Dear all,
After last positive post, ' fraid I have to report not such good news. Been a difficult week just passed. Spent 4 out of 5 days in the day unit having various infusions and transfusions ( 10 hours on Friday ...) I have developed a condition known as Auto Immune Haemolytic Anemia, which basically means my own immune system isn't recognising my red blood cells and as a result is destroying them (how very cannibal like..) leaving me, tired, breathless and anemic. Hence all the blood transfusions (3 this week). I have been put on a high dose of steroids too to try and sort the problem. So soon I will probably have a moon face. Oh great! Hospital are trying everything to keep me at home, which I really appreciate. I so don't want to have to go back inside. But one big concern is the steroids could reactivate the BK virus (spasming bladder) which would mean another trip into hospital and god knows how many weeks of pain. So fingers crossed please that this scenario doesn't happen!
Also have been struggling since December with very bad tinnitus and hearing loss, probably due to the various toxic medications I am having to take. After months of waiting I finally got to see a hearing specialist this week. Had various tests done. It was confirmed that some nerves are damaged (permanently they say, but we'll see) and I have mild to moderate hearing loss, which means I will be given hearing aids. Lordy, old lady, or what!
I am back in HOP clinic tomorrow at 9.30 (stands for Haematology Outpatients by the way) for more bloods and probably some immunoglobulin. This is yet another blood product which I have been infused with all week (5 hour sessions hooked up to a drip stand and "giving machine"). Immunoglobulins help lymphocytes fight infections. My immunoglobulin is low at the moment, hence the infusions. Its really has been a tough week. Missed most of the lovely spring sunshine too. Though did catch a great sunset on Friday night which was a joy to see.
It's Sunday night. Luigi and I just eaten great roast chicken. He is going back to Italy this week, which is making me very sad. He will be irreplaceable. Don't know for how long he will be gone for, but it's the biennale in Venice, opening in three weeks time. So my guess is quite a number of weeks. I will just have to get used to being independent again...and thanks in advance to north and south London friends who have already signed up for shopping, cooking, and companionship. I appreciate your support so much. Gonna need it over the next weeks...
Bed for me now. Hope everyone well. Thanks for all blog comments. Lovely to hear from everyone - north, south, east and west. Lets hope first week of May brings sunshine and my immune system starts to sort itself out. Love to all. Blue skies. Back soon. tch xxx
10 comments:
My Lovely Tessa so sorry things have turned again, that roller coaster just keeps going! fingers crossed the treatment kicks in and you don't have to be re-admitted! I know you will be lost without Luigi but you must accept all offers of help, just get a good rota going!!! Keep fighting and I will see you soon,love and hugs Kate xxx
Dear Tessa - not fir the first time I wish i lived nearer and could be part of rota....this is so tough for you. I know everyone will be rallying in London - hope you know there is a wide wide network of support and love focusing on you! lots of love Lisa xx
Tessa, you know we are here anytime day or night just a call away. And of course shopping/ cooking / washing etc ROTA good idea .
It was lovely to see you and Luigi on Sunday glad the chicken was delicious did look yummy.
I will put my set of keys on my key ring so you only have to call!
Love from us all xxxx
Hi Tessa
Put me on the Rota please
Pxxx
Dear Tess, so sorry to hear of latest hurdles, and that Luigi will be away, so wish I was nearer to lend a hand, as always our thoughts are with you. Ianx and crew.
Dearest Tess, wish so much I could take on some of this for you. Hoping to come to London in a few weeks and that there will be spaces on the rota...very much love. xxxxTina
Hi Tessa so sorry to hear this news, life is very tough for you at the moment, well the last few years in reality, I hope Luigi will be back soon you must take up your offers of help, wish we were nearer. Keep smiling. Lots of love P
Hello my lovely,Look I look up and say STOP ALREADY! sorry your still battling away for a break and I wish you well. Big love. KXXXX
Hi Tess.
I'm around and ready to help out - I don't work on Mondays so can easily come round.. I know it's going to be tough when Luigi goes back so please put me on the rota.
Lots of love for now and I hope to see you very soon.
Rachel xxx
i suspect i'm heading towards hearing aids. the op from last december didn't really do anything. nothing hurts or anything – just deaf. more frustrating for others. went out with kellie and tilly last week to the bishop in lordship lane. i had good old fish and chips. much fun was had with my choice of rosé as the drink. i was tempted to order a baileys after that! kb and tw ordered some chocolate concoction for afters. the waiter said that chef was having to 'make it specially' so would have to wait 20 mins. when it arrived it was frozen rock solid. for 'make it specially' read poor attempt at defrosting. true to form tilly complained. think it was the deception that was the worst part. the bishop was reasonably quiet at the start of the evening but as the evening drew on the music (noise) went up, the lights went down, it got hotter. to my mind that isn't pleasant. couldn't hear a thing so went to sit outside in the cool, before walking back to west dulwich.
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