of sleep. I feel so rested. 

To the daytime! First thing was that we spoke to the clinical nurses again, who recommended Oxycontin and if the GP couldn’t give us any today, to let them know and they’d sort it. We’d obviously missed all the morning appointments, so our next option was to ring or go and get an appointment in person at 2, and we thought in person would be better. 

We went out just after lunch, and got in to see Dr. Sangha at 4.20pm. He is my actual named GP so it’s nice to see him once in a while. I needed to go into town for some bits for a care package I am sending, so we had a trip there to kill time. I got all the pieces I wanted from Tiger, coffee (desperately needed), some make up from Superdrug that I couldn’t find in the one in Sutton, and a card and some tissue paper from Paperchase before we went back to the doctor’s.

He was running late, so I finally got Animal finished! So at least being so sick has got things done. When I got called in, he had a reg with him (I’m sure they had a fascinating chat afterwards), and we discussed what I needed. We went through what I’ve had so far, and now I’m written up for oxycontin, oxynorm and ondansetron just in case I feel sick again at all. Hopefully I don’t. 

Boots didn’t have the oxynorm so we need to get that tomorrow, and maybe things will start to get better?

The 2nd of August.

The one day I’m actually able to sleep past eight o’clock, I got woken up by Mommy at ten past because she’d got me an appointment with a different GP at twenty past nine. We decided to go back because of the gabapentin causing me breathing trouble, so it needed changing. Because it was for this reason, I didn’t mind being woken. I got up and dressed as quickly as I possibly could, and had time to eat my cereal but not have coffee before we had to go out. 

Dr. Carter was a very sensible and reasonable person, and she actually listened to what I had to say. After some chat, she just asked what I wanted. I said morphine or oxycontin, so we decided on oramorph. I have to taper off the gabapentin first, so I’ll start it four-hourly on Thursday. Hooray!

Came home to have coffee and give the kittens breakfast. I spent the rest of my morning writing, and anxiously checking my inbox for replies from some people I sent my piece about second transplants to. 

After lunch, I watched the third episode of Mr. Robot, so I’m caught up on what’s been shown, and had just started one of Fringe when Sheila rang to tell me about a potential adopter for Nola. We went through all the information, and had got to the end when she was recanting a conversation she’d had with the woman, said the name of the kitten she’s interested in, and it isn’t one of mine at all! Whoops. At least she realised before I phoned the woman; that would have been very confusing. 

After we hung up, I have started on the cookie jar cat, and I’ve had responses to both the emails I sent which I am 90% happy with so it has been a positive day!

The 3rd of August.

It was not a good night, and the day has not been much better. I was really cold in bed, having to pull up my blanket over the duvet to be warm enough. In August. I despair. 

I woke up ten minutes before my alarm, which was set for half past seven because I needed to be at the (new) dental hospital for 10.35, but we had to leave the house earlier than we normally would because the cricket was on today and Edgbaston Cricket Ground is right by the dental hospital, so we thought parking opportunities would be scant. This turned out not to be the case; there was plenty on-site, so we were really early!

I checked in and we went to sit in the assigned area to wait for my name to be called. We both got decent chunks of our books read, and not too long after my appointment time, I was called in. Through the doors and down the corridor to the booth on the end, where I met a new dentist called Dev. We ran through my drugs and talked about how I’ve been, then he had a look in my mouth. There is an ulcer on my tongue at the back on the right, but we didn’t think it was massively problematic. He went to get Mrs. Richards to check, and she actually thought a steroid injection was necessary, just to give the ulcer a hand in moving on. This was a surprise to us but I wasn’t opposed to the idea. Dev got another dentist, a chap I have met before, to help him. He put some local anaesthetic into my tongue, but the first lot didn’t seem to have any effect, so he had a second go, and that one I felt. My tongue then went numb and swelled up as it should have, and then the steroid was injected into the ulcer. I am to go back in six weeks. 

As we drove home, I had to ring Grandma with my huge tongue and explain to her that we had left and Mommy would be with her as soon as possible, because they were supposed to be going to a funeral and time was being squeezed. 

We decided to actually pick her up and go straight to the church, where I would go home from in my wheelchair. However, when we arrived, it emerged that Grandma had a very enlarged leg and a potential DVT, so she was not going to this funeral. We went home, Mommy sorted out her stuff and went back to Boldmere Court to take Grandma to A&E, as the GP was going to take too long. 

I had to wait a good couple of hours before my tongue had gone down enough for me to be able to eat lunch, which I managed to make but my back did not make it easy as I had to go down to one gabapentin today. Like being constantly poked in the back with a cattle prod. 

The post arrived, and there was a letter for me from Andrew Mitchell, my MP, in response to my email regarding Anthony Nolan’s campaign to not withdraw funding for second transplants. He was not interested. He feels that they’re not cost-effective, not good value for money for the taxpayer. I was a waste of money. He also wanted to let me know just how much the government has done for the donor registers, which is all well and good but pointless if we’re not able to use those donors for their matches. So then I spent the rest of my day trying to write something about it. It was hard. 

Mommy got home about teatime. Grandma’s blood test didn’t show a DVT but that’s not 100% reliable so she has to go back for an ultrasound tomorrow. 

Morphine in the morning. Hopefully I don’t throw up.

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 4th of February. 

I fixed the crochet that was upsetting me. That’s the first thing. 

Second thing is I went to the GP to chat about the fluid in my hand. It’s only in my left hand, doesn’t make sense. He didn’t say much. Felt my hand, suggested I take my bracelets off. There isn’t much to do because it isn’t inflamed. I suppose I just have to watch it, see if it gets worse? Blah. 

It’s #WorldCancerDay today. It’s difficult for me – I have a lot of mixed feelings. No doubtedly it fucked up my life good and truly, but a lot of really incredible things have happened that wouldn’t have otherwise. I have no idea what my life might have been like if I were healthy, it could’ve been utterly dreadful. 

I’m also incredibly grateful to the places I was treated and the treatment I had. My donors, too. However, I resent them for not being quite good enough to fully fix me. I know I shouldn’t be bitter but it’s hard when I see so many other people who got through it scot-free. 

I suppose I just feel like I can’t put it behind me, like it’s never over. If it came back in another form, I wouldn’t be surprised. The amount of oestrogen I’ll go through in my lifetime could certainly cause me problems of nothing else does first. 

I suppose I’m just scared. I’m afraid to try and make a life in case it gets taken from me. 

The 5th of February. 

It has not been an especially busy day. 

I managed to get my own breakfast and coffee this morning, which has made me hopeful for my return to the gym next week. 

The majority of my day has been spent crocheting the lilo for my crochet doll to lie on (yes I know). I took a break after lunch for Mommy and I to go out to town so I could take my Bluetooth mouse into the Apple shop. It was my first trip in the courtesy car we’ve been given while they fix the minor bit of damage that was done the other week when Mommy scraped the car outside Black Sheep, and as soon as I got in I was hit with a wave of smell from the bubblegum air freshener. It’s awful. The mouse is still under AppleCare so they should just replace it. However, for them to do that, I need an actual appointment, and to get one today, I would’ve had to wait three hours. I’m at the dental hospital on Monday anyway, so we’re going to go into town early and go to the Apple shop first thing, so hopefully I can get sorted before I go to see Mrs. Richards or one of her minions. 

We also had a brief trip to John Lewis to get a 2mm and a 5.5mm crochet hook for other projects within the book. I’ve been through it and checked that those were the only ones I’ll need. 

I’m going to have to text Shaki; I want more kittens!

This photo was taken just after I had a tumour that was in my face biopsied in 2008.

The 20th of September. 

I think this is going to be a pretty short entry because I have done a lot of one thing. I woke up at quarter to nine but decided to go back to sleep for another twenty five minutes. Life could wait. 

I fed the chatty kitties once I found their food bowls in the kitchen, and as soon as I’d breakfasted, I started crocheting because I had to finish the thing today and I had an entire ball of wool to use. And that is what I did all day up until about half past three. I had a break for lunch and to wash my hair, then once I was done, I wrote up the blog. 

I went to hang out with the fluffies and had a major development: Harvey sat on me! It was very exciting. I had the armchair extended so the extra bit stuck out which he sat on first, so I stroked him for ages while he slept. After God knows how long, he decided to squeeze himself into the space beside me and rested his head and paw on my lap. I was so happy. Just got to get Hal on side now. 

The 21st of September. 

It’s got to be a good day when you wake up to the news that the Prime Minister put his penis in the mouth of a dead pig. What a leader. What’s on tv? The fact that New Street is all shiny. Guys, it’s just a station. 

I was at the GP this morning because I had a letter requesting my presence following Dr. Hewins’ letter. We say in the awful, germy waiting room for forty-five minutes until I was called in to see Dr. Bagchiu(who I haven’t seen for ten years, by the way) and discovered that basically, one of their juniors had read the letter and not my notes, so got terribly overexcited and called me in. In a nutshell, it was a colossal waste of time. 

This afternoon was Helen’s goodbye gathering, so we arrived at the Faith Centre to find tables heaving with cake, a lot of staff but no Helen! She kept disappearing. She was thrilled with her snood – I forgot to photograph it but it was a very pretty, soft, multicoloured wool. We had some cake and chats, and there was a brief speech and some flowers. I was surprised there weren’t more patients there – she has done so much for us, I am shocked that other people didn’t want to thank her. She is a champion of the vulnerable and the DWP will be the only ones that are happy she’s retired.