Drugtastic news

Why beat around the bush... it's good news. The trial drug is working! I'm still a bit stunned by the news, the good news, the really good news. Delivered by a doctor with a smile on his face, which was lovely to see. And the sun was out. All I needed was for a robin to fly in through the window, perch on my finger and burst into song.

Waiting for my scan

I'm sitting at home, with precisely 25 minutes to go before I have to leave the house. Today is the day of my three month CT scan, the shadows, shapes and contours of which will reveal whether the trial drug Axitinib has worked on my sarcomas. The aim has been to shrink or soften them... has it? I thought I had lots of 'things' to do before I left, and of course I do, but I find myself sitting in front of my computer just staring at it. Tick tick tick, tap tap tap... it appears I am interested in nothing. I have no distractions.

I'm back!

Hello! Remember me? The world's most unreliable blogger.... Well, I'm back and on almost a special date as well. Tomorrow, June 2nd, is the one year anniversary of my hysterectomy, the date I officially became the woman without a cervix. It feels both a lifetime ago and yesterday. I can still vividly remember my stay in hospital - lying in bed in pain, with a huge scar on my stomach that I thought may unravel at any moment. I tried to talk the nurse out of making me stand and take two steps to the chair where I had to sit and begin my recuperation. 

'I don't think you realise, Natalie, I've just had a serious operation....'.

The whole experience also feels like a million years ago, so many things have happened since then: cancer, secondary cancer, chemotherapy, side effects, getting married/committed, turning 50, battling with my fear and anxiety over being made redundant. But the overarching question I have kept returning to over the past year is one I think we all battle with from time to time, it's the question we fine tune all of our lives. Who am I?

I Am Data

I haven't posted (again) for a while and I have nobody to blame but myself *gnashing of teeth*. After learning that the chemo hadn't worked I kind of, sort of, definitely lost my bounce back factor. But, after realising that the sort of flexibility I need to be able to surf intact across, over and under these unwanted obstacles is down to me *more gnashing of teeth, breast beating and generally feeling sorry for myself* I'm climbing back on the surfboard. What else can I do? Everyone else is trying so hard to be lovely that I feel I'm missing out if I don't join the party.

Scan results - bad news

It's been a while since I posted. To be honest, having finished chemo I wanted a bit of time to enjoy the fact I wouldn't have to continue the three-week cycle that had come to dominate my life. Even though I was exhausted and everything still tastes pretty strange, a new dawn beckoned. Or that's what I thought. Our meeting with the Proff yesterday put paid to that theory. The cysts are looking more like sarcomas and have increased in size. In short, the chemo has stopped working. It's a bitter pill to swallow after six months and frankly, I'm gagging on it.

Last chemo

When I started chemotherapy last September third to be precise, I never thought I would get to the end of my sentence. A stretch of eighteen weeks seemed an eternity. Then it was stretched another six weeks when my original chemo didn't work and I was switched to a new regime. Then another two when my neutrofils dropped below a certain amount. But here I am, better than I thought I would ever feel. I did three yoga classes last week (and then lay down for the whole weekend), but hey! Three yoga classes, count them! And now I'm through. I had my last chemotherapy session yesterday. I feel astounded I have passed the finishing line. And that I've passed it because the chemo worked. Amazing.

I have become a woman who sleeps with her head wrapped in a towel. Specifically, I'm a menopausal bald woman who sleeps with her head wrapped in a golf towel. Who knew that the quick dry sports towel was the exact size to fit around my cranium, leaving a tiny tuck in that secures it just enough for me to drift off into sleep, or at least a hormone lite sleep, which finds me up and down, asleep and awake, throughout the night.

Good news!

The last week has been spent worrying, worrying, worrying about my scans, which I had on Tuesday in preparation for meeting the doctor to see if I would continue with the course of toxic pink Doxorubicin. After attending Life: The Festival of Death at the South Bank last week, I did feel that I had covered myself in case the news was bad. What I hadn't expected, or prepared for, was really good news but, guess what? The chemo is killing the cancer!

Yesterday was spent attending Death: Festival of the Living at the South Bank Centref with Ally. The two day festival was a surprise success for the organisers, who were caught short by its sell-out success and a number of the workshops were filled to capacity, much to the annoyance of those who couldn't get in.

Update on how to post a comment

Despite my best intentions, posting on this site is still difficult. One of my original hopes when setting up the blog was that it would enable me to become more technically literate... so I (actually my sister) have investigated the problem and I (she) has come up with a solution, or at least a way around third party cookies, which seem to be the problem.

While I have been writing fascinating blog entries in my head, in real life I have been hanging out with my sister and not writing anything. Suzanne has come across from Cairns in far northern Queensland and is spending six weeks with myself and B. At first I thought her hot tropical blood mixed with London cold would lead to her expiration through overwearing of thermal layers, but the unseasonably warm weather (nine degrees in London today!!) and the discovery of B's super thick winter coat has allowed her to survive. So far. My brother and his family also arrived yesterday for five days, en route to a skiing holiday in America. I am so lucky to have a family who respond to a crisis by getting in touch and getting on a plane. Even my dad made it across for our civil partnership back in September.

Christmas highlights

Well.... I did have my chemo last Wednesday, which in this festive season seems like a lifetime ago. It had been a month since my last infusion and the space inbetween had made the whole experience seem a bit hazy, but it all came rushing back when I walked through the revolving doors of the Marsden. 

A week behind....

I turned up today at the Royal Marsden eager to take my medicine, only to be told that my neutrophils (part of the white cell count) are down again and that I have to wait until next week for cycle three. It's so annoying! Just when the chemo is working I'm chucked off the wagon.

Good news!

We met with the Professor yesterday and were given our first good news since this whole saga began. The chemo is working and my tumours have shrunk a little bit! High five to Doxorubicin. The news was so good and so unexpected that we celebrated with pasta and an early night. Oh yes, don't tell me I don't know how to mark the big occasions.

Back on track

After three white cell injections and a week long course of antibiotics, my neutrophils (white cells - medical speak!) rallied and I was able to have my second cycle of the Red Devil. I was pleased to get back on track because it means that I am getting closer to my appointment with the Proff and for finding out if the new treatment is working.

No chemo today

I arrived to have my chemo today, but it turns out that the Doxorubicin has been doing it's job a little too well. When my blood was put under the microscope, it was revealed that my white cells were too low to allow me to take my second dose of chemo. So, I've been sent home with three injections that encourage my white cells to grow in my bone marrow, and a week's worth of antibiotics. Strangely, it isn't everyone else's germs that I need to be worried about, it's my own bacteria that could create an infection. On a biological basis, I have become my own worst enemy. How incredibly annoying is that?

A day in three parts

I had a total cancer day yesterday - and I really enjoyed it!!

My morning was taken up with an accupuncture appointment, which sounds really indolent but it was in the middle of the morning (in my defence). Also, it wasn't just any old accupuncture appointment. My friend Moss and her mother Wendy, who herself has fought off kidney cancer twice, rang up with the suggestion that I might like to see a very highly sought after Vietnamese accupuncturist who they had both seen and would highly recommend. 

The new beginning...

Here I am beginning my new chemo treatment. Look how lovely and toxic and pink it is. It's been two days now and I'm feeling awful, so hopefully it's working.

It hasn't been a good week....

My cancer is back. It seems unbelievable that it could return in measurable tumour form in less than seven weeks... but there you are, it has. And while it's not The End, it's the end of a future where everything is going to be alright. I can't be cured, from now on I'm to be managed. For a Virgo with a fiercely independent streak, this is galling on every possible level.

Wig watch

I took Danni out for a test drive on the weekend. I don't think there is any doubt that she passes. Whether Danni and I together pass as me is debatable, but for anyone who didn't know me I was effective human wallpaper to their day.