Piia Pauliina
  • 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.