Archives For painkillers

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 12th of August. 

This is ridiculous. The rash is intolerable, so I am going to stop the oxycontin altogether and then probably just move as little as possible. I have haematology clinic on Wednesday so I can talk to Ram about it then and if we need to get the pain team involved then that can happen. Why has no one invented a painkiller with no side effects yet? There must be money in that. 

I’m also not sleeping brilliantly, so being awake early meant I was ready to go out to the QE this morning at half ten to pick up my HRT patches. From there, we went into town for a very short visit to go to Superdrug for facewipes, heat protection spray and lip stain, then I simply had to go to Selfridges to see the new Self-Portrait collection in the flesh because I am in love with the new Nina pleated mini dress and I just had to stroke it or something. The sales assistant asked if I wanted to try it on but we really didn’t have time. I really want it. Like, a lot. 

This afternoon I have been very still, watching the athletics and crocheting. There will be a lot of that in the upcoming week, I think. Not much movement at all. The most I have done is have some people round to look at Nadia – I thought it was just going be the woman I spoke to, then her husband came too which was obviously fine, then their four children arrived at the door and I thought it might go very badly but all of the work we have done is paying off, because the kittens were really good! Admittedly Nadia hid under the chair to begin with, but she came out and allowed them to view her. Six people means lots of opinions though, so they are currently split as to who they want. I am awaiting the result of a vote. 

The 13th of August.

Today has been so much better. We decided to stop all the pain medication, because the side effects were far outweighing the minimal amount of benefit I was getting, and the relief is unreal. I have been able to get through the day without feeling like I’m about to drop off, and I have barely itched at all. The difference has been quite phenomenal. 

I was up early to go to Black Sheep for a fringe trim at ten, where Michaela was extremely appreciative of the way my purple is fading out, then Mommy and I went into town again. I had to try on the dress and take it home with me. I came up with many reasons to justify its purchase which I am not going to list here but suffice to say its fine. I had to ask a lady if they had it in a ten, because on the floor they only had a six and a fourteen, and it was a nerve-wracking wait until she came back with a dress in her arms. We (me, Mommy and Toni, the personal shopper I’d accosted) went to the changing rooms and they were empty, so I had all the space! I put it on, then had to be zipped up, and it just fit me perfectly. It’s like it was made for me. The decision was made at that moment, really. I looked in the mirror to check it looked how I thought it did, and I am just so glad I went back for it. Anybody who says you can’t buy happiness has never put on a dress that fits them like a glove. 

A quick stop at Charlotte Tilbury for an eye pencil before we left, where they were very complimentary of my hair. I told them about Black Sheep, and they squealed because Dan (one of the stylists) used to work on the beauty floor and they all miss him greatly because he’s adorable. 

After lunch, Daddy and I went to see Finding Dory, which was only mildly spoiled by children. I have no problem with them as long as they behave or if their parent deals with any bad etiquette. However, the child behind me was too young for the cinema. They were constantly chattering, climbing over rows of seats and the mum just followed them around without actually doing anything. Anybody with any consideration of other cinema-goers would have removed them twenty minutes in. GAH. The kid ruined the lovely reunion scene in the pipes as well; unacceptable. If they had made noise in the scene which made me do embarrassing crying, I might have yelled at them, but miraculously, they were quiet for those five minutes. 

The 10th of August. 

Today the pain is much worse and I can’t really understand why. I’m up to 40mg of oxycontin and I was in the wheelchair a bit yesterday, but not to the extent that it would cause such an enormous step back. It doesn’t make sense. I’ve taken three oxynorm too but that hasn’t made a huge difference either. I don’t know. I’m so glad I’ve got clinic and the MRI next week, maybe I’ll get some help. 

It hasn’t been a great day. I’m all tired and itchy from the drugs, I didn’t have a good sleep, and woke up to the news that we missed multiple medals overnight. This Olympics is not going spectacularly well so far. I’m hoping matters improve.

This afternoon, after I got involved with a hashtag on Twitter (why do I do this? It literally never ends well), some dickhead decided to make a meme insulting me. I know that kind of ridiculous bullshit is really not even worth my energy and I should just block people, but it still makes me feel shitty. I wouldn’t have been so bothered if it was the first time I’d seen it, but one of my followers sent me the same meme with different text asking if it was me. I got a bunch of notifications then from prickmonkeys liking it and replying, but I got the original tweet deleted and I thought that was the end of it. To see it again makes me worry that it might become a thing and I really don’t want my face being known on the internet for something that makes me feel shit about myself when I have things to say that are actually important. 

I really feel like crying and I think that is what bothers me the most, because I am letting the arseholes get to me. 

The 11th of August. 

Oh my god I am so sleepy and itchy! I slept really badly, waking up in pain constantly and itching all over. From six o’clock onwards, I couldn’t really go back to sleep, so I watched some Fringe and got up just before eight. The pain was really awful this morning, just getting out of bed was hard, and I don’t get it. When getting dressed, I found my torso is covered in a rash – the itchiness has physically manifested and it is driving me insane. I want to rub up against a tree like a bear, but instead am using a spaghetti scoop as a back scratcher. 

I’ve been sitting around all day waiting for the phone to ring, because we called the nurses this morning to talk about a) pain and b) I have run out of estrogen patches and I’ll need one for Saturday but I’m not in clinic until Wednesday – usually I have enough but my appointment got pushed back a week so I have no HRT. They were all on ward round this morning, and you never know when they’ll finish so I have just crocheted all day long. I got to the end of one ball of wool on the baby blanket in doing to find I’m definitely going to need two more balls to finish it, but the colour I’m using is sold out everywhere, so I’ve had to buy another shade and make it stripy. Then I started on an oversized jumper, but having done the first four rows, it was going to be stupidly large. I’ve unravelled it all and started again, knocking off twenty stitches. I hope I don’t regret it. 

Some good news is that our Olympic performance has improved greatly. Many silvers and golds!

The 8th of August. 

I have had the most fun afternoon. Elle came round with Luna, and later on we were joined by Ben who I haven’t seen for aeons, so it was just lovely. 

We’re nearly there on the pain management I think. 30mg of oxycontin plus some top-ups of the oxynorm seems to be taking care of 90% of it, and I think I can cope with the remaining twinges. 

At least on this regime I am sleeping – I think I am feeling the extra drowsiness from the oxynorm, but I don’t mind, it just means more coffee and I get to have sleep! As long as I’m not dropping off mid-conversation (as I have been known to do), I’m happy. So this morning I got up early-ish so I could get my blog done before going shopping to buy food for me, Elle and Luna. Got some picnic-type bits from M&S, then I spent the rest of my morning crocheting until their arrival. 

They got here shortly after two, and I was struck by how chatty Luna is now! I am “Kaffoon”, which I will take, and she was so good and polite, saying all her pleases and thank-yous. We had our lunch of meat and cheese and bread, then decamped into the living room. We played with some toys and she met Graham the hamster while Elle and I tried to converse. After a while, she started getting a bit wriggly and restless, and we resorted to Peppa Pig on Netflix. It’s amazing how she just goes into a trance, almost. No more chat, just pigs. It did mean we could talk properly, so that was nice. Swapping latest medical stories; there’s always something new! For a Peppa break, we went for a wander round the garden so Luna saw the pond (from a distance), smelled the flowers and played with the windchimes. 

Back in the house, we had a small snack, then more Peppa. She did say please every time and I couldn’t say no! Ben appeared, having finished work, and he and I got depressed about the state of the world. It’s hard being so left-wing. By twenty to seven, they needed to get moving because Luna needed dinner and soon it would be her bedtime, and they live on the other side of Birmingham. We packed up all their stuff, and I carried Luna to the car (which was surprising because she is heavy and I haven’t lifted anything for ages). Elle has just texted me at ten to nine and they’ve only just got home! Awful traffic. We’re watching the men diving and there are some beautiful specimens, which is cheering me up after our loss at the rugby. Bloody New Zealand.

The 9th of August. 

I have just had a very worrying hour and a half, wondering if I was going to be sick. We’ve been at the QE this afternoon (just for visiting; I’ll elaborate later) and in the lift down to the car park, I thought I needed some Rennies, but they didn’t seem to do much good. In the car, it seemed to be turning into nausea, so I covered my skirt with a waterproof, moved my bag and shoes out of the way, just in case, and I got one of Mommy’s handy carrier bags to use as a receptacle. I was also really sleepy from the oxynorm, and I always find closing my eyes makes me feel more sick, so I was fighting that too. I clenched my jaw all the way home. 

Thankfully when we got here, we had ondansetron (anti-sickness) so I took one of those, put my pyjamas on, and sat over a washing-up bowl while Mommy rubbed my back. I am very pleased to say it seems to have worked and I do not think I am going to throw up. Still, I’m just going to have a very simple tea.

Had a very quiet morning, just a phone call to the nurse at the Women’s about the lubricant I got with my dilators, but then I got a call from the GP saying my prescription for the dilators (which I’ve already had) was ready to pick up. I’m going to collect it because I might get the right lubricant this time which would be helpful.

This afternoon, as I mentioned, we had a trip to the QE. Our friend Keith is up on the liver ward, being kept well while waiting for a transplant, so Mommy went up to see him and I went to YPU to see a guy called Dean who I met via BuzzFeed/Twitter. He’s got Ewing’s Sarcoma and is in for a week of chemo so I thought I would go say hello. 

We had a delightful time. Two of my favourite nurses, Tina and Laura were on so I got to say hi to them – apparently they had been talking just the other day about how they hadn’t seen me in ages, which is good! Don’t want to be seeing them really, because that would mean I’m poorly. I was passing on some handy hints for surviving hospital – things to pass the time, which he will need a lot of because he’s got eleven more cycles of chemo left. I was recommending My Dad Wrote A Porno and Like Minded Friends to keep him amused/sane; podcasts can be an excellent distraction from all the shittiness that is a cancer ward. 

His boyfriend arrived and was very sweet too, and we were also joined by a lady from The Little Princess Trust who provide wigs. It was interesting to chat about wigs for men because I never met a guy in treatment who had or wanted a wig, so I learned that actually, synthetic wigs are better for men because they can be cut shorter into styles that are more like what most men would have. We also talked a lot about scalp care (coconut oil) and how slow or fast things grow back, like eyelashes are much quicker to come back than hair. There’s so much stuff that you don’t really hear about if you don’t talk to other cancer patients; he’s going to have to have surgery that will put him in ITU for a couple of days where he’ll be ventilated and will have to have physio afterwards to move the crap that will settle on his lungs, so I was enlightening him as to what that’s like. All the phlegm. 

I left with the wig lady, and went up to the seventh floor to meet Mommy and Keith. Also in his rroom were his husband Gareth, a lady I didn’t know, and her partner/husband who is actually a doctor at the hospital in the thrombosis clinic who works with Gill who looks after me! We only stayed about half an hour longer, mainly discussing wedding hats and holidays. We really had to go at half five, and it was just as well because then I started feeling ill. 

I seem to be fine now. I had a boiled egg and soldiers for tea which has stayed with me, so I think I’m alright. It’s never simple!

The 6th of August. 

Day 1 of oxycontin. No side effects but no relief yet either. I’ve started on 10mg twice a day with scope to adjust it as I see fit. I have oxynorm too, and I’m just hoping between them, I might start feeling better.

I had a much, much better night. All sleep, no vomiting. This morning I watched the Olympic opening ceremony while I blogged and read the paper. I got suddenly, surprisingly emotional at the part with the Olympic Laurel, and the lone girl running down the aisle with her dove kite. I don’t know why; I’ll blame tiredness. I think the games will probably take over our lives again. I loved London; 2012 was a really excellent year and it was so different to how I saw Beijing, which was being trapped in an HDU cubicle, having just had my second transplant. I remember very little. 

This week’s Saturday cinema trip was Jason Bourne. I enjoyed it for what it was – mainly fighting. Fighting and running. And car chases. There is one in Vegas which is too long – you could easily have a nap in the middle. I very much enjoyed Alicia Vikander’s fashion; she has a grey jumper and a grey coat that I am coveting. I live for good knitwear, even when it’s boiling hot. Roasting outside, yet in the house I need a cardigan. 

The kittens are being mental tonight. The heat has sent them bananas. 

The 7th of August. 

I’m really hoping that the upsetting dreams I had last night were just my brain being weird and nothing to do with the new painkillers. One involved our garden being full of cats but not in a fun way, in an ominous, scary way and the other one was about a man in our house who was made of bags of skin. We’ll soon find out. 

I have had a very quiet day. Sunday Brunch this morning, painting my nails and sorting out the care package that will be posted tomorrow (well, that’s the plan). I just need to choose a book to put in, then pack it with tissue paper before it is all taped up. 

After lunch, I finished season 4 of Fringe while I weaved in the ends of the small blanket I made weeks ago. It’s meant to be for a kitten but I like it so much, it’s going to have to be a very special one. I have been deleting more photos from my phone and coming across lots of Nick and Neve. They were so cute and funny. I wonder how they are now. Hopefully they have learned how to behave with water; they were forever splashing it everywhere, making loads of mess. 

Mommy was in with ours this afternoon, trying to get them used to her because they’re still not big fans. I’m not sure how well that went when she spent a lot of time shouting at the women’s rugby sevens team – Christine does training with two of them so we’re rather invested in their victory. Nothing quite riles my mum up like sport.

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 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.