Piia Pauliina
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    December 30th, 2009

    I have had a busy Christmas with our guests, Jan and Matt.  Jan is Suzie’s dad, and Matt is her older brother, and they arrived from Perth Australia on the 20th December.  On their first day in London, we took them to the Cat & Mutton for a Sunday roast followed by buying some Christmas decorations and a lovely big Christmas tree, which Matt and Jan carried home whilst trying not to fall on to the icy roads.  It must have been such a difference from Perth’s 30-40 degrees of Celsius!

    I had a lovely Finnish Christmas meal at Jukka and Daniel’s on Christmas Eve.  They had decorated the house so cosy, and Christmassy.  And, the food!  Wow, the ham was delicious.  We also had Finnish Christmas ‘laatikko’, potato, swede, and carrot, and Hala who is also from Australia had made some very authentic rosolli.  I brought some Karelian pies that my mum made when she was visiting me, and of course some egg butter to go with the pies.  They were a HIT.  Everyone LOVED them, and thought they were the best Karelian pies they had ever tasted.

    We had planned an authentic English Christmas Day meal for Jan and Matt, which started with Champagne breakfast with scrambled eggs and smoked salmon.  Then. Suzie and I prepared a full Turkey roast with the trimmings.  Although, Suzie had a special Veggie roast from Waitrose.  For the desert we had apple pie with vanilla ice cream, a big hit with the Kemners, our guests, and Suzie!  Oh and the wine.  Matt and Jan had brought some ‘bottled sunshine’ from this beautiful vineyard in Perth where Suzie’s younger brother, Pat works.

    Then on Boxing Day we all went to the cinema to watch the ‘Sherlock Holmes’ film.  A treat from Jan!  I thoroughly enjoyed the experience.  We even had some popcorn!

    Thank you Jukka & Daniel, Jan, Matt, and Suzie for making such a lovely Christmas.  And, thank you for all the food, wine, and the Christmas tree!  The Christmas would not have been the same without you.

    On Sunday it was Suzie 30th birthday, so we all went to the Cat & Mutton for some food and a lot of drinks!  I drank beyond usual my limit, which is practically no alcohol…  Very naughty of me.  But, it was Suzie’s 30th!

    Monday was all about recovery, eating well and making raw juice, as I was scheduled to go the hospital on Tuesday…

    I just got back from there.  I had the 3rd lot of chemo of this 1st cycle of GEM-P-R.  They started very late at 6pm, even thought I was asked to be in the hospital at 10am?!  It was a long day and night.  Luckily I had Suzie, Matt, Jan, and Anna from Finland to keep me company.  Bless them.  Also, I had a very entertaining nurse who kept saying ‘cor blimey’ several times.

    They started with the Retuximab as I had finally got funding for it from the PCT (Primary Care Trust).  We looked up on the internet and one article said that the Retuximab costs approximately £4900 per treatment cycle.  If that is the case, I have had £34,300 worth of Retuximab so far…!!  I better beat this cancer, otherwise what a waste of money!

    After the Retuximab, I had the Cisplatin followed by diuretics and 8 hours of IV fluids to help to clear the dead cancer cell of my body.  Needles to say, I had to drag myself to the toilet a LOT during the night.  Very exhausting experience.  But, worth it.  I feel like the cancer is gone.  Well, I will know for sure next week.  I have a CT scan on the 4th.

    Matt and Jan came to pick me up from the hospital.  So sweet of them.  They have been such amazing guests, so lovely, practically spoiling me rotten, and looking after me so well.  I will miss them when they go back this Sunday.

    Our Xmas tree!

    Our Xmas tree!

    it snowed day after Jan and Matt arrived from Oz! This is a view from my room.

    it snowed day after Jan and Matt arrived from Oz! This is a view from my room.

    Hala and I wearing Finnish Xmas hats (tonttulakki) on Christmas eve.

    Hala and I wearing Finnish Xmas hats (tonttulakki) on Christmas eve.

    The Birthday Girl and I. She looks so in her twenties, and so fabulous!

    The Birthday Girl and I. She looks so in her twenties, and so fabulous! And, you can see little bit of the Tiffany & Co heart necklace I got for her.

    Suzie, Jan and I after the 'birthday meal'.

    Suzie, Jan and I after the 'birthday meal'.

    The lovely Matt!

    The lovely Matt!

    I was attached to this for 21 hours, which how long the whole treatment lasted! Oh the joy.

    This is me at the end of the chemo. I was attached to this machine for 21 hours, which how long the whole treatment lasted! Oh the joy.

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    December 18th, 2009

    Sorry for the late blog.  I have had a busy week.  I went to Maggie’s on Wednesday to do some natural Christmas decorations.  I made this lovely decoration for our Christmas table, it will be our centre piece! It was so much fun.  And so Christmassy…  they had a real fire, mince pies, hot tea, and it started to snow outside!

    Then on Thursday I had the second lot of the Gemcitabine.  This time around I did not need the IV fluids, and as the Primary Care Trust had not come back on the Retuximab, yet, I did not have that either.  So, the actual chemo took about an hour.  I was pleased as I have never ever seen the Medical Day Unit as busy as it was.  I had to sit in this separate room as the place was too packed with people having chemo.  Christmas rush!  Jukka came to keep me company, and took me for a really yummy lunch.

    The kidneys were fine in the end, and they have not hurt as much anymore.  I believe, I had the pain because after the first lot of chemo, the kidneys were working very hard to get rid of the dead cancer cells. Within a week my chest is flat!  Not kidding.  And the swollen node above my left clavicle is shrinking day by day.  The registrar on Thursday before the chemo thought I may only need two cycles of this GEM-P-R before the possible stem cell transplant.  They were really pleased with the progression.  I will have a CT scan after the full cycle of this chemo on the week commencing 4th January to show exactly what is going on.

    I am still not sleeping well.  I am in the process of weaning off from steroids.  Five more days.

    It has been really cold, to a point of snowing, and oh boy, I FEEL the cold, more than ever!  I am dreaming of a warm sheepskin coat…

    My lovely natural Xmas decoration!

    My lovely natural Xmas decoration!

    The lovely Rosemary who runs the 'gardening group' at Maggie's, and who was teaching us how to make the decoration.

    The lovely Rosemary who runs the 'gardening group' at Maggie's, and who was teaching us how to make the decoration.

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    December 14th, 2009

    It is 5.30am, and I am unable to sleep with the steroids, again.  I am getting about 3 hours per night.  Crazy.  It is awful to feel tired, but not sleepy.  I am trying to watch the X Factor final on the ITV Player as I missed it last night.  I was helping out my friend Tom who promotes fab gigs in London, so I was at the Peaches gig at the Camden Koko, a music venue doing the guest list and ticket collection last night.

    I am not liking these stronger steroids as much as the ‘old’ ones.  These make my face a bit swollen with puffy eyes, more on the left side, and I feel generally bloated.  But, hey if they are helping to cure this cancer and I get to live, I suppose it does not matter!

    The other new symptom I have noticed is pain in my left lower back around my kidneys, which seems to be a lot worse at night.  I actually, woke up because the stabbing pains.  Also, my urine is a bit pinky… there may be some blood in it, or I have been overdoing the beetroot in my juices!  I might give Lucy a call later and see what she thinks.

    But, the good news is my chest is less swollen.  The chemo is working its magic, and the cancer is shrinking!!  Yay.

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    December 12th, 2009

    Monday was my birthday, and it did not start well.  Stephanie had had a call from her mother saying her dad was a lot worse, he had been throwing up blood, and he was not looking good.  Steph was getting ready to go to Newcastle to be with him and her family.  Then at the hospital I was told I was not going to have chemo in the end.  This was sort of good, as who wants to have chemo on their birthday!  However, it was still a slight disappointment since I had been waiting for it, worrying about it.  The main reason for this was, they wanted to discuss my ‘case’ in their weekly meeting which is on Thursdays.  This is when the top experts in Europe, maybe in the world gather together to discuss the cancer cases!  However, they said if the cancer gets bigger or I will develop other symptoms such as breathlessness I should contact the hospital.

    At this point I was not feeling the birthday vibe.  Suzie and I went for a nice chamomile tea to calm the nerves down while I was waiting for my massage that I had booked in the hospital.  Suzie said she was going to take me for a lovely lunch and then shopping after the massage.  She said we were going to get a pair of shoes each, her treat!  I have not been treated like that for AGES, so I was beginning to feel more excited about the birthday.

    Even the massage did not seem to relax me, almost the opposite.  The pain in my chest was aggravated by lying on my back during the massage.  Finally, after a small glass of extremely lovely Chilean Shiraz at this amazing gastro pub near Sloane Square where we went for lunch I started to feel relax and happy.  That was definitely the turning point, after which I had a wonderful birthday!  We managed to find a pair of gorgeous shoes each, which we wore with pretty dresses to our local pub Cat & Mutton for dinner.  My lovely friend Anna happened to be in London, so she, Shawn and Jukka joined us.  The food, the company was lovely, and I felt so uplifted, happy, and ‘normal’.  Suzie truly made my birthday.  I am always grateful for her.  She is an angel.

    Gradually, during the week the cancer was growing slowly, and I started to experience more pain in my chest which also caused some breathlessness, especially at night.  So, on Wednesday morning I called the hospital, and they said I should come in the next day for the first round of the new GEM-P chemo.  I am going to have GEM-P-R as the main treatment, which means I will also have the Retuximab that I had before on top of the Gemcitabine and Cisplatine Chemotherapy.  They are still talking about the stem cell transplant.  The idea is to get rid of the cancer with this more intensive chemo, and then immediately after that blast with some more aggressive chemo with the stem cell transplant, with maybe some radiotherapy to ensure it will NEVER come back.  I will have a CT scan after this cycle, after which I may have a meeting with the stem cell specialist.

    I had the first Gemcitabine on Thursday.  It was quick, and I hardly noticed it happening.  I am on these different, stronger steroids as well which are giving the usual high, but also causing some bloating in my face and tummy.  Not nice, but I don’t care as long as it is getting rid of the cancer.  The next load of Gemcitabine in next Thursday.  I am suppose to have the third lot of chemo of this cycle the following Thursday, but that is Christmas eve, so it has been moved to the 29th December.  That is when I have to stay the night in the hospital.

    There has been moments when I have felt scared, and fearing of dying, but I am feeling more optimistic about beating this now.

    Suzie at the cafe where we had the relaxing chamomile tea.

    Suzie at the cafe where we had the relaxing chamomile tea.

    Even though the tea was lovely and the place relaxing, I still felt tensed.

    Even though the tea was lovely and the place relaxing, I still felt tensed.

    Suzie at the lovely gastro pub, the Thomas Cubitt that Steph had recommended for us.  It was a good choice!  Thanks Steph.

    Suzie at the lovely gastro pub, the Thomas Cubitt that Steph had recommended for us. It was a good choice! Thanks Steph.

    Looking much more relaxed and happy at the Cat & Mutton, our local with Suzie and Anna!

    Looking much more relaxed and happy at the Cat & Mutton, our local with Suzie and Anna!

    Jukka pointing out my swollen chest.

    Jukka pointing out my swollen chest.

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    December 6th, 2009

    The cancer has grown a little, my glands in my neck are up as well now, and I am experiencing more pain, so I am back on the Tramadol.  I am so glad the chemo starts tomorrow, and I can start beating this cancer, again!  Even though I am feeling a little scared that the cancer came back so quickly, and aggressively, I am optimistic about the treatment ahead.

    We had the party last night.  Obviously not celebrating the ‘end of the treatment’, but celebrating our Dream House, Steph’s birthday, and of course my birthday, which is tomorrow.  It was a good party!  Have a look at some pics below.  I am not looking too bad for someone with cancer relapse….!

    Suzie has taken a day off tomorrow to spend the day with me.  She will be coming to chemo, which is lovely.  We will get the chemo out of the way, and then have a lovely day!  We have already booked a table at our favourite local pub, Cat and Mutton for dinner for the evening.  It should be a good birthday regardless of the chemo.

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    Suzie and I, and our annual birthday pic!

    Suzie and I, and our annual birthday pic!

    Dream House Party girls.

    Dream House Party girls.

    Sofia and Minna.  Sofia is the one who comes and does Reiki on me.  She is really good!

    Sofia and Minna. Sofia is the one who comes and does Reiki on me. She is amazing!

    All glamorous, minus the PICC.

    All glamorous, minus the PICC.

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    December 4th, 2009

    It is about one in the morning, and I am experiencing insomnia, thanks to the steroids, again.  Yesterday was a tough day.  I went to the Royal Marsden to see my medical team regards to my swollen chest.  I had my bloods checked, and as I anticipated, a chest X-ray before the consultation.  The doctor agreed immediately after examining my chest that I needed an emergency CT-scan to establish if the cancer was growing again.  I asked her what did she think, and she said it was very likely it was flaring up, and that I would need more treatment as soon as possible.  At that point, I burst into tears, for the first of many times yesterday.

    I went for the CT-scan, which felt more significant to me than ever before.  I knew in my heart of hearts that the cancer was back, but this would confirm it, and I needed to know.

    Everything went very smoothly, and I no one kept me waiting for long time at any stage.  I have to say, my team at the Marsden are so efficient, and so lovely.

    Even though the radiologist’s report had not come back, yet, it was obvious from the CT scan as well as from the noticeable swelling in my bony chest that the cancer was back.  The immediate treatment plan was to put me back on steroids until Monday when I will have my first lot of the new, more intensive chemo, called GEM-P.

    GEM-P refers to Gemcitabine and Cisplatine Chemotherapy, ‘an effective salvage regimen in patients with relapsed and refractory lymphoma’.  Unlike the R-CHOP, which followed the 21-day cycle guide, GEM-P will be done in 28-day cycles.  The drugs also are not going to be given to me in ‘one go’ during one day, but in three different slots a week apart.

    I will have my first lot of Gemcitabine on my birthday (!) this Monday, and then the second amount of the same drug the following Monday.  The infusion of these drugs will not take very long, about half an hour.  Then on the third Monday of the cycle, I will be given Gemcitabine and Cisplatin together.  Apparently, the Cisplatin can be very hard on the kidneys, so I will need IV fluids and close observation during the infusion, which means, I will have to stay one night at the Royal Marsden.  The fourth week will be my week off.  And then the cycle starts again!  They were talking about a possible four cycles, however they are planning to keep a close eye on the developments, i.e. the cancer by sending me to frequent CT-scans.

    It is a little bit harder regime than before, but so be it.  I want to kill the bugger!  It amazes me how quickly it came back, less than two days after I was suppose to have my seventh chemo…  vicious cancer.  It also worries me how will they, I, ever get rid of it?  Apparently, it is not uncommon the lymphoma to come back.  Often, if it does, it comes back after a month or two post full remission.  I am almost happy that this happened before I got completely well, as I think then it would have been even more upsetting.

    There was also some talk about a stem transplant later on.  A stem cell transplant is used to increase the chance of a cure or remission, and it usually involves intense chemotherapy followed by an infusion of stem cells, my own or from a doner (usually sister or brother).

    The idea behind the stem cell transplant is that you can have higher and more intensive than conventional dose chemotherapy (and sometimes radiotherapy) to kill cancerous cells. This chemotherapy also kills the stem cells in the bone marrow that would normally make blood cells. Therefore, following the chemotherapy, you are given (transplanted) stem cells which can then make normal blood cells again.

    Anyway, that is not the plan, yet.  It all depends how this new chemo goes.

    Enough of this medical jargon and info!  I am going to go and try to get some sleep, if that is at all possible with these steroids.

    P.S.  The PET scan has been cancelled.

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    December 2nd, 2009

    It has been a while since my last up date, sorry.  My mum and my stepdad, Jukka came to London to see me last week for a long weekend, so I was busy spending time with them. My mum made some delicious karjalanpiirakka, Karelian pies that originate from the northeastern part of Finland.  And, Jukka did pretty much all of our DIY jobs in the house that we had not got around to do. We had a lovely time. Also, it was Stephanie’s (my lovely housemate) birthday last Thursday, so we went out to celebrate that too on the weekend.

    I have generally been feeling good.  I still get tired easily, and cannot do too much in one go.  I think, to an extent, I have been fooling myself a little, thinking the cancer is cured, the chemo is over, and I can go straight back to normal.  Sadly, that is not the case.

    Suzie and I went out dancing on Friday night.  It was so much fun, just like the old times.  I was so happy, thinking that this time around, I will not end up in the hospital after dancing!  Then, I had another quite late night on Sunday after Stephanie’s birthday lunch.  By Monday I felt awful, so exhausted that I had to go to bed at 7pm…  Tuesday was not much better, and in the evening I noticed that my chest is raised again, on the left side by the sternum.  Just like it was at the beginning when I was diagnosed with this cancer.

    I have no idea why the chest is raised.  It obviously worries me, and I have contacted the hospital, and I am going to see them tomorrow.  It is probably nothing, but the swelling is not normal.  Also, the chest feels tight.  Something is going on there.

    Steph & I on Sunday after the birthday lunch.

    Steph & I on Sunday after the birthday lunch.