I received another letter from the Royal Marsden this morning.  They send me copies of letters they send to my GP re my clinic appointments.  I just had to share with you what they had written: “Piia will go ahead with cycle 5 of chemotherapy today.  Her last PET done on the 2^nd September 2009 showed a favourable treatment response.  She has a repeat CT scan booked for this week and the plan would be to repeat a PET after 6 cycles at which point we would stop treatment assuming that she has had a complete response.”

The words “stop the treatment” are bringing me so much joy this morning.  I can always dream for a moment…

I picked up some old post from my old house today, and there was a letter from the Royal Marsden after my third cycle of chemo.  It talked about the results of my PET scans: “The results of the PET CT scan prior to the 3^rd cycle showed a favourable response to treatment by both PET and CT criteria with however persisting active disease with residual mediastinal mass and small volume supraclavicular, sub pectoral and hilar adenopathy.”  Adenopathy means ‘the abnormal enlargement of lymph nodes’, and mediastinal refers to the area in my chest where the mass is.

I liked the bit ‘favourable response’, but I did not like the sound of ‘persisting active disease’… Does it mean the cancer is still active?  I suppose it is, until it has completely been zapped?

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I am so gutted.  I just had a text from my lovely friend Julie who is touring with Franz Ferdinand to say she has got a spare ticket to see them this Saturday.  I had to say no.  Because, I’m not feeling that great, and if I do anything extra fun nowadays, I end up ill, and possibly in a hospital with IV antibiotics.  I may sound a bit pessimistic, but I am sorry that is exactly what has been happening lately.

Also, I had promised to go out to our local pub with Suzie on Saturday, and I want to go out with her.  It has been absolutely ages since we have been out together!  We used to go out at least once a week.  I do not even think, I have been in a pub just with Suzie since the beginning of this year!!??  The local pub is close by, and I can go home when I want to, or when I start feeling tired.  I am like a 100-year-old lady!  Maybe I should just give in, and become a full time hermit.

My little sister and her boyfriend are coming to visit me in less than a week’s time!  I better not be ill then. I hope they do not mind hanging out with a ‘granny’.

I had my fifth chemo yesterday.  Again, I slept most of it thanks to the antihistamines.  I finished ‘already’ at 6pm!  Ruth came to pick me up, and took me for a lovely Vietnamese feast before dropping me off home.  She is an angel.

I’m going to have a CT scan tomorrow.  I am hoping that it will shed some light how many cycles I will need.  Although, my medical team did say, I will have another PET scan after the sixth cycle, and if the cancer mass is still reducing, I will have more chemo.  The doctor I saw yesterday had not met me before.  We were discussing the PET scan pictures, and I said: “the cancer mass in my chest was quite big”, she immediately replied that my cancer mass in my chest was “MASSIVE”!  I think she was quite shocked how big it was… However many cycles I need in the end, I should at least be over half way through the treatment.

I am feeling a little sick today, so I might have a snooze now.  Laters.

I had my first ever TV appearance on Saturday night.  It was the RIBA Sterling Price programme for the best building in Britain 2009, and the Maggie’s centre in London was nominated.  Kevin McCloud who presented the show interviewed me at the Maggie’s a little while back; so a little piece of that footage was edited into the film introducing the Maggie’s building.  It was really strange to see and hear myself on TV.

You can see it via this link (only for 27 days or so, and possibly only in the UK):

http://www.channel4.com/programmes/building-of-the-year-riba-stirling-prize/4od#3006185

The Maggie’s bit is at about 30:30 minutes of the show time if you don’t want to watch the whole thing.

Oh, the Maggie’s building won!!  It’s officially the building of the year 2009!  Yay.

On Monday I had a call from the Maggie’s Centre asking if I could do them a favour and come to the Maggie’s on Tuesday morning to speak to Sarah Brown.  Automatically, I said yes.  For a second I had to think who Sarah was, but it quickly occurred to me, that of course she is the prime minister’s wife!

On Tuesday I made my way into the Maggie’s.  It was busy there, loads was going on to show Sarah what the centre can offer.  I was asked to sit in one of the side rooms with three other people who use the centre.  Shortly after we sat down, Sarah and two other ladies and Bernie who runs the centre came into the room to listen to our stories.  I was the first one to speak, and the whole time I spoke, Sarah stared at me intensely. The other two ladies were more proactive, asking questions when we were telling our stories, whereas Sarah merely sat quietly next to me, staring at me.  Afterwards, I asked if someone could take a picture of us (please see below), and chatted to Sarah for a short while.  She seemed like a lovely lady.  It is fun to think that Sarah may mention me to Gordon when he asks her how her day was!

I met some nice people on my visit there.  I had an interesting chat about how chemo affects the brain.  I mentioned to the other chemo patients, that I feel like my brain is not working like it used to; I sometimes find it difficult to focus, I forget things easily, I see flashes (‘things’), and numbers ‘jump’ sometimes when I read and I end up momentarily reading them incorrectly (dyslexia??).  The girls I met also reported similar experiences.  An oncologist had told one of the girls who is a medical student about ‘chemo brain’.  The research has shown that chemo can affect the brain metabolism and blood flow and thus cause problems with memory, focus, and multitasking.  I did not know this!  No one mentions this as one of the side effects.  I need to get a brain training game for my Nintendo DS ASAP!

The Maggie's.

Sarah Brown is the one next to me, the tall one.

I did go out dancing last Friday…  and I LOVED it!!

(Probably why I have been so ill…  oh well, it was worth it!)

What a rubbish 4^th cycle of chemo!  I started to feel ill on the Wednesday of the 1^st week post chemo, first with a sore throat.  This then developed into full-blown flu by Sunday.  Last Sunday morning I called the hospital because my temperature was rising, and I felt awful!  The on-call specialist nurse said I should go to the accident and emergency (A&E) department ASAP to have my bloods checked.  Theoretically, I should have gone to the Royal Marsden, but they were full, so I needed to go to any A&E. I was not keen on going to the Homerton in the view I most likely needed to stay the night, so Suzie and I decided I should go the Chelsea and Westminster, which is far nicer hospital, from my own experience.  Minna called our friend Maxine, who got out of bed early morning to drive us to the hospital, bless her!

By the time at the Chelsea and Westminster my temperature was 38 degrees of Celsius.  The normal protocol would have been to put me on a drip for antibiotics and fluids, but since the nursing staff had no idea how to use my PICC line, they decided to give me the drugs orally, with no fluids.  I was quite disappointed, and shocked.

I had to stay for one night, which was not too bad.  The good thing about being immunosuppressed is that I get to have a side room, i.e. my own room with my own bathroom!  The view from my room reminded me a little bit of inside of Silja Line cruisers in Finland (please see the pics below).

I was very weak when I got back home.  Since then, I have had upset tummy, which has wiped me out.  I am beginning to feel better.

On Tuesday, Steph changed my PICC line for the 1^st time!  She did a fabulous job; I raise my hat to her.  Like Suzie, she has no nursing/medical experience, but she managed to do it under my supervision to perfection!  I had my bloods taken the following day and the phlebotomist was impressed by the PICC.  I mean, the (trained) nursing staff at the Chelsea and Westminster hospital would not touch my PICC line, but Steph is allowed to flush and change the dressings of it.  Peculiar.  Must be some insurance thing..?

The view from my room in Chelsea and Westminster hospital.

Inside of a Silja Line cruiser. See what I mean? OK, I admit, I'd rather be in a cruiser than in a hospital... I so need a holiday!

Again, I woke up feeling rough this morning, tired, run down, and weak.  I had booked myself into a gardening group at Maggie’s, and as I woke late, I was running very late.  Eventually, I made it to Maggie’s, and as always, started feeling better once I was there.  The gardening class was interesting, and therapeutic.  I know nothing about gardening, so everything Rosemary was teaching us was useful to me!  I learned about how to kill vine weevils using a biological ‘killer’, a non-chemical alternative.  We were also shown how to propagate pelargoniums.   We basically took cuttings out of the ‘mother’ plant, and replanted them with the idea we will make more of these peppermint-scented plants!  I have a pot with four potential pelargoniums at home; hopefully at least one of them will make it into a big plant.

Afterwards, I had to travel to the hospital to pick up more anti-sickness medication that the medical team forgot prescribe to me on Monday.  By the time I got home, it was 5pm, and I was exhausted.  I am so sick of feeling this weak!  I have a moderately active day, and I end up feeling ill with a sore throat.  I do hope that I will not get horribly ill, and end up in a hospital.  I want to go out this Friday for Ali’s birthday drinks and for a little boogie.  It has been too long since I last danced!  I love dancing…

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