Nil by mouth (4/4)

If you are eating your breakfast whilst reading this instalment- you might want to put down your spoon for a paragraph or so. In the first couple of days after the last operation the wound continued to leak. Given the location (just above the right ear) the fluid in question was CSF(Cerebrospinal fluid). The surgeons added additional sutures (stitches) twice in the first two days after the operation. It seems to be preventing further leaking and Annie was able to go home. Once at home it continued to leak –often only perceptible to Annie. If nothing else it was an annoying in the same way a slightly running nose is. It was worse when she lay completely flat and made better by sitting up in a chair. The worry with something like this however slight is if something can get out then infection can also get in. After a week at home it was time for the district nurses to come and take the stitches out. The wound had healed well. There were no signs of infection and Annie was well. There was no sign of anything serious but they were concerned by Annie’s mention that the CSF was still leaking. So they stopped the procedure and we contacted the hospital. This is one of the moments when you want to have the surgeon on your mobile and have him pop over with a few of his team for a look. In reality his schedule means some days he is pretty much in theatre all day until late, in clinics or not available at all (no jokes about golf/private work please). It so happened this was Annie’s surgeon’s main elective surgery day.

It all started 3:30pm I was in an email exchange with Annie’s key nurse at the hospital. With the head person in theatre other doctors in the team were consulted. The following morning the key nurse advised not to touch the stitches and to await the surgeon’s advice. By 10:30 the view came through that Annie needed to go back into hospital to have it looked at and that Ambulance transport would be arranged.  At noon Annie’s GP and the Macmillan consultant visited for a scheduled visit. They offered assurance that it was a matter for the brain surgeon.  At 14:30 the hospital called to say that a bed was available on a neuro specialist ward was available for Annie but that no transport was available so we would have to bring her down ourselves or to take a taxi. There were two problems here – first we really didn’t like the tone that she was being re-admitted. It felt like a backwards step. And second the through of Annie travelling to hospital in a taxi in her condition and with the current pandemic seemed far too risky. Annie’s key nurse attempted to swing something for us to no-avail. There was no transport. Full stop.

For a moment I was tempted to phone 999. But they would have taken her to the nearest A&E. Instead we mobilised the taxi ramps. Using Annie’s mum as a stooge in our dress rehearsal -we practised loading and unloading Deborah in and out of our camper van. Once confident we knew what we were doing – we gently wheeled Annie into the back of the van and secured the chair down with straps and chocked the wheels (all camper van owners have some chocks to level out the van on uneven campsites, so they came in handy).  Annie’s brother, a hospital doctor, rode in the back and I drove down the half empty streets to the hospital. It took us about 20 minutes. It was a warm day but Annie felt cold so we kept the van pretty warm. Just as we were pulling into the carpark space Annie was sick. Thankfully we had stuff in the van to help her get cleaned up and we left Michael to clean up while we wheeled down in our masks into the deserted hospital. By now it was 16:30.

When we got to the ward = Annie had her own room. It was as hot and airless in the room as it had been in the van. My challenge was how long I could stay with her until I got chucked out (no visitors permitted rule). In the end I got about 90 minutes. Student nurses busily got Annie settled, doing blood pressure fetching her a tooth brush to freshen up, and filling in that whiteboard with -name, nurse and “what matters to you?” information. When they asked Annie the “what matters to you” question I thought she was going to say “getting the fuck out of here” but she instead said something more anodyne – like “keeping in contact with my family”. In the meantime the nurse in charge asked me lots of questions about Annie, her condition, how we travelled in, her earlier sickness. Through all this Annie had about 5 or 6 partial seizures. I told them it wasn’t unusual for her to have one or two and sometimes as many as this. But I soon found myself in a catch 22 situation.

 “Oh so the seizures are not well controlled?”

 “No, no they are, this is very unusually.”

“Oh – so this is unusual -this means she’ll need to stay in for observation”

“No no – this DOES happen sometimes, she’s being having these for quite some time”

“Oh- so they are not well controlled” –

“oh, erm. Please don’t admit her, We just want her home”.

Not only did I want to stick around to be an advocate through this process -I also wanted to be there when the doctors came. I wanted to be there when they examined her wound. I wanted to know what their plan was. The problem we had was the surgeons that were working would have to prioritise emergency cases above us. The nurses continued to page the doctors – but by 18:00 there was still no sign. The sister came to the door and gave me a glance to say – go home. I kissed Annie goodbye and just as I got to the door one of Annie’s surgical team arrived.  We exchanged a few words -he apologised it had come to this and assured me it was going be okay. Then I was escorted to the door. Whilst washing my hands and binning my mask there was one more opportunity to plead with the sister not to admit her before heading down the corridor.

 Of all the things that have happened over the 8 years this was the hardest moment. Harder than waiting 5 hours for news of the first operation. Harder than the news the tumour had reoccurred. Harder than the news that the chemotherapy was no longer effective. I took a wrong turn and ended up on a different floor -with porters in full PPE pushing patients in masks and staff clocking off for the day. Back in the carpark we phoned Annie’s Macmillan nurse.  She put us at ease. She said the team would phone the ward and reiterate our preference. We went home had some tea and then returned to the hospital to bring some clothes and toiletries. I handed over the bag at the door – there was no way they were letting me in again. I could barely understand what the nurse said to me in our brief conversation. She spoke behind mask and full Covid visor.

Annie was nil-by mouth. If a slot came up in the theatre they wanted her ready to go down to theatre. They were also concerned because her temperature was slightly raised when she’d arrived on the ward. The temperature coupled with the seizures they were concerned she might have an infection. I wanted to scream – but “she’d just been sick- but you wouldn’t let her have a drink of water, but the ward was too hot, but she hadn’t had her usual nap this afternoon!! “ but the door closed in my face before I could open my mouth. During these strange times, the job of a nurse is not to bargain with family members at the front-door.

Once it became clear no surgical capacity was available that evening – they let her have some tea and toast. The following morning nil-by mouth started again. They put her on a drip of Anti-biotics.  She waited the whole day for a gap to appear. Early evening the surgeons returned = said they would get to her later the evening and to continue to fast/no water. Just as I was going to bed a junior doctor phoned me -we are going to operate tonight. At 2:30 am Saturday morning she was wheeled down to theatre. The procedure lasted just under an hour. They basically opened up the stitches and repaired any pesky holes in the dura. They cleaned it all out as best possible and sutured it back up.

When I spoke to Annie over Facetime on Saturday morning -she was in great form. The wound was no longer leaking. She’d had a huge breakfast of Weetabix and toast. It was a complete transformation from the person I had left 36 hours earlier. For the rest of the day she remained on an IV drip and got an early night.

It is not yet clear when they will let her home. Much of this depends on her blood pressure returning to normal (for Annie) and the blood and CSF tests showing any infection is under control. Our home set up and incredible support network means we can offer the care she needs so we’ll be doing everything we can over the next few days to ensure she can come home.

Although unwanted and unexpected, Annie’s stay in hospital has given us a moment to draw breath, to re-pot a few tomato plants and build some dens. We have a  pause in the visits and phone calls. It means when she does get out we’ll be refreshed and ready.

Have you got a hairdryer? (3/4)

Discharge means you leave the hospital umbrella and move to support locally. In our case it is jointly through three services: Macmillan nurses, district nurses and a private sector care provider paid for by the NHS/Local authority.  

The role of the carers is perhaps the easiest to explain. They are commissioned to offer 4 care visits a day – breakfast, lunch, tea and bedtime. Given Annie lives with her family she does not depend on the carers in the same way somebody living on their own would. At first I wasn’t quite sure what the point of the carers was. I wanted to make her breakfast, I wanted to help her get dressed, use the loo. You soon realise this is a very tiring thing to do, especially when you have a three year old who quickly clocks on that there is a new demand on your time. It isn’t unusual for Joe to shout “I need a poo” just as you are counting out pills or fetching Annie a drink. But it is strange to have carers coming in at first. After a few days it became quite normal and I learnt to absent myself- take a shower/read Joe a book/water the plants/go for a walk. Lots of people will earnestly say to you “Hey Steve, accept help” “let them take the strain”. Yes, yes,  I agree but it is not quite as simple as that. Let me explain.

Carers work in pairs – usually one man one woman. It will usually be the same two pairs, each calling twice in the day. But given the need for time off etc – it will sometimes be new people. They won’t know of what Annie can and can’t do. They are not a massive fan of the re-turn mo-lift truck thing and a baffled by the leg brace. It took a few days to fall into a rhythm. We know now to get clothes ready the night before, to have tooth brush, bowl for washing, when to bring the hairdryer downstairs, when to leave out some clean sheets.

On the best days, on the days we nail it,  Annie gets up with us -we all have breakfast at the table – then the carers come and help her get washed and dressed. We go out for a walk or inspect the vegetable patch. We have lunch together – and then the careers come to help her get Annie back to bed for a nap. At the moment Annie is best when she can have a long afternoon sleep free from visitations or calls from various health professionals. This also means we can have tea together and Annie’s mum can spend a couple of hours with Annie one-to-one while I put Joe to bed and I can watch mindless TV with Annie as normal (Friday Night Dinner and Fawlty Towers both regulars at the moment). This invariably means she sleeps through her tea time care visit and it means the carers can catch up with their other clients. As you’d expect they are fully masked up – so we have never seen their faces. They are great with Joseph – putting him at ease and asking him if it is birthday again today. He calls them mummy’s nurses and seems to understand why they are here and doesn’t seem phased by the masks.

When it doesn’t work so well is if they arrive midway through breakfast  or lunch, and as a family group we naturally abandon our conversations in the same way you do when the taxi arrives to take you to the airport. It is difficult to remain normal -Joe picks up on this flapping and finds the loudest toy to hand and starts to scuttle about under everybody’s feet. Annie doggedly chews her muesli and calmly sips her tea, seemingly unfazed as two masked carers wait on in the hall. Thankfully this doesn’t happen too often.

And then we have the Macmillan service. Their capacity to support us is bottomless. (I’ll no doubt write more about them in future blogs so will keep it brief here). Annie has been meeting with the same Macmillan nurse since last summer. They both have one son called Joseph and Annie is completely at ease with her, natural conversation over a pot of earl grey. The situation is different now. Annie’s nurse has to wear PPE and cups of tea are no longer offered or expected. But what Annie’s nurse can do is fix things, sort things and offer assurance to us all. A quick text to Annie’s nurse and the next day Annie’s GP, a Macmillan physio or consultant knocks at the door. It is an incredible service that combines a joined-up-ness you rarely see in hospitals and yet has the headspace to be compassionate. The Macmillan service works really well with the district nurses. They are incredibly considerate our space – they will always check if it is okay to visit and will work around our plans.

I feel incredibly lucky that we have this face to face service during this pandemic. As with the hospital staff and carers , they are great with Joseph. He’ll often become Doctor Joseph when they call – making brief and surprise appearances during their visit. It always helps to lighten the mood and try and make all of this a little bit more human.

In the next blog I will focus on an unexpected return to hospital.

Key figures and Withheld Numbers (2/4)

When in hospital Annie was under the care of her surgeon. She was on a neuro- specialist ward led by a matron/sister etc.  She was being visited by physios every day to work on the process of transition and how to move in the bed. When I asked the physio how I could shift Annie up the bed she said “ask her to move up the bed”. I hadn’t thought of that. Instead I was grabbing her under the arm pit and attempting to shove her northwards. It makes you realise how important that initial physio work is. They are not only keeping you moving, they are telling you how to move safely and how to ward off over eager carers/nurses from doing too much. It is about keeping as active as possible without putting yourself at risk. Annie being Annie, she loves a clear instruction a programme. Years of Pilates is coming into its own right now as she understands how to move and maintain her core stability. The stroke means balancing can be tricky – the physios help you to find your centre, sit straight ready to transition.

As we started to move toward discharging from the hospital the Occupational Therapists, who share an office with the physios, would normally come to assess the home to see what you might need. With the current situation this had to be a virtual visit. Armed with a tape measure I was measuring chairs and steps, door widths, radiators and spaces. Then their role is to put in the order to the Equipment services folk. Where we live this is a matter for the local city council. What I learnt from this process is that although we were using video calls to do training and home assessment – these systems are mainly based on people phoning one another and leaving answerphone messages. Given our house sits in a mobile signal blackspot perhaps the most stressful thing about this discharge process was perpetually missing calls and trawling through answerphone messages from “Withheld” NHS and Council numbers” with questions like – will you be in? = or can you call us back on 0161 228 5blur8blurrryshat,*crackle* thanks bye! To answer a few questions.

If we want updates from the hospital much of this is done through phoning the ward number and hoping they will pick up. If you can speak to the nurses looking after Annie  that day you strike gold and you can usually get 5 minutes to ask some questions. Inevitably one will think of all the important questions once you’ve hung up. But you have to be proactive because they will not phone you.

During this C19 lockdown one of the most reliably sources of information and assurance has been through Annie’s key worker/ specialist nurse -who is a nurse practitioner in the brain surgery team. We find the most successful way to communicate is email. This nurse was working between hospital and home but was online most of the time and able to access notes/assessment/results and also had the surgeon on speed-dial when required.

You also start to realise how hierarchical the NHS is. There are processes and timescale. There are ways of escalating and speeding up processes where necessary. You realise that people are incredibly compassionate. So many of Annie’s immediate care team had small children themselves. Everybody was pulling out every stop to get her back in time for Joe’s birthday. Where necessary the lead consultant can throw his weight behind the plan and it clearly oils the wheels. Yet there is also a firewall that surrounds him. When he wanted to meet with me to discuss the outcome of the operation the communicated with me directly through mobile. In a system based on “Withheld numbers” but it seems inappropriate to contact him when at our lowest ebb. We fall in line and go through the suggested channels.

Everything I have mentioned so far is how we are supported remotely by the hospital. In the next blog I will focus on the support we have at home.

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!