Piia Pauliina
  • scissors
    January 31st, 2010

    It is 8am, and I was woken up by the cleaner who came into my room.  The night was tough, again.  I could hardly get any sleep because of chemo.  There was a lot of beeping, changing the drugs, and running to the toilet thanks to the IV fluids and diuretics.  Thus, I feel pretty rough this morning, like I had been raving all night!

    Minna came to keep me company last night, and brought me some yummy organic healthy snacks.  I would have been hungry otherwise, as the evening meal here was minuscule!

    Last time when I had this ‘day 15’-chemo, I was too sleepy to be aware exactly what was going on, and I did not realise that they gave me the Gemcitabine on top of the Rituximab and Cisplatin.  I am still on IV fluids, for another 4-5 hours or so.  All in all, this chemo will take about 23-24 hours.  I think, I will need to go home and rest after this.

    Ruth and Michael are coming to pick me up, which is so wonderful!

    I have to say the nursing staff has been so lovely throughout.  And, I have enjoyed the staying in this ward, even though the chemo has been tough at times.  Also, I have tried to see the chemo more like a ‘friend’ not the ‘enemy’.  A new thing they taught me at the Penny Brohn.

  • scissors
    January 30th, 2010

    I am at the Royal Marsden, and my neutrophil count was 17.0 this morning!  I have been busy making those white blood cells, no wonder my bones are aching.  This means they can go ahead with the chemo.  I am very pleased.  I do not like delaying my treatment.

    I am in a ward that only has private rooms.  I think, I may be in a ward where the private patients go!  It is very nice here.  And the staff has been nothing but lovely.  And, I even had a fairly healthy and delicious lunch!  So, all in all, I am having a pretty good time.

    And, they are starting the chemo soon, at 2pm!  This is so much better than last time, when I had to wait until late evening for the chemo.

  • scissors
    January 29th, 2010

    I did not have chemo yesterday because I am severely neutropenic.  My neutrophil (a type of white blood cell) count was 0.3 (normal adult neutrophil count is 2.0-7.5).  So I am at high risk of getting an infection.  I was given ‘boosters’ that I inject to encourage more white blood cells to form in the bone marrow.

    In the mean time, I will have to take it easy and avoid situations where I might be in danger to be in contact with bacteria.  Basically, I should not go out near people, and follow a strict diet for severely neutropenic patients.

    I am hoping the neutrophil count will rise by Saturday, and I will not get an infection so that I will hopefully get the ‘day 15’ chemo.

    I will be going in the hospital tomorrow with my stuff for overnight stay, but if the neutrophils are still low, I will not have the chemo, and will have to go back home.

  • scissors
    January 26th, 2010

    It is my second day here at the Penny Brohn centre.  Yesterday was a long day, we started at 8am and did not finish until 9pm!  And, we only had 30 minutes of free time during the day.  Needless to say, I slept very well last night.

    Today we started the day with some breathing and stretching exercises.  After breakfast we did some meditation and during the morning and the afternoon we have had individual appointments with a nutritionist, a psychotherapist, a healer and a doctor.

    The nutritionist thought my diet was really good.  However, I need more protein and fibre in my diet, and I must increase my vegetable intake.  I should also try and have a little bit less cheese.  I should introduce more pulses and nuts in my diet as well.  Apparently, my juice only counts as ‘one a day’ no matter how many fruit and vegetables I put in it!  But, she said juicing is a great way to increase vitamin intake, thus giving me the boots, and I should still do it.

    The session with the psychotherapist was draining but again helpful.  I did a lot of crying, but I am beginning to learn a lot about myself, and about the purpose of my life.  It is very exciting.

    The healing was lovely.  I could feel this warm energy flowing from my head to my toes.  I also had this strange sensation there were more hands on me than just the healer’s!

    I also saw a doctor, Claire.  I had a 45-60 minute appointment with her!  How often do you get to talk to a doctor for that long?  She wanted to know not only about my cancer but also how I was coping.  She said that often people ask her what is the one thing that she would recommend patients to do above all?  She said meditation.  She also made me realise that since the relapse I have become a very passive patient not really getting involved with my treatment, whereas before I was a very active patient, quizzing and challenging my medical team and making notes.  This is going to change, and I will be an active patient again!

  • scissors
    January 25th, 2010

    I have wanted to write sooner but firstly I have been ill with the cold/chest infection, and secondly I am currently doing a residential course at the Penny Brohn Centre in Bristol, and there has been very little free time.

    I had my chemo on Thursday last week even though I was not feeling that great.  But, I was pleased I had it, as I did not want to delay my treatment any further.  In the evening Suzie, Nicky and I went to see Fyfe Dangerfield play at the Scala.  Suzie won these tickets that allowed us to ‘meet and greet’ Fyfe before the gig. It was quite exciting.  He is a talented artist, his new album is lovely, and he seems to be a very lovely chap too!  I could not watch the whole gig as my legs got tired towards the end and had to sit down at the bar.

    Next day I did not feel too good, pretty knackered and slightly feverish.  It did not help that I had to trek to more appointments in the rain.

    I rested all Friday afternoon, evening and all day Saturday as I wanted to be well for my trip to Penny Brohn Cancer Care centre in Bristol on Sunday.  I woke up feeling still full of cold and pretty rough on Sunday, which really upset me.  I had had the cold for over a week with antibiotics, and I still was not much better.  Nevertheless, I decided to pack my bag and go to Bristol.  I thought, at least I will be pampered there; cooked and cared for.

    I am so happy I did, as it has been so lovely here!  The place is so calming, the food delicious but also mega healthy, they have the biggest and the best selection of herbal teas, and the staff is so helpful and lovely.  The best thing is I do not have to cook for myself, there are people who look after me!  And the fellow course mates, they are sweet and they have so many stories that I can relate to so it is great to talk to them.  They have also moved me to tears with their situations regards to their cancer, and how brave they are.  There are a couple of people around my age, and two of them have terminal cancer, which really upset me.  Even with this terrible prognosis they try to keep a positive outlook on life, make the most of what they have.  I find them amazing, and wish there was something I could do to help to reverse this unavoidable outcome.  Cancer can be evil.

    There is also an Italian girl about my age who has exactly the same cancer that I have.  She is currently getting the R-CHOP.  I said to her that she has a strong chance to beat it with that treatment and it is only the minority that end up relapsing like me.

    We have learned different ways of relaxing, what we should eat and what we should not, and we have had some healing.  We have also learned about the ‘Mind-Body Connection’, how our thoughts and emotions can affect our physical body, and how being happy, loved and cared for encourages our cells including those of the immune system work better.  On the other hand if we hold on to e.g. anger and stress, we can end up feeling tired and depleted, which will lower our immune system.  The optimal nutrition, learning ways of relaxing and promoting healing in ourselves are designed to help to support the immune system.

    I love being here, I feel like I am finally getting a little break!

    Here is a link to Penny Brohn if you want to learn about their residential courses:


  • scissors
    January 19th, 2010

    Maggie’s London Night Hike 2009 official video

    Please click on the link above.  Most people who have seen it, cried.  Be warned.  Enjoy!

  • scissors
    January 18th, 2010

    I did not have chemo today, as I have been feeling rough with a productive cough and a wheezy chest since Saturday.  My medical team thought it was too risky to put me through chemo today as this could potentially lower my neutrophils.  And, this is not good when I am already feeling ill.  So, I am on antibiotics this week, and the chemo has been re-scheduled to Thursday.  Otherwise, they are pleased with the progress.

    P.S. I have lost two kilos of fluid from my body.  I have started to deflate!

  • scissors
    January 15th, 2010

    I am not enjoying the steroids.  I am unable to sleep, and my body is holding so much water that I have gained 3-4 kilos in two days!  My face, my whole body is bloated, and joints swollen.  I know, I should not moan as I am grateful for all the treatment I am getting, and I should focus on the end result which is to beat this cancer, but I am feeling so tired and uncomfortable, I had to whinge a little.

  • scissors
    January 12th, 2010

    I got my CT-scan results yesterday.  The cancer in my chest and above the left collarbone is shrinking, however it is still there.  For some stupid reason I thought the cancer might be gone, so I was a bit disappointed, and to some degree amazed that it was still there.  My team is pleased by the progress though, so that is good.  I should be pleased too.

    The plan at the moment is to have at least two more cycles of this chemo, and then the high dose chemo with the stem cell transplant.  I have been referred to the stem cell transplant team at the Sutton branch, so I should hear from them soon.  When the stem cell transplant with the hardcore chemo happens, I will have stay in the hospital about three weeks.  I would stay in a specialist ward with other neutropenic patients.  I am already dreading it.

    I had a problem with my PICC line yesterday.  It was blocked!  Luckily, the ward sister at the Medical Day Unit managed to clear the block eventually.  I was so relieved.  I absolutely HATE cannulas.  I desperately need my PICC.

    It was also the day 1 of the second cycle of chemo yesterday.  I got Gemcitabine and Rituximab.  This time they gave the Rituximab at high speed, and it took only an hour and a half.  That was good.  I asked them to give me the very last drop of the Rituximab knowing how expensive it is!  Ruth and Michael came to pick me up, which I was very happy about since I was feeling exhausted at the end of it.  Next Monday I will have the Gemcitabine only which should be a quick treatment.

    I am back on the nasty steroids, Methylprednisolone, which make me very bloated, cause me insomnia, and make my face swollen.

    One of my New Year resolutions is to learn to play my acoustic guitar.  There was a course at the Hackney Community College starting tomorrow that I wanted to do, but I found out today that it is full. However, there is another guitar beginners course that starts in April this year, so I managed to enrol in that one!

  • scissors
    January 7th, 2010

    Cancer survivors ‘facing neglect’

    By Adam Brimelow
    BBC News health correspondent

    A cancer charity has warned Britain’s increased survival rate is not all good news – because survivors often go on to struggle with other serious illnesses.

    Macmillan Cancer Support said the number still alive in the UK at least five years after initial diagnosis has climbed to 1.25m.

    But the charity says many patients and doctors do not appreciate the lasting impact of cancer and its treatment.

    This, it says, is leading to long-term neglect of some patients.

    Macmillan says all cancer patients should be advised about possible long term side-effects and other health problems that may develop years after treatment.

    Advances in cancer treatment and improved screening mean that more people are living longer after being told they have the disease.

    Health problems

    But even when treatment is successful, cancer patients are more prone to health problems.

    These may include weight gain, memory loss, bowel problems, and bone and heart disease – often as a result of the cancer treatment.

    There may also be mental health problems such as depression and anxiety.

    But Macmillan Cancer Support says many people – including some doctors – are not aware of the possible long-term effects of cancer and its treatment, so patients do not get the support they need.

    It estimates that around 250,000 patients who are alive at least five years after diagnosis have chronic health problems.

    Professor Jane Maher, Macmillan’s chief medical officer, said failure to advise people about possible problems ahead can ruin lives.

    She said: “Not managing these consequences of treatment can produce unnecessary anxiety at one end of the spectrum, and it can also cause real problems to people in terms of disabling their lives at the other end.”

    Practical advice

    She says patients need practical advice when cancer treatment ends.

    “They need to know what is their risk of cancer coming back, and what is their risk of the treatment causing them problems in the future, so that they can do the things that they can do to help themselves.

    “They should know what to report and who to report it to, and they can be assured that they can get back into the system to have those problems dealt with months, years, even decades after the treatment.”

    In an ICM poll of just over 1,000 people, 94% said they would expect those finishing cancer treatment to be offered a full assessment of ongoing needs, and 92% said there should be a discussion about potential side effects.

    A similar figure (89%) said the NHS should provide a personalised care plan.

    However, Macmillan said many patients still are not offered these services.

    Severe side effects

    Karen Theobald, 46 and from Surrey, was diagnosed with a form of bone cancer seven years ago.

    She had chemotherapy and radiotherapy, and although she has been told she will never be in remission, her cancer is stable.

    However, she has suffered severe side-effects affecting her gall bladder, her kidneys and her memory.

    Two years ago she developed sore lumps in her legs. She has to take morphine every day to try to control the pain.

    She is grateful to be alive – but says she was not warned of the problems she encountered.

    “I was told my hair would fall out, that I’d get a sore mouth and that it would affect my fertility. But that was basically it.”

    She finds the loss of memory especially frustrating.

    “It used to be really good, but now it’s a nightmare,” she said.

    “I have to have Post-it notes all over the house. It’s the only way to get things done.”

    Professor Mike Richards, the government’s cancer tsar, accepted more needed to be done to help cancer survivors with their health problems.

    He said new plans, including the need to tailor care to the individual patient, were being drawn up.

    He said it was particularly important that patients were aware that they could re-access services if they needed them.

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