Brain Freeze

Royal Wedding Day - when my oncologist suggested he would be working on that day, we thought was it an ideal day for a trip to the hospital...no traffic, no waiting around in clinic, easy parking etc. We could get in and out of Dodge fairly quickly.  What I failed to notice was the timing of my appointment - 11am - and the timing of a certain other girl's appointment at the altar.  And of course, just because we were high on the heels of our own marriage, it did not mean that the nurses and staff on duty that day didn't go all out, baking cakes, bringing food, creating a raffle, etc.
 
We were due for lunch at my "second" parents house, and as we sat around waiting, I remember feeling really uncharitable because there were women there who can only sit for hours while they wait for toxic chemicals to drip through their veins. For two hours, we just sat and waited until our turn; got the drugs, got the instructions and then toddled off.
 
Right now, at the time of writing, that just serves me right.  I took the chemo and thought I was fine, dealing with it just like I had the radiotherapy, but that so far from the truth it is just not funny.
 
I started my 5 days of pills that same day, 29th April, keen to get started. After about 4 days got some stinking headaches and started to lose my speech and motor skills again just like I did in February.  I did the right things and spoke to the oncology team, we raised my drugs doses "until the symptoms subside" and to be honest, I just carried on regardless, popping paracetamol and codeine occasionally.  However, I neglected to ask what I should do if my symptoms got worse...and they did.  Early Sunday morning (8th) I panicked, thinking I was having seizures again.  
 
Cue ambulance, A&E and a brain scan, showing a swelling around the size of an orange: that is to say, the entire available A&E staff watched while we looked at a picture that measured 9cm x 6cm of swelling. You know your brain normally has that sort of worm-like look to it? Well mine looked like fat slugs! I listened as I was told there was some evidence of bleeding and again, I sat at there thinking "you'd imagine something would hurt, wouldn't you?"

I was scared.  Actually for the first time I am scared, properly. I think.
 
The A&E guys  doubled my steroid dose as my treatment.  The on-call registrar offered me a bed, or to go home, and the measure of how scared I was is that I stayed in the ward that night so that I could see my oncologist.  He seemed unconcerned, telling that the A&E comments were unhelpful.  It's called "pseudo disease progression”. We made a plan to reduce the drugs dose over the next couple of weeks yet again, and off I went.
 
And then, that same week, that my maternal grandmother (last grandparent) suddenly died after a lengthy period of her own in hospital. I was living with her when I got meningitis all those years ago, and we were once very, very close.  I called her Mum, and I'm ashamed to say I had neglected her recently.  I missed the funeral because we were heading off for some experimental treatment which I was hoping to get in involved in.  
 
That was a trip away from home for 5 days, and was an absolute whirlwind and completely overwhelming.  Headaches became daily, though I needn't think too much of it because of excitement of the trip.   As it happens, I had an MRI scan, and they measured the swelling in my brain too - 100mm x 62mm x 58mm - one week after the CT scan in A&E.  So...something definitely not right going on up here.  We got back home and I realised that I had never asked what I should do if my symptoms got worse, let alone not subside.
 
Add it all up, and it's a far cry from the fantastic wedding day we had, and I am sitting on 4 weeks of headaches, loss of speech, loss of motor function, inability to think properly - the fog came back.  I managed an email conversation with my oncologist and he's bumped my steroids to an even higher amount; though I am pleased to say my blood sugars are normal (low risk diabetes), blood pressure normal.  But of course, I am trapped in a beached whale suit, and I have grown both beard and moustache; I have become terribly weak, stairs are very hard work, but I know I must keep moving. I'll do anything to reduce this swelling though; I still can't think straight, and I still can't read a bedtime story to Darcey.
 
But you know what the worse thing is? I have seen enough hospital dramas to know that a massive swelling or bleed in my brain will kill me before the bloody tumour does.  Now THAT scares me.
 
This is hell.
 
You know there is something afoot when Mrs Manson goes quiet...and now you know what and why.
 
We are due off on our honeymoon for the spring bank holiday, and I am due for my next round of chemo at the same time.  I am going to clinic on Friday, and for the last week and a half have taken the unprecedented step of completely going to ground and not seeing anyone or doing anything.  I do not know what is going to happen next.  It is clear to me that I still have slugs not worms in my head and I really need to rebuild some strength and learn to speak again.  
 
So, thank you for all your messages and thoughts, they mean so much to me. As I said once before, if I don't answer, it's because I can't. I am fed up now, I am not in control and I need to be so much more than just this swelling.  
 
Back soon!!

Easter Holidays

♫♫…there's nothing sweet about me…♫♫ .... Gabriela Chilme

A few words / phrases which have been used to describe me over the years – feel free to add your own:

·         Assertive

·         Energetic

·         Bossy

·         Independent (fiercely)

·         Elemental

·         Takes no prisoners

·         Straight talking

·         No nonsense

·         Irritating

·         Loud

What?

You think that was just before the tumour?

Yes, other parts of my personality have been described as loyal, generous, loving, funny…but  when did people start expecting me to be nice? I know it is really bad of me to say this, and I know I should be more grateful, but I’M NOT DYING YET, people!  I haven't had a personality transplant, I'm still me.  Yes, I will be shameless when it comes to playing the "dying" card….but hey, so will you when I'm in the car and we use my blue badge!

I may have been filling my time baking bread and organising a wedding, but I have too much time on my hands and too many drugs in my system to be all sweetness and light. I'm the same selfish and vain individual I always was.  The rest of my brain still works, though I think it might be in serious need of some stimulation.  I'm not physically weak or incapable yet. You don't need to carry my bags; you don't need to get me a glass of water when I'm lying like a beached whale on the sofa; you don't need to wait on me hand and foot. In answer to your question, Yes, I'm tired - but apparently I'm supposed to be!  How bored with it all are you going to be when I defy all the odds and I'm still lying around like the Queen of Sheba 3 years from now?

I apologise.  I think I'm suffering what Sarah laughingly calls "roid rage".  I’ve just realised I’ve been on this rant before.  I'm sick to my back teeth of steroids. I did my best on my wedding day, but I still had a moon face and dough-girl silhouette; it doesn’t matter how many times you tell me I’m still me, I still don’t recognise my face in the mirror.  My fingers are so swollen, I couldn't and still can't get my rings on; I'm retaining so much water around my ankles and knees, I can't wear trousers I bought a month ago. I have a lovely layer of fine hair growing around my three necks, and first time in my life I had to wax my lip!  I want to cry one minute and shout the next; I want to see everyone, but I want to hide away from the world.  Oddly, I couldn't care less about my nearly bald head, but I really would like to wear my wedding ring.

Common side effects of Dexamethasone

·         Indigestion or heartburn

·         Increased appetite and weight gain

·         Swollen hands, feet or ankles from water retention

·         Increased risk of infection

·         Changes in blood sugar levels (risk of diabetes)

·         Changes in mood and behaviour

·         Difficulty sleeping

Rarer side effects

·         Eye problems such as cataracts, infections or glaucoma

·         Changes to your face (Cushings syndrome) - you may develop a swollen or puffy face, dark marks, acne or facial hair

·         Muscle wasting - your legs may feel weaker and walking or climbing stairs may be more difficult.

·         Weaker bones due to bone loss (osteoporosis)

·         Raised blood pressure

Of the list above, I'm suffering most of the side effects, though don't appear to have any problems with blood pressure or indigestion, and I am reducing the dose.  But all this is preparation of course....29th April is the first day of my new chemotherapy treatment. 

It will be my luck that my new five day cocktail of drugs will cause a load of swelling, and I will end up on yet more steroids.

Roll on next week......