Archives For blood

The 4th of September. 

Keeping busy. I had a reasonable sleep, thank god, and today I’ve just been trying to keep my mind concentrating on different things. 

This morning, I wrote up a blog post, and rang up Lydon’s to book the kittens in for their first vaccs. Mommy stood on Harvey’s foot last night and was worried that she’d hurt him, but he was running around and putting weight on it soon after, so I wasn’t massively concerned. And of course, I’ve started up another doily. 

After lunch, it was time to go to the vet. We weren’t going to try to take Henrietta, seeing as I can’t touch her and Mommy is only vaguely tolerated. Packed the two kittens into a carrier and off we went. They were more stressed by the experience than I expected, not even wanting treats when they were on the table. They both are pretty much heavy enough to be neutered, but their balls are too small so we’ll leave that a while. Got some decongestant powder for Henrietta and tablets for the kittens so that’ll be joyous to try to administer. 

Since we got back, I’ve booked a trip to London. An installation has been put up in Paternoster Square of the names of blood cancer patients to make blood cancer visible as part of blood cancer awareness month. It’s only on until the 30th so I’ve had to book a special trip!

The 5th of September. 

I got a message from Adam this morning, telling me to put Victoria Derbyshire on. I assumed there was just going to be a piece about Dean, as I knew she had spoken to him via Twitter. I was beautifully surprised to see Adam, Drew (Dean’s brother) and Josh (Dean’s friend and the co-founder of HISKIND) sitting on the sofa, ready to tell the viewing population about him. And they were so brilliant. Adam spoke so movingly, and was able to not fall apart. And people sent in really lovely comments about him – even in a short segment, it was obvious what an incredible guy he was. He will be loved forever. 

This afternoon, I’ve been crocheting and catching up on Nashville. Also we tried giving the kittens the worming tablets which didn’t really work, so we smushed them up and put them in their food, and put the decongestant powder in Henrietta’s, which she gobbled up. Hopefully she’ll start breathing a bit more quietly. Bless her. 

Haematology clinic in the morning. Good. I need more eye drops. My left eye has been bad for a week, and doing the dexamethasone drops twice a day isn’t enough. Back up to three, need more drops. 

The 10th of July. 

One more day. Will have to find some activity to pass the time tomorrow while I count down the hours. I think a lot of crochet. 

Better sleep. This morning I wrote up a blog post (back on track, although Wednesday’s will be late), and I spoke to Nicola about the bloods. She rang the labs to ask about the biochemistry, and they denied all knowledge of it. Hmph. She said I could come into clinic this afternoon to have them done again, so after lunch, off we went. 

Arrived at the hospital just before two. Neil sent me down to the nurses who had the form, and I got stabbed again. That vein is going to stop cooperating. Anyway, the biochemistry has now been sent off again and if the labs disagree, they will get a telling off. 

I think we were back out within ten minutes of entering the car park, so after getting home, Mommy went back out to Grandma’s. I did some Cats Protection adoption admin while listening to the new My Dad Wrote A Porno, then it was Orphan Black and floof time. Bree sat on me for maybe a whole minute which sounds like nothing, but that’s the longest ever and I didn’t have to try to keep her there. She goes on the website tomorrow. I am prepared for the deluge of potential adopters. 

The 11th of July. 

Crocheted the day away. Up, breakfast, coffee, blah. Got out the doily I have been working on for the past few weeks. Most of the day has been WimbledonB and crochet. Just after twelve, we went to M&S to buy some flowers for me to give to Emelda (Andrew’s secretary) and got a pretzel and cinnamon swirl for lunch because why not?

This afternoon, back on the crochet with one eye on the tennis. I planned to go and sit with the kitties, but pretty much as soon as I sat down, Betty did a poo, so I left again. They smell absolutely awful; I cannot be in the room with one. So, back in the living room, I watched the last two episodes of season 3 of Orphan Black. It’s so easy to get through when there are only 10 episodes per season. 

I don’t know how much I’ll sleep tonight. The biochemistry hasn’t shown up on myhealth which is annoying/concerning. They can bleed me in the morning if necessary but ugh. I just want this to be over. I want to not have to wear oversized clothes or be able to make dents in my spongy tissue or feel my veins being squeezed. I want to feel like me again. 

One nice thing happened: a girl I went to Guides with sent me a message to say she has signed up to be a stem cell donor because of me. One more. 

The 18th of November.

Today has not gone at all how I expected. Up at half past five, at the Women’s by half seven. Mommy came up to the ward with me (mainly because I couldn’t carry my overnight bag on the chair), then left me with a couple on my right and one in the far corner. The nurse (whose name I can’t remember) came to clerk me in, and was amazed by my history (as are most people). She was grateful for my drugs list, gave me a red wristband (allergies), then the healthcare assistant, Mercy, came to do my obs and bring me my anti-DVT stockings. While getting changed, I took a sneaky sip of water to help my dry mouth, then I sat and listened to the corner couple having a hushed, Jeremy Kyle-style domestic. She was really stressed about whatever she was having done, and he was telling her to “Just deal with it like everybody else in here.”, which was not very helpful. They both wanted each other to fuck off, but she also wanted him to be able to stay because she’d freak out if left alone. I gleaned that she wants a hysterectomy but nobody will do that because she’s only 23. Poor girl.

Miss Byrom and Gerwyn the anaesthetist came to see us all individually. She just ran through with me again what she was going to do – remove/separate the adhesions, attempt to do a smear, and take biopsies if deemed necessary. Gerwyn was very nice (as are all the anaesthetists I’ve met) and he was glad to have my latest lung function results. He mentioned that he wouldn’t be intubating me (for a short sleep I’d bloody well hope not), just putting down a smaller breathing tube. That was fine.

I was second on the list, so while I waited to be taken down, I decided to use the time productively and do a blog post. While I was writing, the girl in the corner came to the conclusion that she didn’t want to stay, but before she came back, the porter came and he and Mercy took me down to theatre.

I moved over to the theatre gurney, and was wheeled into the anaesthetic room. I met some new people, confirmed my identity and what I was having done, then Gerwyn had to find somewhere to cannulate me. The first vein didn’t want to co-operate, then the one on the other hand was only too happy to squirt blood everywhere. Still, it was in, then he gave me some morphine to relax me, put the mask over my face emitting gas that smelled of vanilla, and off to sleep I went.

I awoke maybe 45 minutes later, conscious that some time had passed but not long. No dreams. I was acutely aware that things were inside me and that I needed the toilet. I was told that in theatre they had put a catheter and a pack in, which would be pressing on my rectum which was why I felt like I needed to poo. The nurse in recovery was pleased with how awake I was and that I was drinking and talking, so she called the ward and the other nurse looking after me (Rachel) came down. I asked her if the lady in the corner had stayed and it turned out she had. Change of heart. The boyfriend had had to leave though because them’s the rules. She checked the inco-pad underneath me and we found that the catheter had come undone, so she screwed it back together and changed the pad so I had a clean bed.

Back on the ward, they said I would have to stay for at least six hours, until half past four, when they could take the pack out, then the catheter, and I’d have to pee without it. This was not great news but fine, I could deal with it, I just had to adjust my position regularly. It was really, very uncomfortable, and the need to poo did not abate at all. I was brought some tea and toast which at least made my tummy stop rumbling. I texted Mommy and Christine to let them know how I was, and finished off the blog post. Visiting started at 2, so I asked Mommy if she’s come then with some coffee and lunch. To pass the time, I worked on my Christmas scarf and tried to ignore my discomfort.

When she arrived, I explained in more detail what had happened this morning and told her about the whispered argument in the corner (which seemed to have been forgotten when he returned). I drank my peppermint mocha and ate my panini, all the while wriggling around. I tweeted and crocheted, and we kept hearing the nurse ring a particular doctor about him coming to see the lady in the other corner, then she could leave. She waited for him for four hours, and in the end, he didn’t even show up, just gave some instructions on what she needed to do. I would have been fuming.

By ten past four, I was counting down the minutes until we could take the pack out. I was the only one left in the bay by this point, so I could be plenty vocal about my need to have to removed. Thankfully, at half four on the dot, Rachel was all ready to do it. The curtains got pulled round, I pulled the sheet down and spread my legs. She put a sick bowl down for the pack to go in, and started pulling out the gauze. I have never, ever experienced anything like it. There was so much pain as it ripped away from the skin inside my vagina, and seemed to go on forever, like when a magician pulls a string of flags from his sleeve. In a way it did seem like magic because I have no idea how they fit so much in there. At one point, we got to a knot where it emerged that there were two packs tied together and we were only halfway through! I was in absolute agony but I told her to keep going because I just needed it to be over. When she’d finished, the blood-soaked gauze filled the sick bowl and I didn’t even feel any of the relief that I’d expected, just sheer trauma. Thank fuck I never have to give birth because that was one of the worst things I have ever been through.

I was still bleeding a lot, so we didn’t take out the catheter in case they had to put another pack in. I really did not want this to happen and I willed my body to stop. Thankfully, it did slow down, and by the time Miss Byrom came round, it was at a much more acceptable rate. She had prescribed some topical estrogen cream and explained how to use it, and gave me a slightly more graphic description of what had happened in theatre. Basically, there was only a tiny amount of vagina that was open, maybe a centimetre, and she really just had to stick her finger through and rip me apart. Brutal, but the only way. Also, they couldn’t see any hint of my cervix or the coil, but they’re definitely in there. Just don’t know how we’ll get them out when it comes to that. Still, she was happy with how I was, so the catheter and cannulas could be removed. Then I would just have to wee and I’d be able to go home! I didn’t expect this to be a problem as I’d been drinking all afternoon, but my bladder was not keen on letting any of it go.

I managed one rather small wee, which was not adequate, then I just had to drink more. I drank glass after glass, watching the clock because I really wanted to get to The Glee to see Tom and Suzi for 8. About 10 past 7, my stomach was as tight as drum with the amount of water filling it up, and I went to see if there was anything to be done that might help. I couldn’t have any diuretics, but Rachel was happy that I had at least done a wee and was confident that I was sensible enough to know what to do if anything seemed wrong.

I went for one more pitiful try, then Mommy and I took the paperwork and cream, and off to The Glee we went! I decided that I would text Suzi and ask her if she could get a member of staff to let me in the back door so I could go up in the lift and not have to climb the stairs, which she very obligingly did.

This meant I was the first one in, and for a little while, I sat alone in the studio while an excellent playlist of musical theatre tunes played. I couldn’t do the kicks on stage that I might have, but I did take a selfie because I’m cool. Then the room started to fill up, and Tom and Suzi appeared! The format was essentially intro, Suzi’s show, interval, Tom’s show. They were both equally hilarious and thought-provoking and delightful in different ways, and I enjoyed myself immensely. I popped into the dressing room at the interval to say hello and have hugs and chats, and I got to wang on about my very strange day.

Time flew by, and suddenly it was time for part two, so we had group hug and a photo before Tom’s half. I think his show was longer than Suzi’s, and by the time it was curtain down, it was nearly eleven o’clock and I was very ready to go to bed. So tired. But I was really happy I got to finish my day laughing so much with my lovely pals.

The 19th of November.

Well I don’t feel great. Having got in late, I thought I’d sleep really well, but all that water caught up with me and I woke up four times to pee. Did not want to wake up at half nine when my alarm went off but I thought I should.

I stayed in my pyjamas all morning, feeling rather delicate and taking things slowly. Mommy and I caught up on I’m A Celebrity, and I finished crocheting the tiny Christmas tree for inside a bauble. Lunchtime came round quickly, and it felt like a beans on toast kind of day. Warm, cosy food.

This afternoon, I had a go with the topical estrogen. It didn’t work quite the way I thought it would with the dilator, so tomorrow I’ll try the applicator that was provided. It certainly went in a lot further than it used to, so the surgery definitely did its job. I was glad I decided to it on a towel as I am still bleeding and had I not, I would have ruined a duvet cover. Admittedly only a rather unexciting one from Tesco, but still.

I then spent a good couple of hours writing four and half pages about yesterday. I really hope you enjoy all the detail. When I’d finished, I finally read this morning’s paper, and made the penultimate bauble. Just one left to go, for the tree to go in. It might have to be a special one because a) I have run out of outer bauble wool and b) the tree seems too big to fit in the same size as the rest.

I think it might be somewhat longer than I thought until I am back at the gym.

The 12th of April. 

A super busy day. Monica is going to be very annoyed because she has had no company. 

I had to go out with Mommy for her to give blood at ten past ten as I had renal clinic at twelve, and there wouldn’t be time for her to come back home and pick me up. While she donated, I drove around town in order to kill time. I went on the hunt for some lunch because I thought we’d get home mid-afternoon and we were going to be eating dinner early, and eventually settled on a very dull chicken sandwich, bought a coffee, then “browsed” in Foyles (I bought three books – The Loney by Andrew Michael Hurley, A Book For Her by Bridget Christie, and The Girl In The Spider’s Web by David Lagercrantz). By then, Mommy was finished so I met her back at the car and we toddled off to hospital.

I ate my sandwich in the car, and thought I was right to when we saw that Dr. Hewins was running an hour late. However, I didn’t have long to sit and read (The Sandman by Lars Kepler) because he called me in at 12.15! He’s very happy with my blood pressure and we’ve left it without a return appointment! He’s there if I need him, but while I’m stable, I don’t need to go back. Grand!

After getting home, we watched last night’s Criminal Minds, then Mommy went to see Grandma and it wrote up a blog post. We then had to go out again at quarter past five to meet Daddy for dinner at Cau at six before we went to Hans Zimmer (Daddy got a last minute offer through work for £2 yes please).

We had a very helpful waitress who talked to us about the menu, and Mommy and Daddy shared four small plates, while I had a delicious pea and shallot ravioli. We still had plenty of time, so decided to go for puddings, and I had some tasty tasty churros with dulce de leche dip. They were so good. Next time, I’m having meat because I smelled it when walking past the kitchen to the toilet and it smelled divine. 

Had a slight issue getting into the NIA, but Daddy knows all the secret entrances so we didn’t have to join the enormous queue like everyone else. We were sandwiched between people from his office, sat fairly high up but that doesn’t really matter in that kind of concert. 

It was a phenomenal night. Two and a half hours of pure joy. We heard pieces from films like Pirates of the Caribbean, Rain Man, The Amazing Spiderman 2 and The Dark Knight. We saw the man who sings the opening of The Lion King do it live, an insane drum solo from Crimson Tide, and I was transported to space during Interstellar. For the encore, he played Time from Inception and it was just gorgeous. To be able to dream up an orchestral piece of music and bring it to life is so special and not something I think everybody appreciates. I do miss being a musician. The cellist was an amazing woman, on stage in a crop top, short skirt and knee high boots, straddling her instrument and just playing it like a badass. Tina Guo, making cellos sexy. 

The 13th of April. 

Just the one trip out today. Time to lift out the red in my hair so I can be pastel shades for spring/summer. 

My appointment was at 11.15, and I was there for just under three hours. Starving by the time I came out! I congratulated James and June on their win at last night’s L’Oréal Colour Trophy, and that means they get to go to compete in the national finals! Very proud. James was able to take my hair lighter than even he expected, so I can go straight to lavender next time (in two weeks). I got a large chunk of my book read and am nearly halfway through. I am greatly concerned about the family of one of the characters. 

Michaela just gave me a trim, so I wasn’t with her very long. I was getting a bit tufty round the back and in my fringe. Nice and tidy now. She showed me a hilarious video of Blossom just sitting atop a pile of toys, cackling at her dad dancing. She’s such a squidge. 

After getting home and finally having lunch, I had to go and sit with.Monica. I was filling up her for bowl when I looked at the RDA on the box and realised that she has probably been being overfed! We weighed out what she should have, and we’re going to have to be careful from now on. Can’t have a big fat cat. 

The 13th of January. 

I’m really tired. I’ve developed this new routine where I don’t fall asleep until half one/two o’clock, wake up when my alarm goes off but then fall back asleep until ten. I’ve got to get up with the alarm or I’ll never get my regular sleep pattern back. 

This morning was just a blog post and wincing every time I coughed because of the strain I’ve caused in my ribcage again. On tv they were showing the winners of half the lottery jackpot, but I really don’t see why anyone is interested? It is not going to have an impact on anyone in the general public’s life. Not bitter at all. 

I had liver clinic this afternoon. My appointment was for 2.20 but we had to go out at one to ensure we got a space in the car park in time. 2pm is the start of visiting hours so it gets very busy! It was a pretty late clinic today, so I didn’t get in to see James until about 3.20. A random doctor did try calling me into his clinic but seeing as I’d never seen him before in my life I thought I’d tell him I only saw James. While waiting I read my book (The Fire Witness by Lars Kepler, I’m nearly half way through), and our friend appeared so Mommy chatted with him. He’s had some spells in, even was briefly in a coma, and is now trying to get himself back to being well enough to be back on the transplant list. James showed us a new photo of his baby who isn’t really a baby anymore, then I waited to have some bloods done and we got out at ten to four. Once in the car, I had a massive cough – don’t really feel like I can do that in public. In a lift with some parents and a baby, I coughed into my polo neck so as not to spread my germs. 

I think it’s on the way out. I hope so. A week until my birthday. 

The 14th of January. 

What a fucking shitty week. Alan Rickman now too? Cancer again, ruining lives. I have loved him in everything I’ve seen him in, but mostly as Snape. A hugely loved character and his portrayal will live on forever. I’m so sad. 

I got up when my alarm went off this morning, no snoozing today, and after breakfasting and coffee, I decided to finish the hare I’ve been working on. Lucy, she is called. I did her last leg and tail, then I assembled her during Daily Politics and after lunch. 

This afternoon, I read some more of The Fire Witness and tried to stop myself thinking about Alan Rickman by paying The Sims, which was quite successful. 

Oh, it’s all just shit. 

The 6th of September. 

Finally back to the gym. My first interaction of the day was Daddy informing me that the boiler had some sort of fit and died overnight so we have no hot water or heating in general until Tuesday. My hair will stay unwashed until then, wonderful. 

This morning I watched Sunday Brunch and updated my blog. My stomach seemed to be behaving itself so I thought I’d definitely go to the gym after lunch. 

The car was lovely and warm as it had been sitting in the sun so I didn’t really want to get out when we arrived. It was really quiet in the gym, which meant I was able to do everything in the order I wanted to and that is very pleasing to me. One of the strange boys appeared while I was on the mat and decided he wanted to use the box near me. Instead of picking it up and moving it to some free space, he lifted the mat that was apparently in the way to the other side and sort of smashed it down next to me. I did not appreciate that. 

I am trying my best not to pester Daddy about kittens because that will end badly but I want to do this so much and I don’t understand his objection. 

The 7th of September. 

Finally have some clexane plans. I had thrombosis clinic today. After going to three different areas of the hospital (the letter was really not clear), we found ourselves in Haemophilia Clinic with Dr. Gill who used to look after me in BCH, way back when. She was even there when Mark told me the tumours in my face were leukaemia. 

The plan is going to be that my clexane is reduced to 40mg instead of 80mg, and we’ll monitor the size of my leg. If, in 8 weeks, it’s okay, then we’ll try coming off it completely. I really don’t want to have to stab myself forever. 

This afternoon I watched Side Effects while crocheting a scarf in a very fine, multicoloured wool. Mainly thinking about where we can put things that are in the back bedroom so kittens can live there. I want to do this so much; looking after them would give me a reason to get up in the morning, if I had something to care for. 

The 25th of August.

I’m a very sleepy bear today. I had a reasonable sleep except for a distressing dream about spiders which I know is because of several news articles about all the massive spiders coming into our homes soon. Not looking forward to that. 

There wasn’t long this morning before going out to meet Vicky for lunch. We went to 6/8 for a change and had nice coffees and New York pastrami sandwiches. I drank a lot of water with mine because of pepper. My mouth is pathetic. It was so nice to hang out with one of my few cancer survivor pals. She gets it, and she understands my feelings of having no real purpose, not knowing why we’re here. We’re slightly different in that she is really pretty good now – her body functions quite well. But she still can’t work out have the sort of social life one would expect. It’s just hard, and it’s nice to have someone who understands. She thinks I should try again to get Daddy to let me get another cat. 

On the way back, we went to Becky and James’ new house and they’re already ripping it to pieces. There’s hardboard everywhere, random plug sockets, a picket fence suspended ceiling in the kitchen. Right now m it seems grim,but we can see the potential and once they start getting the rooms done, it will be really lovely. The bigger picture is hopeful. 

The 26th of August.

The day started abruptly at 3am when I suddenly woke up and felt something cold and wet on my leg. I turned on the light and pulled back the cover to find an enormous patch of blood and the dressing on my leg totally drenched. It was from my clexane injection on Monday which had been bleeding in the day but only a tiny amount, so I was somewhat alarmed! I had to go and wake up Mommy who took the duvet and cover away to soak out the blood, and we added a huge wad of gauze to the dressing and stuck a mepilex over the top.

When I woke up again at 7, the blood was trying to seep through that, so we added another huge dressing to hold it down and we’re grateful I had clinic this morning. We got there at quarter past nine but didn’t see Ram until quarter past eleven because it was so busy. We gingerly took the layers of dressings off and found them utterly sodden, but the bleeding seemed to have been stemmed. Cleaning it knocked the scab so it started again, and I have another dressing with some extra gauze underneath. 

We needed some photos printing so had a quick trip into town for that, and I bought a Corker from Selfridges. We saw an installation by Macmillan who have a cube which you can get into, but not see out of and can only hear stories from cancer patients. It’s supposed to represent the isolation that one feels when diagnosed and going through treatment. Exactly what I was saying yesterday. No one understands unless they have been through it. It’s so lonely. 

This afternoon, I’ve finished one hat and started the next. I’m not taking any more orders for now.