Friday, 31 August 2012

Chemotherapy begins

The beginning 

An hour and a half in and my first impression of chemotherapy is that it's very very boring. I sincerely hope life-saving and brilliant and wonderful too but right now just very dull.

I am sat in a reclining chair, set to the max (if there's a gadget I'm playing) with my bag attached and the medicine pumping straight into my blood stream. The room is full of other people wired up to their bags and drips, some reading, some talking, all just a little bit bored. It's a long procedure. We're here for about 6 hours this week and this room feels very small and very warm. 

4 hours in 

The nurse we met earlier in the week advised me to bring headphones and now I see why. The old blokes down the end of the room are revelling in their overly-detailed tales of medical trauma and post-chemo hell. Frustratingly the loudest and most of annoying of them isn't actually under-going treatment, it appears he's just here to make sure that mine is as arduous as possible. Like other people's dreams I have a limited interest in other people's ailments. Ironic considering I am banging on about mine.

I am feeling vaguely hot and slightly nauseous. Neither of which was helped by sitting on the wrong side of the room at lunchtime - strategies need to be employed in future. By the time the lunch trolley reached me there was nothing left apart from the smallest quiche in the world. And rather like a version of Dante's Hell I got to watch the people opposite eating fish and chips.
 With mushy peas. 

A quiche or a spot?

I am feeling vaguely nauseous, have cramps and hot flushes and resent the fact that my drip is attached to the hospital equivalent of a dodgy shopping trolley and I can't go anywhere without it. I am longing for the stupid process to be over, feel like shooting the old men at the end of the room; and any zen-like kindness that I may have once had has left the building, slammed the door behind it and given it a harsh kick out of pure spite. 

And yes I am feeling sorry for myself. I know cancer is indiscriminate but I was 15 years younger than anyone in that room and actually over 30 years younger than most. And it just feels unfair, and I know it isn't fair on anyone and I should be a better person but I just want to cry and rage and most of all I want it to all go away. I want to go back to the time when I wasn't ill and I am regretting every bloody moment that I wasn't happy and that I took it all for granted. And I am scared. 

Fortunately Al was there and so were the hugs and the support I needed, and we got through it. He is amazing.

Next time I am taking an ipad with a downloaded TV series that is unemotional and distracting, a back up charger and my own food. 

My life-saver
My other life-saver - promoting the fabulous Battersea!

In which I become radioactive

So from the warm bosom of the oncology unit I found myself thrust down to Guildford Diagnostic Imaging on the 30th August

Allianz Medical who run the MRI scanning and PET scans at Guildford Diagnostic Imaging are clearly a privately run company.  The tea is from one of those free machines and the biscuits are posh ones in individual wrappers. The magazines in reception are in date and there's copies of today's Mail and Telegraph to peruse. Not that I had a chance. 

First I was a bit late. The Royal Surrey Hospital is a cunning optical illusion with two ground floor levels. You may enter at ground floor level and feel that you are walking in the right direction, and not going up or down stairs, but you soon discover that you have mysteriously climbed a floor and have reached the first floor. It was either designed by hobbits or hogwarts. Anyway by the time I arrived, I was slightly hot, bothered and out of breath (which okay is how I arrive at most places) and it was already going a bit array. Oh and I couldn't eat until the scan was finished. 

The Royal Surrey Hospital

I still had to wait another hour to be seen though - this is the longest delay I've had since this whole cancer experience started and was my first non-NHS appointment (even though the NHS have paid for the scan). I was then taken into a room with a ridiculously short bed, so short my feet came off the end. Apparently I am too tall - at 5.9"?! Do men not have scans? Must be the hobbits again. I was told to lie down and not move...

The nurse left me without speaking and went into the corridor (I wasn't sure why). I could see just about round the corner that she was opening and closing a big metal box. She then re-emerged to my cubicle wearing purple gloves and carrying a smaller metal box. I honestly expected dry ice at this point. The needle was revealed with it's metal gun attachment and she flicked the end. Nurse Ratchett met Blowfeld...

I've had cameras placed where the sun doesn't shine (but a tumour does grow), a blue tube inserted that runs to my heart and numerous blood tests and injections without any real misgivings, but at this point there was something a bit mad professor like about the whole experience. The strange signs up reminding me that I was radioactive and that men and women must urine sitting down so all radioactivity is flushed away didn't help. 

The isotope (?) dye attaches itself to any metabolic movement so while it's being dispersed throughout your body no movement is allowed. Not even reading as this uses eye muscles. 

After an hour I was sent through to the scanning room and told to lie down on the bit of the machine that slides you in and out of the scanner. Again you can't move. For about 45 minutes I lay still with my hands above my head (not great with a trapped nerve in my shoulder) and was forced to listen to Heart FM. I don't know if it was the absence of my lovely wonderful husband or the dentist like feel of the place or that I was tired and hungry but this was a bit of an endurance test. I had to listen to Muse for the last 5 minutes. Oh yes. I've suffered. 

And then I got dressed and left. Al was waiting outside with hot cross buns and a big smile - both of which were leapt upon. 

Thursday, 30 August 2012

A trip back in time...

For those of you who are new to these updates here's the emails that we sent out before we went all web crazy and just put them straight up here...

29th August 2012 - COTTON PICC IN

Sorry bad joke.

So here's the update from today's cancer treatment battle. 

The PICC (peripherally inserted central catheter) line has been successfully inserted. It was an almost pain free experience and the nurses were lovely. 

There were some slightly weird aspects to it, which as I have no squeamishness at all were more fascinating than upsetting.

Firstly it took a few goes to get it in the right place. The line kept taking a left instead of a right and pointing up towards my jugular rather than down towards my heart. They established this by flushing the tube with saline, if I could hear something the line was pointing the wrong way. I've never had my ears syringed by I imagine if it was done from the inside this would be what it sounds like. Anyway after jigging it around and manoeuvring me a bit they got it pointing the right way and the X-ray showed it all in perfectly. I am bionic. 

The second slightly weird thing was looking down and seeing a bright blue tube poking out of my arm. I felt a bit like a science fiction character discovering that they're actually robot not human - it looked very terminator/alien. 

Then they remove the wire from the tube. The tube itself is too floppy and flexible to be inserted directly into the vein so it's stiffened with a piece of wire. Looking at the bright blue tube pointing out of my arm and seeing a long piece of wire being pulled out was a strange moment. It reminded me of rabbits coming out of magician's hat or hankies from a sleeve - Al commented that you only get those extras with BUPA. 

The net result of all this weirdness is that I have a tube and valve attached to my right arm; with a patch of Essex coloured skin (sorry natives) surrounding it.  I scared people on the train taking this picture!

 We also had a chance to have a quick look round the ward where my chemotherapy will take place. Hospitals are fundamentally depressing and I won't pretend that theChilworth day unit is full of joybut there's lots of normal functioning individuals having cancer treatment, and copingbecause that's what we do. The nurses are refreshingly open and talk about cancer and chemo and patient's hair falling out in a way that stops you feeling like cancer is a taboo subject. The other patients are on a similar journey and will show you their PICC lines and tell you how they feel and there's no hushed voices or pitying glances. Al and I both felt pretty positive after chatting to people on the ward. And the senior nurse is looking for a beagle so I reckon a quick look round the kennels is in order. 

Anyway tomorrow I have a pet scan and become radioactive. Then on Friday the drugs start pumping in.

22nd August 2012 - Update 2

Today we had another appointment with Dr (Seb) Cummins (Al and I have now invented an entire life for the poor man based on his name, watch and demeanour). Anyway he was very good and explained everything to us. I will be treated with a mix of chemotherapy and  cetuximab (antibodies) the side effects of which are explained in a bit!

Here's the timeline first;

On the 29th of August a PICC line will be placed in my arm. Slightly grossly this runs from my arm through the vein to my heart. We even saw the tube which is thicker than you might imagine. Luckily I am not even vaguely squeamish (unless it's a dead bird or mouse, that is just horrible) and find it more fascinating than completely hideous.

Then on the 31st chemo starts. The initial dose of chemo takes 2 hours, followed by 2 hours of anti-nausea drugs. They then attach a pump to my arm and this sends more chemo and steroids straight into me over a 46 hour period so Saturday and Sunday. The district nurse pops over on Sunday/Monday to remove the pump. And we meet again a week later so she can flush the pump through with saline.

About 10 days later (on the wednesday) I go back to Guildford and have a series of blood tests in prep for more chemotherapy that Friday. The blood tests will determine if the chemo and antibodies are shrinking the tumours and how well my immune system is handling them, what the effect is on my blood count etc.

This happens 6 times, ending in November.

Then there's another load of scans and they decided whether or not (quite likely though) to repeat the treatment before seeing if they can do surgery. And then there'll probably be a load more stuff. Slightly longer than a course of antibiotics!

There are numerous side effects; tiredness is the big one, with some flu type aching (I've never even had flu) and there may be hair loss but more likely just thinning, my immune system will be weak, so properly ill people (bacterial infections) need to stay away, colds are fine. Oh and possibly I may feel nauseas, have constipation or diarrhoea but it's hard to know which one. I'd settle on no nausea and a happy medium for the other two.

It's also highly likely that cetuximab will give me a 'rash' ie acne. It starts about 8 days in, peaks at 2/3 weeks and then improves/settles. Apparently it's absolutely horrible - proper angry sore acne, however it's also meant to be a sign that it's working. As I had a relatively spot free adolescence I reckon a few months now is not a disaster. Although the combination of steroids, chemo and cetuximab could mean I am fat, bald and spotty. So you have been warned that some self-pity is to be expected, and I reckon a little bit allowed.

So that's stage 2 of our cancer journey.

The team at Guildford are fab. I should be able to work on Wednesday Blood Test Wednesday (it's a U2 song now) and the majority of the chemo stuff is over the weekend - which is probably where you all come in. Al may need a break from my whining at times...

Have a great weekend everyone. I am feeling good, partially I am because I had my first dose of steroids today and whilst (apparently) not performance enhancing they have definitely given me a shot of energy. Sadly I am now excluded from major sporting events. I'm also pleased that we moved to this more active phase of the cancer battle. As you know I'm not that great at the waiting around bit!

14th August 2012 - Update 1

Al and I met with the gastric oncology specialist today - Dr Cummins. He was very good and explained everything to us really clearly. 

Basically I have secondary cancer in my liver and a small amount in my lungs. They do not know where the primary cancer site is. Therefore I have a full colonoscopy on Thursday, a test that I can't remember the name of but where a camera is put down my throat. (sounds vile) and probably a mammogram (although there is no evidence of breast cancer). I have also been provisionally booked for a pet scan (there's so many animals here to choose from...). If all of that is inconclusive then they will do a liver biopsy.

The reason for all the tests is that the form my chemotherapy will take and the prognosis all depends on the cancer type. It's weird to be longing for blood cancer...

On a more positive note Dr Cummins was great. He wants to 'find the primary cancer and salvage this situation' and he believes that I can be treated. And he said I can have a glass of wine or two. 

So it still isn't the greatest of news.

One lovely thing is that the full colonoscopy was booked for Friday and when the woman from east surrey hospital told me I cried and said it was Ilias's birthday that day and that he's not had a birthday party before - I hate the thought of it being spoiled. She called me back 10 minutes later and told me that they'd managed to rejig things and move it to Thursday. Next time the faceless NHS is mentioned I'll remember that bit of very human kindness! 
Sorry for not phoning round it was a fairly long and slightly stressful day. Only because I now pretty much expect bad news at every hospital appointment.