Hallo All,
More apologies in order as again slow to update this blog! Several reminders coming through...
Left hospital over a week ago now - fever went down and I just had to hang out in my room for
5 days while the antibiotics did the trick. I have been home for almost ten days - but in and out of Day Unit every other day, with one mammoth 5 hour blood transfusion last wednesday. Slowly my counts are coming back up. Neutrophils today are 0.9 - so hopefully by the end of the week they will get back to normal (1.5 and above) and I can start eating salad and fruit again and shift my rather tiresome diet to something more appetising. I reckon I may well have had my last ever stint in the Samaritan Ward. They have been brilliant there. Really looked after me. I have always felt safe and confident in their care. I wish in many ways I was able to have my transplant at Guys, in a place I know with people I trust. Kings is all unknown at the moment. All I know is the transplant rooms have windows that look out onto brick walls...that wont do the spirit much good!
This weekend managed a couple of "long walks" from home up to the Horniman Museum, round the park and back again. Also went for a short drive. Oh the bliss of getting in the car and driving again! Just made me feel normal all over. When all this is finished, my dream is to get myself a van and drive right round the uk coast - take a camera and some lino cutting tools and work-on-the-road. A print factory on wheels...
But before that, I have to get through this bloody transplant business. I have been given a date of 14th November - which is when I will have to start the "conditioning treatment" which is one week of more heavy duty chemo (I am mightily tired of heavy duty chemo, well any kind of chemo come to that) plus TBI. TBI you may be wondering, stands for Total Body Irradiation - of which I have got to have over a period of two days... I have a fantasy that I will be turned on some kind of spit and fried. Luckily because of my age, I will get a lot less than the normal quantity younger people are given. I have been promised I wont turn pink all over (people do, I have seen it, looks like really really bad sunburn). The actual transplant of the baby stem cells (cord bloods) will take place seven days after the start of the chemo. Then I am in isolation for eight weeks. Sealed door and windows. But will have a fridge. Lucky me! I will explain more later, but needless to say it has become clear to me over the last few weeks that this is a very dangerous procedure - with associated mortality and some pretty scary statistics. The baby cord bloods are very immature stem cells and take a longer time to graft than normal adult stem cells. This means until they graft I am at serious risk of infection and will have no immune system whatsoever to protect me. I will unfortunately get ill. And will unfortunately be loaded up with strong antibiotics and a load more besides.
Hey! Jolly old blog this. I am off to bed before I write anything else too miserable. Been a tough and testing time recently. Apologies if it shows! Global hIgh fives and thanks as ever for blogs, texts, emails smoke signals etc A presto tch x
8 comments:
That sounds incredibly tough Tessa and a horrible thing to have to face - you have every ounce of sympathy I can muster and I wish I could do more. Good to hear you managed a walk to Horniman and back and I hope once your blood counts are back up to normal you can take a break somewhere before the nightmare begins. Hope to see you soon? love from Jan & Gerald xx
I am rather at a loss as to what to say,it puts life's irritations into perspective. We are always thinking of you - keep positive if you can and fiesty. I am sure Kings will be fine but understand your 'attachent' to Samaritan Ward.
Buying a van and having a travelling studio sounds fab, I will be visiting you!
Love as always P
Thinking of you Tessa
Nigel xx
Hi Tessa
Sorry we're so far away and can't give you more support beyond a few words.
I think about you often.
We're bumbling along here. John's back is much better and we are now planning the trip around he world to see all out children. John's daughter Gill is doing an MBA at London Businees School, but we plan to see her in Morocco and then on to NY to have Christmas with Tom. First stop will be Singapore to see Sam Denise and the beautiful Elsa.
Don't know if your heard that Al Holmes is a Dad againd with a bouncing 10 pound plus duaghter Lily.
Stay brave.
Lots of love from the other side of the world
Kerry x
Tessa - I too am an artist and leukemia patient. I was diagnosed with T-cell ALL on July 29, 2011. MANY rounds of chemo later I am in remission and plan to stay that way! This has all been a crazy scary trip!
I just wanted to write and say hello and let you know that someone in Connecticut, USA is thinking about and sending all the good vibes I possibly can!!!!!! Two friends of mine have both undergone transplant and while it is a long road they are still here and doing well! You will too!
I am always here if you ever need to chat - sometimes you need to talk to someone who has been dealing with cancer to really feel heard and understood.
Stay strong and never give up hope!
christine
lovely Tessa, Sounds as though your still on a long journey but I'm sure you,ll arrive safe & sound. Big love, Kay
Hi Tessa
I have just found you
after what must be about
30yrs I only wish I had
found you sooner!!!
I am going to be sending
as many positive thoughts,
love and hugs as I can and
although I live in Nottingham
if you have the energy for a
catch up and someone to walk
with I can be there as I am
back down south all the time!
I'm thinking of you,
be strong!
Love and hugs
Kate xxx
hope you are finding the strength to make the most of the month before you go into hospital Tessa. Lots of old movies and chocolate whilst the rain comes down is my prescription. But then - that's my prescription for most things...lots of love Lisa xx
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