Piia Pauliina
  • scissors
    September 30th, 2010

    I was so nervous all morning waiting for the phone call to find out about the PET scan results. As the morning went by and I was getting ready to go out for lunch with Suzie near the Tower Bridge by the river I realised whatever the results are, it is never going to be over. Even if the cancer is totally gone, I will still have live with it for the rest of my life, as there are no certainties that it will never come back.

    I got on a bus to London Bridge and as I was crossing the bridge my phone went. It was Lucy asking if it was a good time to talk. I said could she call me back in two minutes, as I was just about to get off the bus. She said that was OK. I got a feeling that it was not going to be all good news…

    Lucy called me back as I was walking along the river on my way to Suzie’s work. The sun was shining and it was very pretty and quiet by the river. I thought, at least I am in a peaceful environment when I receive the news.

    Lucy started to tell me how they had reviewed my scan at the multi-disciplinary meeting this morning, and that the scan showed that where the cancer used to be at the mediastinum area in my chest, it was completely gone. However, the scan showed one small area of some kind of activity in my left upper lobe of my lungs, size about one centimetre. When I heard this, I almost started to hyperventilate. I was happy it was sunny and I was wearing sunglasses, as I did not want people to see me crying.

    Lucy said they do not know if this small active area is lymphoma, it could also be chest infection. Therefore, the plan is for me to have a biopsy next week to confirm exactly what it is. The biopsy is done under local anaesthetic and as the lungs are involved, I may have to stay one night in the hospital, just for observation.

    The other news is I will need to have some radiotherapy. This is going to happen regardless of the biopsy results to either make sure the cancer does not come back or to treat this small area of possible lymphoma. At this stage I will not have chemo even if it is lymphoma; radiotherapy is their choice of treatment for now.

    So there you go. I suppose the news were inconclusive. I need more tests and I simply have to wait a bit longer until I will know for sure if I still have ‘active’ cancer or not.

    I had a lovely lunch with Suzie in the end, and do not feel like crying anymore.

  • scissors
    September 28th, 2010

    So last Friday the 24th after the hideous night of toothache, I called my hospital for advice. They were concerned and the plan in the end was for me to go and see my regular dentist for an X-ray, and for her NOT to touch my mouth. My blood counts were not good, I had very few white blood cells and the platelets were low too, which is not good for healing. In my experience, dentists have a tendency to poke the mouth with that sharp device and cause bleeding in the mouth.

    My dentist had a quick look at the X-ray and verdict was an infection in my tooth where I had had root canal treatment before. At the hospital they gave me some super duper strong antibiotics and booked me to see the Royal Marsden dentist on Tuesday.

    I had another X-ray of my mouth at my hospital before seeing the dentist today. I get so nervous when I have to sit on that dentist chair. I had a HUGE phobia of dentist and dental treatments as a child. I feel there is something utterly wrong and unpleasant about someone poking my mouth with tools, some of which make far too loud sounds for my liking. And, as an adult I have become to dislike dental treatments even more for their ridiculously high prices. I feel disgusted that I am forced to pay a lot of money for such an unpleasant experience. For instance, I think last summer I paid about £500 for this particular tooth that is causing me pain again. And, guess what? What a waste of money that was. This tooth is apparently a ‘time bomb’ and needs to come out as soon as possible, which in my case is this Friday. Before then, I need to inject the ‘boosters’ again to get my body to make more white blood cells and neutrophils, so that I will not get an infection after this tooth extraction. And, I thought my injection days were over…

    So £500 worth of tooth coming out this Friday. I am in mourning. After that I need to find money to replace the missing tooth with a false one… Maybe my family and relatives will donate some money towards a new tooth for my birthday/Christmas present…

    Anyhow, enough about the tooth. I had the PET scan yesterday! I bumped into Dr Matutes (my consultant) and into Lucy (my key nurse) briefly today, and Lucy said to call her on Thursday if I wanted to hear about the results before my clinic appointment on Monday. I said, I would like to. She said, “OK, if you’re sure?” I am sure.

  • scissors
    September 24th, 2010

    It has been nearly a month since my latest blog entry! Where has the time gone?! I have tried to keep myself busy simply to distract me from thinking about the imminent PET scan. Obviously, I am keen to find out what the outcome is, but at same time I am nervous. What if the cancer is still there after all the treatment I have gone through? The thought of having more chemo makes me feel sick.

    I am typing this at about 4am, as I had the worst toothache last night and had to take loads of painkillers, including Tramadol, which sometimes causes me insomnia. At least I do not have the pain at the moment. I am a bit worried what it is though. I have a suspicion it is my root canal again. I am going to call the hospital later this morning and ask advice.

    After the Green Man festival I needed a good few days of rest. One thing I did that week was to finally decide what I wanted to do on my ‘special day’ organised by the Willow Foundation (please see my link), which is a charity that provides special days for seriously ill patients aged 16-40 year olds. I have known about this since the beginning of the year but had not been able to decide what I wanted to do. They often organise trips to London to see a West End show with a hotel and all, but as I already live in London, I thought that was a bit boring for me.

    I had a chat with Lisa my housemate, and we came up with a brilliant idea! Since I love music and festivals, we thought it would be amazing to go to the All Tomorrows Parties (ATP) in Minehead, Somerset. The festival runs from 10th to 12th December, just after my birthday the 7th. To top it all, a band I love, Belle and Sebastian, curates it. I called the charity up, and they said they were happy to organise this for me, and for three of my friends!! My dream come true. I am taking Suzie and Lisa, my Dream Housemates and of course my beloved friend Minna. The Willow Foundation pays for our tickets, accommodation and travel, for all of us! It probably costs them about £1000. I am so looking forward to the weekend.

    On 1st of September Minna and I went to the Finnish sauna at the Finnish Church in Rotherhithe in London. They have a proper sauna there. It was my first time in a sauna since March 2009. We had hired it for just two of us, as I was not comfortable to go in there with strangers, not without my hair. The sauna was LOVELY! I felt so clean and relaxed afterwards. Although, sauna seems to aggravate my eczema in my eyes, just like it did in March 2009.

    Friday that week, Suzie hosted a Britpop Party at our house. On the 5th September she had been in London for 10 years, and Britpop was one of the reasons why she moved in London from Perth, Australia. It was such a funny party. We had decorated the house with Union Jack flags and bunting, we showed Pulp videos on our flat screen TV, and played obviously music from that era.  I took loads of really good pictured from that evening, but sadly lost my camera that night. I was and still am totally gutted about that. I loved that camera.

    The following weekend Suzie and I went to the End of the Road festival organised by my friends Simon and Sofia. Sofia is a really good friend of mine who has been ever so supportive since my diagnosis. Over the last cold winter she came to my home to give me Reiki healing! I nearly did not go to the festival as was feeling exhausted, and was worried camping and the festival in general was going to make me feel even worse. Initially the weather forecast was predicting rain, and I thought I could not face another ‘mudfest’. I was also worried about catching a bug there, as festivals are not the most hygienic places!

    By Thursday the weather forecast looked much more promising, mostly sunny. Suzie and I had a little chat and she convinced me to go in the end. I am so glad I did, I had the best time. It was tiring, and I did not enjoy sleeping in the tent that much as the nights were cold and the people camping near me were talking rubbish and keeping me awake until early hours in the morning. I stupidly forgot my earplugs! But, I was surrounded by lovely people, Suzie; Emma and Jon (who I went to the Homegame festival in Fife earlier this year); Henry (Emma and Jon’s friend from Bristol); and many more that we met during the weekend who made the festival a special one. I listened to some beautiful music, saw comedy, danced a lot, drank some organic cider, ate some delicious whole wheat freshly made pizzas and laughed so much my tummy muscles ached.

    Again, I needed a couple of days to recover after the festival.

    Last week Thursday, 16th September Jukka, Daniel, Jaakko Mattila (an old friend, and an artist from Finland) and I went to eat at this Finnish pop up restaurant called Hel Yes! It has been put up part of the London Design week. The food there is like something you would get at your grandma’s in Finland. It was delicious. I had sea bass tartare for starters; ‘Janssonin kiusaus’ (potatoes and anchovy bake) for main, and Daniel and I shared this gorgeous berry sorbet with cinnamon vodka for dessert. Yummy! I am going to go there again with Suzie and Lisa tonight. I hope they will enjoy this Finnish experience as much I did last week.

    The following evening was the Maggie’s London Night Hike again. I had been asked to go there at the starting point to see the hikers off and just to hang out with the Maggie’s lot and of course with Benedict Cumberbatch who is an actor. He is the new Sherlock Holmes in the new BBC drama/series. He is also currently working on some project with Stephen Spielberg! Oh, I forgot to mention! I met Benedict at Maggie’s in London on the 3rd September.  Maggie’s was hosting a small press conference to promote the hike, and I was asked to go there alongside with another lady that uses the centre and Benedict Cumberbatch. Local and national newspapers interviewed us, and we had a photo shoot with Benedict. So, it was lovely to meet Benedict again.

    Benedict was there at the starting point to cheer the hikers off. I had a little feeling that I was going to get involved as well on the night. I was right. Not only did Benedict interview me for the Maggie’s Night Hike video but also I was interviewed by the BBC World Service, and had pictures taken of me, and Benedict and I. I was also asked to talk to all the hundreds of hikers, on a stage to tell them about my experiences using Maggie’s and doing the hike, and to wish them good luck. I was a little nervous, as I had not thought what I was going to say, but I think I did not make a total fool of myself. I basically said that I did the hike last year whilst I was having chemo, and that if I could do it, they can! I got loads of cheers! It felt great.

    It was quite emotional to be there, as seeing the starting point and people wearing the hike T-shirts brought loads of good memories, Team Piia doing the hike a year ago, and all our friends and families donating generously for Maggie’s Centres. I remember us customising our T-shirts, having a laugh, and bonding during the hike. Not to mention how emotional it was to finally finish the hike after 11 hours of walking in London through the night! I loved it.

    On Monday this week I had my blood counts checked, and to my surprise they were not that good. My white blood cell count was 1.61, the lowest it has been since July! My white blood cell count had been within normal range since 19th July, and last time it was checked, on the 2nd September it was 5.0. It has dropped down quite significantly since then. I am sure my hectic lifestyle, and not eating that well have not helped. It just shows I still need to take it easy and rest.

    Saying that, I have been out twice this week already.

    Suzie and I went to see Fyfe Dangerfield at the Shepherds Bush Empire on Tuesday. Suzie is a big fan and as she had bought the album in vinyl and had bought two tickets to see him play, we got to ‘meet and greet’ him. We actually got to ‘meet and greet’ him when he played in Scala in January this year, so this was our second time! We got on with him well. He lives quite close to us, in Stoke Newington. I asked him, if he knew my friend Adem who is also a musician, he said no, but he would like to. I said I was happy to organise this! This is exciting, as Suzie quite fancies Fyfe…

    I was in Maggie’s again this Wednesday evening. Tamsin who works as a national fundraiser for Maggie’s had invited Charlie Gilkes and his friends for drinks and canapés to see Maggie’s and to hear what it can offer for people who have been affected by cancer in hope of him and his friends to start fund raising for Maggie’s. Charlie is this posh young man who is a friend of Prince William and Prince Harry, and who runs exclusive nightclubs in Chelsea and in Fulham. One of the nightclubs is called the Maggie’s! The name was given to the club to honour the lady Margaret Thatcher, and the theme of the club is the 80s. Charlie is well connected; one of the people he brought with him on Wednesday was James Middleton, Kate Middleton’s brother (FYI, Kate is the girlfriend of Prince William). I was there to tell them about my experience of using the centre, and how much Maggie’s mean to me. They were lovely people, and I was invited to go and visit Maggie’s the nightclub whenever suited me. I am also friends with Charlie on Facebook now!

    So the scan that I have been eagerly waiting for (as well as been dreading), is at 2pm this Monday afternoon, the 27th September. I have a clinic appointment to discuss the scan results on the 4th October. On the 5th October I am going to the Penny Brohn Cancer Care Centre for two nights, two and a bit days. I need a ‘top up’. I have not been eating that well lately, and I have not been meditating for ages. I need get back on track, and I know Penny Brohn can help me to kick-start this.

    This Benedict Cumberbatch and us ladies who use the Maggie's Centre at the press thingy at Maggie's on 3/9/10.

    The End of the Road Festival 10-12 September 2010.

    Me watching a band in a tipi tent at the End of the Road festival.

    Suzie and I relaxing on a sofa we found at the festival. I didn't want to get up!

    Suzie, me and our lovely friend Lisa at the festival.

    Benedict and I on the night of the Maggie's London Night Hike 17/09/10.

    I'm giving a speech on a stage on the night of the Maggie's London Night Hike. Ha, ha!

    Suzie and I queueing to see Fyfe Dangerfield outside Shepherd Bush Empire. You can see Suzie back of the queue wearing a blue dress.

    Suzie, Fyfe Dangerfield, and I in Shepherds Bush Empire.