Piia Pauliina
  • scissors
    August 27th, 2009

    I am still in the hospital.  Since, I spent the most of the day sleeping, I cannot get to sleep now.  I felt awful all day, so weak!  I hardly could get out of bed, and when I did, I felt terrible, shivery, weak and dizzy.  I popped to the hospital shop to get a drink in the afternoon, and afterwards I was absolutely pooped; I could not take the stairs back up to the 2nd floor; I had to take the lift.  I used to be so fit…. Now, I am like a ninety-year-old woman!  Apparently, this is quite normal after the second cycle of chemo, to feel rubbish on the week two.  I have to say, I do not like it.  It is really upsetting to feel this ill, and not able to do anything.

    I saw my PET scan today, a 3D picture of it.  And boy, the mass in my chest is, sorry was, HUGE!  No wonder I had difficulty breathing, the mass took most of the space in my upper left lung.  Also, at the time, the scan showed I had excessive fluid in my pleural cavity (area outside the lungs), which would have also made breathing somewhat difficult.  I have another PET scan next week.  I hope the mass has shrunk considerably.  I know the cancer has got massively smaller in my neck, as it has visibly shrunk and I can hardly feel the nodes.  So, the chemo must be working, and all this suffering is not for nothing.  I have to remind myself that I am lucky to have non-Hodgkin’s lymphoma, as it is one of the most treatable cancers out there.  Things could be a lot worse.

    Minna came to see me at the hospital today, and she showed her Green Man festival photos.  I have been going to the Green Man every year since it started, except the very first one, and I absolutely love the festival.  Every year my ‘Green Man family’ go there, we camp and spend a lovely weekend together.  As this year I was unable to go, one of my friends, Andy brought this cute bunny that apparently looked like me.  This soft toy bunny became ‘little Piia’.  According to Minna’s photos, little Piia had an excellent time mingling with the stars and some cute boys, hanging with the ‘family, and watching bands back stage!!  My favourite picture has to be the one with Jarvis Cocker!  Absolutely love it.  I can already feel that next year’s Green Man will be something special, and I am already looking forward to it!

    Little Piia with Jarvis in Green Man 2009!

    Little Piia with Jarvis in Green Man 2009!

    Me in the Royal Marsden.  The glands in my neck have shrunk considerably, you can hardly see them anymore!

    Me in the Royal Marsden. The glands in my neck have shrunk considerably, you can hardly see them anymore!

  • scissors
    August 25th, 2009

    Suzie changed my PICC dressing and flushed it successfully last Friday.  I am very impressed, as she has no medical/nursing background, and she had only ever seen the procedure done once.  Nowadays when I have bloods taken out, the phlebotomists use my PICC line.  After they have taken the blood, they need to flush the line.  On Monday when I mentioned that Suzie had flushed the line, and changed the dressing, the phlebotomist nurse asked, or stated rather: “she had been practising a couple of times under the supervision of a nurse?”  I think she was impressed that Suzie had managed to do it, as according to her, even the experienced nurses find the PICC dressing change fiddly.  Well done, Suzie!

  • scissors
    August 25th, 2009

    Apologies for the late blog up-date.  Our BT phone line has been cancelled, yet again, and we do not have internet at home.  Furthermore, I am currently in the Royal Marsden as an in-patient where there is no wireless internet.

    I have been unwell, pretty much for a week now since the second cycle of chemo.  My energy levels have been lower than normal, and I have been suffering from nausea.  Also, eight hours of sleep does not seem to be enough for me; I have needed twelve hours most nights!

    I felt pretty good on Saturday though, which was my day 5 post chemo.  It was a lovely sunny day, and Stephanie had invited me for a day out in Hyde Park.  I was glad to be able to go, as Steph, Nicky and I had a great day!  I managed to do something to my left foot though, and I have been unable to walk on it properly since.  Flip-flops are not the best walking shoes!

    The next day, I felt knackered.  I spent most of the day in London Fields (my nearest park) lying down.  I was absolutely pooped at the end of the day, and was asleep already at 9pm.

    On Monday, I was scheduled to go in to the Royal Marsden to have my bloods checked out.  I felt absolutely awful in the morning, and was lying on my bed unable to get up.  In the end, I forced myself to go out, and started my very painful journey to the hospital.  I felt horrible stabbing pains in my tummy, a bit like a cramp, which came in waves.  By the time my train arrive in South Kensington, I felt sick, shivery, and dizzy.  I thought, I was going to faint at the tube station.  I struggled my way into the hospital, and pretty soon as got in there, I bumped into Lucy, my nurse.  She asked if I was OK, and I burst into tears.  I was so exhausted of pain and feeling ill.

    She led me into the outpatient clinic where I had my OBS and bloods taken.  I saw my team doctors, and as my temperature was up to 37.5 degrees, they decided to admit me in.  They were suspecting I was brewing some sort of an infection, which was making me feel run down.

    I was taken to Ellis ward, the same ward where I had my first chemo.  As I had not planned to stay the night, I did not have any of my stuff with me.  I had planned to spend the Monday evening and Tuesday day with Anna, my lovely friend from Finland.  I called her to tell her that there had been a slight change of plans.  Anna came to the hospital to pick up my keys and then went all the way to mine to get my stuff.  Bless her; she was such a great help to me.

    I was feeling low yesterday, simply quite fed up with the cancer and feeling ill.  I am grateful of being here in the hospital, and receiving the care, as I am hoping I will feel better soon.  I had a fairly rough night.  Those cramps in my tummy came back, and I kept waking up needing to go to the toilet with stabbing pains in my bladder.  Also, I had the usual night sweats, typical to this cancer.  Darya, the lovely nurse who gave my first chemo, was on night duty.  She took a good care of me.  I wish I knew what these tummy cramps were about.

    I saw a dietician today.  She advised me to snack more.  I said it is quite difficult to me as I was never a ‘snacker’ in the first place, and when you feel nauseous, the last thing you want to do is to snack.  Also, I have never really had a ‘sweet tooth’, so it is quite difficult to find things to snack that are not sweet.  I suppose, I could eat nuts.  She prescribed me some energy drinks that I can have between meals.  I am definitely giving these drinks a go, as I do not want to keep on losing weight.  I have been losing about one kilo per week in the last month.  If this keeps going on, there soon will not be much left of me!

    I am hoping to get well soon.  I have my interview with Kevin at Maggie’s this Friday, and I also need to start packing!  I had a bout of feeling feverish and very achy again this afternoon; so I am not fully clear from this infection, yet.  They took some blood cultures this morning, and if there are any abnormalities in the results, they can give more specific antibiotics to beat what ever it is that is causing my illness.  Maybe, just maybe I can go home tomorrow.

    In Hyde Park by the 7/7 memorial

    In Hyde Park by the 7/7 memorial

    Nicky, the Dutchie and I in Hyde Park.

    Nicky, the Dutchie and I in Hyde Park.

    Stephanie and Nicky relaxing by the Diana memorial in Hyde Park.

    Stephanie and Nicky relaxing by the Diana memorial in Hyde Park.

    Me in Hyde Park.

    Me in Hyde Park. If you look carefully, Nicky is cycling in the background.

    Steph and I in Hyde Park.

    Steph and I in Hyde Park.

    The view from my bed in the Royal Marsden.

    The view from my bed in the Royal Marsden.

  • scissors
    August 19th, 2009

    The second day of post chemo, and a bit like last time after the first chemo, I felt rough in the morning, but as the day has progressed, I am starting to feel better.  Overall, I am not feeling as bad as I did after the first chemo.  Perhaps my body is getting used to the drugs.  I am also taking some special supplements, which have been recommended by a kinesiologist, Sofia’s tutor.  He prescribed a ‘cancer programme’ for me, and I take the supplements during the chemo, first five days.  So it could also be those supplements, which are helping.  I am still at Nicky’s lovely, tranquil home.  It really has helped me a lot.  Nicky’s mother sent us some flowers, which arrived today, to cheer us both up!  How kind.  I am going home today, because I have ordered moving boxes. They should be delivered tomorrow at my house, so I need to be there.

    You can see the flowers that Nicky's mother sent us in the background.

    You can see the flowers that Nicky's mother sent us in the background.

  • scissors
    August 18th, 2009

    I am going start my blog with some some comments I have had about my ‘new hair’.

    I saw an old friend, Ben on Saturday and initially he did not recognise me.  Then when he did, he said: “You look different”.  I said: “Good or bad different?”  He said: “Good different”.  He was looking at me intensely, and then said:  “You look blonder!”

    I was waiting for my chemo to start in the reception today, and the nurse came to do my pre chemo assessment.  She said:  “Has your hair started to fall off?” She was shocked when I replied:  “It already has!”  She could not believe I was wearing a wig. And, another nurse was equally shocked when I told her I was wearing a wig, she said: “That’s the best wig I have ever seen, and I have seen many wigs working in a cancer hospital!” How good is that?

    Oh, and when I was sitting there in the Medical Day Unit reception, Sally Phillips (please see the pic) and another lady walked in and sat almost next to me!  Sally Phillips starred for instance in Bridget Jones movies.  She was one of Bridget’s best friends.

    The chemo started really late again, so it was a mega long day.  I first had my clinic appointment with my team after 11am, an hour late than intended.   Afterwards, I went to the Medical Day Unit where I was told my drugs had not been delivered from the pharmacy, yet, and that it would take at least an hour for them to get the drugs.  In reality it took about two hours.  I finally started my chemo at about 3.15pm. The Retuximab did not take as long as last time, as I did not have an adverse reaction to it.  This is because I was given antihistamine and corticosteroids beforehand.  As I started my treatment so late all the other patients had finished their treatments ages ago. I ended up sitting there in the Medical Day Unit all alone.  Therefore, I was ‘transferred’ into a ward to finish the treatment, so that the nurses at the Medical Day Unit could go home.  In the ward I was surrounded by very sick patients, and the waiting for my treatment continued as the nursing staff there were busy dealing with the other patients. I was getting very hungry, after all at this point it was nearly 7.30pm, and all I had had was tiny amount of porridge in the morning and a small salad for lunch.  Finally after what felt like ages, the chemo recommenced.  Ruth and Michael were coming to pick me up, and Ruth came to the ward to keep me company for the last part of the chemo.  At last, I was done at about 9.30pm, and we could start the journey to Nicky’s where I had planned to stay for a couple of days.

    There has to be a better way of making this chemo experience much quicker.  I think one of the problems is waiting for the chemo drugs from the pharmacy.  Next time, I will ask them to get the drugs slightly in advance, maybe whilst I am at the clinic appointment.

    The chemo went well though, no reaction to the Retuximab, no sweating like last time, and no problems with my PICC. Also, I’m not feeling as rough today as I did last time after the chemo.  The only annoying thing I am getting is pins and needles, and numbness in my right hand, which is a fairly typical side effect of the Vincristine.  There are drugs to reduce these side effects if it gets worse.

    I am at Nicky’s lovely flat at the moment.  It is really clean and cosy, and everything, including the toilet is on the same level.  I do not have trek four flights of stairs to pop to the toilet, like I do in my current home!

    Pic of Sally Phillips I found on the internet.

    Pic of Sally Phillips I found on the internet.

  • scissors
    August 16th, 2009

    I am sorry, but I need to rant a little.  I have noticed that some friends just do not invite me out anymore.  By ‘out’ I mean the normal going out, pubs and bars, gigs etc.  I have cancer, yes, but that does not mean my social life has to be over.  There are days when I feel ill and I do not want to go out, however the days when I feel ‘normal’ out number the days when I feel rubbish, so actually I have loads of ‘chances’ to go out.  I am trying to live as normal life as possible; people treating me differently does not help.  I do not drink alcohol at the moment as my liver has enough to deal with as it is, but that does not mean, other people cannot drink.  It does not bother me if they do, and if they did, I would not judge them.  I still want to go out even though I do not drink.  Yes, my neutrophils are low at times, but not all the time.  If the last chemo cycle is anything to go by, my neutrophils were only down for a couple of days at around ‘day 7’, then quickly picked up back to normal at around ‘day 10, 11’ post chemo.  So, I am not neutropenic all the time, and can go out in the public.  I would generally like people to treat me just like they did pre-cancer, please.

  • scissors
    August 14th, 2009

    I had the PICC dressings changed at the Royal Marsden today.  Suzie came with me, as it was her turn to learn from nurse Arlene how to flush the PICC and how to change to change the dressings.  I am pleased that Suzie is happy to be my ‘nurse’ at home, I think she will do better job than a district nurse would do!  My skin is starting to look red where the dressings have been already after a week.  It will only get worse, I think…  Poor skin.

    I got a little present from the Royal Marsden, a plastic PICC cover to keep the arm dry whilst having a shower!  These covers are new and are on trial.  I was given a questionnaire to report back to the hospital to let them know how good, or bad it was.  Surely, they have to be better than the cling film.

     

    Looking all chilled out at the medical day unit at the Royal Marsden waiting for the dressing change.

    Looking all laid-back in the medical day unit at the Royal Marsden whilst waiting for the dressing change.

     

    Suzie took a pic of my PICC for reference.  The blood had been oozing out which needed flushing.

    Suzie took a pic of my PICC as for reference for when it is her turn to do the dressing change. The blood had been oozing out which needed flushing.

  • scissors
    August 12th, 2009

    I spent most of my day at Maggie’s yesterday.  There was a 2-hour ‘Look Good, Feel Better’ makeover session.  Look Good, Feel Better is a charity that runs free skincare and make up workshops for cancer patients ‘to help combat the visible side effects of cancer treatment and, in turn, boost confidence and wellbeing’.  At the beginning of the sessions, each of us were given a goodie bag filled with 17 different beauty products.  There were three volunteer beauty consultants to help us guide through this designed 12-step skin care, make-up regime.  Everyone looked glamorous after the session.  I firmly believe it is important to make the effort to look good every day, as it will make you feel better, and I have noticed I have started to spend more time to get ready than before. My aim is to look fabulous through the chemo!

    Afterwards, I had a chat with Anna who is a Media Manager at Maggie’s in Glasgow.  The Maggie’s in London building has been shortlisted for The Royal Institute of British Architects Stirling Prize 2009.  The winner will be announced in a TV programme televised by Channel 4, and for that the TV producers are making short films of each of the shortlisted buildings.  Bernie from the London Maggie’s asked if I would be happy to be interviewed for this film!  Naturally, I said yes.  Maggie’s has done so much for me, thus I am happy to help back whenever I can.  I will be interviewed by Kevin McCloud, as he is presenting the Sterling Prize programme!  I am a huge fan of Grand Designs, so it will be exciting to meet Kevin.  Minna has already given me orders to get her an autograph from him!  So, Anna and I were discussing about the interview.  Oh, she did not realise that I was wearing a wig until it was mentioned, she thought it was my real hair!  That made me very happy. 

    From Maggie’s I went straight to Suzie’s for dinner, and to have my wig adjusted.  Suzie managed to tighten the wig with her couture sewing skills.  It is a much better fit now, and I feel happier and more confident to wear it.  Suzie did an excellent job, and has basically improved the quality of my life!   Thank you, lovely.

  • scissors
    August 11th, 2009

    Strangely, I just woke up, it is 4.30am, and cannot go back to sleep.  I guess, time to write my blog!  I, well, we, Suzie, Gow and I did it.  My hair is shaved off.  It was so weird seeing all my hair go, and I felt oddly naked, and vulnerable afterwards with no hair.  Both, Gow and Suzie tried to convince me I looked beautiful, and that I had good shaped head.  I felt much better once I had put my wig on. 

    I went out wearing the wig for the first time.  Suzie kept saying it looks so natural and real that she is not even noticing anything new or different in me.  We met an old friend in the street and he did not mention my hair at all, or look at my hair any differently!  We also popped to say hi to Josie who gave me the wig. She thought the wig suited me really well, and could almost not believe it was her old wig.  Again, I was saying to Josie how grateful I was for the wig; I do not know what I would do without it!  The more I wear the wig the more I seem to fall in love with it.  My only worry is, it is too big, and will move or come off.  I will have to figure out how to make it more snug and secure.  Suzie promised to have a proper look today, maybe we could tighten it somehow. 

    I have a ‘Look Good, Feel Good’ makeover session at Maggie’s later today.  I am really looking forward to it.

     

    The pile of my hair

    The pile of my hair

     

    Gow and I, and my lovely wig.

    Gow and I, and my 'new hair'.

     

    Here is a pic of my PICC!  So, I have to live with this for months...

    Here is a pic of my PICC! I have to live with this for months...

  • scissors
    August 10th, 2009

    I am so tired, and cannot stop sleeping.  It is nearly 2pm and I am still in bed, just woke up after a snooze.  It is the complete opposite to what it was like when I was on steroids.   When I first woke up this morning, I noticed my hair coming off now in bundles.  I got really upset.  Ever since the diagnosis, this is what I have feared, and what has been making me upset the most.  I texted Gow, and he called me back immediately.  It looks like we are going to shave my hair off tonight.

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