Piia Pauliina
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    June 27th, 2009

    The week of trekking around London and Sutton from one appointment to another took its toll.  By Friday morning, I woke up feeling absolutely horrid, ill, feverish, and very short of breath.  My bedroom is on to top floor of a 3-storey house, and going up and down the stairs to the basement bathroom would make me gasp for air.  I had no appetite, and trying to eat when you cannot breath is not enjoyable.

    In the evening, Suzie came around with basket of delicious food, and she prepared me gorgeous salmon for dinner.  I tried to eat as much as I could, but it was hard.  Suzie was very concerned that the mass in my chest had grown, thus causing the shortness of breath.  By now, my heart rate was palpably high, and I was feeling very hot.  We were debating what to do, and Suzie called the Royal Marsden.  They said, I would have to go to my nearest A&E first, and if there they thought my worsened condition was cancer related, I would be brought into the Marsden.

    My nearest A&E is in Homerton hospital, and having just been there for 10 days, I was not keen to go back there.  Also, it is notorious place to be on a Friday evening.  In the end, we realised we had no other choice than to call an ambulance.

    At the Homerton, after what I believe was a six-hour wait, they found that I had developed a chest infection, and a collapsed left lower lobe.  No wonder, I was finding it hard to breathe!  I was some given antibiotics, told to rest, and drink plenty of fluids.  At least, I did not have to stay in there!

    By the next morning, the antibiotics had already kicked in, and I was feeling better.

    In the afternoon, Minna paid a taxi for Suzie and I to go to her birthday picnic in Regents Park.  It was a hot sunny day, and I thought a bit of fresh air would do me good; instead of resting at home, I could rest in the park for a couple of hours, and spend some time with friends.

    The picnic was going well.  It was lovely and sunny, great to see friends, Sarah had baked more of my favourite muffins, and Minna was entertaining us with her new hula hooping skills.

    Then it started to rain, and the temperature dropped.  First, it was not too bad, and we were not hugely affected by it under a big tree.  But then, from nowhere, the rain turned into a ‘power shower’ with the addition of large hailstones.  We all got soaked within a second.  It was not good.  I was shivering, and my lips were blue.  It was time to leave the park.

    Suzie, Sarah and I went to Minna’s who luckily lives around the corner from the park.  I jumped straight into a hot bath, after which Minna served me some delicious Finnish pea soup (hernekeitto).  I was saved!

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    June 25th, 2009

    We had to leave my house to Sutton for my PET (positron emission tomography) scan ridiculously early this morning, at about 7am. To conduct the scan, a short-lived radioactive tracer was injected into me, and I was left lie down for an hour for it spread across my body.  The actual scanning took about 40 minutes.  This was painful, as the bed I was lying on was very narrow, I had to lie flat my arms above my head, which made my breathing difficult.  I just kept thinking, I want to have this done, so just put up with it. 

    Apparently, I will be radioactive for 24 hours post scan, and should not sit close by for long period of times next to pregnant women and children under five!  Sadly, I did not glow in the dark. 

    After the scan, we set off to the Barts, which is near St Paul’s cathedral and tube station.  My fertility clinic appointment was at 4pm, but I was not seen until 5pm.  By this time we had not had any breaks or lunch, and I was totally exhausted by this week of trekking around to various appointments.  Even Suzie was worn out, and she did not even have an underlying illness!  

    I was given various options instead of egg harvesting, but I had already made up my mind, and explained I wanted to go ahead with the freezing the eggs.  They were happy with this.  I was given hormones to hopefully promote my periods to start in a about a one week’s time.  This is just the first stage of this whole process, which in the end will involve injecting three different hormones subcutaneously (under the skin).  I am not sure how I am going to do the injecting, yet, considering how scared of needles I am.  This could be interesting.

    PET-Scanner

    PET-scanner, not the one I used, but pretty much the same.

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    June 23rd, 2009

    It was a sunny morning, so Suzie and I decided to look at this trip into Sutton as a ‘day trip in to the country!  Sutton is a strange place, not much to it.  I would personally never like to live there.  It is not pretty enough to live that far away from London.

    When they sedated me for the bone marrow biopsy, Suzie was disappointed, I simply fell asleep, and did not start talking some weird nonsense under the drug.  She disappeared when they did the actual biopsy, I do not blame her. 

    I was told, I would not remember the procedure or the pain, but I can tell you, I do.  It was painful!  I just could not physically scream aloud, since I was under the sedation.  But, in retrospect, it is all a hazy memory, and I am no longer affected by any of the experience.

    Later in the room when I was still recovering from the sedation, a grown man had the same procedure done, but without sedation, screaming a lot!  A note to my self, always take the sedation when offered.

    It is a struggle to do all this travelling when you are not feeling well.  I am not really ‘with it’, and having Suzie with me, is a blessing.

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    June 22nd, 2009

    When Suzie and I arrived at the reception in the Royal Marsden, we were first greeted by lovely Liisa, their receptionist who is Finnish!  She reminded me a little bit of my ‘mummi’, my grandmother in Finland, they have the same smile.  How lucky am I, to be greeted by her when I come to the hospital from now on! And, we can chat together in Finnish!

    I met my consultant haematologist, Dr Estella Matutes, and my ‘key nurse’, Lucy Whiteman at the Royal Marsden.  They are both lovely, and Lucy is something of a super nurse!  They went through briefly of all the tests I was going to have, and it looks like it is going to be a busy week!  

    We have also decided to harvest some eggs for me since the chemo may affect my reproductive system.  I have been thinking of freezing eggs anyway, so this was an easy decision to make, and I am happy to do it! 

    Tomorrow, we need to travel to the Sutton branch of Royal Marsden where they are going to do the bone marrow biopsy under sedation.  

    All in all, I am very pleased with the hospital, and I feel like I am in good hands.

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    June 17th, 2009

    Megan, the lovely doctor came in with a colleague today, to bring the news of my biopsy.  I have cancer, non-Hodgkins lymphoma.  I began to cry, partially of course because I have cancer, but also because the agonising wait was over.  At least I finally know what is wrong with me, after 10 days in the hospital.  I immediately asked Megan if she could refer me to the Royal Marsden, she said she would do this ASAP.  I asked to be left alone, as I wanted to call the news to my ‘support’ group.

    Minna, Suzie and Sofia came to see me.  Suzie immediately decided I needed to move in with her, and hopefully also with Steph who is currently looking for somewhere to live in Hackney.  Suzie gave Steph a quick call, and Steph was happy to look for a home with us.

    My head is spinning with all that has happened, and I feel my life is about to change quite drastically.

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    June 15th, 2009

    The Mantoux TB test that the TB nurse did on Fri, was negative when they checked it today.  It is starting to look more and more unlikely that I have TB, which means I may have cancer.  I have asked some friends to research what is the best cancer hospital in London, in case it is cancer.  They all agree, the Royal Marsden is the best one.  So, if it is cancer, I am going to ask to be referred there.  

    I am still waiting for the biopsy results. There is a lovely doctor, Megan Croft who has been wonderfully helpful, and she has been chasing for the results.  I hope when the results come in, it will her delivering the news.

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    June 14th, 2009

    Suzie, Minna and Sarah came to see me, and brought lovely picnic food.  We had decided to have a little birthday picnic for Minna, as she is going to be away in Finland for her actual birthday.  It was a sunny day, and we found a little place in the hospital site, a little garden that was adequate for out little party.  Sarah had baked the most amazing wheat, dairy, and sugar free blueberry muffins!  They went down like a treat.  It was lovely to have a little bit of normality here in the hospital.

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    June 12th, 2009

    It is Friday, and it looks like I am not going anywhere as, yet.  They are still waiting for the biopsy results, and do not want me to go home until they get those results.  Also, there is the issue of TB, if I am infection or not, and of course the nodes compressing my jugular vein.

    Luckily, the TB nurse came to see me, and did some tests.  She was not wearing a mask when she came in the room, so I asked her if I was infectious or not.  Off the record, she said I was not, but as the results were not in yet, she said I could leave the room if I wore a mask, and once outside, I could take the mask off.  At least, I could go outside over the weekend.  That was a relief.  I will get some of the TB test results after the weekend.

    The weekend is going to be long and boring, I am sure.  All the doctors are away, and nothing really happens in the hospital over the weekend.  Shawn brought me the Lord of the Rings box set, the extended version.  That should kill some time!

    I need more fresh clothes.  I did not expect to stay here this long!  Suzie has been ever so kind to get me supplies with her Dutchie and the basket.  What would I do without her?  Even the nursing staff has started to comment on the bike baskets we have.  They said: “Is that a tradition to carry a basket in your country?”  No, just our little thing, we said.  They are so practical though, those baskets!

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    June 11th, 2009

    After my surgery yesterday, the nursing staff rushed me into a side room, for ‘isolation’ from the rest of the patients.  When I asked why, they did not know.  I got very upset, as I felt no one was explaining me what was going on.  All I knew, I was being put into isolation.  Finally, we managed to get a doctor to come and see me.  She was not entirely sure why I was in the side room, but looking at my notes, she said they are querying TB, and assumed I was put in the side room just in case.  I suppose, I should look at the bright side, I have my own un-suite room!  This is as close as NHS gets to BUBA.  

    As, they are worried I may be infectious (even though I keep telling them, I do not have a cough!), anyone entering in the room should wear a face mask.  Suzie, Minna, Shawn and Sofia, my regular guests refused to wear the masks.  They had been around enough time, too late to start wearing the masks.  I do feel like a prisoner in this small, dark room though, isolated and all alone most of the day and night.  I am trying not to worry and trying to be calm.

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    June 10th, 2009

    I had a painful night.  Not only because of the actual pain, but also because it is so noisy in the ward.  I am in a ‘respiratory’ ward where they put all the people with chest problems in, which practically mean, these patients cough a lot!  Especially at night time.  And, whenever I get to fall asleep, the nursing staff comes over to check my ‘OBS’, i.e. temperature, blood pressure, heart rate etc.  Joy. 

    The CT-scan from yesterday showed there are ‘multiple enlarged lymph nodes in the posterior triangle’, that meaning in my lower part of my left neck.  Also, there is ‘a large soft tissue mass in the anterior mediastinum, 10.7 x 7.4 cm, and multiple ill-defined nodules in both lungs’.  There was also some swelling in the lymph nodes in my left axilla (armbit), and in the ‘para aortic region’.  

    The CT-scan demonstrated that the enlarged lymph nodes in my neck are compressing the distal jugular vein, which is the main vein bringing de-oxynated blood from the brain to the heart.  That may explain why felt so hot in my head, and felt the pulsating in my neck on Monday.  They are going to start me on blood thinning injections to prevent clotting.  The liver, spleen, pancreas, adrenal glands and both kidneys were fine though! 

    I am being operated today, as they want one of the lymph nodes of my neck for further investigations.  

    I still do not know if I have TB or cancer.  Obviously, I am voting for TB!  I am also waiting to see the TB nurses who should come around to do some tests on me.  Hopefully, sooner rather than later.  It is ever so boring here.  There is no internet, and it is too noisy to concentrate to read.  It is a lot of waiting around here.

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