Saturday, 25 April 2009

Plague and pestilence.....

I have spent some lovely, long afternoons this week with Paul and the kids. Kitty seems to have broken through the ‘no eyebrow’ alarm barrier and I think, has got more used to daddy looking a bit different. She has been lounging on his lap watching cbeebies and eating crisps and today she stroked his head asked about his hair. Cassidy seems not to care at all about Paul’s physical difference and he sat with Paul today and they constructed a toy he bought at boot fair this morning and things seemed as ordinary as they can be. God, what a difference being in UCH makes to the whole experience. I just can’t imagine having the ability to have almost normal family moments like this if he was still in Whipps X.

As predicted by the Docs he has not felt as sick as the last time – in fact the moments of nausea are fleeting so far. He will be neutropenic again by around next wed so I will have to cram a few visits in before then. His mood is good and the positive news has given him the boost we hoped for.

So on top of everything like; he is good at answering questions, making roast potatoes, making me laugh, mowing the lawn, doing the lottery, pushing swings, there is another reason he HAS to come home: I’m not very good at pest control. We have mice, moths and the bloody ants are taking over. They have discovered the kitchen and are turning up in random places like out of my purse in supermarkets because they have obviously been hiding in my handbag eating crumbs. It’s not a good look at the checkout I can assure you. I have even taken a couple in to visit Paul too, much to his amusement/alarm/incredulity.

The moths always turn up at this time of year – they seem to peak at the same time the first lavender starts to flower. I have always thought there has to be a link to this and the fact that Lavender is supposedly a moth deterrent, but I am going off on a tangent. Paul has always been the driving force behind the annihilation of all pests he would deal with mice with no mercy - killing them with one flick of a newspaper ‘karate kid’ style, poisoning ants before they took up residence and spatting moths with gusto. And while I have even killed a couple of mice myself I am not keeping on top of the whole exterminator thing - I know this because, as I type, I have seen two mice brazenly scamper across the floor.

Do you think there is significance in the fact that a cat has been sitting outside my conservatory door for three nights in a row just staring in? Do you think it can sense the mice within? Can it see mice that I cannot with its extra sensitive cat eyes and is happily sitting outside my window watching cat TV? Or is his presence just a cat way of trying to befriend me and make me give it food? Whatever the reason it’s a bit disconcerting.

So has anyone got any tips on pest control?.........

Tuesday, 21 April 2009


Just a short one tonight to let you know that we got the results of the scan through tonight and they show a ‘good partial remission’. In other words it looks like the chemo is doing its job inside and out. Apparently his glands have reduced to between 50 and 75% which is utterly brilliant!

It’s very hard to not want to punch the air in joy but I’m torn between utter elation and the need to keep a rational head on my shoulders. It looks good, but we have been in this position before and it’s snuck back in the back door, so I do have to keep some sort of perspective. “Don’t ride the rollercoaster, don’t ride the rollercoaster, don’t ride the rollercoaster…..”

He starts the heavy chemo again tomorrow – the one that made him feel like a sick bucket last time, but they said s he has less disease to fight now it might make it a bit easier.

Anyway watch this space and keep up the chanting – Paul is really convinced it’s helping that you are all thinking about him and egging him on and I do too xxxx

Monday, 20 April 2009

Plans and scans.

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

Monday, 13 April 2009

Happy easter

I hope everyone has had a satisfactory Easter wit lots of chocolate. I have to admit my dining room table is groaning with a ton of the brown stuff – there’s so much I can safely nibble away in the knowledge that the kids will not notice me snaffling away at it. Actually in some crazy attempt to freak me out, Cass and Kits have hardly touched any chocolate at all. It’s quite odd, It’s like there is so much of it hanging around they can’t see it anymore, it’s like wallpaper. It makes me wonder if shouldn’t just liberally sprinkle sweets and chocolate around the house on a regular basis. But I know if I did it would backfire like most of those reverse psychology tricks you try and pull on your kids……

It’s been hard not seeing my boy for the Easter. It’s the first bank holiday of the year and we usually throw ourselves into it with enthusiasm by consuming too much food and wine etc. So I have I’ve been keeping myself occupied by doing DIY and sorting out Cassidy and Kitty’s room ready for them, to move in to. Currently we are living like squirrels in one nest; all piled into my room so I’m working to extracting the little uns ready for when Paul comes home. I have to admit though that it’s been really comforting having them nearby and listening to them sighing and snoring and sniffling in to night. But a lot of things that used to keep me awake now soothe me to sleep and vice versa…..

I saw Paul in the flesh last Thursday for the last time before he went neutropenic Since then I have done a few food and pyjama drops and scuttled past his room. It’s been so hard not to peep in but I think that would make it worse somehow. Hopefully he should be building up his cell count by the end of this week so I can finally see him. He’s doing really well, well really well in a chemo patient kind of way. He’s not horribly sick or anything and he’s building up his physical stamina slowly. It’s amazing how a couple of weeks in ITU has diminished his ability to get around in a way that we all take for granted. Sometimes I call him and he’s hard at work on the exercise bike or has had a walk up and down the ward. It sounds small but these are such big steps for Paul.

I think he officially looks like a cancer patient now because his eyebrows have finally dropped off much to Cassidy’s delight! He’s been asking for photos…....And of course he is still, if not more, in full steam ahead mode. He was seen by a palliative doctor the other day (I guess an unofficial councillor or something) and they seemed pleased with his general out look and said he seemed to be coping well and Paul said “I’m not coping – coping means accepting the status quo – I’m fighting” and it made me think about how I use certain words to describe my state of mind. It’s true – when I think about it – coping means treading water and as Wendy said, it’s a passive word and not at all representative of our situation. So for the first time I can say with pride and at the top of my voice “I am NOT coping!!!”….

So we are still in that stage where no news is good news really. Just waiting to see if this round of chemo does what it’s supposed to do. I guess we will know in the next week or so. Cass and I have been doing our chants every night without fail. He has a very regimented and systematic routine of lymphocyte busting which we go through at bedtime, which includes: Fire balls, anti toxic spray, bombs, dough-balls, distracters, giant balls and then a lot of kisses. They all have their own little hand actions to go with them too.

So keep chanting people even if the chocolate has made you sluggish. And remember the next time someone tells you you are not coping – smile and feel proud!......

Kisses H and P xxxxxxx

Monday, 6 April 2009

Spring Chemo

Today dawned bright and sunny with the whisper of summer around the corner. Paul’s been asking about our herb garden we planted last year and everything is bursting forth. Big sprigs of giant parsley, spicy cress leaves and baby mint, the bay tree has reached gigantic proportions and the chives are incubating their purple flowers. I looked out of Cassidy’s bedroom window this morning and imagined seeing Paul, stripped to the waist, digging up potatoes or mowing the lawn or scrubbing the barbeque ready for a feast, sipping on a beer and playing football with Cass. As the garden starts to become a place we can play in again, it reminds me of how much I miss him and also of how much we have to look forward to. I lay in his hospital bed with him yesterday and we talked about all manner of things as if we were on the sofa at home. He has big plans for the shed in his convalescence – he wants to pull it down and put up a greenhouse and small potting shed in it’s place. I love the fact he is setting plans for the summer and I would not put it past Paul to be ready and fit for pushing a mower by then – such is his incredible stamina and self healing power.

He started the new chemo last Thurs evening, It’s called IVAX I think. We won’t know much in terms of it’s effects for a week or so but so far he doesn’t feel too rotten. He was worried that this was a sign it wasn’t working (no pain no gain or something) but he has been reassured that his lack of nausea doesn’t mean it ineffective. He’s been moved to a great room with a south facing view – you know the kind that makes you love London so much. It’s got the Houses of Parliament, the ‘Gherkin’, the ‘Wheel’, St Paul’s etc It’s quite big as well ad has a little sofa so it’s quite comfortable.

The consultant was in last Fri and he was more positive than he has been. Paul thinks they feed a bit off his own positive attitude and the most solemn Doc has lightened up considerably. Why he couldn’t have been more cheery from the start I don’t know, but I suppose they like to keep you on your toes…….Anyway they said that even if this Chemo doesn’t work there are other options. Paul asked about trials of new drugs which they said they would look into and they will be taking blood from both sisters in case they need to do a bone marrow transplant. But it’s very much – see how this round goes and make the decisions then.

He’ll be neutropenic from tomorrow so I’m going to do a PJ and food drop, then I won’t go in till his White Cell count is up again, which could take up to 2 weeks. It’s going to be very tough not seeing him for such a long time, but it’s for the best as it’s not worth the risk of giving him an infection just for a sneaky peek. There will be plenty of time for kissin’ and stuff when he gets better…….

It was an up and down week last week and I hope this one brings more stability emotion wise. I even broke my gambling fast and bought a scratch card in an act of almost pointless defiance. I actually won something for the first time - £6.00! I was pleased till I noticed that my win entailed finding a 6 and a 6 and a 6 and then I just freaked out about the devil nature of the money. Then I thought it must be a sign that I should really not be doing scratch cards at all and decided to give the card to the down and out that I usually see outside Leytonstone tube but he wasn’t there and there were no other beggars to choose from so I’m still walking around with jinxed money in my back pocket. What should I do with it? I thought about cashing it in and donating it to Macmillan but then I thought it might jinx the whole charity….help what should I do? I am honestly not normally this superstitious…….

Yawn – I’m up late again – but it’s the Easter hols so I have no uniforms to iron or packed lunches to make and you can officially give your kids cake for breakfast during holidays so all is good……..

Night, night

P.S Aren't lambs born in spring?.........Do you think I want to, quite literally, consume the very essence of rebirth or something? I think my lamb consumption obssession has many levels - any one want to drink a bottle of red wine with me and discuss?

Thursday, 2 April 2009

Odds are for bods

It’s been a strange week, an up and down week, a week where I have aged literally, spiritually and metaphysically. .........

Paul had one of those visits from the doctors where they do a bit of solemn faced straight talking. They basically said the fact his lymph nodes were up again was a bad sign and might mean that the Codox hasn’t worked or that the Lymphoma is more aggressive that they thought. Either way his prognosis is worse because of this. To throw into the mix is the fact that his lungs are pretty tattered and torn so, administering the Chemo with the likelihood that he will get some sort of infection because of his lowered immunity, is a massive risk. So basically the cure could be the killer. Talk about a rock and a hard place. Paul said it was like a funeral procession when the docs filed in. I realise that it’s the first time for Paul where he has had the experience of being given that kind of news. Each time I have been told to expect the worst, or that there is no way Paul will make it out of ITU, he has been sedated so he hasn’t had to actually hear the words. So that knocked him for six for a bit.

But you know what? It took him all of about 8 hours to get over the shock and send me a feisty text telling me the cancer can go fuck itself! I was busy self medicating with red wine and Jack Daniels when I got the message from Paul that we were back in business and that was the best birthday present I could have asked for.

And yesterday we had a big cry and then a big sigh and then a giggle and a cuddle and decided that – prognosis? Shmognosis….. this changes nothing at all as far as me and Paul are concerned. The plan is still the same – Paul gets better – we live happily ever after and at some point manage to get to the beach. Paul said that odds only matter if, when it comes to crunch, you fall on the wrong side of them and he is so right. How many stories have you heard where people are given a month to live and 20 years later they are happy smoking fags and sipping margheritas in Costa fucking Rica?

A wonderful Professor ( Montgomery that gave us the second opinion when Paul was in Whipps) once said to me “We are not prophets we are doctors” and he said this in response to someone telling me categorically that Paul would not pull through. That was 5 months agao and those words have stuck with me. They would not be treating him if there was no hope and without hope we may as well give up – and that IS NOT going to happen. OH I WOULD WRITE ALL OF THIS IN UPPER CASE JUST TO GET MY POINT ACROSS IF IT WASN’T SO ANNOYING!

So Paul would like you all to focus on him not just beating the cancer but on not getting an infection when he is neutropenic (this is when he has no white blood cells and no immune system). So we have to chant about that specifically please. He has started the Chemo tonight so it’s game on – restart the positive vibes in full force. Sometimes it’s good to get a big kick up the arse like this because it’s a call to action. Chant, pray, hum, jog, smile, laugh, drink, toast, dance, skip, sing, sleep, sweep, play, type, eat. Whatever you are doing for the next month or so, sneak a thought and a chant for Paul in there, even when you are on the loo - ‘Poo for Paul’ – that’s a slogan. Oh Dear I think many of you will no longer be able to go to the toilet with out thinking of Paul. Tee Hee! Not sure if that’s a good thing or a bad thing….

Anyway keep the faith people – me and Paul most certainly are.


P.S. He’s eaten the mustard seeds so we have the Dalai Lama on side.

P.P.S. Have not eaten any lamb yet but have licked a spoon when making a shepherd’s pie for Cass – does that count?

P.P. P.S. Cass won a prize for making an Easter bonnet in a parade this afternoon – was very proud and so was Paul.