Still stumbling around the minefield, with no obvious end in sight. I have finally finished two week dose of Foscarnate, the drug I needed to control the CMV reactivation. But it is a really nasty drug with bad side effects. For me it has been my bladder with relentless pain and spasm. I have also had a reactivation of a Bladder virus called BK. The focus is now on my bladder to try and get that back to some level of normal functioning. Yesterday I had another 'endnethscopy' (total wrong word, but never the less, an oscopy) that involved cameras, biopsy scrapings, bladder function testing. Luckily it was all done under a general anaesthetic. Also had a new catheter put in.
I have never experienced such pain as with a bladder spasm. Has me yelling out frequently despite being pain killered up to the eye balls. Seriously had enough already. But I have to get through to next monday to see if there is any improvement. If not I may be given Botox direct into my bladder. This will apparently freeze the muscle and stop the spasming. I know, there are plenty of jokes in there somewhere...
Sorry, very much focused on my pain and misery. Thanks to so many of you, near and far for your constant and continued support. All your emails and blog comments have kept me going. Marina so brilliant to hear from you all, da bella Venezia. Tornerò presto. Lots of virtual hugs being sent and recieved right round the globe. Meantime, one day at a time, sweet Jesus.... Back soon tch xxx
Ps my mouth is so dry I have constant fantasy of burying my face into ice cold sweet water melon. I think about the fruit that luigi and I ate out in Venezia, all sweet, juicy and cold: dark red cherries, peaches and hunks of water melon. My taste buds currently totally corrupted. "Even water don't taste like what it oughta"
13 comments:
Tessa you still amaze me, how the f..k do you manage to end your blog with a sentence that makes me laugh after everything you're going through? I've just recovered from a spasm in my neck for a couple of days and that was horrendous you are amazing!!!! Stay strong and hopefully sweet juicy fruit in Venice will become a reality by the summer!!!!Big Love, hugs and kisses always xxx
Great to hear from you Tess, sounds like hell but you are doing amazingly. Hopefully the worst is over now the 2 weeks of that awful drug are done. On the up side you will have the youngest looking bladder in south London after Botox! Lots of love as always Wen xx
P.s. when my cherry tree crops they are all yours ;)
Great to read your blog again. Been checking every day. Made me smile. What a wonderful drug is Botox! As many of us have said, you have a promising literary career waiting for when you emerge from the battlefield.
First day of autumn here and pissing down.
xx K
Everything in there sounds ghastly Tessa - Thank God you've finished that drug. Rest assured the birds are hopping about in Spring-like fashion here in Norfolk - and therefore in your garden too. Hopefully you'll be watching the nest-building soon Love Lisa xx
From Audrey;
Rachel's just bought over the machine, (laptop) and I have just read all your blogs and I just want to say that we love you and are thinking of you ALL the time. We have just come back from Somerset, so now Rachel said she will the bring the machine over regularly and show me what you are writing.
From Fred;
You are in good hands, the specialists in endoscopy are all former german submarine commanders, but don't let them use torpedo's. Chin up. I know it's horrible but it will get better I am sure. Up periscopes! or down periscopes?! Love from Freddy.
My friend billy tells me that though things are bad, knowing you, you are strong enough to get through. Lots and lots of love from us. A&F. x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x
Tessa, just saw Luigi. As you know my Italian is Not that good. He sai Not Good, Not Good. I am glad you posted in your blog yesterday to have Not Good explained. Keep running, Tessa. Love, Katrin and Matti
Sounds awful Tess as we said before it is time we took a turn and gave you some overdue relief. You are so so brave and I agree that you are amazing that you can still make us laugh!
Hope the end of this nasty drug brings some peace for you.
Three weeks until my Oz trip but will be keeping an eye on you from there.
Lots of love and purrs from sunny Sheffield xx
talk of water melons has got me hungry again. when i went to italy in the 80s there was water melon ice cream. back in the uk the height of sophistication was wall's ice cream between two wafers. since then i've converted to italian. tonight's recipe: pancetta cubetta; onions, garlic, shitake mushrooms, red chilli, wine, toms. with penne pasta. timings are irrelevant just look to your inner italian cook. been watching bitchin kitchen with nadia giosia italian/canadian). lines like "someone said real italians don't sprinkle cheeze on fish, if you're looking for an alternative to cheeze why not sprinkle some go-f**k-yourself instead" or how to prepare crab: "grab hold of the legs and twist and pull, like the song except with less singing and more dismemberment". i'm guessing with all your medication guzzling a bottle of chilled prosecco is out of the question – better medicine though.
Hi Tess,
Like all your friend I wish there was some way to help you throug these painfull times.
You have been so brave - inspirational.
Hope now you've finished the nasty drug you will start feeling more comfortable.
Went out with the dog this morning and spring is in the air. Daffodils and crocus coming out and even had some sun.
Fingers crossed that you'll be feeling better soon and
able to get home.
Thinking about you and sending lots of love
Rachel xxxx
God Tessa.It does sound like torture.Hopefully you feeling a bit better after the few days gap since you wrote this last post.
I -like others -are amazed at your ability to raise your game and make jokes about all this despite the pain!! Such strength will see you through it.
And I will bring you fresh strawberries and a bucket of delicious juicy greengages from the allotment when ripened.
Can you watch Man U in any way? Big game tomorrow night v galacticos.Will be imagining we are doing this together.
Love and hugs
Tonyxxx
Darling Tess, Very relieved to see you posting ...NOT pleased by your suffering yet more. Many kisses for all the painful places,even that bladder. I hope by now something's worked,Botox or not.You shall have that watermelon, at least a whole Frida Kahlo's worth.
Much love xxxxT
Oh T if only we could make it better. i know that your silences equal dark days. stay brave hang on in there We feel so helpless checking your blog daily and hoping for good news. We are here praying -well you know what I mean! for you & when things get better will decend on Kings laden with armfuls of fruit or anything you else for that matter. Longing to see you back on track. everything crossed and sending huge love and gentle hugs. L J M & G XXXX
Tess,Keep that fab sense of humour up !! Keep on fighting YOU CAN DO THIS & WIN !! Always thinking of you & sending massive Love & Hugs.KXXX
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