Living the high life!

Oh yes, I’ve plumbed new depths of dullness this morning and at 10.30am found myself – alone – in Tesco’s cafe with a cup of tea and a piece of shortbread.  My life really is that exciting these days.

This solitary caffeine and sugar-fix however, was very much needed.  If I let myself get dehydrated, or hungry, then the nausea starts to kick in.  So it was just me, nursing my brew, and a few (very) random pensioners eating fry-ups.

I’d set out early to drop Mr P. at the station and then run a few errands to try and get things done before the fatigue kicks in or the pain gets too much.

It really is excruciating: like every tiny bone in my body is shrieking at me. My feet and ankles are particularly bad but, to be fair, I can’t think of a bit of me that doesn’t hurt right now. Oh, apart from my head ... I don’t have a headache!  Hurrah!

I had been taking warm mineral baths to try and alleviate things but now I think they make it worse. Last night was particularly upsetting. We’d had a lovely evening with our friend Amy, who came round to see us, and then I decided to have a soak before bed.   Anyway, to cut a long story short, I’d only been in the warm water about five minutes and the pain in my feet and the back of my ankles became so extreme that I couldn’t move. I certainly couldn’t stand to get out of the bath, so the situation just got worse.

In the end, poor Mr P. had to lift me out like a little bald baby covered in bubbles – then swaddle me in towels to stop me shaking uncontrollably from the cold and shock. It really was distressing for both of us. There really is no room left for pride or dignity with some of these treatments!

And that’s why I want to just say again, how completely and utterly grateful I am to have someone like Mr P. to love and support me. People often forget what an enormous emotional and physical burden is carried day-to-day by our loved ones. In fact, many carers end up feeling guilty and think that their feelings are inconsequential in comparison to the patient’s – but that’s simply not true, you’re all incredibly important and special.

In the case of my lovely Mr. P, I can’t think of many 31-year old guys who would have embraced the challenge of this situation so strongly and readily.  I know he’s found it extremely hard at times but I really couldn’t have wished for a better travelling companion on this journey ...

God, what hit me?!

They weren’t wrong about the effect Docetaxel would have on my muscles and joints – I feel like I’ve been beaten up!

It started last night and has got progressively worse. It really is very painful. No matter how or where I sit, I just can’t get comfortable. Thank God for prescription painkillers ...

Fortunately, I was still relatively mobile this morning and was able to make it into town to meet my old friend, Dermot, who’d come to London for a flying visit. I’d not seen him for several years so I was determined to make it into Ealing, despite my creaking limbs.

I’m really glad I did. A lot has changed for us both in recent times but it was lovely to see him so relaxed and happy and to hear about his forthcoming move to the USA.  I know he’ll have an amazing time.

But tonight, I’m staying put. An old university friend of Mr P’s is playing a gig in central London but, much as I would love to go, I really wouldn’t be able to stand up for more than five minutes. Mr P. has gone though, with my blessing. He doesn’t like to leave me but I’ve assured him that I’m fine and that I want him to see his friends.  I think it’s important that we carry on as normally as we can, under the circumstances, and take the opportunity to relax.

Which, for me at least, now means a bath and an early night!

Cancer, take a hike!

As mentioned previously, a few of my friends and I have decided to take part in The Wild Flower Walk – a 5km fundraiser around the grounds of Syon Park on Sunday 13^th May in aid of Cancer Research UK.

I know 5km doesn’t sound that far but it’s all that I can manage at the moment, and will still let me feel that I can make a contribution to a very good cause.  It will also coincide (give or take a few days) with the anniversary of my father’s death from bowel cancer - so it will be a nice way to remember him too ...

So, if anyone else would like to join us on the day, please let me know. Alternatively, I’ve set up a Just Giving page. We’ve all donated to take part, so aren’t looking for sponsorship as such, but if you wanted to make a donation to the charity we would all be very grateful.

So, what else have I been up to?!

Well, in addition to listening to Mr P's surprisingly expert Whitney Houston impressions (long story!), today was my fourth chemotherapy treatment and my first with Docetaxol.  I have to say that, thus far, I haven’t felt any ill-effects – not even while the drug was being administered. That said, I’ve taken more steroids in the last 24 hours than I think I did in the last nine weeks, so God knows how much I’m going to fill out in the next few days.  If Team GB need a last minute stand-in for the power-lifting at the Olympics this summer – I could be their girl!

Wow! Honey, I shrunk the tumour ...

So, we're halfway through the chemotherapy and my tumour has reduced by an enormous amout. It's shrunk by 43.5% in the last three weeks alone and by over 70% in total since my treatment began.

Obviously Mr P and I are delighted and so is the Oncologist. It's clearly gratifying for him to see a patient respond so well to the treatment, because not everyone does.

However, it's important that the tumour continues to shrink and doesn't just plateau. That's why they're changing my drugs for the next three treatments to surprise the little f*cker with something new.

The tumour currently measures 1.8 x 1.8cm which, on the face of it, is quite small. However it is all relative. On someone bigger this would be quite a straightforward operation but being small and slim does seem to be to counting against me! Consequently, I may yet need to have a mastectomy but that will be decided by the surgeon. We'll find out more in the coming weeks.

And so to treatment. My next three will be Docetaxel which can cause an allergic reaction in some people – (it’s derived from the Yew tree, apparently). As a result I have to take lots of steroids both today, and tomorrow before treatment, to mitigate any potential reaction.

It's all new and unknown and feels a bit like starting over. FEC was horrible but I got used to how I was going to feel and when – but now I have to start that process again. By all accounts, you end up feeling very stiff and sore like you’ve done a really intense workout. So I think I might need to stock up on plenty of Radox ...

I also went to the Maggie’s Centre this afternoon to attend a ‘Look Good, Feel Better’ workshop.  It’s a brilliant cancer support charity sponsored by the cosmetics and perfume industry to help women manage the visible side-effects of their treatment.

The workshop was run by volunteer beauticians who gave tips on skincare and make-up application, and we also got given a very nice (big) bag of products. I also took along some false eyelashes and got a few tips but I think the main thing now is to practice. A lot!

Surprisingly, one of the volunteers also recognised me from my amateur theatre antics – having seen me perform in ‘Daisy pulls it off’ and our recent pantomime. I was very flattered, although I wasn’t sure I should be having been previously dressed as a 1930s school-girl and a green-faced fairy ...

It was also a chance to talk to some other people going through treatment. I was by far the youngest patient there and, sadly, the prognosis for some of the ladies was not good. It did rather put things in perspective.

So now I’m home and getting my things together for tomorrow’s treatment and two-to-three days camping out at Mr P’s flat while I recuperate. In fact, he’ll be here shortly. Not to collect me, mind, but for me to chaffeur him round to his Poker Night!  Fair's fair. ;-)

Girls, girls, girls ...

Today I have been left to my own devices as Mr P. and the other lads are spending the day in central London on our good friend Alan’s stag do.

The girls though, did want to play their part – and so Gemma, the bride-to-be, and I (with cameos from our female friends) prepared a little video offering for the boys to watch this morning: a salacious spoof of ‘The Good Wife Guide’ (c. 1955). 

It’s been a few weeks in the making, trying to film and edit around my treatment and recovery days, but it was good fun to do and gave me a little project to work on. And judging from the messages I’ve received, the boys seem to have enjoyed it too! (Indeed, Mr P. said he was 'very proud' ...)

However, the other ladies have been kept in suspense and won’t be seeing it until this evening when we too will be venturing out for a few drinks (although, admittedly, nothing as riotous as our men have got planned!)

I’m looking forward to seeing everyone and having a night out. I have become a bit withdrawn of late and it’ll do me good to socialise. And then tomorrow, Mr P. and I are off to another wedding. Although, what sort of state he’ll be in and when, or if(!), we manage to arrive will be anyone’s guess ...

That’s what friends are for ...

To celebrate being half-way through my chemo, I had a couple of friends over last night to drink a little wine, eat some pizza and generally chew the fat.

It was a fun evening; very low key but I think we’ll keep the big bash for my birthday at the end of June, when chemo will be finished and (hopefully) we’ll be getting ready for surgery.

My friends really are very sweet. We talked about my lack of confidence with the wig etc. and also about how they could help me. Others have telephoned and asked me about this too but the honest answer is that, for now, just knowing that you’re all there for me, willing me on, really does make a difference.

Because, in a practical sense, there’s not much to be done at the moment in that I go to the hospital twice every three weeks and Mr P. likes to come with me.  Further down the line though, we probably will need more hands on support - particularly with the radiotherapy visits, which will be every day for a number of weeks. But we’ll cross that bridge when we come to it ...

And so we begin to get ready for the second half. I’ve got another week before I see the Oncologist  and get myself measured but I’m hopeful for another good reduction.  I’m also keeping myself busy, with assorted lunches, dinners and nights out planned over the next few days, so the time will go quickly.

Oh, and I’ve managed to re-book onto the Maggie’s Centre workshop that I missed last week. And, fingers crossed, it really will live up to its name and give me the boost I need to ‘Look Good, Feel Better’ ...

It's all about confidence ...

And I seem to have completely lost mine at the moment.

Not in my treatment – that seems to be going very well.  But I’ve definitely lost significant confidence in myself and the way I look, and will look in the coming weeks and months.

Mr P. and I went to a wedding this weekend and I met lots of people that I hadn’t met before. People who may, or may not, have known that I have cancer but probably didn’t realise that I was wearing a wig.

Now, I’ve already said that I’m not ‘wig confident’. Even though it is a good wig, I’m not able to move my head completely naturally, style it in the way I would really like, and I live in permanent fear of it slipping or someone knocking it off.  So being in a room full of (albeit lovely and friendly) people who with increasingly drunken exuberance hugged me, kissed me and generally flailed their arms in my direction on the dance floor, filled me with unmitigated terror!

Obviously with close friends or people who are aware of the situation I could say ‘please don’t touch my hair or put your arms round my shoulders’ but with people I’ve only just met that would have been impossible and churlish.

Consequently, I felt like a massive party pooper in wanting to keep out of the way of the ‘action’. Anyone who knows me well will know that this is completely at odds with my natural behaviour. I’m normally right in the thick of it, at the heart of the chaos – having very likely started it (or egged someone else on!)

I hate feeling like this and subjecting Mr P. to it too. His natural ebullience is legendary, so I then end up feeling guilty because neither of us is able to completely relax and be ourselves.  But I can’t help it. Rightly or wrongly, so much of our self-esteem is determined by how we feel about ourselves and our appearance. 

In honesty, I actually feel much more comfortable in just a scarf or hat because then there’s no pretence.  However, knowing that I’ll probably lose my eyebrows and lovely long eyelashes over the course of the next three treatments also really upsets me.  And yes, I know this is sheer, shallow vanity but at least I admit it!

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!