Piia Pauliina
  • scissors
    November 30th, 2010

    The radiotherapy treatment is over and done with. It all went according to the master plan. However, since it finished I have had an annoying persistent cold. I have been feeling a little feverish in the last couple of days. It does not help that London is freezing. It even snowed today?! I am determined to get well, so I am doing nothing but rest. Which is so boring, but I want to get well for all these lovely events ahead of me. There is my birthday next week, and also next week is when we are off to Minehead for the ATP festival. And, pretty soon after ATP I am flying to Finland.

    I am feeling the post radiotherapy fatigue. I do not think I have given the treatment enough credit, as it felt so easy at the time. What is the most noticeable is the emotional fatigue (?linked to physical fatigue). Apparently, this is pretty normal. The way it manifests in me is that my emotions are not quite how they should be. Things that should make me feel happy, I feel almost numb about them. And certain, small things make me more upset than they should. It is like my emotions are overshooting and undershooting at wrong times. They say this will get better. It probably does not help the matter that I am feeling ill as well, which is making me feel even more tired, and emotionally handicapped.

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    November 21st, 2010

    Apologies for the late blogging. This is mainly due to my busy schedule since the daily radiotherapy started about four weeks ago. I have also been busy with my social life, going to see some live music, and meeting up with friends. On Friday it was my dear friend Hala’s birthday, and her partner Rene had booked two lanes at the Bloomsbury Bowling Lanes. It had been years since I last did bowling. I think it was at school… To my surprise, I was pretty good at it. Actually so good that I won! I even beat the boys. It was so much fun.

    Radiotherapy has been easy. The actual treatment does not take long, maybe 5-10 minutes. It is the trekking from Hackney east London to South Kensington in west London that takes a big chunk of my day, and is quite tiring. I have not had any side-effects to mention. The daily hospital routine, Monday to Friday has made me feel like I have a part-time job. I have not minded the radiotherapy, it is like a walk in the park compared to chemo!

    My blood counts have been good. As a matter of fact, they have not been this good for a long time. My white blood cell count was 5.5 and neutrophils count was 4.52 this week! Platelets are still quite low, but apparently nothing to worry about.

    I had the appointment with Dr Kassab at the Royal London Homeopathic Hospital. She mentioned the referral letter that my GP had sent her. She said that it was the nicest referral letter she had ever received. Apparently my GP had written something like he could not think of a more deserving person to receive this treatment. Dr Kassab was very thorough in her assessment and prescribed me Silica Terra for physical and emotional wellbeing and anxiety; Radium Bromatum for fatigue; and Calendula Cream for eczema. I have not noticed a massive difference in my fatigue levels since I started taking these remedies, but then again I have only been taking them for about two weeks now. I am going to see Dr Kassab again in January.

    Liisa, the Finnish receptionist at the Royal Marsden has been a great support to me since I started going there. It is lovely to see a Finnish friendly face the first thing as I enter into the building. Recently she said that she wanted to help me by giving me some money towards a warm coat for the winter. She knows I feel the cold easily and that I am about to travel to Finland for Christmas. Yesterday I purchased a vintage leather/sheepskin aviator jacket from eBay. I cannot wait to try it out. It should be mega warm, and very much in fashion this season. THANK you so much lovely Liisa!

    I only have two more sessions of radiotherapy left. After that, I have one more clinic appointment before I go to Finland on the 16th December. The dreaded PET scan has been booked for me on 17th January 2011. I guess it means I will be on holidays from Tuesday onwards until the scan.

    My hair has grown. It looks a little bit like Emma Watson’s (Hermione from Harry Potter) new short hair cut.

    I am feeling good physically, which is great. I can really enjoy this time off. My birthday is coming up soon, and we (Suzie, Minna, Lisa and I) have a weekend of fun, music and dancing ahead of us. We are off to All Tomorrow Parties (festival) in Minehead, Somerset on the 10th December. And, then after that I am off to Finland, Funland!!!!

    Emma Watson

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    October 19th, 2010

    I had my usual clinic appointment yesterday. I could not stop feeling anxious and nervous all morning. I had been putting off thinking about the biopsy results and somehow had been convincing myself that it did not matter what the result was as I would be getting radiotherapy regardless. But now that I was about to find out the result, I was worried.

    It was Dr Matutes’ registrar and my nurse Lucy who greeted me in the consultation room. I could see that the biopsy report was on the table, and could not focus on what the registrar was asking. I was thinking, is he mad, why does he want to chitchat when the result of the biopsy was right in front of him! Finally he told me. It was bad news. There it was, written in black and white on the report: ‘diffuse large B-cell lymphoma, consistent with mediastinal large B-cell lymphoma’.

    Honestly, what an unrelenting little bugger this cancer of mine is! Three lots of chemo, stem cell transplant with high dose chemo, and it still likes to grow! OK, it is not big, and it is only in one area, which are all positive things, but still!

    Like I already knew, the plan is not to give chemo at this stage, but to give me a course of radiotherapy instead. And, I would like to point out, mostly to remind my little old self that the aim of the radiation treatment is to fully get rid of this lymphoma. If this treatment cures those ‘faulty’ cells, then I will not need further treatment. Fingers and toes crossed, and positive thoughts to the universe, please.

    My team had organised my consultation with the radiotherapy team at Royal Marsden that same afternoon. I had printed out some questions I wanted to ask them. These are some questions recommended by someone at the Lymphoma Association that one should consider asking when faced with radiation treatment:

    “1) I would make sure that they were giving me a modern, more focused and targeted form such as involved field radiation (IFRT), not mantle radiation. That reduces risk of secondary cancers that can be caused by radiation.

    2) I would show my oncologist the recent German Hodgkin’s Group study that demonstrates that a lower, less harmful radiation dose of 30 Gy, not higher, has just as beneficial results with far less risk. The study results showed that ABVD + 30 Gy of rads is as effective as BEACOPP + 20 Gy for achieving a 94% survival rate.

    3) I would also discuss the recent BBC News article about the type of radiation begin given to most Britons (only 7% get the new type!), express concern and insist on the more modern form even if it meant your oncologist had to lobby to get approval for you to travel to another hospital to be treated.”

    Apparently, the radiation I will receive has a tiny risk of secondary cancer, and the dose is about 30 Gy, although sometimes they use higher if they think it is more appropriate. I will be screened for breast cancer regularly for years post this treatment. The Royal Marsden is the best cancer hospital in the UK, maybe in the whole Europe, I am sure they know what they are doing.

    After my consultation, I was sent to be ‘mapped’ for the radiotherapy. It meant, I had to lie down on a CT-machine, very still, my arms above my head whilst they marked three areas of my chest, right in the middle and just under my arm bits, both sides. After I had been through the machine (donut) a few times, the mapping was over, and the final step was to give me my ‘tattoos’. I had heard and read about this, but did not think I was going to get mine so soon! In reality, it was unexciting. The three dots that I have are so tiny you would not notice them unless I pointed them out to you. The tattoos are there to help to pinpoint where exactly the radiation should be directed. And the whole idea of this mapping is to give the team all the info they need in order to plan the treatment as accurately as possible. This can take some time, so my first actual radiotherapy session is next week Wednesday.

    I was booked for all the sessions in one go. I will go every weekday, Monday to Friday at about the same time for 3-4 weeks. They also give you your own treatment machine, and a number for the team looking after that machine. My machine is called Carlyle. I like that name.

    I went to see my GP to kindly ask him to refer me to the Royal London Hospital for Integrated Medicine (formally known as the Royal London Homeopathic Hospital) last week. This is what they say in their website: “The hospital offers an innovative, patient-cantered service integrating the best of conventional and complementary treatments for a wide range of conditions. All clinics are led by consultants, doctors and other registered healthcare professionals who have received additional training in complementary medicine.” Their clinical services include cancer care, so I am hoping I will be accepted as a patient there and will receive complimentary care to support my current treatment at the Royal Marsden. I will keep you posted. My GP said that they are quite reluctant to refer just anybody there, but he had no problem sending my referral.

    As my blood counts were good yesterday, I do not need to see my haematology team for 4 weeks!

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    October 9th, 2010

    It is Saturday morning and I am in my own bed! I was discharged from the Royal Marsden yesterday. What a relief. I do not sleep well in hospitals, and managed to get a decent night of sleep at home last night.

    Two days in Penny Brohn did exactly what I hoped it would do. I managed to get back into mediation, and quiet my mind a little and reconnect with myself again. I was inspired by food, and I am going to eat more vegetables from now on. As I was looked after and cooked for, it felt like a proper break from everything, and allowed me to fully relax for two days. My mind and spirit were uplifted by the lovely walks in the picturesque countryside and by talking to brave and kind people who are going through their cancer journeys. I even saw a 500-year old tree. 500 years! That is a long time. I had to give this old tree a little hug. I love the nature, and really miss open plan places and proper greenery in London. I felt so sad as I arrived in Paddington after my two days in the Penny Brohn haven. I had to go straight into a fully crowded tube. I felt like I could not breath. I do sometimes wonder what an earth am I doing here!?

    As I got home, I had a little parcel waiting for me. My dear friend, and an old (original) Dream Housemate had sent me bunch of pink roses! She had sent them on Wednesday, so the poor roses were very thirsty by the time I got home on Thursday evening. They are still alive though!

    I woke up feeling horribly grumpy yesterday morning. It was a combination of hardly any sleep and not being allowed to drink or eat before this biopsy I was going for. I had to leave my house before 7am. London was covered in thick fog. It conveniently echoed the state of my mind.

    The CT-guided biopsy procedure went something like this. I was be lying on the slide that goes in and out of the ‘donut’ of the CT machine. They, the radiologist and a consultant ‘mapped’ the exact area where the biopsy needle needed to go in by the several CT images. Once they were happy where the area was, they then marked it with some special pen. I was surrounded by several people, although I did not see any of them as I was lying facing the CT device and had my arms uncomfortably above my head. My job was to lie still and to take deep breaths in and hold it as long I was told to (this was not for very long, maybe a couple of seconds). The important thing was for me to take the exact same deep breath each time, as when you breath in the rib cage moves. If my breath was different, the site of the biopsy would have changed. Before they began the actual procedure, the area of the chest was numbed by local anaesthetics. I was awake and alert throughout process. I was not painful, just very uncomfortable.

    Afterwards, I was moved to lie flat on a bed. As I was waiting in the corridor outside the CT scan room for the porters to take me into the ward to recover, I saw the doctor that had been looking after me in Sutton when I was having my stem cell transplant. She asked what I was doing in the hospital. I explained her my PET scan results and the need for the biopsy. Something about the way she looked at me, maybe the sadness in her eyes, made me really upset. I could feel how upset we both were that the transplant had not worked like we had hope to. She was there every step of the way during the transplant and saw exactly what I went through. She knew. The porters came and our conversation was cut short. My doctor went on her way and I was pushed in my bed towards the ward. I could not stop crying all the way into the ward.

    Two hours post the biopsy they took a chest X-ray to check that I had not developed a collapsed lung. Apparently, there is a very small, about 10% risk of puncturing the lung during this process. The lovely (young) doctor that had mostly done the procedure came to see me personally to tell me the outcome of the X-ray. My lungs were fine, and I should be able to go home if I was still well in a couple of hours. All I could think, you have really lovely eyes… He was a very lovely doctor….

    After the X-ray, I was finally allowed to eat! Boy, I was hungry. Minna came to visit me later in the afternoon and brought me drinks and a salad from Prêt a Manger. We chatted, I ate and before I knew, I was told I could go home. I was at home by 8.30pm. I had a lovely drive to home in a taxi through London. The south embankment by Thames was all lit with special lights and looked almost magical.

    I am happy to be at home, in my Dream House. And the weather forecast for this weekend is sunshine and 20 degrees of Celsius. In October?! I am going to see the lovely Steph tonight. She is hosting a little flat warming soiree at her, well not so new pad anymore. London feels good again. And so do I.

    The view I had as went for a walk in the countryside near Penny Brohn on Wednesday afternoon.

    The view from Penny Brohn gardens on Thursday morning.

    The roses that Steph sent me.

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    October 4th, 2010

    My tooth was pulled out on Friday, and I survived! It was not particularly a pleasant experience, however the dentist and the nurse were ever so lovely and caring; I felt I was in the good hands. I saw the tooth after it had been extracted, the roots were in a bad state, and definitely needed to be out! My face is a little bruised now, but that will go away, eventually. I need a false tooth/implant to replace it, as the tooth above it has nothing to bite to, which means it can start ‘moving’. Also, I need a tooth so that I can chew food on that side of the mouth. I must start a ‘new tooth fund’ programme. My birthday/Christmas present wish for this year is a new tooth!

    I went to see my medical team today. My blood counts have improved, white blood cell count was 4.1, within normal range; and I am not so neutropenic anymore! It shows that if I rest a little the body has a better chance of recovering. They will check the blood counts again on Friday when I go to the hospital for my biopsy.

    The consultant, Dr Matutes went through my PET scan results. There is some underlying cancer activity brewing in the area of my original cancer site, even though Lucy said that the area was clear. The new area of activity is in my pleural cavity of my left lung, and they do not know if that is cancer related or not. The biopsy will tell that. I am being referred to see the radiotherapy consultant who will plan my radiotherapy treatment. The planning takes about a week and the actual treatment about three weeks. I will have another PET scan after two months of the radiotherapy treatment.

    If that scan still shows any cancer activity, I may need to go through another stem cell transplant next year, but with stem cells from a donor this time.

    As I was sitting in the consultation room with Dr Matutes and Lucy, it was very clear to me the game is not over, yet. Not by any means. Since the stem cell transplant, I had been hoping the cancer was gone, and I could start planning the rest of my life. But, it is not gone, and I need to change my mindset; I need to live in the present moment, not think that my life will start once the cancer is cured.

    The cancer is under control, which is a very good thing. I do not have to have chemo, which is also great for now. Yes, I will have to have some radiotherapy, but apart from fatigue, it has not got really any nasty side effects that I know of.

    I actually left the hospital feeling a little emotional, but mostly positive. I will beat this; it is just going to take a little longer than I hoped.

    I asked Dr Matutes what was the likelihood of me being able to go to Finland for Christmas. We had a little chat about it, and in the end she said go ahead and book the flights. I am going to Finland for two weeks in December! Finally!!

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    October 1st, 2010

    I am at home waiting for my transport to the Royal Marsden to have my not so good old tooth to be pulled out. I am wearing my new dress from Suzie, which I am calling my ‘good luck in the dentist’ dress! Boy, I do not like going to the dentist. If I was 7 years old now, I would be holding on to my chair and refuse to go in the car, and scream if I had to sit on that dentist chair. Shame I am not 7 years old.

    I had a call from Lucy to let me know that my biopsy is going to happen on Friday next week. This means I can go to the Penny Brohn on Tuesday! Finally some good news. I think a couple of days there will do me world of good, and set me on the right track again. I need to reflect what has been happening lately and digest the news.

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    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.

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    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.

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    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.

  • scissors
    August 26th, 2010

    Sorry for my late blog update.  There has been very little to report.  I have been getting better, however very slowly.  So slowly that you can hardly notice it, unless you compare how I was when I first got out of the hospital.  I am still struck by how fatigued I feel al the time.  It is not due to my blood counts as they have been excellent: my latest haemoglobin was 12; white blood cells 4; platelets 147; and neutrophils 1.6.  As the neutrophils were so good, I can theoretically now eat pate, blue cheese and prawns! I have already had a bit of Gorgonzola and pate.  Yummy!

    My appetite is back to normal, and I enjoy most foods now.  I am just tired a lot, and feel weak.  It is annoying sometimes, as staying in, doing nothing can get utterly boring.

    I managed to go to a festival, the Green Man in Wales last weekend.  I decided it was too soon to camp, so Minna, Jukka, Daniel and I stayed in a gorgeous cottage, which was in the grounds of this beautiful, old mansion house.  It rained quite a bit, and the festival site was a bit muddy, which made it extra hard to trek in the mud in wellies for three days. My muscles are still recovering from that.  But, I managed the whole weekend, which gives me hope.  I have another festival planned for mid September, and the plan is to camp then.  I should be fine.

    I also want to go to Finland, but I have not managed to find a time slot for it.  I still need to go to blood tests regularly, and I am waiting to hear about my PET scan and bone marrow biopsy appointments, which should take place end of September.  Once all that is done, I can go!

    It rained a bit in Green Man. Here are Minna and I in our waterproof gear.

    This is the cottage where we stayed in Wales!

    Me standing in the grounds of the mansion house which is behind me.

    The front of the mansion house.

    Minna and I outside the mansion house, waiting for a taxi to take us to the festival site.

    The Green Man festival.

    Me in the festival. You can see the Welsh mountains in the background.

    My festival friends. From the left: Minna, Suzie, Ali, Shawn, Pat and Sam!

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