Oh Woe is Me...

This week I'm having a bit of a moan.

Thought it would be kinder to warn you before you started reading (you'll never get the next five minutes back!)

In the last two weeks I've been:

Rushed in to hospital (Ealing hospital at that!) in the middle of the night - with a temperature. And not allowed to leave for FOUR DAYS. Until my temperature was back down to 'normal' for 24hrs:

Stuffed up to the eyeballs with every kind of 'anti' you can think of - antibiotics, antivirals, anti fungals, antisocials (not really the last one but that's a bit how I now feel):

Poked with so many needles I've lost count (they couldn't use my portacath at Ealing (see previous blog for description and purpose of this apparently useless new addition to my poor old bod)):

And hot flushing like a super heated lavatory.

And I am now TOTALLY FED UP and quite literally SICK & TIRED of the whole bloody thing!

I went in to see Dr Lowdell, my delightful and charming oncologist today to sign the consent forms for the next stage of this awful, arduous journey. Radiotherapy.

I was hoping they'd let me volunteer for the trial they're running at Charing Cross at the moment - three weeks at a high dose instead of five at a slightly lower... And it turns out not only am I not allowed to do that but I've got to have SIX weeks. Five weeks on my breast and neck (due to the lumpy lymph nodes) and a further week on just my boob. Five days a week for six weeks. Starting in early to mid-January. Humph.

So I (or to be precise, my treatment) will be ruining yet another holiday for my poor, beautiful boys and my long suffering husband (we were supposed to be going away in the spring half term but I'll still be having treatment then so...)

BOLLOX.

But this week (so far) I'm feeling almost normal. I managed to go back in to work today at the BOA. I had a rehearsal after work, for my five minute standup debut with Sophie (gorgeous friend and comedy guru). And barring major incident and accident I will be performing that five minute routine on Wednesday evening, sometime between 7 and 10:30 at the Cavendish Arms in Stockwell. It may or may not make other people laugh. But writing and rehearsing it has made me laugh and helped me see the (sometimes extremely) funny side of this stupid, senseless situation in which I currently exist.

So I don't really mind if nobody else laughs - that's up to them I guess.

Is cancer funny? Probably not. But laughing at it and the treatment to get rid of it really helps to render the whole thing powerless. Powerless to make me a victim. Too weak to rule my world. Not 'the big C' but the annoying, insidious 'little c' - a disease with the ability to kill but not the strength to conquer. Not this woman, not my spirit and certainly not my sense of humour!

Tedious Neediness.

I spent most of last week in hospital.

In the early hours of last Tuesday morning, I woke up feeling rubbish. I took my temperature as I was feeling decidedly 'eye-ey' (an expression of my Mum's which she used when we were growing up, for that 'hot behind the eyeballs', glazed thing which goes on when you have a fever) and it was 38.5C (101F in old money) half a degree over the "call the emergency number immediately" temperature.

So I called the Emergency number.

This wasn't the first time I had called the out of hours Charing Cross Chemo number. On the first round at about day 9 I'd been feeling weird (hardly surprising!) but a kind of total, all over, inside and out weariness just took me over. So I took my temperature.

I was advised, before the chemotherapy began to get myself an accurate, digital thermometer. This is because a high or very low temperature is an indication of neutropenic sepsis - a condition of the blood where the white blood cells (specifically the infection fighting, neutrophils which make up about 70% of the white blood cells) drop to a dangerously low level. This leaves the body with a much lower defence against any disease. And a much higher risk of death from a simple infection.

In chemotherapy patients the decrease is caused by the chemo drug stopping the bone marrow from producing enough new fighting cells to go around.

When I phoned the first time it was because my temperature was low (below 36C) at 34.8, the sleepy sounding Doctor on the line suggested I retake it an hour later and see if it had recovered at all. I never did because I fell asleep and in the morning it was back up to the 36 mark.

The second time I called was when the poor old veins in my right arm decided to pack up. That time (it was about four in the morning) the sleepy advice was to go to A&E in the morning. So I was able to go to Charing Cross Hospital A&E.

Last week I'd started to feel rubbish on the Sunday (Remembrance Sunday) but recovered slightly on Monday afternoon, so went to get my flu jab (which is safe for chemo patients as it's a 'dead' vaccine. When abouts I had it in the cycle was relevant but I don't remember anyone telling me that! Chemo brain?). I had tried, half heartedly and on several occasions to get through to both the out of hours number on Sunday and office hours number on Monday but with no specific symptoms and my temperature only a little bit on the warmish side, I gave up.

When I was told, at 2am on Tues morning to go to A&E immediately, I went into a bit of an internal strop. I wanted to go to Charing Cross A&E as that's where I'm being cared for (in every sense of the word - they really are brilliant) but there was no way of getting there easily at that time in the morning. But I live only five minutes walk (on a healthy day) from Ealing Hospital.

I don't like Ealing Hospital.

I have my reasons (most of them are rational and based on a number of previous, distressing encounters and experiences I've had at the place). But, after I'd woken Mike (husband) and we'd tried a couple of neighbours to no avail (we couldn't leave our two sons alone at night for what would've been over an hour, if Mike had driven me to Hammersmith). I resigned myself to my fate and agreed to go to Ealing.

They were (almost without exception) brilliant.

The building is still horrible and not perhaps quite as clean as it could be. But the staff were great. Eventually I was moved up to the 8th floor (where the views are fantastic!) and because my immunity whilst luckily not neutropenic, was at a low ebb, I was given my own room. I can't say it was pleasant - it took until Wednesday evening to get my temperature down to 'normal' and I was hooked up to a drip (on my poor old right arm again because Ealing don't normally use portacaths (of this more another day).

To say I was at a low point, both physically and emotionally is a bit of an understatement. I felt needy and hopeless and SO fed up with the enforced inertia. I became inert. I stopped writing this blog after a couple of paragraphs. I dozed off at all hours of the day. I had to wait for people to bring me my meals (which were surprisingly good for hospital food - the macaroni cheese was a particular success as was the cauliflower & broccoli cheese (cheesy sauces are obviously a speciality of the chef!)). I couldn't leave the ward. But wandered round as much as possible after I started to feel better, just to get out of bed.

I'm not good at being looked after. Looking after others, I can do that but letting people look after me is really hard. And I don't like lying around all day, it seems like such a waste of life. Last week I had to. I got a bit needy on social media too (which is where I came up with the title of this blog - it'll be going into a poem at some point!) but my friends on Facebook (both local and further afield) were amazing (and though much fewer in number, no less so on Twitter too). With kind words, messages of love and support, chatty PM/DMs, funny photos and jokes, (and a couple of very welcome visits in person with delicious things) they all rallied round and helped to lift me out of the pit I was sinking into. Facebook and it's ilk may be the scourge of modern life in some people's view, but I know I wouldn't be in such a healthy mental state without it. Weird huh?!

Leaving you with the poem I wrote on Friday night when I couldn't sleep (despite finally coming home at seven that evening and lying in my own bed, I was on so much anti-this & anti-that I was totally wired!)

My Walk

The straining of a spring in a watch wound too tight

The wild wind in the tall trees nagging me at night

The World weary tallship heaving t'ward harbour home

The bird with broken white wing, dying all alone.

A Watch

A Tree

A Ship

A Bird

I am all of these in part

But these aren't all that I am

I am me - I am a human with a beating heart

So I will carefully consult the chart

And place my feet upon the ground

I will walk to my rhythm and I will revel in the sound

(News of stand-up gig next time...)

Bored of the taste.

When we were growing up, my sister, brother and I had a phrase we used when we didn't want to eat any more of whatever it was we were eating (for some reason macaroni cheese comes to mind although I could now eat that until it came out of my ears!). It was usually the main course and it was code for "I really don't want any more of this as I'd like to leave some space for..." (Usually pudding or cake!).

Well I'm using that phrase again now. Only this time it's the chemo 'taste' (and it does come with a rather unpleasant taste and adverse effect on the whole oral experience as it happens...) which I'm 'bored' of. Very, very bored. Fed up. Sick and tired... Hahaha - that's an apt expression if ever there was one. I am thoroughly sick and totally tired.

But I knew this would happen.

Chemotherapy is not renowned for it's uplifting, invigorating and health enhancing qualities (despite the overall aim of the treatment). Ironically, in order to rid the body of cancer it attacks the very body it's aiming to heal. The ultimate, "If it stings, it's doing you good" experience.

I know all this. But I don't want to be ill anymore. I want to be well. NOW. Please...? I want to leave space for... (The rest of my (hopefully) long life)

So, today I've had chemo number four. The first round of the T initial (Taxotere) of the FEC-T treatment. But before that I had to have my mid point Oncology review. And a portacath inserted (yuck!)

During the last chemotherapy session, the veins in my right arm finally got so painful I decided the only way I could bear the next session was via a portacath. This was something I was hoping to avoid (mainly because the thought of it makes me feel decidedly queasy)

Until the weekend before last I still wasn't 100% convinced that I needed it.

Then in the early hours of that Saturday morning I woke up with horrible pains in my right arm (my chemo arm). My ring finger was swollen and a bruise had mysteriously appeared. The back of my hand was also puffy. It being the middle of the night, the fears which would normally be held in check by rational thought, were exaggerated by the dreamworld I'd just been dragged from and I almost immediately decided that I had developed a DVT... In my finger! (DVT stands for deep vein thrombosis (clot) and the fact that there are no deep veins in fingers completely escaped me at 4 o'clock in the morning!).

I phoned the emergency number provided in my little, red, chemo book.

A very sleepy sounding voice went through all the symptoms with me and decided that whilst it wasn't an immediate emergency I should go to A&E in the morning (proper morning not 'middle of the night' morning).

I got to Charing Cross A&E (I decided to go there rather than Ealing (which is a five minute walk) for all sorts of reasons but the main one was the easier access to all my cancer treatment notes) by mid-morning. I realised I'd be in for a wait but was hoping they'd just check me over, tell me there was nothing to worry about and send me home as we were supposed to be going away for half term that afternoon...

Rather alarmingly, I was triaged straight away. And sent to sit in a drafty corridor at the back of A&E. Where I looked after a strapping young man who was about to faint. Having done more than my fair share of fainting back in the day, I recognised the signs and went to fetch help before he keeled over! After he'd gone, I waited & waited (which I took for a good sign). Then they called me in and took a blood sample. From my foot - none of the veins in my arm were giving any blood at all - bad sign. Then they sent me for a lunch break! That has never happened to me in any previous A&E (and I've been to a few in my time!) - I took it for another good sign that they didn't think anything much was wrong...

After a hearty cooked breakfast in the cafe next door to the hospital, I returned for another wait.

Eventually the lovely young doctor came back with my blood results. Not good news. There were signs of thrombosis (clotting) and I would have to have a blood thinning injection, return the following day for another one (more bloody needles!) and a scan of the veins in my arm on Monday.

The cancer and it's consequences were conspiring to ruin yet another holiday... Bloody Cancer.

Another couple of hours on Sunday, spent waiting in Charing Cross, this time in the Clinical Decisions Unit. Not wasted however, as there were two other women waiting and we all got chatting and swapping stories (medical and otherwise).

The following day I turned up early at the ultrasound department and was seen really quickly by a bubbly Australian sonographer. She thoroughly searched the veins in my arm and found that all the superficial ones were buggered. There was very little flow through any of them and clots in two. But the deep veins, the ones that are dangerous when clotting (thrombosis) occurs, were all clear.

I had been frightened to sleep the previous two nights because if a clot in a deep vein moves it can cause heart failure or stroke. If I was awake and aware I would be able to warn Mike (my husband) to call an ambulance. If I was asleep I wouldn't be able to and that may well have been that. Scary.

But after a chat with the Doctor on the CDU he was happy that the veins would heal themselves without any further intervention. HOORAY! No more medicine or injections. And we were allowed to go to Swansea for our half term holiday. HIP HIP HOORAY!

After a lovely week away, I had the portacath insertion to look forward to. On Monday morning, after a consultation with the Oncology Registrar (where he told me I had 30% chance of the cancer returning - for future reference I'm going to suggest he tells patients that there's a 70% chance of it NOT returning as somehow that feels a lot more positive!), I eventually (via various circuitous pre-assessments and after getting lost... Twice!!) made my way to the Vascular Radiology department. And eventually had my portacath inserted. Yuck.

A portacath is a small metal disc with a silicone surface which sits under the surface of the skin, usually on the chest. It is attached by a narrow tube to a major vein (in my case the jugular) and can be accessed easily by means of a special needle, to administer chemo and take blood samples.

I'm not going to go into the details of the operation (which is done here at Charing Cross under local anaesthetic). Suffice to say, it was distressing.

So, now I've had chemo number four. I'm two thirds of the way through the course and at the metaphorical 'breakfast stop' (to use a Long Distance Walkers' analogy - the breakfast stop on the annual 100mile challenge is always at about 60+ miles). It's the point on the walk at which you know (barring accident and/or major incident) that you will complete the challenge. You have a lot less to go through than you've already endured. That's where I am now. With the chemo. BRILLIANT!

And, on a really exciting (but slightly scary) note, I've just had my very first standup comedy booking confirmed for 26th November at The Cavendish Arms, Comedy Virgins night. All welcome but NOT please if you're easily offended! It's going to be dark and a little bit twisted (how could it be anything else?!). More details to follow in subsequent blogs. Scary, but nowhere near as frightening as this whole Cancer malarkey!