life's always a changin'

deep sigh..........big breath!

2011-03-20T07:07:58Z

We've had a difficult 3 months. The pain in Pat's shoulder had been getting increasingly worse, excruciating at times, he's had a low grade fever for weeks, night sweats and irregular blood results but our consultant has been dragging his feet and has not been on top of Pat's case. When a liver biopsy came back clear he said he was "quite optomisic" but we knew better and our certainty that this was cancer related was right.

Our GP, who is fantastic, was increasingly worried that nothing was being done to get to the bottom of Pat's symptoms so last Wed had Pat admitted to the Infectious Disease ward (ruling out an infection seemed a good start). The team on the ward was great, they discovered Pat was very anemic so he's had a blood transfusion and they ordered a CT scan which has shown up secondary bone cancer on his left ribs. They jumped into action to sort out a management plan for Pat's pain and last night he has his first good nights sleep for 3 months!

I don't like moaning about the NHS as generally we have had good care from them, but what was the consultant doing? If our GP could see a problem and we ourselves knew there was something massively wrong why didn't he admit Pat to hospital 2 weeks ago when we met with him to discuss all these symptoms? We left the meeting feeling frustrated and scared. Thank goodness for our fabulous GP who stepped in to do the consultant's job!

Enough ranting. We are back on track now and waiting for more detail and a treatment plan to be worked out. The multidisciplinary team meet on Tuesday so I expect we will hear more after that. In the meantime Pat's in hospital and looking forward to coming home with his morphine!!!

A slow process!

2011-02-06T15:46:57Z

We found out in September that Pat's cancer had spread into his lymph system, 2 scans later we were told it's in his liver and lung, 3 scans later we are still waiting to find out details of any treatment! It's such a slow process. Now he's scheduled for a liver biopsy on Wednesday to give the oncologist more info about the extent of the cancer before he decides on a treatment. In the meantime he's had weeks of bad left shoulder pain which we have been told may be referred pain. As a paraplegic he's finding this very difficult.

We know treatment won't cure his cancer but it would feel better if we were at least trying some treatment to slow the spread.

Here we go again!

2010-09-08T21:18:47Z

Just as we thought we might manage a few weeks of normality after Patrick's op and before any more treatment he's been taken in to hospital with an infection. Went in on Sunday and they can't get his temp down. More scans and tests today to try and pin down what's going on. He's worn out and fed up!! Me too!!

Bummer!

2010-08-28T14:23:11Z

Found out this morning that Patrick's cancer had spread to 2 of the lymph glands that were removed at the same time as his bladder. Not great news but we don't have much detail yet - this news came in a letter! Nice!! Hopefully he'll be able to talk to someone in more detail after the bank holiday. Until then we're in the dark!

Thankful for small steps forward

2010-08-15T17:13:06Z

Pat's doing well after his cystectomy and it's great to see him making small steps forwards. He is managing to transfer independently from the bed to his wheelchair (he's paraplegic). He made it down the garden for a while today and we enjoyed the sunshine.

It's been such a miserable spring and summer for us that we lay in bed last night thinking of nice moments we could plan. Not the unachievable like fancy holidays but achievable moments.....like taking a picnic and parking in a pretty spot (when he's remasteres transferring into the car), like renting a movie and pigging out on chips and dip! Isn't it interesting how priorities change?

Sam and Hannah are being so helpful and both planning their educational changes. In September Hannah is off to uni and Sam to the local college. I'm thankful only to be losing one of them.

Glad to have Pat home

2010-08-11T14:35:11Z

I thought I'd give blogging a go as since my husband Patrick was diagnosed with invasive bladder cancer in February I have found it therapeutic to write down what we are going through and how I'm feeling.

Pat underwent 3 rounds of chemo after diagnosis and 2 weeks ago had a radical cystectomy. He came home from hospital yesterday. Having him in the hospital brought to the surface the fear I have been feeling since his diagnosis. I'm hoping having thought through the different possibilities for our future I can better cope when these fears resurface, as they are bound to do.

We're going to be concentrating on Pat's recovery from the op and not dwelling on future treatments - we don't get the results from the biopsies for another 6 weeks so there is no point beating ourselves up about what the future holds.