Fluff's Journey : And So my life extending treatment begins

Operation over, delivering bad news to family and friends, considering our future, Wills, this truly was a ‘meltdown moment’ for us but like a lot of things right now they have to be done and there is no putting them off. On top of that I’m living in ‘no man’s land’, I’ve been diagnosed with an aggressive & incurable Brain Cancer, my life can only be extended by treatment and yet I cannot start my Radiotherapy and Chemotherapy programme until my skull has healed and Dr Haylock said this would be six weeks! I’m a mess inside! What damage is this beast doing whilst I cannot have any treatment, will it make things worse, has it grown back already? I’m still on fuzzy drug and steroids; steroids are an anti-inflammatory drug, your body produces steroids daily naturally but in some cases not often sufficient to meet severe conditions and they can help, they’re a drug to take seriously, you have a card to carry should you need to tell anyone or if another Dr is treating you. You cannot just stop taking them you have to be weaned off them slowly, I’ve got all that to come.

I tried to keep busy and there were more hospital visits we met a fantastic Specialist Nurse in Dr Haylock’s team, her name is Helen she’s been a rock throughout for us, she guided us through the early days, we had a direct dial and a bleep number for emergency times.

Monday 2^nd September we popped into Clatterbridge I’d been told about a Wig Voucher, I’d been told about head scarves and lessons on how to wear & tie them, my hair was going to be falling out fact, I’m vain and I want to look my best even during treatment, it was a chance to catch up with the MacMillan Team again too. I was also told about a support group called “look good feel better” holding classes on how to apply makeup during and after treatment, some people lose their eyebrows, the ladies amongst our readers will appreciate any help at the best of times is fantastic but right now a half day course and leaving with a goody bag of samples from large makeup companies does wonders for your morale.

Wednesday 4^th, Helen called and we chatted she asked how I was feeling, how I was coping, did I have any concerns? I explained the things that I considered relevant, I was struggling to sleep, I was having memory lapses, I start a conversation and boom! A word just won’t appear, how stupid am I? Helen reassured, sleeping was probably the high dose of steroids, the memory lapse could be post op swelling still. Helen then told me that a provisional date was set to start my treatment, a week today, Wednesday 11^th September.

In between then I would see Dr Haylock and he explained I’d have blood tests during my treatment to monitor certain elements of my blood, things need to be finely balanced during treatments, Radiotherapy can have differing effects to Chemotherapy and I was having both treatments. I’d be weighed too, the type of Chemotherapy I was to be on was going to be a tablet form, it’s called Temodal. (The Generic name is called Temozolomide) Your ‘bespoke’ dose is based on your height and weight.

I need to waffle on Temodal, like many we’ve dropped money in charity buckets, we contributed to TV appeals, we don’t often get to see or take the end result of of research, in this case, Cancer Research. Temodal/Temozolomide started its life thanks to

pioneering work from a Professor Stevens at Aston University in Birmingham in the 1970’s it took ten years of hard work with other colleagues and ‘Cancer Research UK’ funding to convert CCRG81045 to Temozolomide. Please read this article for the full story,

http://scienceblog.cancerresearchuk.org/2013/07/18/the-story-of-temozolomide/and remember next time you see a charity bucket or appeal every penny does count.

Right, it’s Wednesday 11^th September and I’m at Clatterbridge for the start of my treatment. Andy & I checked in at the Radiotherapy suite and a couple of minutes later one of the radiographers appeared she’d got a small pot with her, in the bottom were several size and colour pills, The Temodal. I had to take it 20 minutes before my treatment start and well, here we go, I was given anti sickness drugs but it was suggested I saw how I went on without them, I coped fine but you may not. You should handle Temodal capsules with care, as a precaution always wash your hands after taking. With the aid of a cup of cold water, my life extending journey was beginning, I’m relieved, I’m apprehensive and yes I’m scared but there’s no alternative here. The short walk in to the radiography suite treatment room was just myself and my radiographers, this stuff is radioactive, as patient you have to receive specific pin point accurate doses but no one else can be in the room with you.

Not a huge room but well lit and the team offer you the option to have mood lighting, you could have music on too, they truly want you to be relaxed as possible. There was a treatment table in the room and my new friend ‘The Mask’, my personalised ‘very attractive’ mask was waiting for me. I’m invited to sit and then to lie on the table, you wear whatever you want to wear, there are no hospital gowns or any levels of indignity, you are treated with the utmost of care. There are two radiographers with you at this point and they’re very reassuring throughout. The mask was lowered over my face and I heard the clips click into place. There was then what seemed like five minutes of setting up the machinery the ladies worked as a team double checking the settings. I’m lying there taking it all in through my mask, my steroids had put a little weight on to my face and so the mask was a bit snugger than originally planned but better too tight than too loose, I ended up with a few patterns on my cheeks, chin & forehead, don’t worry they soon disappear. The radiographers left the room going into their protective booth keeping them away from the harmful rays. The girls could still see me, I could see the back of my eyelids.. heehee

One of the team spoke to me via a microphone asking was I ok? Then told me they were to start my first treatment and if at any time I had any problem I was to hold my hand up, I never had to during six weeks of treatment. The girls explained the table would move during the treatment and this was normal, the machinery remained fixed the table moved you to the right treatment location. So the first treatment beam was being applied, you cannot see it, there is little noise either, the table moving up and down and left or right was bizarre but not frightening, it’s all quite tranquil, above all you do not feel anything. A minute or two later and the girls are back in with me a few more adjustments and double checking their notes, they ask me how I am, I’m fine and out they pop again. “We’re starting treatment two now Julie, same again hold your hand up if you need us”. The number of treatments you have will vary by patient I can’t recall precisely how many I had but it wasn’t more than four. At the end of the treatment, the girls were back in with me, my mask was unclipped and fresh cooling air hit my rosy cheeks. They sat me up and my legs dangled off the table and I regained my composure, they checked I was ok and then waved me on my way with “See you tomorrow Julie”. I’d got six weeks of this Monday to Friday; the chemotherapy was seven days a week so in total I was to have 30 radiotherapy treatments and 42 doses of Temodal.

Andy was waiting outside for me and we headed home. I’d been told to watch out for any side effects, and to call if I was having any problems, I had some tingling later in my left hand and flushes to my face & chest area. Later on that night I had tingling in my left fingers and a little numbness in my left elbow and forearm and I felt slightly nauseous but I was never sick. Symptoms subsided and we drifted off to sleep, I slept ok.

So this was my daily routine now. Once a week I’d see Dr Haylock for a review, I’d have blood tests done, a couple of weeks in he advised my Neutrophil levels were low, low enough that a planned increase in my Temodal would be delayed. Treatment impacts on the blood and Neutrophils are I understand the good guys in our white blood cells that help us fight off infection, too low and you run the risk of contracting pneumonia, could result in hospitalisation and being blunt pneumonia out of control can kill. You can be blood transfused in some instances (I never was) replacing your blood with fresh cells but it’s all extra stress when you least need it. Thankfully I never dropped further but equally my cells didn’t recover enough to have the Temodal dosage increased, besides that my treatment ‘regime’ went perfectly to plan.

Tiredness kicked in and on 25^th September my hair started to fall out! My beautiful ‘crowning glory’, my beautiful long hair it was going, yes, I cried, I’d previously lost my hair after surgery around 10 years ago, seems my hair doesn’t react well to surgery, it must go in to ‘shock’. Thankfully my hairdresser Jeanette (Jen) supported me through the first time and has over the years become a dear friend, she even travelled across country to our wedding to do my hair on my wedding day, she’s been a true rock and friend, there is no nonsense with Jen and with this latest news we set about cutting my hair down to a sensible length in a style that would suit and something if the day came could be hidden under a wig or two.