Thursday 29 March 2012

Hang on ... I know that feeling

My head’s all sore again.  I think what bit of hair I have left might be getting ready to fall out.

It’s hard to describe if you haven’t experienced it for yourself but the follicles are really tender. Just to lie on a pillow and move my head causes the hair to move in the root, and that hurts.

But at least I’m prepared for it this time and Mr P’s clippers are at the ready, should I decide to take the plunge and shave it all off.

It’s really odd how each cycle follows such a similar pattern – almost to the day.  Each week brings a different set of symptoms (to a greater or lesser extent) and then they subside in favour of something else!

However it does make it easier to plan for things. I have chemo every third Wednesday and so avoid making commitments for the weekend immediately after. The following weekend I might manage a low-key night out (but not alcohol) and by the third weekend (i.e. this weekend!) I’m ready for a right good knees-up.

Fortunately, we have one planned. Mr P. and I belong to an amateur theatre group and tonight is the opening of its Spring production.  We’re both very much looking forward to seeing the show, with a glass of cheap wine and a choc-ice, and I'm sure all our friends will be fantastic.

So ‘break a leg’, Beaufort Players, and we’ll see you all very soon!

Tuesday 27 March 2012

Mr Blue Sky

It’s amazing isn’t it, how a little bit of sunshine can brighten everyone’s mood?

It’s certainly brightened mine which, coupled with the fact that this is my ‘good’ week on the chemo cycle, has been a major boon.

Last week was not great: I felt horribly sick, had a dreadful cold and was at a really low ebb. So thank God, (again!), for the lovely Mr P. who tidied and cooked and generally tried to keep my spirits up.

I’m also not yet ‘wig confident’.  I really don’t feel comfortable in it.  I’m kind of OK with people I don’t know – even though I’m paranoid that it will slip or people will stare at it – but I get massively self-conscious seeing friends or colleagues in it for the first time.

Of course, people are lovely, and have been very complimentary in saying how much it looks like my real hair ... (Unless, of course, my real hair looked like a ‘syrup’?!)  I suppose I’ll get used to it but, with the best will in the world, I’ll never be able to move my head completely naturally. And I won’t be going on a roller-coaster anytime soon ...

But, despite my paranoia, the wig and I have been out: to lunch on Friday, to the pub on Saturday, and into the office and to the park on Monday.  It was really lovely to see everyone and to catch up.

We (i.e. the wig and I) also went to see a nutritionist. I’d booked an ‘intolerance test’ last year, pre-diagnosis, and thought it might be useful (a) to find out if there were ways to boost my system during treatment, and (b) not to waste the money!

It was really very interesting. It was a non-invasive technique, so no needles. (Score!) Instead they run an electric current through your body to see what is stressing or weakening your system at that time. I was a bit sceptical about this but when it showed up things that I knew I had an intolerance towards (although, sadly, Keira Knightly was not listed) – I did have to give it some credence.

Unsurprisingly, my body is currently very depleted of certain vitamins and minerals so I have bought some heavy duty (and might I add, expensive) supplements. I’ve also bought some Epsom Salts to bathe in. These contain magnesium, which can be absorbed through the skin, and can help with the nerve damage and muscle weakness that I’ve been experiencing. 

My left arm is particularly bad.  Quite aside from the fact that the nurse botched the cannula into my hand on the last chemo visit, to the extent that I started to faint, the chemo drugs do cause inflammation along the length of the vein as well as nerve and muscle problems.

It’s not debilitating. I can still use my arm but it’s really got no strength. I get uncomfortable spasms in it too – which hurt – and it’s like my bicep has gone dead.

It was particularly bad on Sunday. Mr P. and I had a lovely day in the garden: him, mowing the lawn; me, watching him ... ;-)  But then my hand, as well as my arm, really started to hurt. 

Knowing my melodramatic nature, Mr P. discouraged me from ‘googling’ blood clots and thrombosis but did offer to take me to the hospital. Ah, God love Ealing Hospital. It really is a shit hole.  And even on a Sunday evening they charge the full £4 minimum rate for the car park (Thank you Ealing Primary Care Trust!)

Anyway, the long and short of it is, after a two-hour wait (despite being marked as ‘urgent’) it’s just one of those things that I need to accept and get on with. *Humph*  So I’ll take the supplements, take it easy, and make sure I don’t get that evil witch of a nurse when I go back to Charing Cross Hospital next week.

Mr P. and I also plan to take advantage of the services offered at ‘The Maggie’s Centre’. It’s a lovely facility that offers free therapies and advice to cancer patients at the hospital, as well as to their carers.  It’s all very laudable.  And while I’m not really into the fluffy stuff, or wanting to explore my ‘feelings’ through creative drawing, I think it’s great for those people who are.

That said, we’re also not going to look a gift horse in the mouth - and two aromatherapy massages have been duly booked.

Tuesday 20 March 2012

All the joys of spring ...

The sun is shining, the sky is blue and I’m ... laid up in bed with another cold. Grr.

I was doing so well. The latter part of last week went quite smoothly and, while I did have the obligatory head and stomach pains, the second chemo bout seemed much less troublesome than the first.

This was partly because I knew what to expect, and was prepared, but I also seemed much less tired.  Mr P. and I even made it out into Chiswick on Saturday for a leisurely lunch and stroll.  Sunday too, we were out. Off to Windsor to see Mr. P’s family for a lovely lunch – (thanks to our ‘Domestic Goddess’, Neil) – and to celebrate Mothers’ Day.

I’d put a call in to my Mum too; the fine old girl that she is. My being ill has hit her very hard and brought back lots of memories of when my Dad was having treatment, so clearly she was delighted to hear that my tumour has reduced.

So everything was very positive ... until Mr P. started coughing. This has since become a bone of contention.  He maintains that I gave him my sore throat last week, and he has merely returned the favour, but suffice to say the two of us are both now very unwell.

Obviously, I’m keeping an eye on things: taking my temperature regularly and have got the ‘spare’ anti-biotics the Doctor gave me on standby. But my immune system is completely shot.

It’s really crap timing, too - tomorrow is Mr P’s birthday. I was hoping to do something nice but it looks like being a quiet night in: just me, him ... and our good friend Dominos!

Thursday 15 March 2012

Wig photos, as promised!

Brace yourselves ...

Click on the pictures to see them bigger.

1. My actual hair, bald patches included.

2. My new wig, very like how my hair used to be.

3. What my hair would be like if it really did come back red and curly ... ;-) (Just for Mr P.)

Wednesday 14 March 2012

Hurrah! Cancer IS f*cking off!

Had my tumour measured yesterday and its size has reduced 25% in area since the first treatment. 

It’s gone down from 3.3 x 3.3cm to 2.8 x 2.9cm and apparently feels softer too. The Consultant says that’s about average and so seemed pleased with my progress.

I’d also been concerned that my having a sore throat this week might delay today’s second treatment but my blood test came back fine, so it’s full steam ahead. Obviously I won’t be bothering with the cold cap again. There seems little point when I’ve lost so much hair already. But, looking at the positives, that will make our visits much shorter.

I’ve also had my hair cut. My scalp was so sore and itchy that the weight of the remaining hair was really very uncomfortable. However rather than go straight in with the buzz-cut, my hairdresser opted to crop it to about 2.5cm - (and a bit longer on the top) - which is severe but rather less drastic.

I’m not naive though. My hair is still shedding, so it won’t be long until Mr P. does have to set about me with his hair clippers, but it does allow me time to get used to the idea of being completely bald. On the plus side though, my hairdresser says I have ‘a perfect occipital bone' – so you’ll all be able to see it! ;-)

I’m also hoping to get a wig today. They were supposed to have them at the hospital yesterday but they hadn’t arrived in time. So fingers crossed ...

Monday 12 March 2012

Be bold. Be bald.

I've now lost a LOT of hair. What was once a lovely full, thick head of hair is now thin and wispy with a couple of big bald patches.

It started on Friday and I've been steadily shedding since. I honestly didn't realise that it would happen so fast. It's getting everywhere.

A big group of us had gone away for a friend's Hen Party and hired a lodge down in the New Forest, so I was really glad that they'd arranged for me to have my own room. I wouldn't have wanted to share with me; I felt like a moulting Labrador. 

It was more annoying than anything but when, on Sunday morning, I lost a signicant amount in the shower and saw the extent of my baldness, I did have to potter off into the woods for a little cry.

It was good though, to have someone there who had been through it herself. Fiona got diagnosed a few years ago, when she was still in her late twenties, so has run the full gauntlet of surgery, chemo and radiotherapy.

She started losing hair within a week of her first chemo session, despite also using the cold cap, and took the bold decision just to have all her hair cut off and wear a wig. That meant she was in control.

So, I've decided that I should do the same. I've made an appointment to have it cut at 6pm tomorrow and Mr P. is going to come with me. My hairdresser works from home so it will be in private with no-one else watching.

I'm hoping to sort out a wig this week too but, in the meantime, I do have some knitted hats and scarves that I can wear.

Obviously, it's all been pretty distressing but, as I said to my friends, I'm not the first person to go through this and (sadly) I won't be the last. And who knows, when it grows back it might be curly or a different colour - it does happen. Mr P's hoping for a red-head ... but I just want to be less grey!

Friday 9 March 2012

Uh-oh. It's started.

My hair's falling out.

I guessed it would. All day yesterday my scalp felt incredibly tender at the roots of my hair.  I would say I've lost a good, full handful just washing it this morning.

Fortunately, I do have an incredibly thick mane - so there's still plenty left. For now ...

Thursday 8 March 2012

Counting down

Hello, I’m back! I’ve had a busy couple of days. 

I’m taking full advantage of my renewed energy and cheerfulness to crack on and get things done before next week’s second bout of chemo. I’d almost forgotten what it was like to feel normal!

Well, I say normal. I don’t think I’ve been this positive in quite a while. It’s a lovely feeling. And me being in a good mood, means Mr P. is in a good mood ... and that’s good news for everyone! ;-)

The only side effect still noticeable is one that didn’t actually surface until this week: the horrible taste in my mouth. They say it tastes metallic but I think it’s more rancid than that – like something has crawled into my mouth and died. :-( It really is quite foul.

Apparently it’s the chemotherapy affecting the cells in the mouth cavity, which is why your sense of taste can change too. Someone suggested wine gums to take the taste away, which are acidic, so Mr P. bought me some Haribo and they do seem to work. But, honestly, with all these sweets and chocolate, I think I might shift the cancer and give myself diabetes!

I’ve also got a big weekend planned: twenty of us are off to the New Forest tomorrow for a Hen Weekend. I may report more of our shenanigans next week but a big thank you to Gemma (Bride-to-be) and Jayne (Bridesmaid) for making special concessions for me. Very much appreciated

Monday 5 March 2012

Walking on sunshine

I am in such a good mood today. I wish I could bottle it and save it for days when I don’t feel so great.

For a start, I had seven hours unbroken sleep last night – for the first time in three weeks. I had been waking up at least two or three times a night and getting up about 6am, but this morning I woke up after 7.

My headache is also pretty much gone, and manageable, and my energy levels are right back up to where they were pre-treatment.

I’m really hoping this lasts. It would be lovely to think that I can have eight more good days before we start the cycle again.

Sunday 4 March 2012

Back in the game

I think we’re winning. I’ve gone three whole days and am practically off the painkillers. (At least, for now!)

That’s not to say that I don’t still have head or stomach twinges but they’ve gradually got less and less. Even on Friday, I was still suffering from what I can only describe as constantly feeling a bit ‘car sick’, which got worse if I moved quickly or put my head down to read. I even tried those anti-sickness wristbands but, apart from making me look like an 80s tennis player, I really didn’t see the benefit ...

I don’t really know what’s been causing this. Apparently motion sickness can be a problem with some treatments because the toxicity can affect your inner ear and therefore your balance. It might also be a result of the infection, so I’ll discuss it with the Oncologist when I see him on the 13th.

However, I am feeling better and even managed to make it out to the pub last night. It was lovely to see everyone and, across the three hours, I even managed a whole half-pint of lager ... ;-)

To be honest though, I’ve gone right off the thought of alcohol and can’t imagine that changing for the foreseeable future. In fact, I think some of my friends find this the most disturbing part of my treatment!

And today I’ve had a really, wonderfully, mundane Sunday. Did laundry, went to the supermarket, cooked a roast dinner for Mr P. - all the run-of-the-mill, boring stuff that I just didn’t feel like doing before. It’s been great.

Friday 2 March 2012

What day is it?

All the days are starting to blur. Every day feels like a Saturday ...

Fortunately though, a good number of my friends seem to work at home, on shifts, or have leave to use so I will never be short of company if I want some.

I’m also feeling MUCH better. I do still get slight stomach twinges and head pains but nothing like the horrors I experienced earlier in the week.

So it means I can actually ‘do’ stuff.  This morning I get to wait in for four hours (woo-hoo!) for my phone line to be fixed.  It had been broken for several days before I realised so apologies to anyone who thought I’d gone AWOL.

And then I’m off to lunch with Mrs M. Not seen her since before Christmas, so it will be nice to catch up.  Managed to get out yesterday too.  Met another friend for lunch and then pottered round the shops for an hour or so.

So I am getting about. My energy levels are generally good until about 4pm but then they start to fizzle and by 9.30pm I’m doing the blinky ‘I-can’t-keep-my-eyes-open’ thing.  It’s meant some adjustment in our eating times too.

I’ve also noticed that certain foods are a no-no. Bless him, Mr P. made me a really nice sweet and sour chicken the other day with the smallest amount of chilli in. It really wasn’t that hot to the taste but it really made me stomach sting – that’s how tender my insides are feeling.  So everything is still very much trial and error. 

However, I’m pleased to report that Penguin biscuits and Strawberry Split lollies hold no such hidden dangers ... ;-)