Merry Christmas

Christmas Day. A lovely day. T woke up at 8.40! And was generally lovely. She got her Hot Wheels from Father Christmas like she asked!  There was an awful lot of Frozen stuff too..... Got T and P a joint present of a domino rally. The idea was good, the reality was she kept knocking them down with her dress, or with her foot, think P was getting exasperated but he was great all day. We went for a walk to the park before my parents got here this pm. That was a good thing. Went to a different park yesterday and it made my spoons/energy increase. Exercise is the key. 

Managed a full day with no rests and now it's 11.15pm and I have terrible heartburn even though wasn't overeating or doing anything I wouldn't normally do. If this is a treatment side effect then so be it. My treatment buddy Rosie, who is at the same stage as me, lives in South Northampton and is 31, (!) her sister is a doctor and says it's ok to take Gaviscon. So poor old P went out to get some from the garage. It hasn't gone though. 

This morning I called Mum on the phone, and though I see her most days, that's the first phone conversation we've had in months. Think it may have made her day. I was struggling to know what to say, so just talked. I know that doesn't make sense, but it was hard. I seem to have forgotten the art of conversation. I blurt things out when before I wouldn't have done. 

Anyway, no radiotherapy today. A day off. 

More hair coming out. Crikey there's a great big hair monster lurking in the food bin. 

New hair

Here I am with my new hair on Saturday. 

And here it is today Tuesday. 

And here it is from the other side.... Wait for it....

That's steroids for you. In terms of the fat face anyway. 

Gone.

My hair is falling out at a rapid pace. 

Last week I was tugging gently and it just came out, and it was long then. I spoke to the radiographer and she said well your face is puffed up from the steroids, it won't make much difference to just go and get it clippered if it doesn't cause your scalp too much bother. Is my scalp going to give me much bother in the next few weeks I said? Yes she said. Oh. 

So on Saturday I called Shabby Chic and said I KNOW it's the last Saturday before Xmas but can you fit me in? And they were so kind and said yes. So off I trotted expecting to have it shaved or clippered and thinking I was going to be ok with this. I sat in the waiting area which is so familiar and so many hours have been spent deliberating what to do with my hair and looking at Pinterest and then a pic popped up of Liz a Taylor with her head shaved on the front cover of Time magazine after she'd had brain surgery. And it moved me very much and I got a bit tearful. Then Jenny the hairdresser came over and she got a bit tearful. And her daughter Georgina took charge and got us some tissues and we started and it was ok. I didn't have it shaved I had a half pixie cut. One half of my head is almost bald now, but I left with the joy of having a new style! 

They didn't charge me. How very kind is that? 

Yes that is the food bin. 

It's organic isn't it? 

Going, going....

Manky hair.

Look at it. Manky. It may be the last time I put a pic on with it there though. 

Normal.

I feel normal. 

Well normalish. 

It's 7 and a half  weeks post surgery. I am getting my energy back slowly. Yesterday I only needed a little lie down on the sofa while T and P played Lego. Then we went for a walk and I didn't need a stop. 

Today I went for a walk on my own to TK MAXX. Whooooo. I managed to do some shopping too. Without it all seeming a bit much. And I recorded a pause for thought for work. And called and spoke to Carol AND IT about my password. 

So where are we? 

2 weeks into radical chemoradiotherapy. Unscathed so far. No sickness. Though am not on the ketogenic diet anymore. Managed 3 weeks. Currently stuffing carbs into my face like there's no tomorrow though making sure am getting plenty of fluids and fruit and veg too. 

Scalp hurting on the top of my head. 

Aware of bowels!!

And very aware of my hair. I am thinking I might have a problem with my hair coming out. How will it be? It's likely to be a patch of hair on the left hand side. How big? How will it impact my head? Will I be able to cover it up? All these questions running through my head. 

Oh the radiotherapy itself is simple, I go to a plush clinic every day, the same nurses come and take me through and I lie on a clinical bed, they ask me to tell them my date of birth and clamp me in to my mask. I do not like the feeling. It is hard. I can't get comfy. I am tense. Itchy. They say we're leaving the room now and put my music on. 5 minutes pass during which time I struggle internally with using the phrase 'peace and calm' from my meditation and am aware of my heart beating, thudding and the urge to swallow and move is huge. Then there's a big crescendo and I hear the radiographers coming in, they unclamp me and I sit up. Always a bit disoriented. With a bit of a localised headache. Only done 10! 20 to go. 

Don't stress...

It's been a funny few days of feeling .....funny. 

i dont know how to stop the stressing .

my head is full of stuff, lists and things to do and meal plans and got to do thises and then i had my radiotherapy mask made and i am now stressing about who to put on the rota for that as what if someone really really wants to help out but i dont ask them and they are offended, and when they say they can do wednesdays but not fridays what if i had them down for fridays and ......

Andie says she will coordinate it like she did for her dad. But its not just the appointments, its about Tilda and seeing her and managing that .

my head is aching and my heart is beating too fast. the gp on monday gave nicola and i some light relief when he was pretty much useless, what with his mumbled talk of well we could do this, but medication is addictive and youre on a list for cbt but it might be a long wait and....

then becki took me to the macmillan clinic to see the prof my oncologist and they were playing mousse t and horny in the the waiting room.

the diets going well though. apart from the waking at 4am and stressing about what we are going to eat. coconut pancakes? cloud bread?

stop stressing and relax. how?

 

i have learned that i have more energy if i am outside. and a walk is good.

i have learned that if i have a seizure then its not the end of the world. yes i had another one when clare came round after a very busy and stressy day. i have learned that i can feel them coming and need to rest  

it has been a long week and i am not any further on. i am starting to feel trapped within this diagnosis and small in this existence but then i have 6 weeks of treatment to come, and then 6 months beyond that. p says thats a state of mind. he has no idea what it feels like to be in my head, but he is trying. He has been out this week doing things, being at the trade show, seeing clients and being with people, but my life has become small and about little tasks, gettng to appointments, looking after Tilda. these are the things i am responsible for, and when you get down to those, no wonder you stress. we used to joke or get annoyed with his nan for wanting to plan everything about our visits, from the chicken to the what time are you leaving, i understand now, that gave her stress as she had nothing else to stress about. 

lack of punctuation cos of tiredness by the way.

No cake.

I love cake, me. 

I love nothing more than a great big bag of pick and mix, a biscuit here, a slice of cake there. Some bread fresh out of the oven. A toastd teacake! Afternoon tea....oh how I was planning a tour of afternoon teas around London for my bucket list!

So now I have to give it up. 

The benefits of a ketogenic diet when you have brain cancer are huge. 

Glucose fuels cancer cells so lowering the glucose levels in your brain can only starve them. 

Can I do this? In the words of Bob the Builder, yes you can.

A ketogenic diet along with supplements are the best chance I have of taking control of my cancer and helping me when I have chemo and radiotherapy. 

There are some who say well if you're going to die, you might as well die doing something you enjoy. I don't necessarily subscribe to that idea. I want to live. 

Going to talk to a lady tonight who's a year on from me,and who on the day after diagnosis changed her diet and takes supplements. I spent £100 on supplements today. 

It is no surprise that I am cloudy of head today. I have my period. I am craving sugar and I have eaten carbs all day. The connection is there. I am looking at you walnut whip. 

When to start? When the house is clear of sugar? Or L brings me the cake she's promised? Maybe. Or maybe there's no time like the present. I have cancer already. It might be growing inside as we speak. 

Cracking on.

It's 9pm and I have been here on the sofa all evening, starting to feel like myself. Been doing some online shopping, watched Don't tell the Bride, laughed at Hoffy's expression, talked to Paul, eaten dinner ( with gusto, those steroids keep on working their magic).  

Yet I am dying. 

This is weird. 

Earlier today when Nic came I could barely move along the road, I was so weary. I could feel myself shaking with tiredness and needed to have regular lie downs. I had a bath, and that was an effort. 

Now? I could go out! 

Maybe this is the start of feeling better?

Maria came round and bought me the most beautiful hat. It is so me. It's perfect. I didn't want to see her so i stayed in the living room while P and T answered the door. I'm a bit scared of visitors to be honest. 

Tilda was fab today, running up and down the hill on the way to school, on the way home, the getting changed when we got in like I asked her to, and then playing with her little ponies and getting me to plait her hair and being generally lovely. We held hands at TV time. 

Mum asked this morning if she could call me over the phone when she wasn't with me,and would I be able to cope with that as she felt lost at the weekend. I said no and cried on her shoulder and clung to her and was a shell of myself. That was 12 hours ago. 

Weird. 

Oh yes, it's a GBM4.

Oh did I forget to mention?

I have a diagnosis. It's a Glioblastoma, GBM4. Was likely to be a low grade that became a high grade. The doc says that's the best way round to have it.... Some comfort hey?

It will grow back. There's 95% removed but we'll be treating the rest and the likely cancerous cells floating around with some chemo and Radiotherapy. 

For those who know what GBM4 means, it's ok. I mean I am ok with that. Ok I am not. I can't quite believe it to be honest. 

How do I tell people? To tell or not to tell. To take away their hope seems cruel. But I also don't want to break their hearts. 

Seizure

Today I had a seizure. 

It was while my friends were here, one of them is a shiatsu practitioner, the other one was holding my feet and rubbing them at the same time. P was due home to get changed for a funeral and I knew he'd walk in and think what a load of nonsense and be a bit bemused so I was waiting for that to happen and worrying what to say (couldn't say anything) and feeling a bit stressed about it all. Then the foot rubbing became annoying and I'm forming the words in my head to say "please stop rubbing" but they're not making it to my lips. 

This is a common problem. The words in my head are not making it to my lips. They're going round and round in my head, forever silent. I can have a phrase go round in my head. A thought a feeling, that just doesn't make it out. Oh how this frightens me. To be locked in with my own words. 

So I had a seizure. The feeling of not being able to control the noises my mouth makes. The knowing in my head that this was happening and not being able to control it. That Andie and Em would not know what to do. That Em had to get P from upstairs, Andie said he would know what to do. He's never seen me do this, I am crying in my head! He came and held my hand and Andie was saying if you can hear me Helen exhale, and I am making vowel sounds with my eyes closed and I can't make it stop. I can't make it stop. 

P is under the impression it's a panic attack. I have no idea what does this to me. I think I got a bit stressed and didn't know how to process it so had a seizure. I was very upset, this means I am going to have more. I guess I need to embrace that. P spoke to the neuronurse as I did, who have upped my anti seizure meds and gave him reassurance that it wasn't the shiatsu that brought it on. 

I have got to get my head round this. The thoughts in there are not coming out. 

Posted on the brain tumour page and these replies helped;

Hi Helen. I can only comment from my own experience and am by no means an expert but please try not to worry. I returned home on Wednesday from my second resection. I had my first back in march followed by radio/chemo then 4 chemo cycles before I had a regrowth and had to go back for more surgery but what I do know is that being 2 weeks post op your going to still be at increased risk of seizures for a few more weeks just simply because you've had brain surgery. After my first op I was told that the increased risk usually lasted about 6 weeks just while you recover but like everything, every individual is different so don't quote me on that, the six weeks I was told is just a general figure. 

And

Hey Helen! Congrats on that 95% !!! That's brilliant.

The seizures are most likely the result of scarring to the brain tissue: it's angry about being jabbed at, so it will probably be a bit crazy for the next little while. Scary (scarry?) :) , but not unusual at all. Hopefully after a short time things will settle down and the meds will keep things under control for the future. As Dave says, it's different for every person. It really is! 

For myself, I'm on anti-convulsants for life: my tumour caused some wires to cross in the first place, and that was that. In my case, removing it didn't untangle those wires. My brain then gets extra annoyed after being picked and scraped at during surgeries (that's where you're at right now, post-op), so it throws big electrical parties to amuse itself until it heals or just can't be bothered to act up anymore. Or until the right level of medication is reached. They've been raised a few times since  (**sometimes** triggering more seizures for a few weeks, but that's just a temporary and uncommon side effect of putting the dosage up. Again - Dave's words of wisdom apply here, so don't worry! Just fyi for peace of mind in case you're anything like me!).

So, it will take time, but you'll adjust to whatever the circumstances will be. I know all too well how frightening any kind of seizure is, and I still don't quite know how to deal with them. I do get sad sometimes. And I don't want to accept it. But letting family or friends know how to identify your auras and/or seizures (i.e. whether they involve convulsions, or are non-convulsive and not visible to them, like the aphasic episodes you describe) is really helpful for everybody. Seeing them, but also knowing how to react and what to do. It's a source of comfort in general - less stress and less fear that way. Combine that with the right meds, and seizure control gets much easier. Now, keep healing! xo

The Foot.

Oh my heavens. 

The right foot was paralysed by the surgery. The neurosurgeon said he had high hopes for it moving again but the anaesthetist said she didn't think it would. Naysayer. 

13 days after surgery, when it's all just not working, and I am walking on it yes, but it's just not doing anything, and I had opened the drawer of my beautiful shoes only this MORNING and thought 'won't be needing them again' and googling 'best shoes for foot drop'....

It only goes and moves. 

Tiny steps. Tiny bend of toes. It's not like I ever lost feeling. I just couldn't move the ankle or foot with my mind. 

And now I can. It's slow but steady. And I have to concentrate. And it's not quite there. But it's moving. The neural pathways are working. 

And with the biopsy results appointment tomorrow, where am expecting the worst kind of news of aggressive cancerous tumour that's still in my head, these are the kind of brain healing amazingness positivity I will hold with me as proof that you just don't know what's going on in your body. 

Friends-the one with Monica's broken dinner service

I think it's the drugs. 

But there's a bit in Friends where just for a moment I laughed out loud very hard. 

Phoebe and Joey are setting up the thanksgiving dinner puddings and said we thought it'd be nice to use the better dinner service for pie. 

Yeah, said Monica, then maybe later we can go and blow our noses on my wedding dress!

Oh I loled. 

P has been amazing today. First day at home and I have pottered and not known what to do with myself, pacing from room to room and forgetting what to do from one moment to the next. It's been work in progress just getting up.

I have found great comfort in music though, is causing emotions in me that I haven't felt listening to music for years. 

Folk. 

Yes that right. 

Folk. 

I haven't listened to music like this for a long time. Show of Hands are the band of choice. Can't tell you why. Deacon Blue's new one too. It's just moving me. I feel like it's enough to just listen to it and feel calm inside. And sit. And be. 

Weird. 

I'm a folk fan now then. I blame last nights long journey home from the hospital for that, listendto all of the r2 folk show. 

Tonight was scared of how I'd feel when P picked Tilda up to bring her home from nursery. But she was no different with me, that's the resilience of a 4 year old. 

Wow. That's a scar....

Lucidity.

Because I am lucid with my written words this may make you think I can talk easily. The difference between speech and written words in the brain is huge and I have had the tumour removed near my speech centre of the brain and it is bruised. Therefore I am finding it difficult to put things into words and talk out loud. I am distressed by this but it won't stop me writing.

It took Paul to point this out and it gave me great comfort today. I am more lucid than I think I am.

My old teacher Mrs O Leary always said she thought I'd be able to write a book.

Maybe this is the way forward for me. It may take a while for the swelling to go down in the speech area.

I am finding it difficult to talk to even the doctors and Paul and Tilda. I feel like I am a spectator on life only able to comment on things and not join in.

Tilda came in today and I was struck by just how grown up she is, and she's just 4. I struggled with the chatter and to know what to say to her and Paul when it is all up here in my head not knowing how to come out. She must wonder what's going on, so must P, but I can't tell them. It's not possible. It's forever stuck in thoughts and feelings lost. I will think of these days as the lost days.

The steroids worry me though, as to how they can make you feel so very out of yourself.  I wrote him a brain addled steroid induced email at midnight last night that I hope he'll not ever read.

Oh Rod, Jane and Freddie how have you done this to me?

The Noggin Bloggin.

So. Here we are. 4 days post awake craniotomy and it feels like I am me. A little less of me to be honest. The bit in my head wrapping itself round my brain less of me yes. The bad bit. There are still two more bits in there. And the threat of recurrence. Oh. But for now this is where we are. A bit less of the bad stuff that's been growing inside me without me knowing. My tumour! Funny how I didn't actually think I'd be able to say that. Shall we name them? The bit that's gone and the bits that are left? Rod, Jane and Freddy. Rod's all but gone, jane's in the middle next to my hand function, and Fredddy is in too deep. Like Genesis. Oh the drug addled brain is making these bad jokes happen.

The story of Rod, Jane and Freddy.

Today it's about trying to function when the steroids make me feel rough and agitated and sleepy at the same time. Negotiating visits from Paul and lovely Mouse. Trying not to cry when I see Mouse. Trying not to get frustrated when NOTHINGS HAPPENING WITH MY FOOT OR THE REFERAL.

Trying to cope with another day in the John Radcliffe.


 Let's not mention the most pressing need of the day, constipation. I have to get out of here today.