Piia Pauliina
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    July 30th, 2009

    I had another rough morning, with wheezy chest, and really painful kidneys.  They said at the hospital that my potassium levels are low.  Maybe that is the reason my kidneys are hurting.  I must eat bananas and drink fresh orange juice.  Same thing again, bed and sleep after breakfast and drugs.  I did not get up as late though, and I have managed to do much more than yesterday.  I think, what I can learn from this, is not to book anything first thing in the morning, as I will not be fit to do it, not at least the first few days after the chemo.  It is a bit like having a bad cold, and to extent I need to treat it just as that.

    However, I have been running around again to benefit agencies, and sending various letters to banks, benefit agencies, and other places where I claim money back.  I feel like there is no end to these letters.  It is a tough world for the unemployed cancer patient.  I do not what I would do without Jay from the Maggie Centre, who has been helping me with my finances.  He has been a true gem! 

    Suzie may have swine flu now, so I cannot see her or visit her.  So dull, as today it would have been nice if someone had nursed me a bit.  I am trying to save up some energy, as I want pop into the Field Day festival in Victoria Park around the corner from me this Saturday.  Let’s hope I also have some hair left then!   Maybe all this money stress will make it fall down, who knows!

    Stephanie is planning to get a Team Piia together for the Maggie’s London Night Hike 2009.  It is an overnight adventure through London, ‘with the exclusive access to some of the capital’s most incredible architecture.’   The Maggie Centre has done so much for me already, I would love to get a team together.  And, participate, if possible.

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    July 29th, 2009

    I got to go home last night.  An hour post chemo! 

    The chemo went really well over all.  They had to give me the drugs very slowly, as it was my first time, and because I reacted to the first drug, called Rituximab.

    Rituximab is an antibody designed to target B-calls in non-Hodgkins lymphoma.  It is a clever drug that can trigger the body’s immune system to attack the cancer cells, and can sometimes cause the cells to destroy themselves!  I like the idea of the cancer cells killing themselves…  Anyway, after an hour so of slow IV infusion, I started to wheeze, and cough, so they slowed the infusion and gave me anti-histamines and corticosteroids, after which I was fine again.  The only other side effects I had were sleepiness from the anti-histamines and sweating. 

    They gave the drugs individually, one by one, not all at the same time as I had imagined.  They had a strict protocol that they followed, adjusting it to me, how I was feeling.  The other drugs they gave me intravenously were: Cyclophoshamide; Doxorubicin (used to be known as Hydroxydaunorubicin); and Vincristine (originally known as Oncovin).  The whole collective of the drugs are named R-CHOP after the initials of the original drugs.  Obviously, I also had had my usual drugs, like steroids, paracetamol, anti sickness, tramadol, etc that morning.  I have no idea how my little body can take so many drugs?!

    The whole procedure to infuse all the drugs took 8 and a half hours!  Some of them were infused slowly, and the last two very fast.  My first cannula did not last until the end, they had to insert another one in my other arm for the last two drugs.  They had to be very careful that the drugs were not leaking onto my skin, as this can be very harmful.  My advice would be to inform how you feel all the time, any pain, any new sensation can be vitally important.  But, like I said, I got to leave the hospital one hour after everything, and I did not feel too bad. 

    This morning I woke up feeling rough though.  I had my usual breakfast, porridge with soya milk and banana, followed by the usual drug cocktail.  Afterwards, I had to go to bed to sleep, and I did not get up until after midday.  I am definitely more tired, and generally run down than before the chemo.  I am doing a simple fatigue diary from Cancerbackup that Minna gave me.  Hopefully, it will highlight when I am feeling the lowest, and the brightest, and give me clue when it is good plan activities, and when not.  Today, I can safely say, I need sleep.


    Here we go!  The chemo has just started.

    Here we go! The chemo has just started.


    The Rituximab.

    The Rituximab.


    I went to the toilet, and when I got back, Suzie had got me a little present: a bag from the 'Friends of the Royal Marsden-shop'.  It has been designed by Lulu Guinness, exclusively for the hospital!  Apparently, she lives around the corner from the hospital.

    I went to the toilet, and when I got back, Suzie had got me a little present: a bag from the 'Friends of the Royal Marsden-shop'. It has been designed by Lulu Guinness, exclusively for the hospital! Apparently, she lives around the corner from the hospital.


    Looking rather tired after 8 and half hours of chemo...

    Looking rather tired after 8 and half hours of chemo...

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    July 28th, 2009

    What an awful night.  I HATE sleeping in hospitals.  It seemed to be particularly bad here last night.  The staff kept the full on lights on at least until about 1am, and there was no peace whatsoever.  

    I waited for them to start the IV fluids all evening, unable to go to sleep even though I was feeling totally knackered and headachy. In the hospital, I am not really allowed to take my own drugs, as they need to keep a record of everything I have, to prevent double dosing me.  I asked them if could inject my anti-clot injection.  As this drug was not written in my drug chart, they had to call the on-call doctor to prescribe it to me.  I could not go to sleep until that had been done.  Finally, at about 1am, they had set the IV fluids, I had given myself the injection, and could finally go to sleep. All I could think of was, thank God, they had not started to chemo!  The staff could not have been able to look after me.  Absolutely, no way.

    The worse thing about hospitals for me is the loss of control.  I no longer can go and do the simplest things by myself without asking for permission.  For instance, they took my steroids away from me, this morning, as they want to control when I have them.  I refused to give them my Tramadol. 

    I was not in a good mood this morning, not feeling as positive as I have been.  I found one of the nurses quite rude.  She kept calling me ‘princess’ when I said I would like to have a wash before the chemo starts.  I found it extremely offensive.  I had not been bothering the staff, and I was more than happy to help myself as much as I was allowed.  Wanting to have a wash in the morning does not make me a princess.  Even the hospital expects patients to practise good hygiene.  All I asked her was to disconnect the IV fluids whilst I have the wash.  She was too busy, so I had the wash with it.  Much later, she came and asked if I wanted to be disconnected from the IV fluids and go and have a wash.  When I said, I already had one, she said:  “I knew you were a true princess!”

    So, the chemo starts today.  And if all goes well, I get to go home afterwards, and I do not have to stay here the night!  I am more than determined to go home, so I will NOT have a bad reaction to the drugs!

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    July 27th, 2009

    Today was meant to be my first day of chemo.  I woke up with a headache, after another sleepless night.  This time, I made the most of it, and typed three letters to Lloyds telling them I cannot keep on paying my payments at the moment, organised some paperwork, sent some email, etc.  Afterwards, my head was buzzing from that entire organisation!

    Suzie came to the hospital with me.  First we needed to go to a ‘transitional unit’, which is a place where they assess patients and get them ready for the ward whilst waiting for a bed in the hospital.  The staff in the transitional unit were amazing, so helpful, and polite.  We were offered endless amount of tea and other refreshments, as well as snacks.  Suzie was very impressed, as in Homerton she was not even allowed to have a glass (neither was I some days as they had run out)! 

    Minna turned up after 2pm, and about 3pm we were all escorted to the ward. 

    In the ward, I was told, they were waiting for my chemo drugs.  At 6pm, I thought, surely the pharmacy is closed by now…  I asked the nursing staff, and they said they had my drugs.  Then there was the issue of intravenous (IV) fluids.  Apparently, in my notes is said, I would need IV fluids for 6 hours prior the chemo.  In the end, a doctor on-call came and brought us the bad news; I will not have the chemo today after all.  The main problem being, evening/night staff, well the lack of it.  When they start the chemo, I will need to be closely observed, every half an hour, and frankly they would not be able to do it over night.  Also, if anything went wrong, there was only one doctor on-call.  After hearing that, I was not confident to start the chemo, and happy to wait until the next morning. 

     It was disappointing though, a bit of an anti climax, for all three of us.  Suzie had been with me hours by then, and Minna had taken a half day, and Suzie the whole day off from work to be with me, and then nothing, after a whole day of waiting patiently.   I had had a nice day though hanging out with my two favourite girls, eating heaps, and heaps of food, chocolate, crisps, caramelized ginger…. 

    Suzie went home, and said she will come back in the morning.  Minna and I decided to go out and get some dinner together.  We went to this Italian delicatessen/restaurant, Garluccio’s where Minna treated me for some delicious antipasti, and salad with Gorgonzola cheese!!  Yes, I managed to squeeze a moment with this gorgeous, creamy cheese before chemo.


    Suzie & I taking the tube to the hospital.


    Minna is reading about R-CHOP.


    I am all ready for the chemo!


    My raised chest and glands in my neck.


    The time went by quite nicely eating yummy chocolate!


    The view from my bed.


    In the restaurant. Check out my accessories!


    The main entrance to the hospital.

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    July 26th, 2009

    I have slept so much in the last two nights!  Well, compared to the previous two weeks anyway.  I could hardly get out of bed today.  I slept until about 4pm!  I felt like my body needed it.  Obviously, now I cannot sleep, and it is nearly 2am…

    I have been feeling quite unwell since the egg harvesting, tired and slightly feverish.  Maybe it is the antibiotics that are making me feel like that.  I am a bit annoyed, as it is my last weekend before chemo, and there was a lot I wanted to do, but I have spent most of the Saturday sleeping. 

    I have managed to squeeze in some fun activities this weekend though.  Suzie and I went to the cinema tonight, to watch the latest Harry Potter movie, the Half Blood Prince. 

    And, last night I made an effort, put some (extra) nice clothes on, and Helena, my housemate did my make up.  She made my eyes look amazing!  I met Minna in town, and we went to the Waterstones in Piccadilly to listen to some live reading and to Kenny from King Creosote play his tunes.  It was also Bart’s, my friend’s birthday celebrations, so afterwards we went to the pub.  It was lovely to see my friends from Domino Records, and to meet some new friends.  Everyone thought I looked amazing, and thought I was doing so well.  Clare, my friend was telling me about her grandfather who had the same cancer that I have when he was in his 80s, and he got completely cured!  

    Some people were asking how I am doing ‘emotionally’.  I can talk about my cancer endlessly, but when it comes to my emotions, I do not what to say.  It is mostly because I do not know how I feel about it all.  So much has happened in such a short period of time, that I do not know even where to begin.  Few people have said, that people with cancer are in ‘auto pilot’ during the treatment, and then have the shock afterwards, which is when they end up dealing with the emotional side of things.  We will see how I will do.  I am doing my best to deal with this, both physically and mentally.


    I loved the eye make up Helena did for me on Friday.

    I loved the eye make up Helena did for me on Friday.


    My raised chest due to the cancer.  I took this on Sat.

    My raised chest due to the cancer. I took this on Sat.


    Can you see the raised chest on the left hand side?

    Can you see the raised chest?

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    July 22nd, 2009

    Today was the ‘egg harvesting’ day!  I was up bright and early.  Well, actually I have been up mega early every morning, simply because I cannot sleep on steroids anymore.  Sunday night, for instance, I only had one hour sleep!  I mentioned this at the Royal Marsden, and they gave me some sleeping tablets to try on.  I had one on Monday night, and managed to sleep maybe about 3-4 hours.  The steroids give me such a buzz that even though I have not slept well for ages, I can still function normally during the day.  I used to be such a talented sleeper.  

    At the Barts all went well.  I was worried they were not able to sedate me due to the steroids, but that was no problem in the end.  I have no recollection of the actual operation, and afterwards managed to have a lovely snooze.  The lower abdominal pain was pretty bad when I finally came around, but after a snack, ibuprofen followed by Tramadol, the pain reduced enough for me to travel.

    Suzie came to pick me up, and she has not left my sight all day as instructed by the hospital.  She has been taken such a good care of me, cooking me lovely, healthy food, and she got ‘Becoming Jane’, a film about Jane Austen from the library for us to watch in the afternoon.  Lush. 

    Earlier, I had a call from the Barts telling me the egg harvesting was successful; they managed to get six eggs, five of which were mature!  They are freezing all the six eggs, including the non-mature egg for ten years.  I am very pleased to have done it.

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    July 21st, 2009

    I was going to text Gow today to see if he was free to go wig accessory shopping with me today, but he beat me to it!  I cycled to over his, and we first had a look on eBay how much they were charging for the various items we were planning to purchase, like poly heads, wig tape etc.  Then, off we went to this fabulous hair/wig/cosmetics shop in Dalston.  Everything was so cheap there, and I got pretty much all that I was after.  Gow was brilliant, he knew exactly what to get, and where to find it.  All staff knew him there. 

    Afterwards, Gow treated me for some yummy Chinese dumplings, or ‘parcels of joy’ how Shawn and I like to describe them.  On the way back to Gow’s, we decided it was a good idea to cut my hair a bit shorter before the chemo.  I let Gow simply do what he wanted, and the end result was a cute bob with a short fringe. 

    Gow said to call him day or night if situation gets bad, and my hair starts to fall, he will then shave it for me.  What a gem!  The day before he was styling Florence’s, lead singer from the Florence and the Machine hair for a photo shoot with Rankin, and today me!  And, all free of charge.  He made my day, I felt so pampered.  

    Photo 22

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    July 19th, 2009

    Another weekend nearly over, thank God!  I am starting to dread weekends.  For one, because all the usual doctors and nurses that help me, are not working, and if anything happens over the weekend, I would have to got to the Homerton  A&E, which is not the most pleasant places to be at the weekend.  So, I worry getting ill over the weekend. 

    Helena, my housemate called me on Fri to say she may have ‘swine flu’, and has been prescribed Tamiflu, the antibiotics for this disease.  Since I am susceptible for chest infections, I simply cannot take risks getting flu, so I ended up going to Suzie’s and staying at hers, in exile.  I have to wait until tomorrow to get further advice from the Royal Marsden regards to this swine flu. 

    People around me have to start practicing really good infection control around me by frequently washing their hands.  I will have to give some infection control tips to my housemates before the full chemo starts.  But, this swine flu is worrying, particularly for people with underlying health problems, and for those with immunosuppression problems either because of treatment or disease, such as chemo and cancer.

    Suzie’s housemate, Ali has had drinking parties with his mates in the flat two nights in a row, and boy they were noisy last night.  That and the steroids have effectively prevented me to sleep well over the weekend.  I feel like a wreck this morning. 

    That is the other reason I do not particularly like the weekends at the moment, all the drunken people making noise late at night when I am trying to sleep.  I wish they would leave me alone.  Also, to find their mess and the ‘old booze’ smell in the kitchen in the morning when I am making my porridge, is really off putting.  Roll on September, and my new tranquil and beautiful home!

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    July 16th, 2009

    I went to see a dietician at the Royal Marsden today regards to my weight loss.  She said I am on a very good, healthy diet, and I should only try and eat more oily fish, cheese and generally snack more.  I should aim to have loads of small meals throughout the day.  She was pleased the amount of vegetables, fruit, and soya products I was consuming.  I explained about my lactose and wheat free diet, and she was happy with that.  She explained, that the cancer is using a lot of energy in my body, which is partly why I am losing weight.  The other part is loss of appetite due to the cancer, and possibly stress. 

    The steroids initially boosted up my appetite, but I have been noticing this week, that my appetite is reducing again.  Again, she said that was normal with steroids, they increase the appetite for two weeks or so, and then the appetite tends to go back to way it was before.  She was warning about losing appetite at some points during the chemo, and that there may be some changes in my taste as well, meaning, I may taste salty foods extremely salty, or sugary foods very sweet.  And, I may have some weird cravings.  Only time will show.  If I will struggle to eat and maintain weight, there are some supplements I can have.  However, they can sometimes fill the stomach, meaning I will not feel like eating ‘real’ food at all.  I will have to wait and see.  I do not want to lose anymore weight. 

    I cannot wait to start baking wheat free breads, cakes and muffins at my new home!  

    I went to Tesco’s and bought loads of soya desserts, soya yoghurts, soya cream, soya chocolate drink, and soya milk.  Alpro Soya should sponsor me!  I also got more oatcakes, Ryvita, and cheese to snack.  I wish Tesco would sell Finn crisps!  At least I have something in the cupboard to snack if I get hungry and cannot be asked to cook.

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    July 15th, 2009

    I had a scan at the Barts this morning, and all seems to be going well for the ‘egg harvesting’. I am going to be starting to inject the second hormone, Cetrotide in the evenings, which means I have three different injections to go through per evening now.

    Minna and I went to the Maggie’s, as I wanted Minna to see it properly. She immediately fell in love with the place, the deco, the architecture, the Moomin mugs, and Iittala glasses. It is like a mini Finnish haven! Minna also had a chat with one of the staff, a clinical nurse specialist, Bernie about the possibility running a restorative yoga glass in the centre. She was really keen for Minna to do it.  Minna will be contacting the current yoga teacher, and will have a chat with her about it. I would love to go there for Minna’s yoga glass. It would be perfect!

    I felt really rubbish this evening, run down, feverish, tired, and achy. I am going to have an early night tonight, and hope I do not get ill. That is the last thing I need right now!


    Here is the sunflower Ola got me.

    Here is the sunflower Ola got me.

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