Piia Pauliina
  • scissors
    February 19th, 2010

    Good news, I do not have fever and my bike problem was solved on Tuesday when my lovely friend Mark said he would pick it up for me!  I could not thank him enough.

    On Wednesday, Suzie and I went to see this stem cell transplant specialist at the Royal Marsden Sutton branch.  It took us two and a half hours to get there!  The meeting was quite long, and overwhelming.  He talked us through the stem cell transplant, and the high dose chemo procedures.  I will not go into the details, not just, yet, but let’s say it is all pretty hardcore.

    I got a good vibe of the hospital, which is important since I will be spending at least three weeks there.

    I also had the CT-scan yesterday.  Obviously, I do not know the results, yet.  Maybe, my team can tell me the results at my clinic appointment on Monday.  I hope so.  Fingers crossed the tumour has shrunk.

    My plan now is to keep myself free from any illnesses until Monday, so that I can finally have my chemo!

  • scissors
    February 15th, 2010

    Firstly, I would like to point out that my rant about the Homerton hospital does not apply to Royal Marsden; to be an in-patient in the Royal Marsden is, well has been mostly a positive experience.  The staff there are wonderful!  Even the food is better.  Anyway, I just wanted to clarify that.

    My fever still continues.  I seem to get it in the mornings and evenings.  Still no other symptoms.

    My chemo has been re-scheduled to next Monday, and I have an appointment to have a CT-scan this Thursday.  Also, I am still hoping to be able to go to see the stem cell experts at the Sutton branch of Royal Marsden this Wednesday.

    I managed to go for a lunch at our favourite pub, the Cat & Mutton yesterday.  Suzie’s dad and mum wanted to treat us (Suzie, Steph and I) for a lunch on Valentine’s Day.  It was such a lovely lunch, great company and delicious food.  It really cheered me up, especially after the Homerton experience!

    I took my bike to a bike shop, Two Wheels Good in Stoke Newington last Thursday.  My dynamo lights needed fixing.  As you know, on Thursday I ended up in hospital, and since then I have not been well enough to pick it up.  I called them on Saturday to say I was in the hospital, and they were quite understanding but said I needed to pick it up as soon as possible.  I called them again today to say I was still unwell.  This time, they were not so sympathetic.  They said they will start charging me extra soon for storing my bike.  How mean!  I want to pick up my bike as much as they want to get rid of it, but I cannot because I am ill.  Not very nice people….

    Suzie and I at the Cat & Mutton having Sunday roast on Valentine's Day

    Suzie and I at the Cat & Mutton having Sunday roast on Valentine's Day

    Steph, Suzie and I

    Steph, Suzie and I

  • scissors
    February 13th, 2010

    I am going home, just after one more dose of IV antibiotics.  My temperature is still going up, but is can be managed with paracetamol.  Oh, I so rather be at home!  Happy days.

  • scissors
    February 13th, 2010

    I began to feel to feel unwell on Thursday afternoon.  By six o’clock in the evening my temperature was 38.7 degrees of Celsius.  Naturally, I called the Royal Marsden, as whenever I have fever 38 degrees of Celsius or above, I have to have a blood test to establish if I am neutropenic.  Increased temperature is an indication of an infection, and if you are neutropenic as well, there is a risk of becoming septic, which can be life threatening.  The Royal Marsden was full, so I had to go to the nearest hospital, the ‘lovely’ Homerton.

    Susanna kindly came and picked Suzie and I up, and drove us to the Accident and Emergency Department.  Lucy, my key nurse had already called them and informed them about my situation.  We did not have to wait too long to be seen by the nurse (thanks to Suzie who managed to squeeze me before two people who were there before me).  By then my temperature was 39.2 degrees of Celsius!!  My personal best. I was asked to dress down to a hospital gown, as all the layers I was wearing were making the fever worse; I needed to cool my body down.

    Again, the staff were unhappy (?unable) to use my PICC line, which meant they wanted to insert a cannula for IV antibiotics.  Boy, I HATE cannulas.  I am still here in Homerton, and so far I have had FOUR cannulas (since Thursday evening)!  The latest one was inserted at 6.30am this morning.  What a great way to wake up, being stabbed by long sharp needles.  Yes, the first cannula did not last very long.  I got bruising and swelling along the vein, and when they took it out it was bleeding profusely.  It even stained my night clothes.  My left arm is so bruised!

    They have not found the cause for the high grade fever.  I do not have sore throat, cold, flu, diarrhoea, vomiting, chest infection, ear infection, or urinary track infection.  I do not have any symptoms that would pinpoint the source of this infection.  Even my neutrophils were within normal range.  But, there is an infection.  Where it is, is a mystery.

    They have given me super strong IV antibiotics to kill this mystery infection.  I am still not feeling great, but the fever has not been too bad.  Mind you, I have been talking paracetamol to lower it.  This morning, I am not taking them because I want to establish if I am still getting the fever.  Hopefully not.

    I am going home today, no matter what.  I cannot stand being here any longer.  The food is diabolical, the staff not particularly friendly, the bed is uncomfortable, I have not had a proper wash since Thursday morning, there is a girl opposite me vomiting in regular basis, and another woman shouting “I want to die”, they do not allow you to sleep very much keeping you awake at night, and waking you up ridiculously early, and they like stabbing you with needles!  I have come to a conclusion: being in a hospital is a form of torture.  Well, in Homerton anyway.  On a positive note, I am possibly resting more during the day than I would at home where I can always find something to do.  And the IV antibiotics do not cause me diarrhoea like the oral ones do.  Two nights have been enough though; I AM going home today.

    Because of this infection, they cancelled my CT scan which I was meant to have on Friday, and they have cancelled my chemo on Monday.  It seems to be a norm to move my chemo dates due to my poor health nowadays.  I suppose, my body is not coping as well as before with this new, stronger chemo.

  • scissors
    February 1st, 2010

    I quizzed my hospital team regards to the steroids (Methylprednisolone) that I get for five days starting on the 1st day of this chemo, GEM-P-R.

    When I was getting the R-CHOP, I used to get 100mg of Prednisolone (also steroids) for five days, and did not suffer from major side effects.  However, with this chemo, I get Methylprednisolone as part of the regime, and I have been getting very bloated, swollen face, insomnia and loads of excess fluid all over my body, all which make me feel incredibly uncomfortable.

    Ever since the first GEM-P-R, I have asked the doctors why I need to have the Methylpredniosolone and not the Prednisolone.  No one so far has been able to give me a clear answer, they just simply did not know.  But, today, Michelle one of the ‘key nurses’ said she knew the professor who designed the GEM-P protocol, and she said she would ask him.  Apparently, I would have to take 250mg Prednisolone per day to match the dose of Methylprednisolone.

    No wonder, I have been getting these nasty side effects, as I am getting over twice as many steroids than before.  Also, Methylprednisolone is actually part of this regime, not just there to support it.  So, I suppose, I will just have to endure them.