Again another week has passed since I last wrote. Sometimes the time seems to pass in a blink and at others it oozes like treacle. Sometimes the 'Whipps Cross' days feel like another lifetime ago and other times they are yesterday or the day before. Sometimes I can barely remember a day when Paul wasn’t sick, it’s been so all consuming and other times I have to remind myself that he’s in the hospital with cancer and not just popped to the shops or at work. Time and memories and emotions and experience are all a little jumbled at the moment. I need a giant iron to straighten them all out……….
On the subject of time we have been told that if all goes to plan and Paul responds to the IVAX and the regime they have masterminded, then it will be at least 3 months till he can come home. It’s sort of helpful to have a time frame but it’s tough for him to be told he’ll be in there for at least that long. So far it seems that clinically he has responded to the current treatment. Nodes are down, lungs are getting better, rash has depleted but they will give him a PET scan tomorrow to get an idea of what is actually going on inside. This will apparently show if there is any active lymphoma in him and how the glands are inside his organs such as the spleen and liver and whether they have reduced in the same way as the ones in his neck and groin etc.
So if the results show there is a full or partial response then they will fire in with more Chemo tomorrow or Wed. The proposed regime is more Codox M, then more Ivax and then a bone marrow transplant. They have taken blood samples from both sisters and if they are a match then that’s great and if not, they will refer to a list of donors. In the unlikely event that the scan shows there has been no response then they will change the drugs and try something else. So fingers crossed for tomorrow.
Paul is not looking forward to the Codox M as it was the drug that made him feel so rotten last time but I think the advantage is that he knows what to expect this time round. If it looks like he can’t stomach any food he’ll ask for an NG tube to be put in sooner rather than later and he wants to review how his anti-sickness drugs are administered. He’s so amazing in that he doesn’t just sit back and accept everything that is thrown at him without questioning it first, or at least being informed as to why things are done in a certain way and is very direct about how he wants things managed – which is brilliant.
Some wonderful news is that that we have been able to go in and see him. I went last Thursday for the first time in a week and the kids went in on Saturday and also today. It’s been so nice just to hang out together, watching a bit of telly, munching on snacks and lolling around on his sofa (and in my case snoozing on his bed on Saturday I was so hung-over – thanks Wend!). Kit’s still peers at him quizzically from time to time as if she can’t work out what’s different (it’s lack of eyebrows Kitty!) and Cass is obsessed with all the equipment and the oxygen tanks and totally thrilled that he is on the 16th floor. It’s nice just being a foursome again and for Paul to cuddle and kiss them and answer the incessant questions and sometimes tick them off for being naughty – you know all the normal stuff. And today he came out with us when we left with his portable oxygen tank and went down to the hospital shop! Which feels like such an achievement. In fact I think tomorrow we might even be able to sit in the canteen and get a coffee together yippee! Small things are so utterly appreciated right now.
So let’s just hope that this scan shows that he has responded and we can get on with the regime and then the plan that he is convalescing at home over the summer can go ahead. I smelt the first BBQ being sparked on Sunday and it made me think of Paul, beer in hand, spinning prawns and sausages to charcoaled perfection. The grass is so long now in the garden now its like ‘Honey I Shrank the Kids’ when the kids go out there. They are battling against 50 foot blades of grass and dandelions the size of skyscrapers - it’s just one of the jobs I’m saving for him when he gets home. Tee hee.
Will keep you all posted about the results
Big Love H and P x