Archives For August 2015

The 29th of August. 

I had a really crappy night. I can’t put it down to the anaesthetic because it’s never affected me like that before. In any case, I didn’t fall asleep until about two. Not on. 

I hadn’t planned on going to the gym today, but Mommy suggested it and I felt quite perky so I decided to go after all. This morning I wrote up a blog post and read the paper (won’t even mention the puzzles) and watched the important races in the athletics. 

The gym was rather uneventful, although I think this is the first time that I can remember the smiley boy not being there. I’ve been trying out the treadmill, and today I nearly ran. I got it up to 6/6.5 km/h, and was walking rather quickly, then I got scared and turned it down again. I’ll get there. I think. 

The 30th of August. 

A much better night; I was dreaming about wearing loads of puffy dresses when my alarm went off (I still set an alarm at the weekend because I don’t like to sleep ridiculously late). I curled up in the armchair and a chunky cardigan all morning, crocheting my first adult fox hat while I watched Sunday Brunch. Finished the base of that now. 

At lunchtime, the only bread we had stale, so I stuffed two slices with three kinds of cheese and fried it to make a rather decadent toastie, followed by some Mary Berry marble cake. The weather dictates that I eat this sort of food. 

This afternoon, my hair got washed, then I caught up on Cats Does Countdown and The Last Leg from Friday night. I also watched Hannibal which contained some deeply unpleasant scenes. I do like Francis Dolarhyde’s house though. It’s so fancy. 

Now for something much more pleasant – the fields of opium poppies for morphine on Countryfile. I do like morphine when it’s necessary. 

The 27th of August.

It hasn’t been a good day. I cracked. I had to tell Mommy how I’m feeling. I don’t know how it’s going to help. She suggested going and taking classes or something so I can meet people. But I don’t see how that would make things better. I still can’t just go out and do things, even if I made some friends, which I think is unlikely because most people who take classes for leisure (there’s no local adult ed) are retired, or at least much older than me. 

I’m certainly never going to meet a romantic partner. I said this and she said I don’t know that, but I do. I know that no one would ever take me on; I’m a burden. Why would someone date me? I may have loads of brilliant qualities but they’re worth nothing when my body is pathetic and nobody looks at you as a potential girlfriend when you’re in a wheelchair. People say it wouldn’t matter to the right person but that’s bullshit because why would anyone choose me over a healthy woman who can have children and a normal life? Why? No one has an answer to that. 

I just don’t see how anything can get better when my body isn’t going to change. How can things improve when I don’t have a belief that they can?

I’m really at a loss. 

The 28th of August.

It’s been a better day. Nothing is by any means sorted, but Mommy and I are going to talk to the North Birmingham Cats Protection Society about how I can do some volunteering so I can have some kitty friends. 

Today was my coil insertion, hysteroscopy and last minute smear at the Women’s Hospital. We had to be there at 7:30, so I was up at ten past six so I had time to down a lot of water before the 6:30 cut off. We arrived to find that I was first on the list, which was great news as my tummy was already grumbly. I got checked in and given some TED stockings with lovely frilly tops. I had to pull my curtains round at one point because I felt junk in my throat and needed to drink some water secretly to get it swallowed. Nobody noticed. 

The anaesthetist came to see me and we had a chat about my lungs, allergies and drugs, and he was happy with everything, then Dr. Robinson came and I asked her about the smear. She was confused as to why I’d been sent the letter as I’m still only 24, but said she’d do it but it might just get sent back. 

I got changed into my gown and at nine o’clock, and I got taken to theatre. My first cannula didn’t work because my vein did a u-turn, so I had a smaller one. I was given some fentanyl (my favourite) then drifted off into a beautifully dreamless sleep. 

I came round in recovery at about ten past ten, and was looked after by a very nice man who’s had his own medical miracles – he had a heart attack at 35 in a field but was saved by the two men he was with being a doctor and a paramedic, two doctors walking their dogs nearby, an ambulance passing the road at the right time, the field not being used for crops but horse pasture that year so the ambulance could get to him, then the consultant at A&E being the cardiology surgery coordinator! Definitely not his time to go. 

I got taken back to the ward after an hour, and had to stay for two more hours, eat and drink something and have a wee. The wee happened fairly quickly, and just after twelve, a lady came and offered me coffee and a sandwich. They have really good ones there! I chose pulled pork (obviously). 

Mommy came to get me just after one, so I got dressed and after getting my discharge letter, I was on my way! I’m not in any pain because I took two Tramadol when I returned to the ward. This afternoon, I’ve nearly finished the second fox hat, just need to do the eyes and nose and put it all together. Getting there!

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. 

The 23rd of August.

Sunday rest day. It took me a while to get to sleep last night because I had heartburn, but Gaviscon helped with that. I’m finding that happens more often at the moment so I need to keep an eye on it. This morning was Sunday Brunch while I wrote up yesterday and finished reading the paper. I was appalling at the puzzles. 

The athletics world championships has been on today – you can always tell because you can hear Mommy screaming at the TV. I managed to drag her away briefly to wash my hair before we watched the incredibly stressful 100m final. Nobody wanted Gatlin to win because he is a drugs cheat and it would have been terrible for the sport. Thankfully, Bolt won and everyone was delighted. 

Since the important races were over, Mommy went to see Grandma and I watched Agent Carter and Nashville while I started having a go at a different style of hat. It looks like I’ll be making a few more foxes too. 

The 24th of August.

Argh I am being plagued by indigestion and it’s so frustrating because nothing in my diet has changed. I’m going to have to ask Ram for a replacement for lansoprazole or see if we can up the dose.

I’ve got three orders for fox hats so this morning I made the base of the smallest one and it’s adorable. After lunch, I went to the gym, but two thirds of the way through, I was struck down by indigestion and found it too difficult to continue. Mommy came to pick me up and we went to Boots to look for a remedy as the Gaviscon we have is peppermint flavoured and it hurts my mouth. We now have orange Rennie which is tolerable. 

If it isn’t one thing it’s another with my body. I’m getting stronger, but I just can’t have everything be fine. I overheard a guy complaining about his progress, how he’s only able to pull ten kilos more than he could two years ago (presumably something happened) and I felt like saying last year I couldn’t get out of a chair without help so don’t be so hard on yourself. It takes time. 

The 21st of August.

Argh I hate blood tests at unsociable times. I had to get up at seven to leave at half past eight for a test to check if I have hyperkalemia (high potassium). It’s because I started this new blood pressure drug which can elevate potassium, and as mine tends to run on the high side, Dr. Hewins wanted to check that it wasn’t being tipped over the edge. Hopefully it’s fine (I haven’t heard to the contrary) because it’s working. 

I was supposed to meet Vicky in town for lunch but she had to postpone last minute, but we went there anyway to collect train tickets for a trip to London in early September, when I’m going to meet Margot Martini’s parents. 

For the rest of the day, I’ve been rather lazy, watching things on the TiVo box, but in the past couple of hours I’ve been attempting to crochet a hat. We’ll see how it goes. 

The 22nd of August. 

It’s always a good day when babies are involved. This morning I only had time to read about half the paper before it was time to go to Elle’s. Mommy was going to take me but then Daddy offered so she she could watch athletics. After car-swapping and grabbing blue badges, we did eventually set off. 

When I arrived, Luna was just sitting on the floor, being ever so good, then she crawled to me! Last time, she refused to crawl. She even sort of stands now! We had some fun floor time while Elle packed up all of the things, then we went off in the car to get lunch because there was no food. We went to a little café near her house where I had a mozzarella and basil panini with secret tomato in which I had to remove. We just talked and swatted wasps away from Luna until a man sprayed them all (thankfully, not near us). While Elle paid, Luna and I played with my bottle of water (great toy) and at one point she just rested her head on my chest and we had a little hug. It was so lovely. 

When we got back, there was more floor play, and Luna tried to climb me a lot. Leggings are good for that. So she stood on my lap a lot and chewed on my necklace, and did her version of a cuddle which is just to kind of smash you with her body and face. She’d worn herself out a bit as she’d been awake since half five, and she was sitting on my lap while I scratched her belly, and she just dropped off! Just a little snooze, about half an hour, then it was teatime! Mommy came to get me just after, and I got more smashy hugs. I didn’t want to leave, I could squish her all day long.

Once we’d had our dinner, Becky and James came over post-honeymoon to tell us about it and catch up on what had happened while they were gone. Can’t believe it’s already a week since they got married. 

The 19th of August. 

I’d love to say I’m feeling better but I’m not. I had a decent night, blogged this morning. I had a chiro appointment at quarter to one so Trine was able to sort out the rib I’d aggravated throwing up on Sunday morning. 

This afternoon, we’ve watched the last four episodes of Cordon and it was all a bit stressful. 

I’m sorry. I want to write something articulate about how I’m feeling but I don’t know how. Last night Mommy hugged me and said “Thank you for being here.” and I just didn’t know what to say, after having just sat there writing about how much I sometimes wish I wasn’t here. I just want to curl up in my bedroom with my headphones on and pretend my life isn’t happening. I’m under this cloud again and I’m not sure when I’m going to be able to shift it. 

The 20th of August. 

I feel slightly better today. Not tap-dancing happy, but not suicidal sad. It hasn’t been an especially productive or exciting day. I slept until half past nine, then spent my morning being quite incredulous at the amount of Cilla Black’s funeral coverage – you’d think the Queen had died, it was so soporific. 

I went to the gym this afternoon. I went early but didn’t manage to avoid the strange people. I hope when the holidays are over m everyone goes back to their usual routines. I managed to do everything I wanted, for once. This meant it took quite a while though so I was there for about three hours. 

It was GCSE results day today. On my results day, I woke up in hospital, went to school, picked up my results, told some people I was ill, then went back to BCH and started chemotherapy. We celebrated with a pizza. 

The 17th of August. 

On, I had such a great sleep. Only briefly interrupted, and I was in bed until ten, although I could easily have stayed much longer. I got dressed without doing any hair or makeup because I really wanted breakfast. I have felt human enough to eat proper things today. This morning, I blogged the last four days which took a while, and Alison came over to borrow some cake tins as she has to make more cake for a chess thing that Chris has tonight. 

This afternoon, I’ve been to the GP’s to have the nurse take the stitches in my leg out. Took about twenty seconds. Then we ended up on a little jaunt to find batteries. First, Pets at Home for hamster food, then we went to Boots for a watch battery, but they didn’t have the right one. We tried Comet, but no joy there either. Then I had a brainwave and thought I’d look at Maplin who did indeed have the correct battery in stock so we went there and I bought two. 

Lots of Becky and James’ proper wedding photos are online now and they’re so pretty. Except the one in which it looks like I’m asleep. 

The 18th of August. 

Today is eight years since I was diagnosed with cancer. Eight years since Mark sat me down, said “We found leukaemia cells in your bone marrow” and everything else was white noise. A third of my life consumed by being sick, scared, strong, and now suspended in a state of fine-but not-fine. 

It’s a hard place to be. In life, you usually are working towards something, you have things to do each day, objectives to aim for, goals to achieve. I don’t have those things. I’m trying really hard to think of reasons why I should keep going. I find it difficult to envision myself in even a couple of years, let alone getting into my thirties and beyond. 

Part of me doesn’t know if I want to. Years and years of every day not having any point to it. I like it when people sign up to be donors because of me, but is that enough? I could only leave home if I employed a full-time carer or had a partner to look after me and both of those ideas are impossible. No man is going to take on the burden of me, and I think living on my own would make me so lonely I’d kill myself, never mind the financial issues. 

I know I should be grateful to still be alive and I am; I’ve done wonderful things and been incredibly happy, but I just sometimes wonder if it would matter if I wasn’t here at all. I am both sad and not sad. But honestly, a little bit more sad.