The 13th & 14th; So many months of darkness.

The 13th of October.

Reasonable sleep. I think I woke up at about half eight? This morning I sent some emails, wrote up some blogposts and watched some tv. After lunch, Mommy went to see Grandma and I watched TOWIE while adding photos to the blogposts.

Upon her return we went upstairs to reorganise my summer/winter wardrobes which basically consisted of me sitting on the bed and instructing her on where to put things. I could not have done it alone. But now everything is tidy and that is the best way for clothes to be. I do still need to organise books and shoes though, but that’s another day. 

After doing that for nearly two hours, we came back downstairs and I painted my nails and have been fairly idle! I just don’t move a lot because everything is so bloody exhausting. On 7mg of pred today, although even once I’m off them, it’ll take a good six weeks for things to start improving. 

The 14th of October.

Ugh, going down to 7mg was obviously a step too far because the skin on my hands started looking spotty so we’ve gone back up to 10. Stupid gvh, it is just ruining my life. I hate it so much, and every setback makes it worse because it’s so unpredictable and I can’t control it. I’m going to go to bed feeling like hell tonight. I want to cry.

Mommy and I went into town to buy some denim-look leggings and to replace my Clinique lower lash mascara because mine has run out.

This afternoon I’ve just been upset and angry about the steroids. It’s going to take forever to get off them and it feels like the light at the end of the tunnel just keeps inching further and further away. So many months of darkness.




On “fighting”, and why it is a word I do not use.

When I talk about having cancer, I tend to simply say “I had it”. Other people want me to say that I “fought”, “beat”, or “was battling” cancer. I just don’t feel it’s wholly accurate. 

Nothing I actively did was going to get rid of the cancer. It was much more that I was an unwilling hostess upon whose house cancer inconsiderately marched in on one day and refused to leave. It was a reasonable, average house our hostess lived in – nothing too fancy, but something worth saving. Our hostess didn’t have the ability to get rid of Herr. Cancer herself, so she called upon her friend who she thought might be able to assist in her plight. Mr. Chemotherapy Jnr. made a valid attempt but had to call upon his father, Mr. Chemotherapy Snr., and between them, they were able to haul Herr. Cancer out without causing much damage to our hostess’ property.

Alas, Herr. Cancer had been able to leave himself a secret entry way should he wish to return, and four months later, he did . He had also brought friends to set up camps elsewhere in the home, and this time multiple forces were required to mount a defence. Mr. Chemotherapy Snr., including Colonel Radiotherapy and Major General Transplant were all called in to lead the troops. After many long weeks of conflict, it seemed the assault was over. Our hostess made thorough checks and there didn’t seem to be a way for Herr. Cancer and his cronies to return. Her allies all left, and finally she was able to assess the impact. The house no longer stood as it once had – a strong fortress, not much to look at but warm and welcoming. Her exterior was not offensive. 

Now our hostess found herself stood in a wreckage. Some areas might require a little patching up here and there, and there was some serious structural damage that would need a more in-depth assessment to rebuild, but she at least had a framework in a field. A battlefield, which she picked through, using what she could salvage to try and build a new life, never forgetting the epic war that left her each piece. 

That’s how I feel. I didn’t beat cancer. I was simply the battlefield on which the chemotherapy fought the cancer, then I was the brigade sent in to tidy up the mess and make the best of it.

The 11th & 12th; Lorazepam sleep so today has been a fuzzy blur.

The 11th of October.

So I had pretty much no sleep for some reason, but the rubbishness of that was tempered by the fact that I won a Twitter competition and my prize was lunch for free for me plus one at kingshEATh brumyumyum so Mommy and I went and had tasty street food!

We were having coffee and deciding what to have when we saw Kathryn, the chaplain from BCH and her husband which was lovely as she’s super sweet and obviously we don’t see her anymore, so it was a nice surprise. Mommy decided on a pulled pork burrito, and I had a pulled pork roll and BBQ beans from Rolling Smoke. It was sticky and spicy and messy and totally delicious. For pudding, we both had cakes from Bake – I had an apple cider duffin and Mommy had a New York vanilla crumb cake and both were really good (I had a mouthful of hers). Then we bought lots more cake, including a spiced chocolate pumpkin mini bundt cake which I just ate and it was also absolutely scrummy. Very warming and seasonal.

This afternoon/evening has been spent letting my tummy relax, and I had a tiny little cry at CazFlack dancing to I Don’t Wanna Miss A Thing because lack of sleep makes me extra emotional.

The 12th of October.

Lorazepam sleep so today has been a fuzzy blur. I washed my hair and watched Sunday Brunch (although I may have had a little snooze part of the way through) because these things do not require brain power.

I ate my “dirty brownie” from Bake at lunchtime and it certainly took a while! Brownie baked with Oreo inside and a chocolate chip shortbread base. So worth it though. This afternoon has involved crocheting, and as my brain has become less mushy, I crawled upstairs to sort out some of the mess in my bedroom. So I’ve done all of the financial stuff (receipts, bank statements) and got rid of some hair equipment I will not be using again.

Next I really have to do my Summer/Winter clothing swap around/cull, then there will be more space on my floor and in my wardrobes. Then it’s just the books! I’ll get there. Clothes will be a serious undertaking.

Tonight I’ve written a slightly drug-induced essay on fighting cancer. Reading it back might be interesting tomorrow. Or incredibly insightful. It’ll definitely be honest.










The 9th & 10th; In some ways, I am quite glad I don’t have a normal life, because I don’t have to worry about the future.

The 9th of October. 

Well I decided that I wasn’t going to do the lung function tests. We arrived and talked to Dot who is a lovely nurse and she agreed that there wasn’t much point when I can’t walk a few metres without getting breathless. I still had to go and see Dr. Thompson and he wanted me to have a chest x-ray because he’d feel silly if there was another reason for my breathlessness and we hadn’t checked. So we did that and there was indeed nothing, as usual.

I didn’t need blood which was also a handy bonus because we were expecting to be there all day, so that was a couple of hours lopped off. After photopheresis, we went into town where I bought a sparkly fisherman’s knit pullover from American Apparel, and I had a flat white from Origin.

This evening, Becky came over as we haven’t seen her all week and we talked wedding, school, and her masters, all very stressful things! In some ways, I am quite glad I don’t have a normal life, because I don’t have to worry about the future.

The 10th of October.

Today did not start off well, with the news that Emma (big sister of squidgy baby Sophie)’s brain tumour has grown, and in a few weeks they’ll be heading for Oklahoma for treatment. She’s only six years old, for fuck’s sake.

This morning I went round the corner with Mommy to get money and mint imperials for Grandma, and I got some sherbet pips. I had some apple, pea and mint soup for lunch which was interesting. Not that it was bad,but it was very sweet.

This afternoon, I started reading a Jeffery Deaver that I thought I’d already read but actually haven’t! Shocking. Oh, and Julie’s filed copy with Grazing, so that’ll be out around Christmastime, spreading the joy.

The 7th & 8th; I got a mysterious gift.

The 7th of October.

Slept in again today! Woke up at half past seven, turned over, next thing I knew it was twenty past eight! Plus I got a mysterious gift of some maple syrup from Canada but no indication as to who it had come from! It seems it was a sneaky Amelia Derry, bless her.

This morning, we went into town to visit the Origon coffee pop-up in Selfridges, but we also went to the Apple shop to buy a plug-in mouse as the trackpad has given up on functioning. We also went to Hotel Chocolate to try the new Supermilk chocolate which I was not as enamoured with as I thought I might be.

I’ve been somewhat depressed today because I’ve worked out how long it’s going to take for me to get off steroids and it won’t be until the middle of November, meaning I’ll still have a fat face at Christmas. I know it shouldn’t be a big deal but it is and I feel really shitty about it.

The 8th of October.

I am stuck in a horrible self-loathing state and I can’t seem to get my head out of it. I had to get up at half six because I had photopheresis at nine this morning, and I’ve got a lung function test tomorrow at nine before ECP and possibly a blood transfusion as my haemoglobin was on the low side today.

This afternoon I edited Julie’s first draft of the piece for Grazia, crocheted a bit, watched TV and was generally something of a useless lump. I feel really upset and angry with my life and I don’t seem to be able to get a handle on it. I wake up with good intentions but every day seems to go wrong. There is usually nothing I can do except wait for it to pass.


The 5th & 6th; I looked over and Mommy was crying.

The 5th of October. 

Today has been such fun. I got up this morning and watched Sunday Brunch, and Becky and James came over because they were locked out, so we had some bridesmaid dress chat, which James was just enthralled by.

Mommy took me to Brindleyplace for Fiona’s hen meal at The Slug and Lettuce. When I got there, I couldn’t see anyone I recognised, but eventually I found Corinne, her mum, at the table in the corner covered in balloons. Plus Nick’s mum and two of Fiona’s relatives. Fiona and the rest of the party arrived after some time, and we all ordered. I had the Philly steak sandwich with sweet potato fries, although I had to dismantle if heat it. Then we played a “How well do you know Fiona game” which I did not score highly on as I have pretty much missed the past few years. I had the cookie cup explosion for pudding, then I had to go so I left enough money and Daddy collected me in the chair.

When we got home, I was craving vegetables, so I had some extra ones that Mommy had made for her and Daddy’s dinner. This evening, Mommy and I went to the mac to see Susan Calman and she was excellent. At one point in the show, as she talked about a trip to the sewers of Paris, I had mild hysterics. The show was about loving yourself, and being Swan A in Swan Lake. Susan, you are a swan, and so am I.

The 6th of October. 

I woke up at 7:40 today! This is most excellent. Hopefully this pattern will continue, but I won’t hold my breath. Not that I could right now, anyway. I am not optimistic about my lung function tests on Thursday.

Spent the day inside because the weather has been hideous and there has been no reason to go out and inflict it upon ourselves. I wrote some stuff for Julie for the Grazia piece because she was going to work on it today, so I’ll probably get a draft of it soon.

We cleaned out Hamilton’s cage after he finished shovelling bedding into his face and I got some rather amusing photos of him. He’s a funny hamster.

We watched an episode of Criminal Minds in which a child died from leukaemia and I looked over and Mommy was crying. I feel so helpless.





The 3rd & 4th; I think I just need to get off steroids.

The 3rd of October. 

9mg of steroid! We are getting there. I might not be off them completely by the end of October like I planned, but hopefully it won’t be far off that.

I’m pretty knackered today, so I have just lived in the armchair. The nurse came to flush my line and clean the site which was all fine, I crocheted a snood using triple crochet so it was really quick, and I replied to emails from Julie and Leukaemia Care.

My hands are really trembly and it’s really hard to write so I’m going to stop.

The 4th of October.

Everything has been a huge effort today. I think my muscles are getting even weaker – I’m out of breath going from the living room to the kitchen, my heart rate is through the roof and I’m almost constantly trembling. I think the last time I was this weak was when I came home in 2009 after my liver transplant.

This morning I read the paper and watched Saturday Kitchen, and this afternoon, Daddy and I went to see Gone Girl. On the way, we stopped at B&Q for him to buy some light fittings, and I listened to music on my phone on shuffle in the car.

Gone Girl is really quite exceptional. Everyone in it is so good, and I think I’m glad I haven’t read the book.

Tonight I feel out of sorts. I don’t know. I think I just need to get off steroids.






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