Monday 28 May 2012

Busy bee

Right-o, so I now have two ‘good’ weeks ahead of me and they’re already looking very full!

Lunches, dinners and a Jubilee wedding ... and that’s before I factor in all the mundane house and garden stuff that I need to get sorted. Oh, and I still need to sound-edit a radio play. I think I might have over-committed myself!

I am feeling better though, if – unsurprisingly – a bit tired. My joints are still a little weak and I’m finding that I’m quite clumsy too. (Managed to drop and smash my iPhone)

But for the most part, I’m doing OK. My hair appears to be growing back and the wispy white down on my head has given it the look and feel of a tennis ball.

The other day, I also picked up a sample of a caffeine-based product that’s supposed to stimulate the hair follicles. So I’ve slapped it on my scalp and am hoping for the best. The sooner I can grow some proper hair, the sooner I can stop wearing the wig because synthetic hair is proving a bit too stifling in this hot weather!

But we’re now about half-way through the whole treatment and recovery process, and the second half will (I hope) be easier.

Six weeks from today I will be at the Marsden having my pre-op dye injection and preparing to see the back of my ‘guest’. It still feels a long way off but at least I have lots to distract me.

Friday 25 May 2012

A change of perspective

Many years ago, somebody told me: ‘Happiness is a state of mind. If you’re not happy – change your mind.’

And so I have. I’ve decided that instead of constantly trying to fit into an, as yet, unknown schedule and trying to second guess what may or may not happen, I should start setting my own agenda.

So Mr P. and I have booked a holiday. Well, flights anyway - and we will be off to southern Italy for a week in August. It was scarily liberating to think ‘F*ck it. I’m going on holiday – radiotherapy can wait for me!’

I’m not a natural risk taker and can spend ages pondering and checking before committing myself. Mr P., on the other hand, is more spontaneous and firmly believes that details can come later (or be sorted out by someone else!) It’s a winning, if frustrating, combination ...

But making the decision has cheered us both up no end. Just to have something in the diary to look forward to, post op., really feels wonderful.

And that positive feeling has continued. I’m in Lichfield for a few days to celebrate my Mum’s birthday and this morning we popped over to St Giles Hospice (where my father passed away) to visit their Starflower Garden of Remembrance. It was really very beautiful, particularly on a bright sunny day like today, and an innovative way to remember those who are no longer with us.

Trust my Dad to get himself on the front row ...

It’s also been really nice to spend a few days with my Mum as I hadn’t seen her since before my chemotherapy started. She’s performing this week in a comedy at the Lichfield Garrick and I'm going to see the show tonight with one of my friends.

I’m really looking forward to it. I feel I’m well overdue for a really good laugh.

Thursday 24 May 2012

Operation update!

It's now moved to TUESDAY 10 JULY.

The Royal Marsden called me today and confirmed that I do need to have at least three weeks clear of chemotherapy.

"F*ck nuts" (as Mr P. would say)

Bit gutted. But at least we only lose a week.

Wednesday 23 May 2012

What’s that on my head?

I appear to have hair growth! Soft, wispy, baby-type fuzz – but definitely still hair.

I’m a bit baffled by this as my eyelashes and eyebrows have significantly thinned out. But on the side of my head, which was completely bald, and in-between the last few remaining short strands on the top is a soft white-blonde down.

Obviously I’m pleased but still surprised that it’s started before I’ve finished the whole chemo treatment. Clearly the Docetaxel doesn’t affect those follicles in the same way the FEC did.

Anyway, it has cheered me up. I know it doesn’t sound much but I was starting to feel like I’d emotionally ‘jack-knifed’ and was struggling to get myself moving forward again.

A few things have contributed to this but certainly the fact that the ‘Marsden have said that they might have to push my operation date back because of the change to my chemotherapy schedule at Charing Cross has caused me a lot of anxiety.

So we’ve made a couple of calls this week and are still waiting for some answers. Charing Cross Hospital has confirmed that there will be NO chemotherapy treatments the w/c 4 June, so my final treatment will be Wednesday 13 June instead. The Royal Marsden has been informed and I am now waiting for the surgical team to let me know if I can still go ahead with surgery on Tuesday 3 July (being now slightly less than the minimum three week gap usually required) and, if I can’t, what the date will be.

The uncertainty is dreadful. When you’re plodding on through the treatment there really aren’t much in the way of ‘high’ points, so you fix on key milestones as an opportunity to plan other things or just breathe easy for a bit.

So I’d been thinking about the operation and how long I’d need to recover and, from there, when the radiotherapy dates would be. And then, all being well, I was getting excited about being able to go on holiday at the beginning of September (before Mr P.’s other commitments kick-in for the Autumn).

But for now, I can’t plan for anything – which makes me sad. And this is all due to one casual calendar change to meet the convenience of a hospital administrator or management team.

Even if it works out OK for me, and the ‘Marsden tell me they can honour the date, I’m still really annoyed with Charing Cross. Being on this treatment is hard enough without being mucked about.

So, to the NHS team who have bagsied themselves a whole week off. ‘Good for you – enjoy your holiday!’ At least you know when you’re getting one ...

Monday 21 May 2012

Not long now

I’m so glad I’ve only got one more chemo session to go. It’s the main thing getting me through the pain of this current treatment.

It really is horrible. Shooting pains through my muscles, stabbing pains in my joints ... I just can’t get comfortable. It affects my whole body but my legs in particular.

It tends to start about 36 hours after I leave the hospital. Gradually building up over the next five days and then easing off again. So today, I’m feeling pretty immobile. However, I do hate to miss out on things so am still trying to get out and about – albeit with assistance.

This last weekend was a case in point. Some friends from North Carolina, who I’d not seen since I was there five years ago, were staying in central London so I was determined to get into town and see them for a cuppa and a chat.

Negotiating public transport though is difficult for me, so Mr P. came too and helped me get onto the Tube and up the stairs. Actually the subject of public transport etiquette is an interesting one. If I was pregnant or looked unwell, people wouldn’t barge me out of the way and would – I hope – give me a seat. However, I do try to do my wig and make-up nicely so it would be difficult for anyone to know.

I’ve often wondered then if there should be some kind of pin-badge cancer patients could wear, like pregnant ladies sometimes do, although I do think ‘Tumour on board!’ might be a little too bold for most people!

Anyway, having survived the Tube, I then prepared for an evening down the pub to see yet more friends also in town overnight for a flying visit.

Generally I’m fine, as long as I can stay seated but I do have to keep the painkillers on standby. This does also mean that someone has to ‘baby sit’ me because I can’t just casually follow people if they nip outside or up/down the stairs. Apart from being frustrating, it can feel rather isolating.

Nonetheless, it was a really good night and – as always – my friends were very sympathetic in asking me how I was coping and helping me to stand/walk when I needed to. It was also very generous of them to drink and dance so vigorously on my behalf ... ;-)

I’d be dishonest though if I let people think I’m not finding it bloody hard. Quite aside from the temporary physical restrictions that I’m experiencing, the mental and emotional aspects are most definitely accumulative. I feel very tired and teary a lot of the time.

However, the end is now in sight. And later this week, when my legs are less creaky, I will drive up to Staffordshire to see more family and friends.

And I think this is important; to be with people that know me well and with whom I can be completely honest. Now is not a time for pretence. Indeed, as Elbert Hubbard so beautifully put it: ‘A friend is one who knows you and loves you just the same’.

Tuesday 15 May 2012

Walk on the wild side

Well, it’s been an exciting couple of days.

On Sunday, a nineteen-strong ‘Team Martin’ (comprised mainly of friends and supporters from Beaufort Players) set off through the meadows at Syon Park for the 5km Wildflower Walk in aid of Cancer Research UK.

It turned out to be an absolutely gorgeous day and on our way we variously inspected flowers, fed geese and ate delicious cake. (Thank you, Craig!) I had been concerned that my chemo-weakened legs would cause me a problem but thankfully the effects seemed to have completely subsided by Sunday. So it was all good.

Collectively, we have also managed to raise a substantial amount for Cancer Research UK and their excellent work. Thank you to everyone who has donated and, for anyone who would still like to, I understand that the Just Giving page will stay open until August.

'Team Martin' set off ... and our completion certificate.

Sadly though, come Monday, the sunshine had disappeared as Mr P. and I set off to the somewhat inappropriately named (in such drizzly weather) ‘Paradise Park’ in Hertfordshire.

Mr P. had been given a 'Meet the Meerkat' experience as a gift and I intended to take on the role of photographer. However, when we arrived it transpired that I could also get up-close-and-personal with some furry friends so, of course, I jumped at the chance!

They were absolutely adorable and I loved every minute of it: feeding them grapes, stroking their fur and watching them burrow into Mr P's coat. Brilliant.

"You looking at me?!"

And lastly, today. We were back at Charing Cross Hospital for the penultimate measurement and, yet again, it was great news. My tumour has continued to shrink to the point that it is now actually very difficult to measure. A generous estimate puts it at 1.2cm x 1.2cm, which is down 55% in the last three weeks and 87% on its original size. And we've still got two treatments to go!

So tomorrow, I'll have my last-but-one dose of Docetaxel and prepare myself for the inevitable muscle and joint pains etc. However, at least I now know what to expect and know that they will get better in due course.

And I actually have four weeks to recover from this treatment, rather than three. It turns out that, because of the Jubilee celebrations - i.e. extra Bank Holiday etc - my final session will be a full week later than planned on Wednesday 13th June. (Boo! Pesky Queen!)

This is only three weeks before my scheduled operation date but hopefully that's still OK. Don't really want to have to move it. On the plus side though, as Mr P. pointed out, it does mean that I get two 'good weeks' this session. So every cloud ... !

Friday 11 May 2012

The infamous Mr P

I’m afraid to say it but I think I’ve created a monster.

Mr P.'s even said it himself. Apparently by telling the world how supportive he’s been, I've caused his head to swell (even more) and he’s started to believe his own hype.

In honesty though, he has been brilliant and I can’t imagine having done all this without him. However can I also say, for all his old friends who think he’s either turned over a new leaf or had a personality transplant, he does still have his irascible and naughty moments.

Indeed, taking him to the hospital often feels like taking a child to the supermarket; I have to keep a constant eye on him and check who he’s talking to or what he’s touching.

Like the day he started a row with the old lady volunteering in the League of Friends cafe over its ‘medieval’ payment facilities (they didn’t accept cards), or he found a kindred argumentative spirit in the Macmillan lady with whom he ranted at length about extortionate hospital parking charges. (To be fair, they are outrageous!)

Then there's the opportunistic touching of me each time I put on a hospital gown (and that's quite a lot) and the rifling through unattended medical trolleys to see what he can 'find'.

So please rest assured, he’s still the provocative, out-spoken attention-seeker that you all remember. But that’s why we love him ...

Thursday 10 May 2012

Always in my thoughts

It was seven years ago today that my Dad passed away.

I’ve talked a lot about my Dad on this blog. He was bloody-minded and stubborn and always liked to do things his way.  I think I might take after him ... ;-)

And, like me, he was a perpetual fidget. He couldn’t sit still and relax and always had to be ‘doing’ something, however mundane. Right up until the end he was drafting plans for household improvements, designing theatre sets, directing plays ... I was, and am, incredibly proud of him.

Ultimately, when they finally managed to drag him away from his computer or out of his workshop, he spent his last few days at St Giles’ Hospice Many of those reading this from the Lichfield area will be familiar with St Giles and its work and probably know someone who has been a patient there.

As an independent charity, they need to raise funds and this month have created a ‘Starflower Garden’ of Remembrance in which personalised Starflower Pegs will bear the name of friends and loved ones who are no longer with us.

And so I have sponsored one. I thought it would be a nice gesture, particularly as I am going up to see my Mum in a few weeks for her birthday and will be able drop by and see it for myself.

The same goes for anyone else who happens to find themselves in Whittington; please pop in and take a look.  And if you do spot ‘Brian Martin’, please be sure to give him my best ... x

Tuesday 8 May 2012

The countdown begins ...

Eight weeks today and my tumour will be history.

It’s good to finally be able to plan for the operation and know when I will or won’t be able to do things. Obviously there is always the risk of infection and/or complications but, assuming all goes well, I’m hoping the radiotherapy could also be done and dusted by around the end of August.

We had some preliminary warm-up celebrations at the weekend. My sister travelled down from Hereford and we variously drank, danced, ate and pub-quizzed with another fifteen of my friends. It was really great fun. My sister is already planning her return trips for June and July!

So for now, I’m on a ‘good’ week. I’m still quite tired but I think that’s to be expected after such a busy weekend. I do have a few nice nights out planned with Mr P. but during the day, apart from some general pottering, there really is no imperative for me to get anything in particular done.

It’s a hard life ...

Friday 4 May 2012

May the fourth be with you!

What an absolutely brilliant day! I am now formally registered as a patient at The Royal Marsden Hospital where I will undertake the remainder of my (post chemo) treatment.

We've waited a long time for this to happen but I’m so glad that I persevered and got myself transferred from Ealing Hospital. The facilities at the 'Marsden are second to none and I have absolute confidence and faith that I will get the best and most appropriate treatment according to my need.

And ... I've also got an operation date! My tumour (and the old lymph nodes) will be removed on Tuesday 3rd July. All things being equal, this looks like being a day procedure (under general anaesthetic), but this will be confirmed later in June. However, the date is fixed. Hurrah!

I'd always been keen to mark the end of chemo by doing something fun to celebrate my birthday at the end of June and now this can double-up as a massive 'Goodbye, Good Riddance!' party for our uninvited guest. I fully intend to see the little f*cker off in style!

I'm so happy, I can't stop smiling.

'Ave it!

Wednesday 2 May 2012

Onwards and upwards

I thought I’d better write a little post today because sometimes, if I don’t, people get worried and think that I must be very unwell.

Often that is the case. However, in this instance it’s more that I have nothing much to report. The muscle spasms and pain are subsiding. It’s not gone but it’s more general weakness in the limbs. I stood at the sink for 10 minutes earlier but then had to sit down because my legs were too tired to finish the washing up. That’s my excuse, anyway ...

It’s not as debilitating as the last three treatments though and I have managed to see people this week. On Monday night I managed to drive and had a hilarious dinner with some friends and yesterday Lorna came round to see me.

I’ve known Lorna since about 1985 and bizarrely, despite growing up in Staffordshire and over 10 years of us not being in touch, we now live round the corner from each other in Ealing. Lorna’s had her own cancer journey, having survived ovarian cancer (10 years all clear) and losing her Dad a year after I lost mine. Her Mum has survived breast cancer too – twice!

In fact, it’s through our parents that we know each other. That and the legendary Lichfield Youth Theatre; children of the local am-dram fraternity thrust together to pen sketches, perform musicals and generally lark about every Wednesday and Sunday at Lichfield Arts Centre. Golden halcyon days.

We’re hoping to recapture some of that youthful exuberance this weekend. My sister is coming from Hereford and another of our number, the infamous ‘Quinny’, will be travelling from south London, for a one-night-only Ealing performance. I’m really looking forward to seeing them.

Fortunately Mr P. is quite a formidable force in his own right otherwise this could have been a daunting prospect for him. However, he has already been thoroughly vetted and awarded ‘honorary LYT girl’ status. And that’s quite an achievement, let me tell you ...