Easter Greetings

This is probably the first time in several years that I’ve spent the Easter break in London.

Normally, I’d take advantage of the long weekend and take a trip up to Staffordshire and see my Mum.  However, I really can’t travel that far so soon after treatment. I haven’t been that unwell but I feel very unsettled. It’s hard to describe. I think it’s the steroids – they make you feel very edgy and jittery.

I am getting better at dealing with the side effects though. I’m drinking plenty of water to avoid dehydration and headaches, as well as staving off the nausea, thanks to lots of apricot and ginger cordial. It’s been a real god-send. On the downside though, I’m constantly on the loo ... but at least, now I’ve also got myself some sleeping tablets (to offset the effect of the steroids) I only wake up once or twice a night!

The other thing that people don’t really talk about is just how badly chemotherapy affects your digestion.  Maybe not everyone suffers from it but the poor, long-suffering Mr P. has had to endure quite a lot from his bald, flatulent girlfriend these last few days. :-0

But still he treats me like a Princess, bless him. Home-cooked dinners, breakfast in bed ... constantly checking that I’m OK and telling me I’m pretty even though I have less hair on my wispy head than a baby orang-utan.

Today though, he is relieved of care duties. I have returned to my own flat and he has ventured out on a little expedition: to watch the ‘Boat Race’. Not that he has any interest in rowing – not many people who bother going down to the River actually do – but he does have a very active interest in drinking cider with his friends.

So, I shall see him tomorrow - at some point.  And hopefully, with the aid of a few chocolate eggs, take care of him as well as he has been taking care of me.

Three down, three to go

This will be a quick one as I’m feeling a bit ropey and Mr P’s cooking my dinner. (Homemade Chicken Kiev, if you’re interested ...)

Had the last treatment of FEC today, so no more inflamed veins and red pee. Hurray!  From here on in it’s just Docetaxel (Taxotere) which instead might make me bloat and swell up ...  For some reason this has put me in mind of Violet Beauregarde from Charlie and the Chocolate Factory, although I’m pretty sure I won’t turn blue. ;-)

But you’ll be pleased to know that today passed without incident. When we arrived Mr P. spoke to the ward receptionist and explained that I had become apprehensive because of the pain I suffered on our last visit. (Basically, the nurse didn’t listen to my request to soak my hand in warm water, pre-cannula, and caused me such excruciating pain that I almost passed out).  So instead, we had my original nurse who was gentle, lovely and very sympathetic.

However, we did have a close shave with the ‘sandwich monitor’.  The free sarnies are supposed to be for patients only but I do normally take a pack for Mr P. too.  Anyway, the new volunteer spotted me and, quite aside from not thinking I was a patient - (my wig is obviously too good!) – I then had to lie and say that I was really hungry and have the nurse congratulate me and comment on how good my appetite was! [Although she SO knew Mr P. was taking furtive bites whenever she left the bay ...]

And then afterwards, because I was such a ‘good girl’ at the hospital, Mr P. also took me for ‘malt’ and fries at ‘Starvin’ Marvin’s’ Diner on our way home.  I'm a very lucky lady. x

Some more good news!

My tumour has continued to shrink by a further 29.15%!  It now measures 2.4 x 2.4 cm - almost half (53%) of its original area.

I was so happy when the Oncologist told me, I almost cried. Suffice to say that he's really pleased with my progress and described the reduction after two sessions as 'fantastic'.

We also talked about the problems that I'm having with my left arm. He confirmed that it was caused by vein inflammation from one of the drugs but also said that I only have that drug for treatments 1-3, so tomorrow will be my last time. (And I'll make sure that I'm injected in my right arm)

After that, the drug combination - and therefore symptom cycle - changes. The revised drugs apparently cause less internal symptoms and more external ones, that is, it will start to affect my eyelashes and nails as well as my hair.

Following chemotherapy will be surgery. Because the tumour is so high on the pectoral muscle and close to the rib cage, they need to shrink it as much as possible because the 'margins' within which to successfully remove the tumour are small. It will also be the surgeon's decision as to whether they do a mastectomy or lumpectomy. Obviously I'm hoping for the latter!

I'm seeing the surgeon at The Royal Marsden on 4th May and the operation normally take places 4-5 weeks after the last chemo session, before the tumour can grow again. Working this out, that would mean an op at the beginning of July, just after my birthday - so at least we can give the little f*cker a good send off! ;-)

Lastly, there will be radiotherapy - during August, I assume - and then, fingers crossed, a nice holiday and a good rest.

So, that's that. In other news, Mr P. and I both enjoyed free aromatherapy massages at the Maggie's Centre today and I've booked onto a 'Look good, feel good' workshop next week. I'm rather hoping this might teach me to put on false eyelashes (should I need them), without looking like a panto dame, and apparently they give you a free bag of make-up.

This afternoon, Mr P. has also shaved my head. My hair had got so thin and wispy it just looked a state but now it looks a lot neater. Because it was looking so awful, I really wasn't sorry to see the hair go - it was actually quite a relief.

All of which means that, by this time tomorrow, we'll be half way through the chemo. I'm almost excited to see who we encounter on the ward this week. They'll have to go some to beat the flatulent lady dwarf from last time, but bring it on!

What Katie did ...

Today my head's sore for a whole different reason. It appears that what little bit of hair I have left was well and truly let down last night.

I say appears because I really don't remember. However Mr P. has taken great relish in filling me in on my embarrassing antics. Heckling people about recycling, asking elderly gentlemen if they're gay and 'cardigan-whipping' a librarian are apparently all among my drunken repertoire. And all before 11.30pm. In a church hall. Even by my standards this was quite an achievement.

We'd gone to help out at our drama group's show; serving drinks and selling ice creams. But while the show was on we sat in the Green Room and chatted, with a drink or two (or ten). The trouble is, of course, that I only drink alcohol about once every three weeks and it hit me like a train ... 

Mr P. did try and stop me:

Mr P: Have a Diet Coke   
Kate:  No   
Mr P: Have a Diet Coke   
Kate:  No
Mr P: Have a Diet Coke   
Kate:  I'll have a Diet Coke. With Bacardi in it.
Mr P: No

Consequently, I wasn't in any fit state for the after-show party. I believe we stayed all of about twenty minutes before Mr P. called a cab to take us home. I feel a bit guilty about this because he's normally the life-and-soul and for him to abandon a party to 'curb my enthusiasm' was quite a drastic measure!

So this morning I was feeling contrite and, after making us some bacon sandwiches, agreed to go to IKEA with him. Now that was an experience because, believe it or not, I'd never been before. I was an IKEA virgin. I'd steadfastly avoided it - so going on the first Sunday of the school holidays, with a hangover, did leave me feeling a little jaded.

Wonderfully though, at 1pm I received a text message that made me feel much less embarrassed about my previous behaviour. It read: "What a night! S was sick all over the place, cab refused to take her home. She punched P on the nose. G cried, V cried and I woke up on J's floor. Just going home now!"

Completely priceless. I'm so glad we don't just keep our drama for the stage!

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!

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.

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!

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.)

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 ...

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!