Monday, 28 September 2009

ups and downs

Paul has been up and down over the last few days. His heart rate really hit an all time high and his temp has been fluctuating. Also his blood pressure dropped to the point where they were talking ITU for the night to monitor him but it’s come back up again and it looks a little like he may be coming out of the infection or the antibiotics are kicking in. Subsequently they have not been giving him any of the new drug. I think they have their big meeting tomorrow with consultants so I’m figuring they will be coming up with a next step if he looks to be getting over the infection.

I know it’s their job to be ultra cautious but God it’s annoying when they go into panic mode……He’s uncomfortable and disappointed that he can’t come home but he’s gone through these infections before and come out the other side – He will do it again

And thanks for all the responses re fundraising - we need to get organised!!

Saturday, 26 September 2009

It’s a pain in the arse that whenever we try and have a weekend together Paul gets a bloody temperature. Same thing has happened this weekend – he was hopefully coming home for the day tomorrow but his pulse rate is ridiculously high and he has spiked a temperature a couple of times. They have stopped the drugs just to see how he feels – they are worried it is the drug that is pushing his heart rate up. He’s worried that they are going down that well trodden negative road again. We know that they are commited to making him better but it’s hard when they do ‘those’ conversations for the millionth time.

On another note we heard yesterday that the drug that was trialling in the states has been give approval by the FDA that means it is now available in the states. I have a gut feeling that this is his best shot. I don’t know at this stage how it would work in terms of administering the drug but I do know it would cost a lot of money. I would love it if you could all get your fundraising hats on. I don’t know at this stage how much we will need (I’m hopefully going to get an idea soon) but in the mean time if you could start the ball rolling that would be brilliant.

I know I am being vaugue as regards what we need but I’m thinking that if you were all prepared to raise money now and if for some reason it’s too late for Paul or it doesn’t happen then we can donate any money raised to Cancer Research. Does that sound fair and ok? So please, please sort out your quiz nights etc. I think I would rather have and not need than the other way round – someone will benefit from any money raised.

My number is 07968 197 311 or you can email me on

If you need to contact me about fundraising

Lets do it!!!!

Wednesday, 23 September 2009


We had our mini moon which was only marred by the fact that Paul had some kidney pain and had to go into Whipps Cross to get checked out on Saturday. It’s just so lovely to have him home even if only for a couple of days. Just the sound of him pottering upstairs or blowing his nose or him and Cass playing robot rage on the computer. We lay on the bed on Sunday and wished we could freeze time, just to stay in that moment of perfect contentment for a while.

But time marches on and he was back in on Monday. He started the new medication yesterday. It’s an hour infusion given every day for 28days. So we shall see what happens with that.

Forwards and upwards and onwards………

Thursday, 17 September 2009

Mini Moon

We waited all day for the results – I think I drove Paul a little mad with my impatience. But what they said was no real surprise. The cancer has still progressed and is showing in other nodes around his body – but it isn’t ‘marching’ on as Paul puts it. We thought there was little chance it had miraculously stagnated so we were prepared for the fact it would be on the move again.

They don’t think they will ever be able to push it back into remission so the idea is to keep him healthy for as long as possible. They discussed starting him on the new drug tomorrow but they decided it wouldn’t make much difference if they start it on Monday so that he can come home for the weekend. We need him here, he needs to come home – we can have the honeymoon (or mini -moon as Natalie called it) weekend we wanted.

Paul is in pure indignant ‘fuck the disease’ mode which gives me the boost I need to be his faithful sidekick. ‘Super P’ and the ‘Marvellous Midget’ ride again in their hardest mission to date – to rid the world of ‘Master T-Cell’ and his deadly lymphocytes! He may be lurking in the dark alleys and lonely backstreets of the sleepy city, but the dynamic duo are always watchful, always alert to the sounds of his bastard footsteps………

Keep the faith people - we are xxxxxxxxxxx

Tuesday, 15 September 2009


Just thought I should fill you in on the clinical stuff....My second to big toe has been completely numb since the wedding due to stupidly high shoes, I lost my mind and memory after one tequila shot but it returned about 10 mins later, Kitty got a cold because she stripped down to her pants, t-shirt and a headband at the reception, Cassidy sustained minor injuries by launching himself off the bed in the honeymoon suite and Paul - well the cancer hasn't brought him to knees but I think the wedding might have......

OK I know the wedding has been a little overshadowing the cancer thing but that's been a good thing. Paul actually suffered quite bad dehydration and got a bit of an infection so our honeymoon plans of being at home for the weekend didn't happen but he's felt much better since he went back in. He had a PET scan yesterday so we are waiting the results of that which should come through tomorrow which will tell us whether this chemo has done anything at all and they plan to start him on a new drug next Monday (I can't remember the name) but it's an inhibitor instead of a chemotherapy drug . I'm trying a new psychological trick for the upcoming results. I figure if I prepare myself for the fact they might tell me he only has two days to live then anything else will be a bonus - right?

Och anything is worth a try - will keep you posted x

Saturday, 12 September 2009

Da Da Da Daaaaaaaa

On Thursday I spent another night overlooking Tottenham Court Road. Except this time I watched the ethereal light of the UCH from the opposite side of the street – from the honeymoon suite of ‘The Grafton’ hotel!

For those that don't alreadyknow Paul and I got hitched in a small ceremony in the chapel of the hospital. We had talked about doing it before but I guess with all that’s going on it was never top of the list. But then we got talking again a couple of weeks ago and suddenly it seemed like a shotgun wedding was just the very thing we had to do! The10th sept was Paul’s 40th birthday so that leant a certain weight to the date.

The day was magical. The registrar was late, the priest was brilliantly bonkers, there were tears, laughter, pink bubbles, chilli vodka and fairy cakes. I had shoulder pads, sequins and high heels and Paul had jeans, converse and a killer jacket. The kids were wild and so were some of the adults, I seemed to speak to everyone and no one in a drunken swirl.

Thank you everybody that came and helped us celebrate and sorry to those that we were unable to invite – of whom there were many. We always envisioned one of those rambling country weddings but time and the fact we had to marry in the hospital chapel meant we had to pare it down. Maybe one day we will have a big party to celebrate and invite everyone!!

Special thanks to those that helped beautify me, organise flowers and decorate, look after kids, open champagne and listen patiently while I ranted! Girls you know who you are…….thanks for the amazing presents and cards and well wishes……thanks to boys for the speeches and photography and other sundries and to Nathan and Caleb for looking so smart…thanks for all the donations that made it happen….thanks to mum and Jess for the constant and unremitting support and time and effort with Cass and Kits who love you as much as I do….thanks to the amazing families we both have! Oh there is so much to be thankful for and the most thankful I should be is for my handsome husband…..hurrah I can say that now instead of ‘partner’ (urgh) or ‘boyfriend’ (not right)……

Tiredness has crept up again will post more in the next couple of days x

Hannah Stevenson xx

Tuesday, 8 September 2009


Quick one just to say Paul is patiently taking drugs and nothing untoward is happening at the moment.....thats all I can write because I am a bit drunk x