Piia Pauliina
  • scissors
    April 30th, 2010

    So after the feverish night I had on Monday/Tuesday night things got a lot worse.  I was fine in the morning but after the lunch I began to feel ill again, and had to lie down.  Gradually, my breathing became more and more difficult, mostly on the right side of my lungs.  As I was lying there, wheezing and breathing rapidly, I started also to feel feverish.  My only thought was “I don’t want to go to Homerton hospital!”

    Sadly, in the end, I had no other choice than to call The Royal Marsden and tell them what was happening.  They said, I needed to call an ambulance straight away and go to my nearest hospital, which is the HOMERTON!  I tried to persuade the ambulance men to take me somewhere else, but they have their rules; I had to be taken to the nearest hospital.  At least when I got to the A&E, I was seen immediately by the doctors, and they were not so busy as it was Tuesday afternoon, not Friday evening like when I normally end up there.  And there was a really cute doctor on duty!  A bonus.

    So it is Friday evening and I am still here, at the Homerton hospital.  By the time I was in the A&E my temperature was over 38.5 degrees of Celsius even with paracetamol.  I had developed a chest infection with pleural effusion on the right side of my lungs.  However, that was NOT the big problem.  The biggest issue was my kidneys, and poor renal function, which was getting worse by day!  I was kind of shocked as I never expected there to be anything wrong with my renal function.  In my view I was going to the toilet like normal, I had no blood in my urine or difficulty in passing urine.  They have been given me intravenous fluids by gallons, which makes me run to the toilet hourly and pass a LOT of fluid.  I think my kidneys are trying to sort them selves out by getting rid of the excess creatine and urea, particles in the urine that should not be so high as they are in my case.

    I am worried about the next chemo as I don’t want to miss it.  I have spoken to my key nurse, Lucy, and she said that obviously everything depends on my renal function.  But, she has not cancelled my chemo.  There is some hope!

    What a shit week!  To make it worse, I had planned a lot of fun for this week , seeing friends and some good music.  Instead I am here, in this crazy ward, attached to IV fluids, keeping a track of records of how much fluid I take in (i.e drink) and how much I pass out.  The fascinating life of urine!  Oh the joy.

  • scissors
    April 27th, 2010

    What an awful night I just had!  I was spiking temperature over 38 degrees of Celsius, and had terrible tummy pains.  I woke up my face swollen more than it has been, and my eyes are mega puffed up.  My temperature, and my tummy are fine at the moment, so no need to go to a hospital.  Plus, my white blood cells and neutrophils counts were higher than normal yesterday, so I am not having a neutropenic sepsis.  I am just going to take it easy today.

  • scissors
    April 26th, 2010

    My blood counts were excellent today, so the 3B PMitCEBO with the Rituximab went ahead today.  I now have loads of boosters in the fridge.  I would be amazed if I get neutropenic!  Hopefully, no more delayed treatments because of neutropenia.

    The antihistamine I get pre Retuximab completely knocked me out, and I slept the whole way through chemo today.  Good job Michael came to pick me up as I could hardly walk straight when I woke up.

    So the next one will be the 4th cycle PMitCEBO which could be the last cycle of this chemo.  Although, they did say I might have more of this treatment before the high dose chemo.  It all depends on the PET scan I will have after the 4B PMitCEBO.

    I still have my curly hair!!  I love it, and wish I would not lose it.  Sadly, I will, after/during the high dose chemo at the latest.  Oh well, it will grow back, again.

    Our Steph got keys to her new home she bought last Friday!  She will be moving out on the 8th May, which is when our new Dream House mate will move in.  Our new housemate is called, Lisa, and she is 32 years old, works as a lecturer at the Fashion Retail Academy, is keen on having a home, likes cooking, bit of gardening, watching films, nice dinners, and the best of all does not want a party house!  Both Suzie and I had a good feeling about her, and liked her very much.  Even though I am going to miss living with Steph terribly, I am looking forward to getting to know Lisa better.

    Thanks to the lovely, sunny weather we have been having lately, I have been able to enjoy our garden, which by the way is a sun trap!  Suzie and I bought two matching sun loungers which will become very handy.

    My head feels a bit hazy still, so I am going to go and rest now as I am finding writing a bit difficult…

  • scissors
    April 20th, 2010

    I did not get the 3B PMitCEBO yesterday as my white blood cell and neutrophil counts were mega low, again!  Argh.  Even with the boosters.  We figured out that the counts go down to practically nothing after each A-part of the treatment.  From now on, I will be getting more boosters after the chemo.  This week I will be injecting boosters every day.  It is frustrating though, I HATE delaying my treatment.

  • scissors
    April 13th, 2010

    The 3A PMitCEBO went ahead yesterday as all my blood counts; especially the white blood cells and neutrophils were excellent!

    I have been having mega runny eyes since it has been more spring-like.  I could not figure out what was causing it until few people mentioned it could be due to hay fever.  But, I have never had hay fever before?  Then again, I have never had photosensitive skin, or freckles, or curly hair before.  Anything is possible!  Steph gave me an antihistamine tablet on Saturday before I was going to go on a picnic in Hampstead Heath, and it worked!  My eyes eventually stopped watering.  I got some of my own antihistamines from the hospital yesterday.

    Yes, we had a picnic on Saturday!  The first of the year.  The morning was really warm and sunny but then it turned into part cloud with a cold wind, so we did not last very long and ended up in a pub.  We were all freezing in the end!

    I had the CT-scan on Friday.  I did not expect to get any results until next week Monday, but Lucy went off and chased the results!  She is so efficient, an amazing nurse.  So, here are the results (they have compared the results to the previous scan): there has been no change in the lymph nodes above the my left collar bone which measures 2.5 x 1.5cm; and there has been a REDUCTION in the size of the mediastinal soft tissue disease, it has reduced from 5.7 x 3.0cm to 5.7 x 1.8cm.  The mediastinum is the part of the body deep inside the chest, between the lungs and behind the breast bone.  This area contains the thymus gland and many lymph nodes.  And, all my vital organs are still fine!  I know it is a small reduction, but a reduction all the same, and there has been no new growths.  I am pleased.  I am only half way through this chemo.  Lucy also said that some of that mass can be scar tissue, not active cancer, and that they are planning for me to have a PET scan after the 4th cycle.

    I am feeling pretty good today!  This chemo seems to suit me, as much as any chemo could suit anyone.  And, I am finally only on 50mg of Prednisolone every OTHER day from now on.  Finally weaning, although slowly, off them!!

    Hampstead Heath by the Kenwood House.

    Hampstead Heath by the Kenwood House.

    Picnic food! Yummy!

    Picnic food! Yummy!


    Daniel is getting cold and wrapping himself around the picnic blanket.

    Daniel is getting cold and wrapping himself around the picnic blanket.

    Jukka and Collette warming up under the blanket!

    Jukka and Colette warming up under the blanket!

    Jukka test riding my Dutchie bike.  I believe he has ordered himself his very own Dutchie yesterday!

    Jukka test riding my Dutchie bike. I believe he ordered himself his very own Dutchie yesterday!

  • scissors
    April 6th, 2010

    My bloods were fabulous after the holiday, and the 2B PMitCEBO with the Rituximab went ahead today.  I was pleased to report back to my medical team that I did not get ill at all during or after the holidays.  Maybe they will let me travel again!

    I am feeling pretty tired now though, and will try and take it easy tomorrow.  Although, there is already loads of things I need to do: go to Tesco’s to get food; advertise Steph’s room in Gumtree (Steph is buying her very own flat, so Suzie and I need to find a new Dream House mate); apply for the ‘discretionary housing benefit’ for the third time in less than one year as they have stopped it, again (!); rebook my 5-day retreat at the Penny Brohn Cancer Care Centre, as I will not be able to go there in the end due to chemo; and yes REST!

    I am feeling pretty happy though, thanks to the holiday, the lovely spring weather we have had today, the fact that my neutrophils were great today, and I finally had the 2B chemo.  Two cycles down, and a CT scan scheduled for Friday.  Fingers crossed I will get some good news about this scan.

  • scissors
    April 4th, 2010

    I did not have the 2B chemo last Monday as planned.  My neutrophils were too low, again!  Luckily not so low that I could not go on my Lanzarote holiday.  It is frustrating that these neutrophils keep going down regardless of the boosters, as I hate delaying my treatment.  Lucy, my lovely ‘key nurse’ reassured me it is normal for them to go down when one has had as much chemo as I have had, and they are not concerned me missing chemo.

    So last Tuesday I flew to Lanzarote to spend about six days with my mum and my step dad, Jukka.  I felt like I was going on a holiday with a child, except in my case the child is my cancer.  I had to plan and pack so much extra stuff for the cancer.

    It was important that I did not leave any drugs behind.  I was advised to pack all the drugs as hand luggage in case my suitcase went missing.  To my surprise, I had no problem getting my boosters through the security, even though I was carrying injection syringe needles with fluid inside them.  Tip: bring a letter from the hospital explaining about the drug in case you get into trouble.

    The flight went well.  I had prebooked a seat by the isle so that I could easily stretch my legs and have a little walk every now and again to reduce the risk of DVT.  Oh, and I was wearing flight socks as well.  I found these black knee high flight sock from Boots, which look just like normal knee high socks.  Highly recommended.

    It was almost surreal to arrive into ‘summer’ after such a harsh, cold winter.  As soon as I had got off the plane, I got rid of the woolly tights and shoes and wore my flip-flops!  I have enjoyed this holiday so much.  The sunshine and the warmth have been so therapeutic.  I have had to be mega careful about the sun though.  I have noticed that my skin is definitely more photosensitive, and seems to burn far easier than ever before.  I used to wear SPF 15 and be fine with it, but now I burn even with SPF 30, and really have to use SPF 50 at all times.  Also, I seem to have got brown spots and freckles, which is also a new thing.

    I have not done much on this holiday.  Every day I have gone for a long walk by the seaside, and the afternoons I have spent reading.  Perfect.  It is a quiet resort.  There are mostly families and old people.  Suits me fine.  And, I have only worn my wig twice in the evenings when we have gone out for dinner!  I love my wig, and I will continue to wear it once I leave this place, but it has been so liberating walking around without it.  Oh, I should mention that I have hair.  My hair started to grow during the second chemo, as those drugs do not cause hair loss.  It is thicker and fuller, and curlier than before!  However, I will lose my hair again with this current chemo.  But it has not happened, yet!  I suppose in London, I do not want people to know I am wearing a wig as this would raise questions (and I do not want all people to know I have cancer) if for one minute I had long hair, then short hair, and then long hair again!  Nobody knows me here and I do not care what people think of me here.

    It is Easter Sunday and I am flying back to London this evening.  I do not really want to go.  Actually, what I would really like to do is to get on a plane and fly somewhere other than London.  Maybe Barcelona!  I suppose, I would like to continue this ‘cancer free’ holiday a bit longer.  I have to go back, and continue with the treatment, otherwise how else am I ever going to get rid of it.  I simply have to plan more holidays, as they are definitely the best way to boost my moral, motivation and my spirit!


    Lanzarote!  It was so quiet there.  Even the beaches were pretty much empty.  Lovely.

    Lanzarote! It was so quiet there. Even the beaches were pretty much empty. Lovely.

    I love being by the sea, and the sun!

    I love being by the sea, and the sun!