Better out than in!

It wasn’t only outside that the dark clouds descended this week. I’ve been in a very strange mood. Very unsettled.

This has been my ‘bad’ week. I was really very unwell on Monday and Tuesday and sadly had to cancel my appointment to go to the Maggie’s Centre as I couldn’t face leaving the house, let alone brave the tube into Hammersmith for a two-hour workshop.  (Although I will try to get a place on the next one)

And so I stayed at home and felt sorry for myself. I couldn’t even sit and read or watch a film; the pain behind my eyes (like a migraine) and the constant feeling of nausea was so completely distracting that the only thing to try and do was sleep. Out of sheer, bloody, boredom. 

However, one TV programme that I did manage to watch was BBC2’s Horizon documentary on The Royal Marsden: ‘Defeating Cancer’. It was really very good. It profiled all the new technologies that they are piloting: robotic surgery, laser radiotherapy and targeted new drugs for people for whom all other options have been exhausted. The guys at the ‘Marsden, (and the Institute of Cancer Research), clearly know their onions and it was interesting to see where I will be going in May.

Fortunately I woke up on Wednesday feeling a bit better and even felt sociable enough for a friend to pop round for a cup of tea and a chat. I also had a little look on some of the various cancer research/support websites to see if there was anything that I, or any of my friends, could get involved in to help raise money.

Clearly I won’t be doing any sponsored runs anytime soon(!) but I did spot the 5km Wild Flower Walk in Syon Park in Isleworth, which is really very close by. You don’t have to get sponsorship (unless you want to), just donate and take part – so I’m trying to encourage a few of my friends to consider coming along.

Strangely – or not, really, when you think about it – the documentary, websites etc. must have triggered something in me and yesterday evening I just completely lost it. My mood had already made the evening a bit tense but I just started crying and couldn’t stop. It was a proper, full-on, sob-fest.

Poor Mr. P didn’t know what to do. He thought it was something he’d said or done and, of course, it was neither.  Just the sheer enormity of “everything” had got on top of me: seeing myself every day with no hair and knowing that in just a few weeks my eyebrows and lashes will be gone too; not having the full use of my arm because of the damage to my veins; planning my life around treatment dates and recovery cycles and not being able to take part in things that I really love and enjoy.  Never mind physically, it can spiritually and emotionally break you.

As I said to Mr P, I’ve been so busy just getting on with it, that I’ve not really had a chance to consider how I feel about it.  “And how do you feel about it?” he said. And so I was honest:  

- I want to go back to before Christmas
- I want it to all go away
- I don’t want to have cancer ...

So that’s that. I guess it’s good to get these things off your chest ... pardon the pun.

Anyway, the fact is that we are where we are. So I do need to man-up and get on with it. I found an excellent blog today by a Baptist Minister in Scotland. For any atheists or non-Christians reading, please don’t worry, it’s not a religious or spiritual blog but a really frank and useful account of her neoadjuvant (i.e. pre-surgery) FEC-T chemotherapy treatment.

In particular, she talks about phlebitis (inflamed veins) and says that she was told to use her arm as much as possible to avoid permanent damage, like when you have a sprain. She also talks about the ‘heightened senses’ on FEC - when even just to watch TV is too much sensory input and normal smells and tastes, particularly sharp or citrus ones – (like cigarette smoke or aftershave, in my case – sorry, Mr.P!) - can drive you to distraction.

It’s also given me an insight of what to expect next from the Docetaxel (or Taxotere). It certainly doesn’t sound like it will be a walk in the park, far from it, but forewarned is forearmed as they say. So I’ll put down the tissues and put my metaphorical tin-hat back on.  I’ve still got a fight on my hands and while I can allow myself a moment of weakness, I really don’t have time to wallow!

Rain, rain, go away!

OK, what happened to the sunshine?  Only last week I was having new fences put up in my garden and now I’m putting the central heating on. It’s all pretty cheerless.

That said, I suppose it is typical UK Bank Holiday weather. Grey and drizzly. The sort of afternoon when you just want to snuggle up on the sofa with a digestive biscuit and a ‘Carry On’ film.

Sadly though, the Easter TV schedule has been somewhat lacking. I truly felt let down this morning to discover that, despite the Bank Holiday, the BBC thought I might still want to catch a mid-morning episode of  ‘Cash in the [bloody] attic’.  Seriously?!

You’ll note that I’m a bit grumpy. I woke up today feeling pretty crap and, right at this moment, I’m having to listen to my neighbour’s grandchildren scream their heads off downstairs.  Either they’ve eaten too much chocolate or not enough, but I’d be willing to muffle their shrill little cries with a box or two of mini-eggs right now.

I have also been consuming chocolate. Mr P. arrived yesterday armed with a generous selection of treats which we scoffed in front of ‘Team America’  - (“F*ck, yeah!”) – followed by ‘Jurassic Park’.  It was a really lovely laid-back, if sugar-loaded, evening.

Today though, I had a bit of a relapse. Once I stop taking the steroids my body really starts to notice how bad the chemo has made it feel. It’s basically like a hangover: headache, nausea, dehydration ... which will probably last for a day or two. I was hoping to see some friends today but I really need to stay home and rest. And, fingers crossed, I’ll still make it to my workshop at the Maggie’s Centre tomorrow.

Fortunately though, for Mr P., he has gone out this afternoon and doesn’t have to suffer my mithering.  His good friend (and fellow cider enthusiast), Rob, is getting married on Saturday and they’re picking up their suits. (I believe there might also be a curry in the offing and I’m a little bit jealous ...)

Anyway, the good news is that it means that I’ve got another five days to get myself well for the celebrations. And who knows, by then the sun might decide to pop back and see us too?

Be true to yourself

The Easter holiday always makes me think of my Dad’s Mum, Daisy.

Mr P. and I were walking through WH Smiths the other day and there, on the stationery display, was a small selection of Easter cards. Every year without fail, my Nan would send me one: a quaint tradition that even for the most dedicated of Christians had long since lapsed.

Aside from her strong faith, which I know she had, I always admired her strong practical resolve to do her own thing.  She was so independent-minded.  Even aged well into her eighties, she would still walk down to Littlehampton sea-front and do a couple of shifts a week at the Windmill Theatre – either manning the box-office or, more hilariously, acting as usher in the cinema.

The thought of that used to really make me laugh. She was a tiny little thing with tight white curls and watery blue eyes. I remember going to stay with her and listening to her complain about the ‘trendy’ outfit they were making her wear - (it really wasn’t ... it was nylon and floral) – and how much she’d enjoyed the Jean-Claude Van Damme film that she’d seen three times that week.  She really was a character.

Anyway, my convoluted point is that we all approach life and its challenges in our own unique way. People have been very complimentary in saying how positive I’m being in my approach to my treatment but I guess, with feisty role models like my Nan and my Dad, I’m not sure I could really be any different!

And I wouldn’t want to be either.  After all, to steal an adage from a childhood poster I once had: “To dream of the person you would like to be, is to waste the person you are ... ”

Happy Easter!

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!