Laurence

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  • #129898

    Laurence
    Participant

    Hi Tony

    Yes I was told over the phone by the duty doctor from my GP surgery on that day. Told I had a form of cancer called Myeloma but she didn’t know anything about it and I should “Google it”. The GP who was monitoring me didn’t work that day but she knew my results would be back so she came in to view and called me an hour later to apologise on behalf of the surgery and arrange an appointment for the following day with her.

    I was diagnosed in March 2010 but probably had it for over 6 months as it fractured 11 vertebrae. Had my first SCT at Kings in March 2011 and a second one in March 2016 again at Kings, second time isn’t as tolerable as the first – body says I’ve been through this before. I’m 65 and active although lost six inches in height due to vertebrae fractures – two have fused together as they healed -which means the back will let you know when enough is enough each day.

    Hope all goes well

    Regards
    Laurence

    #129398

    Laurence
    Participant

    I had my first SCT in March 2011 in Derek Mitchell (DM) ward in Kings and my second in Waddington (W)ward in Feb/March this year. DM is the busier ward as its tied with Davison Ward and has 14 individual rooms whilst W is further along the corridor at the end of the hospital and has 9 individual rooms and is quieter. W is a newer ward built since my first transplant and being at the end of the hospital you get a better wifi reception to the hospital wifi (which you can purchase on a daily, weekly or monthly basis) and get a decent mobile phone signal. That was not the case in Derek Mitchell as the wards in that part of the hospital are spokes off the main corridor and you look out onto the wall of another ward. I was lucky, I looked out this time over South East London but at least I had a view!!

    As another poster mentioned the staff are absolutely terrific and caring, first class. The food wasn’t as good this year as the first time but you probably won’t want much anyway. You can always arrange for relatives to bring in food from home within reason. Most of the TV’s also have a DVD facility as well. All the rooms in DM and W have filtrated air which means to a large degree you can treat it as air conditioning and lower or raise the temperature in your room. The rooms in Davison do not have filtrated air which means they can get very stuffy as you cannot open the windows in any of the rooms.

    You should go to the pre admission walk through as this will help you when you are first admitted for at least you will understand the surroundings and procedure. You will have the melphalan chemo the day after the evening you are admitted and your stem cells will be given back to you the following day. You are allowed outside your room for the first five days or so as you will not be neutropenic but as soon as your levels start to plummet you will have to remain in your room and be careful who comes to visit you – nobody carrying infections.

    When your neutrophils fall below one your obs are taken every four hours including during the night and be prepared for a spike in your temperature to 38 degrees and above whereupon you will have iv antibiotics. You will also be given red blood and platelet transfusion if your levels dip too low along with any electrolyte supplements.

    It’s not pleasant but certainly do-able, first time round I pretty much sailed through and was out in 17 days with a quick recovery but second time is and was a lot harder both in hospital and recovery, I was in for 23 days and felt like I was sent home really because they needed the bed. Myeloma is individual to everyone and this includes your time in hospital and recovery.

    Your room will be thoroughly cleaned each day and the shower hoses and rose are changed for each patient. When I was in this year they even changed the water supply pipes in the rooms from flexible plastic to metal as this restricts the likelihood of infections from stagnant water in the pipes.

    Another item this time round was the amount of time it took to get a bed compared to 2011. They give you a provisional admission date but I eventually got admitted three weeks after this date due to “no beds available”. There is a lot of hanging around hoping the phone will ring and trying not to catch infections when this happens. The specialist admission clerk did inform me that patients from overseas are admitted to schedule as they will have booked flights etc in advance – I thought this was the NATIONAL Health Service!!

    I wish you all the best with your transplant, happy to answer any other concerns but another poster as highlighted very relevant items to bring in.

    #108365

    Laurence
    Participant

    Dear Mari

    Such sad news it is only two weeks since we were all together at Liz's, our thoughts are with you and your family at this time. It was a privilege to know Stephen, he was a great help to me during my treatment and convalescence.

    With much love
    Laurence and Sandra

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