I don’t want our house to become a hospital. (1/4)

In this blog I focus on what has happened since Annie came back from hospital. To recap 15^th April was the 4^th operation. During this operation Annie suffered a type of stroke during and it meant she awoke with a loss of movement to her left arm and leg. She stayed in hospital for 2 weeks. In the meantime we started to make some adaptations to allow her to come home. The deadline everybody was working towards was Joseph’s birthday on the 29^th April.  On Friday 24^th April the news came that they were happy for her to come out on the Tuesday in time for birthday on Wednesday.

Bed

We needed a bed. One of those electric beds that go up and down, with sides, wheels etc. We needed a space for it too – so we took the sofa out of the front room- put it in the back room (where it actually fits a bit better). We needed to transform the front-room into something resembling a bedroom – something that was functional but not too hospital like. We left the hifi, vinyl records and TV as they were. We swapped the chest of drawers for a taller set to have space for clothes and toiletries. We took the net curtains from Joe’s room for privacy. We moved a small book case with Joe’s books to allow him to have a presence in the room and to encourage story reading with Annie once she got home.

Chair

Oh yes and the armchair: we also have a chesterfield armchair in the front-room – it was from a charity shop 10 years ago with broken casters and ridiculously low to the ground when seated. My first idea was to ask my friend Danny to fit me some legs – but the OT said we needed an ideal height of 52cms. That would have meant some pretty bonkers twiglett legs. Dan’s solution was to make a kind of platform out of fork lift truck pallets. Annie’s dad Allan then carefully sanded and stained and, well, it works. It is surprising comfortable, earth-quake-proof-stable 51.5cms, (but it will not be winning any design awards any time soon).

Commode and whatsit

We also needed a commode chair – ( we don’t have a downstairs loo), a wheelchair for getting into the kitchen. To get from bed to chair requires a transition on something called a Re-Turn or a MoLift (in fact it seems every professional we meet has a different word for what is essentially a very fancy porter’s sack-truck on casters). So we needed one of those too – a relift moturn trolly wotsit. We also needed training. Normally you’d go into the hospital to get a demo from the physios but with covid19 this wasn’t possible. In the end we had a Facetime demo which worked pretty well. 

To transition to a wheelchair from the bed there is a meticulous process to follow. In case anything happens to me -I’ll note it down for you here: First job is to locate and fit a metal leg brace to Annie’s left knee. It has four clips that have to be done up in a particular order. Almost everybody attempting this will put in on upside down 3 times in 10. Once on we need to fit a Velcro sling to the left arm. Then with two people- we help Annie swing round into a sitting position on the edge of the bed. Feet flat onto the Re-turn with shins against the front pads. Brake on. Annie pulls herself up into a standing. Once she has her balance brakes off – and slowly turn and roll back to the awaiting chair. When calves touch the front of the chair -stop, brake on. And then Annie lowers herself down. Leg brace off ASAP (it v uncomfortable but plays important role in protecting her knee, whilst also bruising her good knee. Annie's brother Michael has pioneered an innovative solution for this using a travel pillow. I’m encouraging him to publish it in the BMJ). Once in the chair we can loose the arm sling. It works best (and is safest  to do with 2 people – one on each side, but in the middle of the night we are starting to perfect solo missions with minimal light).

Now as you may have noticed, that is quite a bit of equipment to source over a weekend in lockdown.  The bed came very easily. The other stuff dribbled in over the next day or so. It meant for the first 48 hours she was stuck in the bed but at least she was home.

Thankfully we didn’t have to rely on our FaceTime transition training completely as two physios from the hospital kindly came out to see us and supervised us through our first attempts. There’s so much to remember – and all while also making sure we don’t put our backs out. For the first few days I was raising the bed 3 foot into the air to give myself a “safe working height” but frankly it added about 10 minutes to the process. Kneeling is the way forward.

Ramps

With the weather improving we also wanted to have a way to get into the garden. I spotted some Taxi wheelchair ramps for sale online. They are super lightweight and with them we can get a wheelchair out through the backdoor and into the garden and even down the side passage and out onto the street, all with relatively little fuss. The toughest bit was convincing Joseph that the ramps were not exclusively for rolling cars down. The first few times he was very cross about us moving them.

Stairlift

Because our house has one bathroom to get upstairs for a shower would require a stairlift. We were recommended a person who could fit us a stairlift on a rental basis. You get a brand-new stairlift fitted for a fee and then pay a monthly rental. They only take about 2 hours to fit -and sit on the stairs so cause minimal damage/impact to walls/skirting. The issue we had was the landing has one turn at the top. The choice is either a very expensive lift that goes around corners or to build and fit an additional step at the top. Danny’s dad Alan came to the rescue and made such a step using only measurements from a text message. He got the measurements mid afternoon and by 8pm it was fitted and in position. We hope to have the lift fitted sometime next week.

Table

It is only after a few days of using the equipment that you start to work out what you do and don’t need. We started with a plank of wood as a makeshift bed table -but now have one of those tables on wheels. But we also decided to send back an oversized dining chair that didn't really work. In fact we also put all but one of our dining chairs into storage to make space for the wheelchair. Most of Joe’s toys have been filed away upstairs but importantly not all. We are conscious not to medicalise our house and to make it feel to him like he is being driven out by the new arrangements.  After a couple of days we started to get out into the garden with the wheelchair and even started a routine of going for a morning wheelchair vs balance bike race down the former railway track that runs behind our house. The balance bike always wins by a nose.

In the next blog I’ll talk more about the people that are now supporting us.

Rehab (you know the tune!)

They said I gotta go to(neuro) rehab I say ok, ,K,K

Yes I’ve had a stroke but I’m not broke it’s ok, K K
I ain’t got that much time but if Stephen thinks I’m fine,, then that’s ok,K,K

Thank you for humouring me, people and for tolerating the abandonment of good grammar for the sake of rhythm (I’m not broke’) ... a sad and difficult trade off indeed 😁

Book Recommendations

Here's a list of books suggested to Annie by family and friends ...

1. A Confederacy of Dunces. (It’s bloody hilarious)
2. A Gentleman in Moscow by Amor Towles. (I really, really loved that book ; Really good escapist stuff)/
3. Canal Walks by Julia Bradbury.
4. Eleanor Oliphant is Completely Fine by Gail Honeyman (2 votes).
5. Galbraith mystery books
6. How to be a woman - Caitlin Moran (belly laugh funny)
7. How to Pray for Normal People (Pete Grieg) What it says on the tin
8. Innocent wife' by Amy Lloyd (woman falls in love for murderer on death row, he's released, they marry...)
9. Jigs and Reels by Joanne Harris (the first one is hilarious and reminds me of me and Stephen’s mum. We escape from a nursing home!!)
10. Ken Follet Century Trilogy (Really long but un-put-down-able.).
11. Mallory Towers, Enid Blyton (Easy escapism read. Reminder of stuff she read as a youngster).
12. Mythos Stephen Fry
13. Neverwhere Neil Gaiman
14. Persian Fire and Rubicon, by Tom Holland
15. Philip Kerr Bernie Gunthie books (murder mysteries set in Berlin in ww2 / cold war,)
16. Philippa Gregory series-
17. re-read Adrian mole books (easy to read and very funny).
18. Shantaram by Gregory David Roberts
19. The Bookshop by Penelope Fitzgerald ( a short book wonderfully observed)
20. The Cockroach by Ian McEwan. Great political satire!
21. The Hundred-Year-Old Man who climbed out of the windo and Disappeared – Jonas Jonasson (Fab book, Funny and clever; v good).
22. The Loud Halo by Lillian Beckwith (life on a Scottish Island)
23. The Music Shop by Rachel Joyce (a novel )
24. The Neapolitan novels x4 by Elena Ferrante starting with My brilliant friend – (excellent; fantastic; really enjoyed them)
25. The Number 1 Ladies Detective Agency books by Alexander McCall Smith
26. The Once and Future King. TH White -
27. The Postcard - by Leah Fleming!
28. the Potkin & Stubbs series – (“yes the target audience may be 10-12yr olds but the author is my sister in law”)
29. The queen and I Sue Townsend
30. the Rivers of London series by Ben Aaronovitch. (light fun reading).
31. The Street Lawyer by John Grisham (like every other Grisham)
32. The Unlikely Pilgrimage of Harold Fry – uplifting.
33. the Witcher series by Andrezj Sapowski
34. Things I don’t want to know’ by Deborah Levy
35. Three men in a boat Jerome k Jerome (good for a laugh)
36. Three Women by Lisa Taddeo. (Totally up her street and a page turner to boot!)
37. Trash by Andy Mulligan
38. What Would Boudicca Do.
39. Wolf Hall by Hilary Mantel

three steps forward

Guest contributor: Stephen.

The aim of the latest operation was to further prepare the ground for radiotherapy. By all accounts, the goal was: "further debulking of the medical temporal component" and was satisfactorily achieved. The last two operations, where Annie was in for one or nights before being discharged, has not reflected the risk associated with this kind of surgery. It seems this time, at some point during operation, Annie suffered a temporary loss of blood to part of her brain. This has resulted in a loss of mobility down her left side. It is not total. She can move her left foot, wiggle her toes, chew and swallow normal food etc. etc. but her left-hand side is weak. It is far too early what level of mobility she can regain. In the meantime, she needs to rest to recover from the operation but regular twice daily physio to maintain muscle tone. Medically, she is well and improving every day. She has a good appetite, is reading, listening to music and is easing back on to the iPhone sudoku. All of this remains punctuated by naps and a variety of assessments from therapists and care from specialist nurses. She could not be in a better place at this time. Salford is by all accounts world-leading in this area. She is has her own room in what is a modern facility. However, these are strange and challenging times. All visiting is suspended. The hospital seems to be coping with demand from C-19 but remains in a state of readiness for a surge in demand.

Annie's care is being overseen at this point by the department of neurosurgery. Preparations are made for neurorehabilitation. From what I can gather (this is all rather new to me at this point) is there are three steps:

1.  Acute neurorehabilitation: to provide the required nursing and medical input following the operation, and once medically stable
2. Post-Acute neuro-rehab: that can offer the required intensity of rehabilitation and assessment. This is usually a specialist unit. There are several in greater Manchester and take direct referrals from her current hospital. But given the C-19 situation, it might be more of this second step work will take place where she is.  
3. Home and cared for by family but supported by community specialist neuro-rehab teams. 

I think these three steps offer a sketch of what is in store- but what isn’t clear is how long each step will take. We are still only 4 days since the operation. All we can do is remain optimistic. But we also need to be prepared for a process that will likely take several weeks and months of incredibly hard work to engage with the programme of rehab.

I can't think of anybody better placed to take on this challenge. Annie has never let this disease hold her back. The multiple operations, cycles of chemo, radiotherapy and epilepsy have made their presence known and left their footprints. Still, through it all she has done some incredible things over the last 8 years. From advising government on everything from food and rural affairs, to dementia care and support for carers. A masters in statistics and a PhD leading to an award winning paper, invitations to speak at prestigious seminars. Articles in top journals and a monograph on wellbeing and values. The full spectrum of research: from high level statistical modeling to qualitative interviews with older people with dementia and their partners, Q sorts in care hopes and all this passed this on to her postgrad students. And, all this while giving birth to (and potty training! Oh yes.) the funniest, smartest, bossiest most beautiful little boy in all of Levenshulme. (or as Joseph says; “I’m a big boy now, but with a small mouth”). The amazing thing is that Annie has done all this, achieved all this, living with the roller coaster uncertainty of what the next scan will show or when the next seizure will strike. Her positivity and determination to "do things well" has meant she has remained well, physically fit, healthy and active. She has been helped along the way by her incredible family and most loveliest assemblage of friends. We have been lucky to have continuity of care from the same oncologist, specialist nurses, surgeon (and even anaesthetist). Every attempt at a second opinion has revealed we have the best medical team throughout this. Despite what seems like unrelenting positivity, Annie's resolve has been tested so many times in recent years: countless blood tests and scans, the frustration of cancelled or deferred appointments, and trauma of seizure-related injuries. And now we are here. Now, this.

Where this chapter sits alongside previous setbacks is too early to judge but what is clear is she needs your support more than ever. If I can make one request at this point -please can you send any messages or questions my way for the time being. I will relay everything I promise.I think it is essential over the next few days she can rest up as much as possible. Once she is stronger, she’ll be able to reply and engage. In the meantime, Joseph and I are muddling through. Annie's lovely mum, Deborah is now staying with us. Thanks to Hannah and Deborah, we have plenty of food in the lockdown fridge, and we continue to devise ways for Joseph to burn up as much energy as possible the garden. He misses his mum so much. Like all of us, he was hoping she’d be home by now. He is almost 3 (29th of this month) and how much he understands is hard to say – but we are being open with him when he asks questions, and we have things like Facetime where he can say hello or good morning or ask questions "can I eat your Easter egg now mummy?" After a day and a night of puzzlement, things are starting to fall into place. The toughest bit in all this is not being able to visit. We can't speak to the medical team face to face. These are the realities of a hospital adapting to very challenging circumstances. Your messages of support and book suggestions are a tonic and have helped us immensely. We don’t have to face this alone.

4th time lucky

Hello everyone

Well, recovery from operation number 3 has been going great guns. I spent two nights in hospital, came home, and had top class care from my men - the little one and the big one :) plus more top class care from my top class mum.

Being in lockdown  hasn't made much difference to me - I'd have been at home recuperating anyway. I'm classed as 'vulnerable' and I'm not supposed to go out at all. Thank goodness for a garden! We won't talk about Joseph's views on lockdown...

This week, the results of the operation came in and we went to discuss them with the neurosurgeon. To cut a long story short, the post-op scan showed up another couple of dodgy bits that would be relatively easy to get out, and would leave a smaller 'field' for radiotherapy.

So. Back under the knife for operation number 4 next week (Wednesday). He (Mr surgeon) wants to get back in before too much healing happens.

I'm not sure how I feel about yet another operation, maybe because I feel a lot of things at the same time.
Good, let's get it done, better to get it out of the way now than have to do this again at some unknown point in the future. Good, as per last time, they wouldn't do it if they didn't think there was a chance of improving the situation.
Also, FFS, AGAIN?! We've got to go through all this awful upheaval and stress and worry AGAIN, so soon, just as we were starting to see light at the end of the most recent tunnel? Give us a break! It feels a bit like being in a boxing match, taking punch after punch after punch, before we've even got up again.

HOWEVER. We will never, ever give up. We can take it. We'll always get up again. Every single time. Because we've got each other, and all of you - the best support network of family and friends anyone could ever hope for. Thank you xxxxx

We're going back in

Hello Team Family and Friends

The latest update in the noggin-gone-wrong saga is that surgery is scheduled for next Wednesday (25th March). Last time, I spent one night on the recovery ward then came home - hopefully it'll be similar this time. I imagine they'll want my bed as soon as they can get it, given corona virus overload.

On that topic, the hospital has said that we need to be ready for the date to change, subject to the CV situation. But at the moment, we're on (subject also to me, the neurosurgeon and the anaesthetists not going down with it,,,). I'm keen to have the surgeon who's done the last two operations - he should be quite familiar with my right temporal lobe by now :)

Stay well everyone
Big love to all,
AA xxxxx

Sorry the comments still don't work on this blog, I might move it - watch this space.

Ding ding, next round

Hello

An update: I have to have another (third) round of brain surgery. This is extremely annoying.

Best case scenario: They get it all out.
Next best scenario: They get some out and what's left can be radiotherapy-ed.

I don't relish the idea of more radiotherapy - it really wiped me out last time. Compared to radiotherapy, (for me) chemo is a walk in the park. But since the chemo has stopped working, there aren't that many options left.

HOWEVER, as my lovely Macmillan nurse pointed out, they wouldn't be offering me surgery unless they thought there was a chance of success. So it's actually a good sign (within the limits of horrible circumstances). And if they can't get it all out, but getting some out opens up more treatment options, that would be better than nothing.

It's the same surgeon as the last two times, so he's pretty familiar with my right temporal lobe now.

I'll post more updates when I can.

Bye for now x

Back on track

Right then. Well the radio silence over September and October has been due to a long period of non-news. After two rounds of the new-style chemotherapy, my blood counts crashed to worrying levels. So then it was week after week of blood tests to see if they'd recovered. They hadn't.

Finally, two weeks ago, after another blood test showed that the counts were still not strong enough to resume chemo, the doctor called time on it - no more chemotherapy, it was doing too much damage. Chemotherapy was off the table. This was all a bit scary - are we running out of options here? No, there's always more radiotherapy, and even possibly more surgery. But still...

So what's the plan? Wait until the next head scan and go from there, depending on the results.

The head scan was yesterday. And it was good news! Things are looking "a little bit better", AND blood counts have recovered sufficiently to push on with the chemo, at a slightly lower dose that shouldn't have such drastic effects.

The relief is overwhelming. I was prepared for the worst yesterday, and actually it was quite the opposite. For the last fortnight, morale has been low. But yesterday was a real morale boost. I feel like I've been rebooted! It's really weird to be pleased about the prospect of chemotherapy, but in the  words of the doctor, "it's working". That's good enough for me. I'm ready. Bring it on!

We're all going on a - - summer holiday!

Hi folks

Good news: my blood finally started behaving itself and I've had my treatment this morning! (Day 1 happens in hospital, then the remaining days of the cycle are tablets I take myself). So I'm jetting off to Dublin tomorrow morning! That means 12 days of holiday, Yippee! Can't WAIT to see my gorgeous boy (oh, and Joseph too)  ;-)

Love and craic to all!

Very good news, excellent news, and slightly less excellent news (but only slightly)

Hello. Since my last post, I've been hobbling around as my burns heal, and they're well on their way to being 'done'. The skin graft has gone from being described by the specialist burns nurses as 'lovely' to 'beautiful' and has now reached the heady heights of 'gorgeous'! Well done those doctors! (And well done my leg, obviously). And most importantly, I got back on my bike yesterday for the first time since Burns-Gate! Very good news!

In the main news, the first cycle of the new-style chemotherapy appears to have been pretty successful. The doctor had said that if the post-treatment scan pictures showed that things had stayed the same, that'd be good enough for him. It turns out that there has actually been a small improvement. We're over the moon. Excellent news!

I was due to start the next cycle last week. One of the side effects of chemotherapy is that it compromises your immune system. Last week, my 'blood counts' (which show the state of your immune system) were too low to go ahead with treatment. Less good news. So it had to be deferred a week, to give the blood counts more time to recover. Today was the next attempt - blood tests to see if we could go ahead with treatment tomorrow. And it wasn't good news: my blood counts still haven't recovered enough. This is disappointing, and even more so because we were due to go on holiday to Ireland this Friday. But now I've got to stay here until next week, to try again with the wretched blood counts. This time I've got some drugs that should help. So fingers crossed. And plans are afoot to work out a way for me to get to Ireland for at least some of our holiday (despite protests, I'm insisting that Stephen and Joseph go on ahead - they have to get the holiday started). There are many factors to consider in the planning of these plans, but I'm pretty determined to get myself to the emerald isle, one way or another. I'll cycle if I have to (see above)!

So it's all a bit of a roller coaster. But the upside of deferring treatment again is that I can take my mum out tomorrow for a posh birthday lunch!

Until next time, love xxx

A bump in an otherwise excellent road

Last Thursday marked the end of the first cycle of the new chemotherapy regime. And it was fine! I'd been very nervous about it, and didn't really know what to expect. I'm happy to report that it's going to be very manageable. Such a relief. I thought I might feel sick and awful, and in fact I didn't.

I even didn't miss mature cheddar and red wine too much (I can't have these or other foods containing something called tyramine during the ten days on the drugs and for two weeks thereafter). Surviving without mature cheddar was way easier than I'd anticipated!

So that was a triumph. It was only marred by an unfortunate incident involving an epileptic seizure and half a litre of boiling water. The boiling water ended up in my lap, and the burns were so serious I needed a skin graft. It was sore. But I'm on the mend, and just frustrated that I've got to sit as still as possible for two more weeks. The big scary chemo was going fine, then a mundane activity that I do multiple times every day of my life - making a cup of tea - did me in! I just can't believe it happened! But anyway, the graft has 'taken' and is healing nicely. So let's see it as an annoying bump in the road, but we're still going in the right direction. It won't be long til I'm back on my bike!

New regime, Day 2

Yesterday was a great day. In the morning, I had the stitches out of my head. I was expecting the worst, but it was totally fine (I nearly said "lovely", because I had a lovely chat with the two really lovely nurses who did it)! I am clearly Well 'Ard. Just saying :-)

Next we went along to the hospital for my first session on 'the stuff' (the chemotherapy). I had no idea what to expect, this is a new kind of treatment I've never had before. Turns out you sit in a big comfy chair in a little bay for 20 minutes with another really lovely nurse, having another really lovely chat. The stuff goes in through a drip in your arm, but you don't really notice because you're chatting about the new cafe on the high street. The drip drips through, then off you go with your bag of drugs.

So it was all very painless! I have to take more drugs in capsule form for the next nine days (plus the anti-sickness ones to go with them), but then I've got the rest of this six-week cycle off. Ten days on, 32 days off. Not too bad at all!

I am mightily relieved. I didn't know how long it would take, or what the room would be like, how I'd feel as it was going in, how I'd feel afterwards...etc etc. Today, I feel absolutely fine. So far, the main after-effect is a hot tip about the best new cafe on the high street!

I know it's only Day 2, but so far so very good.  Onward!

Keeping going

Well, the saga continues!

The good news is that I've dragged myself off the sofa a few times now, and I'm feeling better and more energetic by the minute. My course of steroids is also complete now (I had to take them for the swelling), so I'm not feeling compelled to consume a constant stream of chocolate (it was the steroids that made me do it, honest)!

The less good news is that we went back to the hospital yesterday to talk to the consultant about the results of the post-surgery scans. The easiest way to explain it is that they got nearly all of the worrying bit (hurray!), but there's still a little bit left (boo), which it was too risky to remove. So this means that there's more chemotherapy on the way. Very disappointing. But as always, I'm glad to have a plan. And even better, the plan is happening sooner rather than later - we start Monday. They're six-week cycles, so I'll do one cycle, then have another head scan, and we take it from there.

I have just one thing to say. I WILL NEVER SURRENDER!

This isn't the first time I've called upon Athena, Goddess of war and Goddess of wisdom. I'm also a fan of her hat.

I'll keep everyone posted. Over and out for now xxx

Hello from "the other side"

Hello from post-neurosurgery recuperation (the sofa!). My world at the moment consists mainly of light novels, Heat magazine and various delicious things to eat, so things aren't so bad at all!! Dr Joseph has had his doctoring kit out, he practised on Panda a bit before turning his attention to me, and his assessment was very positive!

My head and the stitches are a bit tender and I've got a bit of a black eye, and I"m not allowed to wash my hair yet so feel slightly gross, but overall recovery is going brilliantly. And that's because I'm being kept afloat by the great river of love and support from all of you. Thank you.

I'll be back soon xxx

Back again

Hello. Well, here we are again. The last post on this blog was exactly six years ago - May 2013. It was entitled "Done and dusted". Hmm. Right. Turns out we're not.

Since May 2013, a lot has happened (brain-wise). We'd got through diagnosis of a brain tumour, surgery, radiotherapy and chemotherapy. Regular surveillance head scans were consistently clear, and went from every three months, to every six months, to every twelves months. Then, in 2017, just as we were approaching the '5 years all clear you can go now' stage, a scan showed some new growth. So it was back onto chemotherapy. I did a few more cycles in 2017-2018, and it seemed to have knocked it on the head (ha!). This was extremely good news. So it was back to the old routine of quarterly surveillance scans, working towards the next 5 years clear milestone.

The latest scan was on 1st May. The news was pretty hard to take. Some tumour cells had survived the chemo and, in the consultant's words, were "misbehaving." We're going to need more treatment.

Words were said. Many of which are not repeatable here. Suffice it to say, my Dad said "I've never heard you swear before"!

I am very very cross. It's like the most horrendous game of Snakes and Ladders ever.

We saw the neurosurgeon who had done the first surgery back in 2012, and he's determined to get the troublesome bits out. Clearly it'd be ideal if it could be physically removed, and we feel so much better now we know what's happening. We have a plan. And I like a good plan.

So surgery is happening on Wednesday 5 June. And in the meantime, we're going on holiday. Charge up the batteries, ready to face it head on.

I'll keep posting. I'll set Stephen up as co-poster so he can let everyone know when surgery is done. It's a 3.5 hour operation, compared to 5.5 hours last time. Easy-peasy!

That's all for now, see you on the other side xxx

Done and dusted!

Excellent news: on Monday night, I took my last tablets! Hurray!

You will remember that after the intensive phase of radiotherapy and chemotherapy, the next phase was another 6 months of chemotherapy tablets, in cycles of 5-days-on-23-days-off. And now, as of yesterday, all 6 cycles are complete! (See picture of the completed motivational progress chart I've had selotaped to the inside of a kitchen cupboard.)

I'll be going to the Christie in a month for another head scan, which they'll compare against the baseline one they did in March. But for now, I'm free! Well done us, we did it!

To celebrate, here's a couple of pictures of me and some amazing ancient trees in Cumbria!

 

Scan news

Today is the first day of my fourth 28-day tablet cycle (5 days on, 23 off) - after this one, only two more lots to go!

Today was also my first post-radiotherapy head scan. Stephen accompanied me to the Christie, and they saw me right on schedule at 8.30am (quite a shock to the system, given my current student lifestyle of not normally getting out of bed til that time!). As I wrote last month, there were a number of possible outcomes of the scan: no progression (best); pseudo-progression (uncertain); progression (worst case scenario).

My lovely doctor saw me pretty swiftly afterwards, and said he had taken a good look at the pictures. And the verdict is: No progression! He said my brain looks much better, and what's left of the tumour has actually shrunk, which is an extra bonus. Stephen held my hand the whole time, and then there was much happiness, relief, and a spot of tree hugging in Cringle park! Hurray for my brain!

Quick update

Just a very quick update for now: all is marvellous! I'm back doing my PhD, my 5-days-on-23-days-off tablets routine is completely fine (3 out of 6 done!), I feel great, my hair has started to come back, my blood counts are back to normal (people can be as ill as like they near me now!), the snowdrops and crocuses are coming out in Cringle Park, so overall, things are looking very sunny indeed (except the weather, obv). My scan is booked in for mid-March, so I'll blog again once we know the results.
Happy Spring! X

You cannot see your brain in the mirror...

The brilliant artist David Shrigley often has a wise insight to offer and, as this shot of page 17 of his new book shows, when it comes to brains, he seems to have hit the nail on the, er, head! Following this sage advice, I opted against throwing my brain in the river, and am in the process of getting it fixed. A visit to the doc yesterday marked the beginning of my second of 6 tablet cycles (so I'll do 5 days on the tablets now, then cycle 3 will start in 28 days, and cycle 4 will be 28 days after that, etc). Although my blood counts are still a bit low, we're going ahead with the cycle: we're hitting it hard, as per the plan.

One of the things I've learnt along the course of this journey is that it's not a good idea to take anything for granted, and I need to be flexible with the narratives I construct for myself. For example, when my narrative of "I'll have an operation, then I'll lie around for a bit, then that'll be it" turned out to be not quite right, and I needed further treatment, it was a bitter pill to swallow (literally). So with this lesson in mind, yesterday I asked the doctor to go through all the possible outcomes of the head scan that I'll be having later this month. I want to be prepared for all eventualities; I don't want any surprises. Being flexible with my narratives, see?

She said that the scan pictures might show (a) improvement, (b) psuedo-progression, or (c) progression. Obviously (a) is ideal. (b) means it looks worse, but isn't really - it's the lingering effects of the radiotherapy causing swelling (this is why they wait a while after radiotherapy to do the scan). (c) means we have to talk about further options. What are the further options, I asked. Well, the next thing we would try, she explained, would be PCV chemotherapy, which is the one you have intravenously.

Hmmm. Clearly, we hope it won't come to that. But if it does, we'll be prepared and we'll get on with it, like we've got on with brain surgery, radiotherapy, and tablet chemotherapy. I don't think this is pessimism (although it feels faintly like it), I think it's being flexible and prepared. And I think David Shrigley's insight is a good one to keep in mind: however tempted you might feel, you really cannot just throw your brain in the river. Even if it takes a while, you must get it fixed.

I'll keep you posted.

Next steps

It's been a while since my last post, and that's mainly because I've not had much to report. November went well, and I managed to string out my birthday for at least three weeks, so that was good too. Stephen made my actual birthday a day of glorious treats, starting with breakfast in bed, then a tasting menu at a top restaurant in the peaks for lunch (and I could eat and enjoy it all! Woohoo!), then a walk round Chatsworth, then a cosy fire and a film. Lovely! He also surprised me with a set of Uilleann pipes - Irish bagpipes - which are amazing (not sure what the neighbours think)! I also went to the ballet with my mum, afternoon tea with my friends, a gig with Stephen, and in general managed to have a full-on birthday festival! Hurray!

To make it even better, it turned out that my appointment back at the Christie to start my next stage of treatment was not, after all, on my actual birthday (as previously reported in the blog post of doom a few weeks ago), but the day after. So I donned my wellies, turned on my tunes, and stomped on in. I saw my lovely doctor, told him how good I was feeling ("That's because you're tough", he beamed at me! He's so lovely!), and picked up my prescription of 5 days of tablets (remember we don't call it chemo - just like taking a paracetemol etc), plus all the other tablets that go along with the tablets (e.g. anti-sickness, anti-biotics, blah blah blah). The drill now is that I do 5 days of tablets per month, for 6 months. I'll be having another head scan some time in the new year, then surveillence scans every so often for a bit

So the 5 tablet days were absolutely fine, except for the seventh day when I woke up in a panic that I hadn't taken my tablets the day before (how quickly we form habits). But apart from that, I felt fine. My appetite was a little bit low on days 4 and 5, and I had Heinz tomato soup one day for lunch (recall that this was about the only thing I could manage when I was doing the 6 weeks of treatment), but I soon recovered to full strength chocolate cravings. So it looks like the new regime will be entirely manageable. And I've got my progress chart on the go again, with a sixth of it ticked off already.

The final thing I'd like to report concerns my hair. My amazing hairdresser has sorted me out with a set of wefts. For the uninitiated (I was one of you until a couple of weeks ago), a weft is a type of hair extension - a piece of hair that can be stuck to the skin or to other hair. My brother amused himself for a while by sticking one onto his chin so it looked like he had a Chinese-style beard, and if you leave them lying around, out of the corner of your eye they can look like some sort of weird animal, but that's another story. Anyway, my wefts are the most marvellous invention, and totally cover all my bald patches, so I can go about the place without fear of comb-over-slippage, and without having to wear a hat at all times. Also, Stephen has discovered new talents - he cut them for me so that they matched my own hair (some were too long and looked funny).

And that's it. I'm feeling thoroughly excellent, I've got some lovely new stick-on hair, the new tablet routine seems fine, and in 6 weeks I'll be going back to work. (I can't wait. There's only so much Come Dine With Me a person can watch.)

All that remains is for me to wish everyone a very merry Christmas and a joyful new year, and I'll post again in 2013.

xxxxx