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Tuesday, 29 December 2009

Today was my big screening day at the Marsden and I had been concerned about having to lie down for the CT and particularly the MRI scan. This is because I haven’t laid on my back for 10 days now and have been sleeping (trying to – that is) sitting up with pillows. It’s just too excruciating lying in bed. I described it to the palliative care nurse today as the back pain you get when in labour – but constant.
Palliative – what a horrible word. Don’t like the word terminal either!
So I’m to take regular tramadol instead of saving it till night time and oxycodone as morphine doesn’t seem to work. Along with the other drugs I’ve started for the pain - diclofenac, paracetamol, pregabablin AND stuff to protect my stomach and keep my bowels working. 2 weeks ago I was just taking vitamins!
Unfortunately I am not eligible for the clinical trial because the marker for melanoma activity in my blood (LDH) is too high. It’s 426 where the trial limit is 400! So at least no MRI of the brain was necessary.
I get standard chemotherapy – dacarbazine and am scheduled to go back next Wednesday for the first infusion – and to have an MRI of my spine and discuss the results from the CT scan.
We keep telling ourselves – it’s meant to be this way. It’s for the best. Thankfully I’ve got Giles with me to point out all the positives. There couldn’t be anyone better to get me through this!


pat said...

Dear Katie.
All been thinking of you all day at work and just seen your news from the marsden today. Hope the medications will now help with the pain and you can get some rest and praying the chemo will help. Try to keep positive as Giles is. love to you and your family.
Pat and family.

Rebecca said...

Katie - was thinking of you throughout the day as knew you were at the Marsden - glad to hear you've got, hopefully, more effective pain relief now, and really hope it helps to relieve and manage the pain. Hope you can get some sleep now. We are looking forward very much to meeting up later this week, after our snow-bound earlier date - will call you in the next few days.
All our love, Rebecca, Danny, Amelia and Lauryn xxxx

Anonymous said...

Have never met you but feel I know you from following your blog for which your mum passed on the address. Have thought of you a lot particularly today as I knew you were going back to the Marsden. Just wanted you to know I am thinking of you.
Jill Tyler-Jones

Karen said...

Can't think why this is meant to be or what you have done to deserve it. Just hope you can get through it and the pain eases. Make sure they give you Emend (aprepitant)on day of dacarbazine infusion and for two days after to control nausea.
My thoughts, love and prayers are with you and your family. Karen

nicola said...

Hi Katie,

Thinking of you and praying for you every day.

Nicola( CMH) XX

Anjella said...

Dearest Katie

My thought and prayers are with you.

With love & hope for pain relief

Ajella, Richard, Natasha, Eldon, Ridley and Xanthe x

Anonymous said...

Dear Katie we were thinking of you so much yesterday.Fingers crossed the analgesia now works enabling you to rest more comfortably.It is impossible to imagine how you are feeling but try and take your lead from Giles and be postitive.
Much love to you all
Clare Ian and family xxxxxx

annie said...

Dear Katie

Giles spoke to us this morning. My thoughts and prayers and wishes and hopes are with you. x

I really hope that the stronger pain relief is more effective, so you have some better sleep.

love annie

Marianne said...

Dear Katie
So sorry you didn't make the trial, but glad you didn't have to go through the extra scan, and also glad that you have got more pain control now. It must help a little bit to know what the next step is. Although I don't think for one moment I can fully appreciate how you are feeling, I'm trying to put myself in your place and it really brings home to me how strong you are being. I'm sure you are drawing a lot of that strength from Giles and the children. Thinking of you and looking forward to seeing you on Sunday night.
love Marianne xxx

Anonymous said...

Dear Katie,

I am pleased to hear that you have now got some effective pain relief- but so sad that you have to suffer at all - my thoughts and prayers are with you all,
lots of love
Nicky Max and Aurelia xxx

Fiona said...

Dear Katie,

I have thought a huge amount about you and your brave attitude to this appalling disease. Having such enormous positivity cannot always be easy, but you have the ability to see the plus side of every situation and the strength of character to fight.

It is obvious that you have a great network of friends and family that love you and are supporting you. I hope you remain free of pain and try to rest up before the chemotherapy.

With love

Fiona (Allen)

Liz said...

Dear Katie

You and your family are never out of our thoughts and prayers.
I'm so sorry to hear that you are now in pain and hope that the new medications provide effective relief.
You have a wonderful supportive family, and if we can help in any small way we will be there for you and Giles.
Love Liz

Nadia said...


Our thoughts are with you during these hard times. Lets hope the new pain relief regimen settles your back pain quickly.

Nadia and family

Sharon said...

Dear Katie, was hoping to bump into you at Hanbury and I can now see why (having just found and read your blog). Maureen has given me the clothes back from Lapland, the pictures look fantastic and I'm so glad you enjoyed it, isn't it a magical place! The memories will never fade! I'm sorry to read that you're in so much pain at the moment, I hope they've finally sorted out the drgus and you are getting relief, if you can't get to hanbury for a coffee, maybe you might like some company and I'd love to pop by and join you at home. Now I know where you are will keep in touch, your strength and positive spirit is an inspiration. Love to you, Giles and the kids.

Sharon xx