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Saturday, 22 November 2014

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.

Friday, 14 November 2014

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. 

Monday, 10 November 2014

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. 


Friday, 7 November 2014

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. 


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. 


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

Tuesday, 4 November 2014

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.