HALF WAY THERE!

3 DOWN – 3 TO GO!!!

I had my third dose of FEC chemo today, at my local hospital which will be my last visit there.  The next 3 doses are a different drug called Tax, which is stronger and there’s a greater risk of side effects as they give it to you, so I have to go to a different specialist Cancer Unit for that.  I felt emotional about leaving the safe, familiarity of my local chemo unit – I am wondering how the next 3 doses will go and whether the staff will be as friendly, helpful and reassuring as those I have already experienced – let’s hope so!

This dose went well, the only slight hiccup was the veins in my hand are bruised from a previous blood test, so for a while the nurse wasn’t sure where she could administer the drugs, but she found a small vein and with the help of lots of heat pads, the drugs went in smoothly and relatively pain free.    I’m learning something new all the time – must make sure all future blood tests are taken from my arm, well away from my hand.  Sounds obvious now but it’s easy to just assume all the nurses know exactly what you are going through and would think of these things, but they don’t.

My top tips for receiving your poison, as comfortably as possible are:

·      Drink plenty of water the day before and that morning;

·      Wear warm layers of clothing – your veins respond better if you are warm and hydrated;

·      Make sure you do a last minute wee just before the drugs go in – it can take a while for them all to be administered;

·      Suck on an ice pop or similar, it should help to minimize any sore mouth problems after;

·      Try the cold cap for your first session – even if you only wear it once, as I did, you can say you gave it a go.  I’m not bald yet and I am sure that wearing it that one time has enabled me to hang on to my hair for longer.

Talking about the hair – everyone is different but if you are going to try the cold cap, I would highly recommend getting yours cut into a short elfin style BEFORE you start treatment.  I say this because I experienced considerable hair thinning just before my 2^nd dose, which lead to me getting it shaved.  My hair was in a chin length bob before and as it thinned it gave the impression of losing LOTS of hair, however since shaving my hair and stopping with the cold cap, the hair loss has slowed down, so maybe I was a bit hasty.  If you get your hair cut short in the first place, this will help the cold cap do its job better,  make your hair easier to look after and any thinning you do get will not look quite as dramatic if its shorter.   Thus avoiding any knee jerk reactions like shaving your head!

I am happy with my new look but in hindsight I think doing the above would have worked better for me.

Heard some excellent news today!! I don’t read the papers but I hear there has been a major breakthrough in Breast Cancer research.  The future looks brighter for people like me – read here for more info.

http://www.independent.co.uk/news/science/genetic-test-could-pave-the-way-for-breast-cancer-magic-bullets-7658168.html

Also on another really positive note, so far my Race for Life Team have raised an enormous £2,095!!! I am so delighted, it means so much to do something worth while.    I really do need to get out there and start training.   Walking every day, at a good pace is my aim – just wish the bloody weather would dry up.

I am well aware that the single most important thing I can do to help myself beat this thing – is exercise!  The chemo side effects keep putting me off, but I think I’m just gonna have to kick them into touch by getting on with it!

Chemo - It's a Rollercoaster ride!

It’s now 3 days since my first chemo session.  Looking back on it I’m thinking it wasn’t that bad.   The actual administering of the drugs by intravenous injection took about 30 minutes with the nurse slowly pushing in the plunger on each syringe to allow the drugs to mix in with the saline solution being fed into my veins.    The drugs had been kept in the fridge and some were coloured red.  This definitely looked and felt like poison being pumped into me especially as I could feel the cold creep of it spread up my arm.  Not very nice, but essential nonetheless.   The veins in my wrist started to ache and hurt a bit so the nurse laid a heat pad over my wrist which really eased this discomfort.

The worst part was getting used to wearing the cold cap.    Before putting it on you have to make your hair wet with leave-in conditioner, this helps the cold to get to the roots easier.    I was sat in a very comfy chair, with special squishy seat pad, I would think specifically designed to avoid pressure sores on your buttocks!  Then the nurse put the cold cap onto my head.  It was already filled with freezing gel.   I thought “ooh, chilly but not too bad”, then she leant down on it more to make sure it fit really well and then she bought down this really tight strap which fit very snuggly under my chin.  See the glamorous pic – this is my best brave smile.  

  

I pretty much felt like I had my head in a freezing cold vice, the strap cutting into my chin underneath.  I new it needed to be tight though.  My eyes started to stream and a few tears rolled down my cheeks.   Deep breaths were needed.  A dear friend of mine had reminded me of the power of positive thinking and visualization.   I tried my best to think of warm summer breezes and a happy picnic scene, ripe juicy fruit, fat buzzing bumble bees, the kiddies laughing with all my troubles behind me.  It did help, but not initially!

 I wore the cold cap for about 4 hours. All in attempt to hold onto my crowning glory.  After the first hour, I barely noticed it thank goodness.   The pipe that links it to the machine is insulated but I asked for a towel between it and me to stop my shoulders from freezing.   Anyone going to give the cold cap a go I would say wear some very warm and comfy clothes and seriously, brace yourself for that initial half hour, it does get better though.

 I spent the 4 hours in my squishy chair reading magazines (all bought for me by friends), a book (Eat, Pray, Love by Elizabeth Gilbert) and listening to some tunes on my beloved iphone.    I had a brief chat with the nurse.  This didn’t really go that well though as she asked “Do you have children?” I nodded but was unable to answer properly as my resolve to be strong promptly crumbled and I blubbed into my hands, then searched frantically in my handbag for a tissue.  Its tricky to do stuff with your left hand if you’re right handed and your right hand is out of action.   I’m having all my drugs into my right hand as they can’t use my left because that’s the side my operation was on, and I’m a lymph node short on that side.   It’s okay though, this blubbing was bound to come at some point during the day.  I got over it quickly enough.

The room where I was having my chemo is on the 6^th floor of the hospital I was born in. All those years ago.   The room has large picture windows with a view of the sky, luckily blue on that day and planes taking off from the airport.   There were 5 of us patients that morning, receiving our life-juice.  I was the youngest there by far.   The only other woman patient sat across from me.  She was in her 60s I would say and her daughter about my age kept her company.   I clocked her wig as soon as I saw her.   It looked okay but you could just tell it wasn’t real hair and was quite short and spiky.   She was very proud of it and told me how the NHS do great ones (which you pay a £60 prescription charge for).   During my first half hour with the cold cap, she was being given her chemo drugs and I heard the nurse ask her if she had tried the cold-cap?   Her reply was “No why bother, it’s all going to come out anyway!”   I’m assuming she meant to say this quietly but unfortunately I heard.   Oh Marvellous! I cried (again) in my head.  Why am I doing this to myself?!

The main reason I will persevere with keeping my hair is for my children.  I think I’m pretty much okay with the hair loss now, but I just know that my kids are really quite freaked out at the idea of a bald mummy, they mention it every few days and they are definitely worrying about it even though I have reassured them it probably won’t happen.  And even if it does, they don’t have to see it.

The hospital staff looked after me very well that day.   I had hot drinks and a hot lunch – although the veg had been cooked to death, all nutrients sapped from it and poured down the plug whole with the cooking water no doubt!  Why does hospital food have to BE like that?!

They sent me home with a bag of more drugs to take.   Mostly to stop me being and feeling sick.   I’m on my last day of steroids today, thank god.  I am sure it is these horrible things that have made my tummy blow up like a balloon, my jeans no longer fit me!  Here with go with another side effect of chemo – weight gain.  Oh joy.   I am doing my best with being active.   I’m under strict orders from loved ones to get out and walk every day.  Which definitely lifts my mood, but is rather tiring!  I am such a lightweight now.  Talking of my mood, this has gone up and down like a rollercoaster.   I hate feeling sorry for myself but sometimes I really struggle to just stop feeling like I’m in a miserable black hole.   Everyone is being so positive.   “Yay, you’re one down – only 5 to go!” Yipp-yarr (dead pan voice) I cannot wait.

The best thing that’s happened in the last 3 days is watching my little family all pull together around me, hubbie and the kids all cleaned the house yesterday and are being so sweet.   Also I’ve signed up to do Race for Life on 23 May 2012.  This will be one week before my last chemo session, so I figure I’ll be good to go at that point. It’s only a 3 mile walk (I might jog a wee bit if you're lucky)!  If you want to join my team or sponsor me, please click the button at the top of the page.

 I'm visiting the hairdresser on Tuesday, so watch this space for news of my new do!!    It needs to go a bit shorter so that its easier to wash and care for - no hairdryers and minimal styling products allowed.  Should I take the plunge and buy a wig, or just hope for the best?!

Keeping a cool head

I am starting my chemotherapy tomorrow.  There is little else on my mind at the moment, it pretty much consumes me, day and night.   I’ve been struggling to get off to sleep due to the cogs whirring and going into overdrive as soon as my head hits the pillow.   I thought that the Oncologist told me to steer clear of any health supplements and alternative remedies. So, being a good girl I had put my Neal’s Yard Remedies “Sleep” roll-on to the back of the bathroom cabinet and ever since have had trouble getting off. Today I spoke to my Breast Care Nurse and she said I was mistaken (easy to get all that info muddled up) and any essential oils used externally would be absolutely fine!  I am SO relieved that tonight I can get back to my old habit of rolling the aromatherapy blend to my pulse points.   If this doesn’t work then I am also now equipped with some hard core sleeping pills from the Doctor!

 

I digress, the main point of this post is to talk about hair loss.  This is the root (pardon the pun) cause of my anxiety.  As we all know if you have chemotherapy you are very likely to suffer hair loss (and not just the hair from your head!).  However there is something that can be worn to prevent this … the amazing and rather attractive (see pic) Cold Cap.  The basic idea is that you wear the cap before, during and after receiving your chemo drugs, during which time it freezes the hair follicles and thereby prevents too much of the chemicals getting into the root and hair shaft.  To learn more about this process please visit this link:

 http://www.paxman-coolers.co.uk/index.php/how-it-works/cooling-caps/ 

My local hospital is lucky enough to have one of the Paxman cooling machines and it looks very new and hi-tech, I was pleasantly surprised when I saw it.   The cap reminds me of a jockey’s helmet and so I shall imagine I am riding a horse running through open fields whilst I am using it!  Mad woman.    If it works, I get to keep most of my locks, not that my hair is particularly special, it just IS to me.  The fact that I will have to sit with my head at -5 degrees for about 4 hours is rather worrying, but I have read that people just forget they are wearing it after the initial shock – I suppose it numbs your brain cells too.    Best case scenario is my hair will thin a little bit but I may still opt for that short elfin hair cut.  Worst case scenario is in about a months’ time I will lose the lot and behind closed doors only, look like an egg head.    It’s really important that whilst I have hair, I treat it as gently as possible, washing it less with very gentle shampoo – I’m aiming at once every 4 days, no hairdryers, no styling products, no hair straighteners!!!  So my hair will look a total (greasy) mess, even if it is my own – are you all screaming “Oh just shave it off and wear a wig!!”?  I am thinking that now.  You can see how I go around in circles, in my head throughout the night.

So in order to prepare for “hair today – gone tomorrow!” (that’s bad isn’t it) I have done the following; bought a silk pillow case – your hair is less likely to be rubbed off onto this than the usual ones; bought some leave in conditioner to wear during treatment (the nurse suggested this) and bought a few different delightful hair wear options, my favourite being a flowery cotton bandana thing that makes me look like ‘Gypsy Rosalee’ complete with my gold hoop earrings.   My BF says I am lucky I can pull off the hair scarf/bandana look, hats generally suit me, so thank heavens for small mercies!

 During my headwear shopping trip I encountered a couple of strange attitudes.   In one shop I asked the sales assistant if a particular scarf was square (you couldn’t see whilst it was all neatly folded on a hanger) and she looked rather annoyed and frankly like she was having a bad day – although the shop was quiet.  She helped by unfolding the scarf to check it out and then enquired what I needed it for.   I thought about lying (which is rarely my style) and then it just popped out, “well actually I’m starting chemo on Thursday so I’m looking for suitable head gear” queue sharp intake of breath and “oh I’m so sorry” and her manner completely changed towards me, she warmed up considerably.  In another shop – a hairdressers actually, one that specializes in weaves for afro hair and hair extensions that young trendy glamorous gals go for, I spied a rather quirky, fun, long pale pink wig, and thought for a laugh, at the right price, I’ll buy that.   I stood by the counter looking at the wigs, trying to find a price and then literally stood and looked around the shop blatantly needing assistance.  The woman at the cash desk just ignored me and carried on chatting to her mate who was doing someone’s hair.  There were 3 or 4 people there working.  They ALL ignored me whilst I stood there like a plum. Yes I am white and knocking on 40 but I had every right to be there, hankering after a pink wig!  I should have spoke up, but instead I just thought sod this, and walked out!!  I bet if I had had the confidence to speak up and then told them why I wanted a wig, I would have encountered a swift change in attitude once again.   And that’s a sad state of affairs don’t you think.

Ooh I’m in danger of sounding like my BF, so I will leave it there! (love you Tash)

Think of me tomorrow, riding my horse!   I'll be back again soon to let you know how it went.