16-32-64 thirty-nine

Fatigue, tiredness, lethargy. Exhaustion, feebleness, languor.

Weariness.

It's been a day mostly spent in bed, once I'd dragged myself back from the hospital. A very odd appointment too - what I thought was primary tumour recurrence turns out to be first signs of lymphodema. What he thought was diabetes caused by steroids, wasn't. What I thought was oral thrush isn't. The stretch marks I thought were caused by Kadcyla is actually because of the steroids... Side effects fun goes on and on!

And now I have them in a lower dose, and need to come off them asap.

And I had bloods taken, did a pee test for the glucose and changed appointments around... So I was there for nearly three hours and slept for four when I got home. My eating is up the wall because if I go without for a few hours I feel terribly sick... But coming off the steroids has left me with little appetite. I can eat, just with little pleasure or gusto.

Had a fab time with my brother, the sister-in-law and the nearly-one-tear-old TJ. He's an incredibly happy child and such a pleasure to be around. The journey was long in both directions but I managed to nap which helped. I felt normal for a couple of days - I wish it had lasted longer really.

Much more to tell you, too fuzzy-headed to make much sense of my thoughts. Another day. There's always another day. Well, for now.

This lady says it better.

16-32-64 thirty-eight

I think we'll stick with 32 today. That doesn't seem so bad.

I've had a tough week coming off steroids - I've gone down from one every 36 hours to once every 48 and am suffering a lot of mood-switches (sometimes quite sudden), sickness in the mornings (again) and feeling like I've got a cold coming on when I get up - but it goes by lunchtime. Odd.

Anyway, there are lots of things I would really like to bitch about, but none of them really feel worth even the typing time. Except this - a new movie coming out in September. Another one about cancer. Another one about BREAST CANCER. And I'm tired of cancercancercancer everywhere. 

Watch the trailer before you read my thoughts; trailer here.

There aren't many things I have strong opinions about these days; but guilt has always been a deep part of my psyche and this is a new thing to feel guilty about in my life.

During my first treatment; Docetaxol chemotherapy (similarly insanely priced; but you only have six sessions) I cried for many hours over not being about to 'contribute' to the world whilst taking away so much. Not being able to work - and since then, having to retire from work - tore me to pieces. I can't remember who it was - I think our counseller at our group sessions - told me I was contributing to the lives of my family and friends. You don't have to work to be 'giving back'. That helped, but on days like today, not quite enough. 

16-32-64 thirty-seven

I've just had a mild altercation with a lady in the bus, who clearly wanted to play "I'm more worthy of this disabled seat than you are". I mean, seriously. I'm thirty two feeling sixteen because I can't do confrontation, sitting in the space normally set out for sixty-four year olds!

It's been an odd week; I've wanted to write but nothing has really happened or seemed worthy. I'm coming off my steroids in a different way to usual and it appears to be working this time. Instead of taking them in a "one day off, two days on" pattern as recommended by the Oncology team, I've been stretching the time between them. I'm currently doing 36 hour gaps with little side effects (I think) and tomorrow start 48 hour spaces.

I say no side effects, but I did spend almost the whole weekend in isolation and wanted to - odd considering that being in them on a higher dose makes me antisocial, and apparently so does coming off them. On Tuesday mum was due to pop in and I realised I was going a bit stir-crazy, so I met her at a local cafe and we sat in the window watching the world, and I felt reconnected. And ready.

I met a few different (ex-) colleagues (I must get used to saying the ex- part - I've not been properly at work for nearly two years!) yesterday evening - all very excited with their news. One is newly engaged, one is leaving having been headhunted, others are doing big projects and all sorts.

They're all excited for me, being so well and stable and looking so healthy but... That's not an achievement, is it? I haven't gotten here from hard work - it's all luck and the hard work of the researchers and amazing people that create the drugs. I'm just receiving - and lucky to be able to.

My Pops is doing well - his hormone treatments have started and in a couple of weeks we get to go meet his Oncology team and plan the start of his chemotherapy - most likely in the same week at the start of October. It's good that his treatment has started - the waiting is so hard when you can almost feel the cancer growing inside you. Envisioning something like black mould or little green monsters the size of nanobots multiplying...

Okay so I'm feeling a bit sensitive - I have an Oncology appointment myself in an hour and I missed my train by moments, so once again I'm at a train station updating you. I've had stretch marks suddenly appear in the fatty bit of one arm - not both, just there, high up - and I'm worried about lymph node involvement. I don't even have the balls to feel it and wonder if it is lumpy or soft or what it should/shouldn't be like. I just know something isn't right and I'm going to talk to them today. Being stable at the last set of scans might be a relief at the time, but never means it'll last.

I have lots to tell you about. My dad's friend in Liverpool had secondary lung cancer and is about to start radiotherapy for brain mets. My/his desk arrived refurbished and looks gorgeous. It's insanely girly now with all my mad tat, but I couldn't be prouder. Even he is impressed with the work.
I had my eyebrows done - they look great. I'm back in Weight Watchers - also going great. My train is being delayed... Less great. More later.

16-32-64 thirty-six

Had a really good meeting with my GP (and a frightened looking pet registrar) this morning. I'm amazed to find I haven't seen her since April having had to pick up with locums during the summer while she's been away, and spending so much time in Oncology I haven't needed to see her.

Am in Costa Coffee right now - being back on WW (since yesterday - don't get excited!) made me go looking for the least naughty drink I could have and stay out and about. I was expecting to end up with an iced-tea-fruit-infusion type thing (which are usually pretty tasteless) but it turns out they've gone back to basics and started blending just fruit and juice! Like you would at home! What a revelation! (sigh) So I'm getting two of my five a day here and feeling very angelic.

Back to the GP. I updated on her my physical and mental health - great and great - brain mets are 'calcified' following the radiotherapy and organ mets are all NED. She looked particularly surprised by the brain so perhaps I'm very lucky it's worked so well - I chose not to ask what she was expecting because I honestly don't what to know. I told her about my reduction in steroids with my new 36-48-72 hour gap plans (coming off steroids is a hideous experience, making me very very sick. This is a new try) and she said it was inspired, so I'm pleased with that. Then we went on to my energy levels.

Costa is filling up - the children in here are quite well behaved and not too loud, but I am looking forward to them going back to school so I can use the cinema more at my leisure and it'll just be the "yummy-mummy" crew to contend with. I should get out of here before lunch time so I'm not too tempted by the smells of their paninis being toasted...

Having this chemo break has reminded me what having a normal (for cancer) energy levels are like, and I want it. I crave it. I don't want to go back down to fatigued days and long long nights. A friend who is a nurse and has a special interest in antidepressants and similar meds, informed me last week that the one I'm currently on (SSRI Citalopram, 40mg) has an element of helping you sleep. So with my GP today I mentioned one of the alternative SSNI (similar but not quite the same) called Venlafaxine.

My GP is lovely and has given me a great, solid place to go to when I have medical questions or need a bit of comfort and support. But you can see from her face that she is NOT used to people who do their own research; know their drug names and doses and feels quite out of her depth sometimes when I come in spouting my cancery news with almost relish. I love to learn about this stuff, it really helps me cope and understanding is the main way forward when you know you may end up on trials and your own research and contacting specialists may save your life. Well, extend it then. 

So, she looked uncomfortable while I talked about this alternative, but conceded that a change of meds now rather than later in the year made sense. We talked for a while about how I was ready to suffer a bit of a bump while I changed and the steroid reduction at the same time - I said I would get off the steroids first, and she seemed relieved. I'm in no rush, everything in it's own time etc. 

Just had a call to confirm my friend J has the keys to her new place and is moving in today - this is fantastic news. I'm going over there shortly to have a sushi lunch, and see it for the first time. I'm so pleased for her; she so deserves a break after this year. My fruit concution here in Costa is nearly finished and I'm starting to feel the eyes of "time to buy something else or go, love" from staff. Five more minutes... 

Eventually the GP agreed to all my logic; I don't think I pushed but I was very positive and I think that really helped my case (the reg sat silently nodding - talk about way out of your depth with a cancer patient asking for antidepressants with a kick!). The GP is going to speak to a psychatric colleague about how best for me to make the switch, and call me to discuss further and create the prescription with relevant dosage etc.

So, as I said, a good appointment and she's pleased I'm coming off the steroids, gone back on WW and doing positive things like getting involved at St Christopher's. Which I haven't yet but I will. I will!! 

16-32-64 thirty-five

I feel sixteen at the moment - I know I'm not running around brimming with energy, but I certainly feel absolutely wonderful on this chemo break and it's doing my physical and mental health wonders.

Sunday was my 32nd birthday (that information still hasn't really settled in yet to be honest) but festivities started on Thursday when I travelled to meet friends in Milton Keynes. An amazing dinner was had, here at Melis (Turkish & Ottoman food - the best of any Mediterranean I've ever had) in the little village my friends H&C live in.

Friday was the shared tattoo I've been hinting toward for weeks - this is the original image, from a Korean poetry book (we contemplated getting the text and decided not to, but it's very beautiful):

H already has a few small tattoos and my friend J came up to have her first with us at Electra Tattoo, all done by the incredible Mark who bravely put up with the three of us from 10:30am - 7:30pm in order to get the three done in one day. What a grafter; and a true artist. Photos in a few days when the last of the bruising has gone down - it seems to be healing well (if a little slowly, although I've been warned of that on lower legs) and I think the chemo break of three weeks will be enough.

Dinners and lunches and lovely family moments including a Chinese for ten, where so much food was ordered I was actually a bit embarrassed (£177.20) and a trip to Greenwich - one of my favourite places in the world.

I had my eyebrows tattooed back on today by Geraldine at the Karen Betts Harley Street clinic. They never really recovered after coming back very fair and sort of half-there after the first chemotherapy which finished this time last year; so I promised myself when I got ill health retirement that I would have them done - I extremely pleased I went ahead.

As I'd hoped, it was a really positive experience; couldn't recommend her more and I'm very happy with the early results. My niece came along as a second opinion and to help me make the big decisions - at seventeen I thought it was a good chance to see what having a tattoo looked like - almost an 'ink-lite' experience! Not that she wants any of her own, but I was grateful of the company when I started to get a bit nervous beforehand and someone to bounce the ideas off when it came to agreeing to the colour and shape. They look like real hairs; it's quite incredible and really very different from a standard tattoo - the machine was even quieter than the gentle hum of the rotary that Mark had used a couple of days ago.
Looking forward to seeing how they fare over the next few days while the swelling (no where near as bad as I expected) and darkness of colour goes down. Photos soon; worth every penny - and it costs a lot of them!

Lastly, my desk has arrived back in it's incredible refurbished condition - fits great in my living room and I'm busy filling it with all the good things that a nice desk deserves. I'll take photos tomorrow in the daylight - but it is really stunning. My dad was particularly impressed with how well the re-leathering was done.

So, a couple of days indoors (I was preparing for the eyebrows to look a lot worse than they do) with just a GP catch up on Friday, and Sainsbury's delivering on Sunday. Let's hope it's drier tomorrow - it's been pelting with rain all evening - so I can at least sit out in the garden while I relax. Oh! and I keep forgetting; dinner with J at Sapporo on Friday night with my Pops - she is moving into the area on Friday so I'm looking forward to showing her what was my favourite restaurant when I lived nearby with the ex. Fingers crossed it's still just as good!

16-32-64 thirty-four

For anyone wondering how my weekend away is going...

16-32-64 thirty-three

I have questions. Big ones, about life, the universe and everything. Maybe I'm feeling 42 today.

No, definitely not. I feel about twenty actually - I have more energy than I have in weeks, and my tinnitus is relatively quiet despite staying up until two. My thighs feel more normal and my stamina is at a high - I spent all day out from 11am - 8pm and I'm still good. This is the week I'm due chemo but I'm taking a three week break to get tattooed... So I'll keep feeling this way, and better hopefully for the next 21 days. That - wow - that sounds GOOD.

So, three questions to ponder -

Is there a shift pattern in place for bell ringing in churches? Do they even do this manually any more or is it all automated?

Is there a nice neighbour etiquette regarding wind chimes in the next back garden? I really like that neighbour and don't want to upset her, but oh oh how I hate wind chimes.

Is there a moral reason not to visit Poundland? I don't know anything about it, but it's mostly recognisable brands, and therefore not supporting sweatshops in the way Primark do - right?

Signing off happy!