Piia Pauliina
  • scissors
    July 24th, 2010

    Sorry for the late update.  Since I got to go home, I have been feeling incredibly tired, weak, and experiencing a complete lack of appetite.  And, because I was not eating, I was getting weaker every day, that by Tuesday this weak I was a wreck, emotionally and physically.  Luckily, Minna came to rescue.  She called our friend Ruth to come around our house to feed me during the day, and Minna has been coming to see me in the evenings and would not let me off from eating.  It has been strange for me, as I normally LOVE food, but I have had zero appetite, and most things revolt me.  But, I HAVE to eat, otherwise I will never get any stronger.

    However, slowly, every day, I have eaten a little more with a slight improvement in appetite, and thus got a little stronger every day.

    They did warn about the lack of appetite and fatigue, but never guessed it would have been this hard!  But, like I said, I am getting better every day.

    The good news is, on Monday my blood counts were really good, almost within the normal range!  I am getting there.

  • scissors
    July 14th, 2010

    The CT-scan showed my spleen is absolutely fine!  They cannot say why I am in pain.  The only explanation still seems to be that the Peg Filgrastim booster for my bone marrow on day +1 somehow affected the spleen, and it should recover spontaneously in time.

    In the mean time, I have to try and manage the pain with painkillers.  I am on a really high dose of Oxycodone which make me ever so drowsy; I cannot keep eyes open, and I will end up sleeping most of the day.

    The BIG news is, the doctors said that I can go home tomorrow!!  I am SO happy.  I will get to sleep in my own bed, have some autonomy, peace and quiet back.

    I felt quite emotional when they said I could go home.  I had been trying not to think about it to avoid disappointment, and also I had been worried about the spleen.  I was delighted to hear the spleen was fine, and that the doctors thought it was safe to send me home.  This is it, I have done it!!!

    P.S. I asked the dietician about non-peeled fruit,  and she said it was fine as long as my neutrophils are 0.5 or above and I wash the fruit thoroughly.  That means, I can go back to my usual breakfast, oat porridge with oat milk and loads of berries.  I cannot wait.

  • scissors
    July 14th, 2010

    I had a CT-scan of my spleen yesterday.  I should get the results today.  Fingers crossed everyone it is nothing too serious.  I will have to wait for the doctors to see me today before I have a clue when I might be going home.  I suppose my discharge depends on the spleen now.  I m not in any rush.  Of course, I would love to go home today, but I rather go home when I feel well enough to go.

    I have been reading the patient information leaflet on ‘Going home after your transplant’.  Even though my blood counts are good, my bone marrow is now entering into a recovery phase, and I will continue to be at risk of an infection.  Here are few things they are advising, most of which are not new to me.

    It is good to have guests come and visit, but “they should stay away if they have colds, flu, and diarrhoea/vomiting”.  Makes sense with or without cancer?

    If someone who I live with develops a cough, cold or stomach upset, they should wash their hands properly with soap and hot water.  They should also cover their mouths ideally with a tissue when coughing/sneezing.  (We are already used to this.)

    I should avoid using the same hand towel as the rest of the housemates.

    I should not have a new pet during this recovery period!  Sorry Suzie and Lisa.

    I can go out, but I should avoid crowded places as much as I can.  I should try and go out when places are not too busy.  An afternoon pint anyone?

    I should do gentle exercise, such as walking, and some cycling with my Dutchie of course!

    I can do some little gardening, but I should avoid bright sunshine; I should not handle homemade compost or decaying leaves as these may contain fungal spores that can give me a chest, ear or sinus infection; and I should wear gloves at all time during gardening.

    And, I can have fresh flowers at home as long as the water is changed frequently.

    I should continue to drink at least two litres of water daily, drinking either tap or filtered water.  Bottled water is NOT recommended, as it is not chlorinated.  Filtered water it is then!

    I can drink alcohol, but in moderate amounts.  Suits me fine.

    The good news is, that when I leave this hospital, I can eat thoroughly washed, and PEELED fruit.  I should make sure the fruit and vegetables are fresh and not bruised.  I can have salad, but only if I wash it well, even the pre-packed salad.  Again, I should not eat soft boiled or runny eggs, and I should stick to hard cheeses.  I am still not allowed to eat Brie, Stilton, or prawns.  (What a shame.)

    I can go out to eat in restaurants, as long as the food there is freshly cooked and not reheated.  I should avoid salad bars and salad garnish in restaurants as they tend to be left out for long periods.  My stomach may also be sensitive for strongly seasoned and spicy foods such as Indian, Chinese and kebabs.  I should try and avoid these restaurants for the next few months.

    As for take-away food, pizza is a good choice.  Il Bacio, expect my order very soon!

    I should avoid the delicatessen counter in supermarkets.  These foods are left out all day and handled by many staff.  I should use pre-packed ham and cooked meats.

    Generally speaking I should follow these guidelines:

    • Make sure the food is always in date.
    • Cook all food thoroughly.
    • Never reheat food more than once.
    • Always wash the hands before handling food.
    • Store cooked and uncooked food separately in the refrigerator

    I cannot go swimming, or go to sauna while I still have LTS line in situ.  The clothing that touches the line should be changed daily.  I should also change my bedding weekly, and have my own personal towels.  The towels should be changed regularly, and dried quickly on a towel rail after each use.

    If my temperature goes up, above 38 °C, I must contact the hospital immediately, and NOT take paracetamol to lower the temperature down until I have spoken to a nurse or a doctor at the hospital.

    Generally, the recovery after a transplant can be a long and slow process, and will involve many outpatient appointments.  I will not always feel well, and fatigue can be a major problem when trying to live a normal life.

  • scissors
    July 12th, 2010

    It is day +13.  My blood cell counts have been improving every day.  Today’s white blood cell count was 3.4; haemoglobin 9.8; platelets 27; and neutrophils 2.83!

    Theoretically, I could go home, as the blood counts are good and the mouth ulcers practically gone.  However, I developed this stabbing pain around the left kidney area last Tuesday (day +6) evening.  They did an ultrasound scan, which showed the kidney was fine, however there was water around my spleen.  Apparently, the Peg Filgrastim booster on day +1 can cause problems in the spleen.  This is not serious and will resolve itself in time.  The main thing is pain management.  This spleen pain has been pretty bad, but I think it is slowly improving.

    I saw the doctors, including Dr Ethell this afternoon, and I think they want to keep me here a little longer because of the spleen (the original idea was to send me home Tuesday, or Wednesday the latest). In the mean time, they are organising everything to be ready for my discharge.  I try not to think about the discharge date too much, but I would love to be home for the weekend!

    I am still finding reading and writing difficult due to my drowsiness, so this is all I can manage tonight.

  • scissors
    July 9th, 2010

    I have been trying to write my blog for a couple of days now, but have struggled with it, as I have been so drowsy from my medication.  I have started many times, but have fallen asleep.  Today is day +10, and I am feeling much better, so I am giving it a go, let’s see how far I get!

    My white blood cell count has been improving since the day + 8.  First it was 0.2; on day +9, 0.4; and today, 0.9!  My amazing bone marrow, and stem cells!  The mouth ulcers are improving, and I do not need extra pain killers on top of what I get through the pump.  Swallowing is pretty much pain free!

    My consultant, doctor Mark Ethell said this morning that if all goes well, I would be looking at going home on Tuesday or Wednesday this week.  I will try not to think about it too much as I do not want to be disappointed if I cannot go.  I wanted to mention it though, as it is exciting news!!

    It is exciting as I am getting quite fed up being here.  I mostly miss having some ‘me’ time, as there is no peace and quiet here, or privacy!  Everybody knows about my bodily functions or lack of them, and I know theirs!  I get a tiny bit of ‘free’ time per day if I am lucky.  This is also why it has been difficult to write my blog.  Furthermore, I have only managed to watch two films so far; I have loads to watch when I’ll get home.

    Talking of privacy, I just want to get this out of my chest.  The ward receptionist helped me to get a connection lead for the bay /hospital computer, so that I could use their faster internet connection via my MacBook.  Initially, she was quite reluctant to help me after she heard that I needed the faster connection for instance to Skype my family.  She said the hospital is not so happy about Skype as there is a risk for other patient’s privacy.  I was like, WHAT?!  I would not be showing other patients to my friends and family, and besides what about MY privacy when friends and family of the other patients in my bay are here.  They can hear everything what is said about me, and can see all my movements.  And some of them stare at me, which is highly uncomfortable.

    Luckily, the occupational therapist has been coming to see me.  She has given me two relaxation sessions using imagery and gentle body relaxation.  These sessions have been wonderful; I get to drift to another world, away from Sutton leaving me feeling calm, painfree and peaceful, at least for a little while.

    I also had a relaxing aromatherapy massage session today.  The therapist used lavender, cedarwood and orange oils mixed together, and massaged my bloated, painful tummy and back.  Just what I needed.

    I have nodded off to sleep, at least 10 times whilst typing this… I think, it is time I had a proper snooze.

    My tree of infusions on Thu eve (day +9). The white bag is my feed; the yellow bag is antibiotics; and the bottom one is a pump to pump potassium in me. And, I only have two lines in my LTS catheter! Hence, they had to insert an additional cannula in my left arm. There were so many wires attached to me!

  • scissors
    July 6th, 2010

    It is day +7 morning.  The white blood cell counts dropped down to zero on day + 4, and they have been zero since.  Also, by day + 5, my haemoglobin was down to 8.2.  I was given two bags of blood for that.  And, yesterday I needed a bag of platelets, as they were excessively low too.

    The biggest problem I have had is the mouth ulcers, mucositis.  My throat was the first area to ‘go’, and now it has spread into my mouth and further down in my throat.  Morphine was my choice of a painkiller, and I was given a morphine pump with addition of a choice of oral morphine as and when needed.  Well, I needed the oral morph ALL the time, as the pain was still ‘the worst I had ever felt’.  The pain was not going anywhere with the pump alone.

    To no surprise, one nurse noticed that the pump was not delivering much morphine at all.  It was a laborious process of dealing with doctors and nurses, but I am getting a higher dose of morphine through the pump, and intravenous morphine (stronger than oral morphine) as and when I need.  Which again, is often.  I am hoping to see the pain management team, as they know about the pain!

    Also, I spiked up the temperature yesterday, and the blood cultures showed I am brewing an infection in my blood somewhere.  Hopefully, I will find out more about this today, and will get the right type of antibiotics.  However, I am getting antibiotics that cover a whole range of infections, so I might already be covered.

    A woman next to me has got a chest infection and she is coughing all the time.  I hope I will not get her bug! (I have the curtains between our beds closed all the time thinking that might help …. maybe, psychologically it does….)

    I have to boast a little.  When my temperature was high, my little body managed to reduce the core temperature back to normal just by its self, no paracetamol needed.  It is AMAZING what our bodies can do, even with no white blood cells!

    Back to the pain.  So, I can just about to swallow now.  I am only really able to drink/eat ice-cold lollies and icy water made out of special nutritional drinks with minerals and vitamins.  I simply live on these drinks.  I still suffer from nausea and diarrhoea.

    I am actually surprised.  Apart from everything that I have mentioned above, I think I am doing well.  I find it fascinating how the body can cope with very little blood cells.  How is it possible?  Yet, somehow it is.  Our bodies are BRILLIANT.

    Even though I am in pain, and have these horrid ulcers, I feel happy.  This pain is only going to last a couple more days, and then I will recover.  And, I will have a whole ulcer-free life ahead of me.

    The last two days I have been far too ill/in pain/drowsy to have guests, and I have had to cancel my lovely visitors.  And, I cannot speak much thanks to my mouth ulcers, and the pain.  Sorry for anyone I have not rang back to.  I will, once I have a bit more energy, and the pain is reduced a little.  In the mean time, please read the blog!  Lots of love to you all.  Miss you!

  • scissors
    July 2nd, 2010

    It is Day + 3, and my white blood count is almost zero, 0.5. That is expected. The blood counts will be down for a while, maybe another 4 days or so, before they will creep back up again.

    I am having a bit of rough week, feeling sick and having diarrhoea (nice). I don’t feel like eating at all.  They are giving me these energy drinks in form an ice-lolly, which I quite like. That is all the food I am able to tolerate right now.  It is strange for me as I normally LOVE food.

    I might try and do some mediation now.