Saturday 21 April 2012

Day Six..

Eleven doses. That's it. Gail's done! She's reached the end of what she can physically endure. Dose eleven proved to be the one that crushed Gail's resistance... Not in mind, but in body. This morning at 7am, two hours after administering the eleventh dose of IL-2, a team of doctors and nurses were surrounding Gail's bed struggling to keep her airways open, and calm her shuddering body. The rigors had taken such a violent grip on her that she was gasping for air – they gave her ventolin through an oxygen mask. Her tongue had swollen so much that it was nearly choking her – they administered a liquid drug into her mouth. She had felt a painful tightening in her chest – they wired her up to an ECG; the doctors wanted to be sure she wasn't having a heart attack.

And all this activity while she shook uncontrollably. Pethidine, the drug used to mitigate against this debilitating, muscle wrenching side effect had been gradually losing its effectiveness over the course of the week. By Thursday, they'd actually doubled the dosage to try to counteract its waning influence over the rigors. But this HDIL-2 treatment has a notorious and intimidating reputation for torturing those 'lucky' few people who hope to be beneficiaries of its promise of a lasting remission.

It was part way through the lunch period, when I arrived at Gail's ward. I rounded the corner and I was astonished to see her stood up by her bed, just about hanging on to her drip feed stand. She'd called me a couple of hours earlier on the mobile to tell me about what had happened in the early hours. She sounded awful on phone. She'd had a rotten night dealing with dose number ten, compounded with the disturbance of the hourly observations on her stats, she'd hardly slept. Then at 5am and sleep deprived, the time had come around seemingly ever quicker, to administer 'magic potion' (Gail's pet name for it) number eleven, the dose which brought about the frightening and devastating ambush of the rigors. So, I'd expected her to be away with the fairies when I got there. Instead, there she was, a bit wobbly, seeing herself off to the loo. I couldn't believe that she was attempting to make the trip without a helping hand. I clutched her by the arm and slowly helped her across the ward and over to the toilet.

A nurse was waiting for her when she returned. She had to draw some bloods to run some more tests. Later, we were to discover why.

Gail's been itching for a bath for the last few days, but that luxury can only be granted when her blood pressure returns to normal. The upper figure has to be over 100. That's curious. It only needs to be 90 to be ready for a dose of IL-2! So Gail had to wait. It was another six hours before her bath could be run for her. That was sometime after 7pm, which was only moments after we were told the news. A young male doctor called to see Gail and told her, matter-of-factly, that she had had a minor heart attack during the rigors on dose eleven. The blood test results taken earlier confirmed this, the ECG didn't pick it up at the time. The outcome? Gail's got to remain in hospital for another three days while she receives treatment for it.

Our response..?

It only properly sunk in when we had to tell the kids. And, incredibly, they took the news better than we did; whilst we were worrying about us not being there for them, for yet more days, they texted back words of encouragement back to their mum: "We are looking after everything fine don't you worry about us, you're the best person ever, and Kofi [the dog] misses you he's lost at home without you or dad here he's going to go mental when you're home!!!!!xx" Excuse the lack of punctuation in Iona's (she's 15, our youngest, a typical teenager) text message, but she did well with the apostrophes and spelling.

That simple text message was exactly what Gail needed to hear. It was heart-wrenchingly moving for us. Gail melted, tears rolled down her tired face. It was the first time she'd allowed herself to cry in the whole time she's been here. But the most remarkable thing about that text message is how it has re-focused our resolve. It has been an inspiration, it has filled us with a renewed optimism. What's a minor, treatable, heart attack when you consider that real possibility of an extended remission? Compare that to what we might have had to face if we'd decided not to come to Manchester for this treatment? We know that it'll be another couple of months before we discover whether HDIL-2 has done the job; we're not out of it yet. But we are still, and will firmly remain totally positive about the outcome – the outcome that we want.


3 comments:

  1. I'm in tears but at least the worst is over for this stint at least. Rest up Gail, you've done so magnificently, ___ I'm so proud of you. And your family. Aren't they just great too ! I send all of you my love, longing to see you, wish I could be with you. Patricia

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  2. Words fail me to think of all you are going through!! My every thought is with you all I knew you were an inspirational person when I met you but I had no idea how incredibly strong you are!! I am sending you all my love my strength and hope and will keep you in my Thoughts and prayers always!! What a wonderful family you are! What an inspiration to others .... I wish I could take a turn to lift some of it from you. I am on your side across the miles I hope that a little of my strength my energy,hope and love reaches you all. Sending you so much love ali and will xxxxx

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  3. You are an absolute trooper! But please be careful, and listen to your body as well as your mind. It sounds like dose 11 was one too many. Lots of love. Rose xxx

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