Wednesday, 29 February 2012

Keeping it in the family

None of my immediate female relatives have had breast cancer but apparently that doesn’t mean that my disease is not hereditary.

When I went to see my GP yesterday, he suggested that I should ask the hospital for a DNA test to see if I carry one of the ‘breast cancer genes’. I hadn’t really considered this before but, on reading some information from the Genetic Alliance, I’ve realised that this might not be such a pointless exercise.

It turns out that the faulty gene can be passed down the male line to female descendents. My father had one brother, and their father was an only child. However my Grandfather’s mother (also called Kate), died from - yes, you guessed it - breast cancer.

To be fair, she was 91 years old ... But it did get me thinking because my sister and I are the first females in that blood line since her. I think this requires further investigation ... !

What a difference a day makes

While I still woke up feeling a bit grotty, the improvement since yesterday has been significant. I’m actually starting to feel like myself again.

It’s had such an impact on my state of mind. Yesterday, I felt very low; the uncertainty of when, if ever(!), I was going to feel better had really dragged me down. Mr P. was worried too. When I get upset, he gets upset ... and that’s the last thing I want to see happen. 

So today, I’m feeling positive – if bloody tired.  I know I’ve still got a bit of a temperature but my sleep has been completely disrupted ever since the treatment last week.  I can’t seem to sleep in more than 2-4 hour bursts. It’s really odd. I wake up two or three times a night, and then nod off again.  But at least it means I get up early - (see, I said I was turning into an old lady!) – and can try to get a few things done. So, every cloud ... !

I’d also like to thank all the people who’ve emailed me or been commenting here on the blog or via Facebook, offering tips and words of encouragement. It’s really lovely to know that people are interested and genuinely care, even though we may not have seen each other for a while or maybe not physically met.

It’s a sad fact that cancer is something that will touch us all in some way.  Its indiscriminate nature makes us all equal. So, on that note, I just want to mention a good friend who had a mastectomy yesterday. Her breast cancer is a different type to mine and she is some years older than me, but that makes no difference to how I know she – and her family - will be feeling.

So, I hope you’ll join with me in wishing her a successful and speedy recovery. She’s a tough old boot ... and let’s be honest, it takes one to know one! :-)

Get well soon, Elaine. x

Tuesday, 28 February 2012

Oops!

Hmm. Turns out that pesky new thermometer was wrong and I did have a temperature - of 38C!

So thank God I went to the Doctors. Technically, had I realised, I should have gone straight to Ealing Hospital for antibiotics. But at least I have some now for what, I assume, is a bog standard ear, nose and throat infection - and some co-codamol for the pain. 

I'll need to phone Charing Cross tomorrow and tell them and that might also mean a blood test just to check my white cell count. We'll see ...

But, despite still being under-the-weather, I actually feel so much better to know that there's a reason why I've been feeling so bloody rotten. They do warn you about these things but, when you've never had chemotherapy before, it's impossible to know how you should or shouldn't be feeling.

So, that's me pill popping for another week.

(Oh, and I've bought another new thermometer ... and at £33 it had better be accurate!)

Holy FEC ...

So, I've done a bit of homework and apparently my symptoms are pretty standard for this drug combination.
 
According to the various breast cancer forums, FEC does seem to give people this chronic, hangover-like headache. It's relentless. Every morning I wake up hoping to feel better, and I don't.
 
I'm allowed to take painkillers but nothing containing an anti-inflammatory. Paracetamol just isn't strong enough though, so yesterday I went to the chemist - explained the situation - and got some with codeine. But still woke up feeling crap ...
 
In fact, I feel worse today than I did the day after chemo which isn't right at all. So, I called the Oncology Unit at Charing Cross. While I don't have a temperature they did agree that it wasn't normal to still feel like this five days after treatment and advised me to get it checked out. So I am. I'm seeing the Doc at 3.30pm and will beg for some stronger painkillers. I'll probably cry too ... (it really bloody hurts).
 
Some of the other less common side effects are kicking in as well. I'm now getting tingling in the palms of my hands, like pins-and-needles. It's also had an unfortunate effect on my digestive system. Honestly, it's a bloody nightmare. It's like I've eaten a whole sack of sprouts. I'm really starting to offend myself ... ! But again, looking on the cancer forums, apparently this is normal as the drugs can affect the speed of digestion, create gas and affect the bacteria in the gut.
 
Marvellous. :-(
 
So today, I shall try to crack on again. My energy levels are generally OK to mid afternoon but then I flag and am in bed by 8pm. This is partly tiredness and partly boredom as my body hurts too much to concentrate on a book or the TV.
 
I feel like I'm 38, going on 78!

Monday, 27 February 2012

Ow, it hurts!

My head is still banging ... I feel like I have the most protracted hangover in the world.

I managed to get two good night's sleep over the weekend but have still woken up today feeling headachy and nauseous. It's really starting to get on my wick ...
 
I've also started to get paranoid about my hair. Found some strands on the pillow earlier. It's probably just normal 'shedding' - I do have very thick hair - but it didn't help me to feel any better about things!
 
So today, I need to get 'doing': pick some wigs, buy some nice food and generally get my house in order. (I have let things slide these past few weeks).
 
And maybe later, I'll see Mr P too. He's spent the last two days/nights carousing in the way that only he can. I'm glad that he's had a good time, (and that Liverpool won the League Cup) but, if he's looking for a sympathetic response to his 'headache' this morning, I think he may be disappointed! ;-)

Saturday, 25 February 2012

I’ve put on how much?

I know they said that I’d put on weight but 4lbs in a week does feel a bit excessive.

I know that might not sound an awful lot but to someone of my size and frame it is – and especially over such a short amount of time.

To be fair, my level of physical activity has been a lot lower over the last few weeks - not having to get up and walk to and from the station to work – and I probably have been tucking into the comfort foods. But still, I have put on at least 3lbs in the last three days!

Apart from the pancakes and pasta, which I confess I have enjoyed, I do think this is mostly down to the steroids that they give you to suppress the nausea and other side effects. And you do need them. I haven’t suffered too badly but enough for the stomach and head pains to be a constant gnawing distraction. I even resorted to cleaning Mr P’s flat on Thursday to try and take my mind off how I felt! That was a double-edged sword though, because I ended up completely exhausting myself.

Just generally, the tiredness is a complete bitch. I constantly feel jaded and while I can muster the energy to do stuff during the day, the evenings are a complete wash-out. But worse still is that, despite my exhaustion, I just can’t seem to sleep through the night and end up getting up really early. Boo!

I am still trying to exercise though, to try and boost my metabolism and hopefully my sleep might settle in a few days now that I’m temporarily off the steroids. (You only take them for a few days after treatment – unless you really need them).

I’ve also got lots of healthy supplements that I’m taking to boost my vitamin and mineral intake, mostly bought for me by my lovely friends and family. Today I shall be trying ‘Milled flax, sunflower, pumpkin and sesame seeds, and goji berries’. (Thank you, Ms Jackson). Apparently I can sprinkle it on or add it to all sorts of things, so I suspect it might feature in my morning smoothie and in my chicken stew tonight.

I’m going home today after four days at Mr P’s, so I’m planning a nice quiet night in. He’s got some friends up from Devon, so I think it will be good for him to go out and take his mind off things. It’s been a lot for him to take on these last two months, and very stressful, but he has been an absolute star. I know I’m very lucky to have him ...

And tomorrow, I’m hoping to catch up with some more friends in Ealing just for lunch or afternoon tea, so if anyone reading this is around and fancies coming to say ‘hello’ – please let me know! 

Thursday, 23 February 2012

The morning after ...

Well, that's a bit weird. Definitely don't feel right but not dreadful either.

Last night was worse; had that indeterminate 'I'm coming down with something feeling'. Headache, muscle cramp, mild nausea ... the sort of thing that if you woke up feeling like it, you would definitely phone in sick from work but still might manage a bit of 'Diagnosis Murder' on the telly.

Woke up today feeling better but still with a slight, nagging queasiness - but nothing that someone who's ever had a *big* night out couldn't handle ... (!) Fortunately, I do have lots of ginger stuff to eat: ginger jam, ginger sweets, ginger chocolate (thank you, Lisa and Janice), so that does seem to help.

So now I'm at a bit of a loose end. Mr P's had to go out this morning but should be back in time to give my injection after lunch. He's also left me a big pile of washing up ... ;-)

Wednesday, 22 February 2012

One down, five to go!

That really wasn't so bad. Not pleasant but not god awful either.

First up we saw the wig lady. She was very nice and showed me the catalogue and colour samples, all of which had ludicrous names. My best match is 'Buttered Toast' (?)  Mr P. then got carried away and started offering his own variations: "Butternut Squash!"  (Honestly, you can't take him anywhere ...)

I'm going to pick a couple of styles and she'll bring them to the hospital for me to try on. All of the wigs are subsidised but, depending on which range you choose from, you pay a contribution of up to £75. Obviously I'm hoping that I won't need to wear one but, at that price, it's worth getting one just in case.

Then into treatment. It really was exactly as the nurse had described. The cold cap does look ridiculous and mine was made to look even more daft with little chunks of swabbing inserted for comfort.  They also slick your hair back with conditioner first to protect it because it does get frozen. Fortunately my hair is very thick and insulating but, conversely, I do wonder if that might limit the cap's effect?

Anyway, it was VERY cold. But I'd been warned that the first 10 minutes are the worst [they were] and then you get used to it [I did]. Luckily I had Mr P. to distract me and feed me sandwiches. He also introduced me to the delight of Angry Birds on the iPad. I got quite absorbed and, at one particularly awkward level, found myself exclaiming loudly: "Die you f*cker!" Which probably wasn't the most sensitive thing to shout on a cancer ward ...

Three separate drug combinations later and I was free to go home. I've got lots of anti-sickness steroid tablets to take for two days, and an injection tomorrow, but no more medical appointments for three whole weeks.

So all in all, the day went well. And to celebrate we did a little dance, or the 'chemo conga' as I would like it henceforth to be known ... :-)

Feeling down ... ?  Not me!

Tuesday, 21 February 2012

Somebody pinch me - this place is too good to be true!

OMG. I LOVE Charing Cross Hospital! Seriously, the place is amazing.

For someone who has spent the last six weeks being treated at Ealing Hospital, Charing Cross is another world.

Firstly, you walk into the main reception and it's bright, modern and inviting. (With no old ladies in dressing gowns smoking fags outside the front door ...)

I then went up to the Oncology outpatients. My appointment was at 11am but I'd been told to get a blood test first so got there at 9.45am, fully expecting a long wait in a depressing, crowded waiting room.

Au contraire! The room was bright and airy and, on taking a ticket for my blood test, realised that there were only two people in front of me. I couldn't believe it - but it got better! Before I'd even had the blood test a nurse appeared and called me to see the Doctor. He was at a 'loose end' and could see me early. EARLY! So even after my blood test, I was out of there before 10.15am ... Outstanding.

However, my next appointment wasn't until midday. No matter, I thought, I'll find where I need to be and then go and buy a cuppa. But, no need! The chemotherapy unit has free tea, coffee, biscuits and WiFi. I even got given a sandwich for my lunch. Superb!

The Chemotherapy nurse was lovely too. She sized me for my cold cap and took me through all the side-effects of the different drugs I'll have, the first and most toxic combination of which is appropriately called FEC-T(!)

Interestingly, the nurse didn't think I needed to get my hair cut too short to start with but, for comfort's sake under the cap, I think I'll still go ahead with a good trim this afternoon.  Even if I don't lose all of it through treatment, I will lose some, so I've also got an appointment to see the hospital's 'wig lady' tomorrow. (That said, I can only assume her usual customers are on the more 'mature' side as the catalogue seems to contain a lot of very tight perms ... )

Anyway, after a quick MRSA swab (nice!) and a precautionary ECG scan, I've been given the green light. The whole process - injections, cap etc. - will take about 3 hours per session but, I can barely believe it, we're FINALLY underway!

Hair today, gone tomorrow ... (sorry!)

Today I’m for the chop. The hair chop. And I’m a bit apprehensive.

I spoke to an old friend about it last week. “You had short hair when I met you,” he said. “Yes,” I replied “but that was in 1994!”

In fact, I worked it out and I’ve not had short hair since 1995. That’s a LONG time ago. A lot of things were different then: Hollyoaks was on the telly, Take That were in the charts, we had a Conservative government ... Oh. Hang on ... ;-)

But before I see the hairdresser there is the small matter of my pre-chemo assessment. So I'm up with the larks and off Charing Cross Hospital for a few tests and other administrative bits and pieces. Then, if everything is as it should be, we're all set to start tomorrow afternoon.

Wish me luck!

Monday, 20 February 2012

Who's that girl?

Today I went to office for the first time in over three weeks.  I know that's not long but I still thought it might be weird.  I really shouldn't have worried ...

Everyone was really lovely and asked how things were going - I even got a few little pressies. (Because I'm always partial to a 'chocolate ginger' and a homemade cookie!)  It was good to clarify a few HR bits too; sick notes, sick pay, etc. as I know I won't be working again for some time.

That being the case, I also did a routine sweep of my portable filing cabinet (or 'poodle' as we like to call them). Ever since a colleague left a piece of cheese in the cupboard for over month, I was a little concerned that I might have left a wizened satsuma wedged in my drawer. Fortunately I hadn't ...

So after a bit of lunch - (which was lovely, thanks guys) - it was back to Ealing Hospital for my 'delinquent tit', as it has been dubbed, to receive its electronic tag.  It was quite a straightforward process, very similar to having a biopsy, and then followed up with a mammogram. (Indeed, thanks to the residual anaesthetic it was the least painful mammogram I've had!)

However, I still came out feeling a bit queasy. But then I remembered ... I had a handbag full of homemade biscuits!  They were delicious. :-)

Friday, 17 February 2012

Whoop! NEWSFLASH!

So, don't want to count my chickens, but I might get treated at the Royal Marsden after all.

Yesterday I called to say 'thanks but no thanks' to my appointment on 29th February and told the woman in appointments how unhappy I was about how my case had been handled.  She apologised and expressed her surprise and said that she would look into things for me to see if it was still worth me coming in.

I then received a call from the Consultant's secretary (the one I had previously dealt with) who, after some to-ing and fro-ing and inital frostiness, I think realised that there had indeed been an administrative cock-up. She was then enormously helpful!

As a result, I've now heard from the Registrar. Ideally, they would like a patient to have all their treatment - i.e. chemotherapy, surgery etc. - at the same hospital but it is possible for me to have my chemo at Charing Cross and then go to Royal Marsden for my operation. So she is re-scheduling my appointment to see the Consultant Surgeon to May after my fourth course of chemo.

Clearly, I'm delighted. And goes to show that being direct and honest about how you feel, does pay off!

There's a good girl ...

So yesterday, I was taken for a walk in the park and next week, I’m being micro-chipped. (I’m not sure I like where this is heading!)

To be fair though, the walk was a good idea – even if I had to be coerced.  It was nice to get a bit of fresh air and have a natter.  And tonight we’re being cooked for again. Honestly, I never knew having cancer could be so sociable!

In all seriousness, I wouldn't want anyone to think that this process has been, or is, easy-going. It really isn't. But if you can't make light of things and take your laughs where you can, you really would go mad.

There are times when I've found it hard. I'll be doing something quite innocuous - like making a cup of tea - and then, in that unguarded, unconscious moment, start to cry. And I know that's fine. Natural. But it's not something that most people will get to see. I'm a hard-faced bitch, remember ... ;-)

So, can I say again how much I really do appreciate all the offers of help that we've received and while we may not have taken you up on them thus far, it doesn't mean that we won't. It means so much just to know that they're there.

Thursday, 16 February 2012

The calm before the storm

OK, so I’ve got a few quiet days to get things done. And have I ... ? Have I, heck!?

I blame Mr P; he only went and gave me an iPad for Valentine’s Day. It was the most lovely and thoughtful (and expensive!) of gestures. His thinking is that it will keep me entertained while at treatment appointments and, quote, “make your life easier.”

He’s right. It will. But I also can’t stop playing with the bloody thing!  I think he may yet confiscate it and only let me have it at hospital or as a treat when I’ve actually done the things that I’ve promised to do. Today he’s made me promise to walk to the station and back, just to get me out of the house. I haven’t ... well, not yet!

What I have done though, is start on my ‘Cancer Cupboard’.  Lots of people have been giving me tips on things to buy - (thank you!) - and I also remember a few bits and pieces from when my Dad was ill.  This includes:
  • Pecan nuts containing Zinc to boost my immune system, which will take a battering over the next 18 weeks.
  • Dried apricots containing Lycopene, which is particularly good at fighting cancer. Tomatoes are another good source, plus various other fruits and vegetables - and chicken!
  • Iron tablets to prevent anaemia and Vitamin C to make sure my body can absorb the iron.
  • Aloe Vera gel for if my hands and feet get sore.
  • Thermometer to keep an eye on my health as I could easily succumb to an infection. If my temperature does rise, I have to go straight to the hospital.
  • Manuka honey, which is anti-bacterial and can help prevent mouth sores.
  • Crystallised ginger, to stop me feeling sick. (My Dad used to particularly enjoy the dark chocolate gingers from Thorntons. Trouble was, the rest of us liked to eat them too!)
  • Anti-sickness wristbands. 
So I haven’t been wholly inactive. Just mostly ... ;-)

But, on a separate note, someone has also sent me details of Macmillan Cancer Support’s Starlight Supper on Saturday 10 March. It’s being promoted through Smooth Radio and they are encouraging people to host a dinner party and make a donation to Macmillan. Sounds like a great idea.

Tuesday, 14 February 2012

Be prepared!

I am one of life's planners and HATE to be rushed or caught on the hop. (Just ask Mr P!) I get very stressed if I don't have time to prepare ...

So today I have been able to confirm the following in my diary:

- That my breast will be electronically 'tagged' at 3.30pm on Monday afternoon. (I'm still finding this rather amusing ... Will it have a curfew? Or be allowed out without supervision?!)

- That, at the same time on Tuesday, I'm going to have my hair cut off. Not all of it - I'm not Joan of Arc - but short, so as to reduce the weight on my long-suffering follicles in advance of chemo. (I do have a LOT of hair)

In the meantime, I'm also hoping to pop 'up town' to a really good wig shop that has been recommended and also into the office to see my lovely colleagues. (Monday morning/lunch, if any of you are around?)

There are lots of other little things that I need to do too - like buy a thermometer(!) - but it's nice to feel that things are starting to happen.

PS. Happy Valentine's Day, Mr P. xxx

Monday, 13 February 2012

At last! We're finally off the starting blocks ...

Today was a good day. A really good day. This afternoon we met with the Oncologist from Charing Cross Hospital.

Firstly, he was personable and engaging - (which, believe me, are not qualities you find often in the NHS) - and wasted no time in telling, and showing us, that all the additional scans had come back clear. It was fantastic news.

Secondly, I'm now scheduled for my first of six chemotherapy 'treatments' next Wednesday (22nd).  Essentially, every three weeks, I will go for a check-up and blood-test and then, providing my immune system is up to it, go back the next day and be given the treatment. There is then a further injection adminstered, the day afterwards, to bolster my white blood cell count.

This was all very positive and exactly what I needed to hear in terms of finally being able to forward plan. Obviously though, there is a downside ...

a)  I'm going to feel like crap. I know that. And that will get progressively worse as I continue through to June. Nonetheless, I'm hoping this can be mitigated by healthy eating, a little exercise and just being sensible.

b)  I'll probably lose some, if not all, of my hair. I've already said that I'll give the cold cap a go but I'm also looking into my wig options, so that I've got something ready should I need it.

c)  It's unlikely that I'll ever have kids. Not that I was planning to, or even thinking about it, but at my age an 18-week course of chemotherapy followed by 5-years of anti-oestrogen drugs, will rather put the kibosh on things!

However, clearly the main thing is to get better. And now we've got some dates in the diary, I'm feeling much more positive that this will happen.

First though, I need to get a microchip put in my tumour. A kind of 'tit tag', that will allow them to keep track of where the tumour was should the chemo successfully shrink it out of sight.  That, of course, is best case scenario. The next best is that the tumour shrinks to a size where surgery is feasible, have it cut out, and then follow up with a little bit of radiotherapy.

So while it's definitely going to be much more of a marathon than a light jog, at least we're up and running!

Sunday, 12 February 2012

Lazy weekend

After the surprises of last week, it’s been nice to have a few days just to relax and take stock.

The impact of not having surgery, and still not having a firm treatment start date, has been unsettling.  Certainly, I spent most of Friday feeling very deflated.

Fortunately, it was also the date of our annual visit to the black-tie ‘S.O.S. Ball’ where thirteen of us gathered to quaff champers, eat food aplenty and make a right show of ourselves on the dance floor.

It was also a chance to catch up with people that I hadn’t seen for a while and who have successfully been through a similar experience. Tips on wigs, cold caps, and handling the effects of chemo were all forthcoming with humour and frankness. It was a really great night.

Saturday though, was a wash-out!  It was a (very) late one on Friday but even, that aside, I have really started to notice how tired I constantly seem to be.  The lack of routine and structure is a major factor, I know, as is the stress and mental fatigue.  But fortunately, yet again, brilliant friends were on hand to feed us our dinner so neither Mr P. or I went hungry. (We are particularly blessed to know so many great cooks!)

So today, I’m feeling spry. Up with the larks and down to the gym to re-fuel those energy levels.  And this afternoon we’re off to Berkshire to see members of our respective families. It will be great to see everyone and, I’m sure, set me up for a positive week.

Bring it on!

Thursday, 9 February 2012

Size matters

I know I'm only 5 ft but I never realised that, medically speaking, my size would be such an issue.

To accompany my unfortunate diagnosis of 'small breasts', it appears I also have small veins. Or so the Radiographer conducting my CT scan kindly pointed out. Tiny tubes aside, it was a remarkably straightforward process.  I particularly enjoyed the fact that the machine ‘talked’ to me: “Breathe in and hold your breath ... Now, breathe normally.”

Which is more than I heard from the Oncologist; I’ll have to wait until Monday to speak to him about my chemotherapy options. The delay is obviously frustrating but at least it gives me a few more days to think about things and to draft some questions.

Speaking of which, I must thank my friends for the hilarious bluntness of some of their questions last night: “Why can’t you just have a mastectomy?” Er ... ? “Will all your pubes fall out?” Huh?!  Actually, in response to the latter, I have been told that they will. Nice.

As for the hair of my head, apparently there is something called a ‘cold cap’ that you can wear before, during and after each chemotherapy treatment. The cap is very cold (obviously) and acts to cool the scalp and restrict the blood - and therefore the chemotherapy drugs – reaching the follicles.  Its success varies according to individual and/or medication, but I think it’s certainly worth investigating ...

Wednesday, 8 February 2012

Shit. I didn't see that coming!

Well, that was a curved ball - turns out I won’t be having an operation after all.  At least, not yet.

Saw my consultant this afternoon at Ealing Hospital. Unsurprisingly, they still didn’t have all the test results back but they did have the MRI.

Turns out that, while they can’t see anything else untoward in my chest, the tumour (or the area it includes) is now bigger than it was. Originally we were told that it was small. That is, less than 2cm. Now however, it is 3.1cm. This might be due to inflammation from the biopsy but they just don’t know.

This then causes a problem. Because of its high position on my chest and my small stature – (and by that, I mean tiny tits) – surgery is now more difficult. The consultant did mutter several times: “I wish you were a few cup sizes bigger ... "  You and me both, sunshine.

If I still wanted surgery I could have it – apparently. But it would mean taking a significant chunk of what is already a ‘small breast’ - (the medical term, I believe) – while the position makes reconstruction difficult.

Ah, bollocks …

Instead, I have been recommended a course of chemotherapy to shrink the tumour first. This will take up to six months and then I’ll have the operation, if required. So, I’ve said ‘yes – but please now just get on with it.’

I’ll be back at Ealing tomorrow for my CT scan so they’re trying to get me an appointment to speak with the Oncologist (i.e. the chemo specialist). Failing that, it will be on Monday – with a view to starting chemo in the next week or so at Charing Cross.

But still no definite treatment dates. Boo!

*******************************

PS. In other news, had a letter from The Royal Marsden’s inappropriately named ‘Rapid Diagnostic Unit’ confirming my appointment on 29 February. The transfer of care request was sent on 27 January ...

Thanks but no thanks, fella!

Hmm.

I've woken up in a really weird mood today. I'm feeling unsettled.

I know why, of course. I'm going to hospital this afternoon to get the results of my various tests and scans. And while I don't have any reason to think I'll be getting more bad news, there's always the nagging fear that I might.

For the most part, I've been quite practical and 'matter of fact' as my friends have put it. But today, I've had a little wobble. I'll be honest - I'm scared ...

Tuesday, 7 February 2012

Out to lunch ...

I've only been off work two weeks and I'm already starting to lose the plot.

It's ridiculous, really. You spend your life wishing that you didn't have to drag your carcass into the office but when you don't have that enforced structure to your week, it's amazing how quickly the days start to blur.

I know these two weeks are important; to get essential tests done and let the news sink in but I really need to get into some sort of routine.

But at the moment I just can't plan. For anything. Every invitation I accept is on the proviso that I may have a medical appointment that I just don't know about yet. I'm living my life in limbo ...

And can I say that there have been a lot of invitations. Which is lovely and has really helped to distract me from the interminable waiting. But it also makes me feel a bit guilty. Because, well ... I don't look or feel ill! I know that will change when treatment starts but, apart from the fact I have a tumour, I'm actually very fit and well. If a bit bored.

So I will go out to lunch today and enjoy it. And I will take advantage of the free ticket to see the Wizard of Oz tonight, and enjoy it ... because who knows what tomorrow might bring.


Well, in fairness, I do. I'm supposed to be getting the first part of my treatment plan so hopefully - finally - I'll find out when my operation will be. So, for the sake of my sanity, I'm keeping everything crossed!

Monday, 6 February 2012

Laughter really is the best medicine

There are some people that you don’t see for months, even years, but when you do it’s like you’ve never been apart.

That’s how I feel about my old school and youth theatre friends. We’d arranged to convene in Lich-Vegas long before I’d received my diagnosis but, in medical parlance, it really was ‘just what the doctor ordered’.

Between the six of us, we’ve nearly all been touched by the ‘Big C’: parents having won (or sadly lost) the battle with cancer, as well as having had - or be fighting it - ourselves.

And for that reason, we didn’t really talk about it – well, maybe a bit – but it was all in a very matter of fact, non-emotional way.  What we did talk about though was utterly hilarious.  And, at times, completely random and surreal!  I felt like I laughed non-stop all evening.

So thank you, ladies. If laughter really is the best medicine then, with you guys around, I expect to make a full recovery!

Friday, 3 February 2012

Oh, for f*ck's sake!

God save me from officious, inept Doctors’ secretaries and receptionists.

Such was the favourable impression that Ealing Hospital had given me in those first two weeks that, on diagnosis, I promptly asked my GP to get me transferred to The Royal Marsden ASAP. 

However, a week on from her 'urgent' fax and I still hadn’t heard anything. So rather than speak to my Doctor’s receptionist, who had already failed to pass on an urgent message this week, I called the Marsden direct.

Their patient liaison officer was very nice and, after initially not being able to find me on the system, discovered that I had been allocated an appointment to see a consultant on 29th February.  Yes, you read that right - 29th FEBRUARY!

I couldn’t believe it. I explained that I was already diagnosed and undergoing supplementary tests which would probably result in surgery before that date – so she suggested that I call the consultant’s secretary. Good grief ...

So I called. And explained the situation AGAIN.  “I’m sorry Miss M.,” I was told “but the doctor is on holiday for February.  And it is usual to have to wait if you want a second opinion ...”

WHAT?!  (a) I didn’t ask for a second opinion – I know I’ve got bloody cancer, and (b) I wish my cancer could go on holiday for three weeks and let me put everything on hold!

So, after some deep breaths, I pointed out that the request was actually for a transfer of care not a second opinion. “Is it?” she said, and read the fax to me. (It was, albeit a little vague) “Well, Miss M. I suppose I could see if our other consultant has any other appointments ...” Oh, alright. Go on then. But only if it’s no bother ... ! Grrr.

So the up-shot is, neither Marsden consultant can see me until w/c 27 February – which is after the 31 day limit (post diagnosis) that I am supposed to have started my treatment.

Suddenly, Ealing Hospital isn’t looking so bad ... !

Thursday, 2 February 2012

Happy Birthday, Dad!

Today would have been my Dad's 68th birthday. So I've decided to buy a big piece of cake and eat it for him ...

I've been thinking about my Dad a lot over the last couple of weeks and especially in the last few days. That's not to say that I've been feeling maudlin but every time I visit another depressing NHS hospital, or have a needle punched in me, it does make me realise just how strong he must have had to be during what was a 7.5 year fight with bowel cancer.

He really was a stubborn old goat and one of the most bloody-minded and tenacious people I have ever met. I remember him telling me quite categorically: "Katie, I am NOT going to die of cancer." Sadly that wasn't a promise he was able to keep but it does show the dogged determination of someone who refused to let anything, especially not cancer, get in his way.

Anyway, I didn't want this to be a depressing post, just one to mark his special day:

So here's to you, Dad! I hope your belligerent little girl is doing you proud.

Wednesday, 1 February 2012

I'll get by with a little help from my friends

I really feel so very lucky. Seriously, I do. I have so many wonderful people in my life to love and support me, I can’t even begin to imagine what it must be like to do this alone.

Clearly special thanks and love must go to Mr P. He’s been an absolute star; holding my hand on appointments, making me laugh and persistently giving me cuddles even when the emotional input of it all has got too much and I’ve completely withdrawn.  

Because, let’s be honest, I’m a stroppy cow at the best of times.  And being in close proximity to someone who’s just been diagnosed with cancer and spent a week being poked and prodded really can’t be that much fun.

But we do have AMAZING friends. (That one’s for you, Jacko!)  I’ve been truly overwhelmed and touched by the sheer volume of goodwill messages that we’ve received since I shared my news. Offers of cookies, cake, lunch, dinner - (all gratefully received, btw) – have come flooding my way, as well as lifts to appointments, opportunities to chat, and invitations to just go out and get completely ratted ... [You know me so well!]

So thank you, everyone.  I know this will be a tough old journey but it makes it so much easier to know that I won’t be making it on my own.