Monday 30 March 2009

Life, love, lamb........

Blimey it’s been a week since I’ve written anything – that’s very remiss of me. Well things seem to be galloping along at a fast pace. Paul has a habit of doing this ‘recovery at a miraculous rate’ thing. One minute it seems that we are stuck in a cycle of slowly bit surely, then all of a sudden he’s sitting drinking soup and generally kicking ass!

He moved out of ITU for the first time tonight and is now on the 16th floor hurrah! That’s such a massive step physically and mentally. He’s still weak and thin and all the things you might expect from someone who has been through Chemo and on a ventilator for the last two weeks but his spirit is strong. Up till now it’s been more of a silent, determined fight, ‘focus, focus, focus’ which is still the case except, he’s just more vocal now. That’s probably also down to the tracheostomy being taken out – stupid Hannah! I guess what I’m trying to express is that I feel more involved with the fight now because we can communicate whereas before it’s Paul in a solitary battle. And it feels good to be involved, even if it’s in little ways; foot rubs, bringing the paper, waffling on about domestic dreariness and familial things. Right now all the little things that are taken for granted are like precious metal.

And he’s been doing an amazing job of fixing himself up. It’s awesome because sometimes he knows more about his body and how he needs to be treated, than the doc’s do. He had got to the point on the ventilator where it seemed it was working against rather than for him so he just took the executive decision to move on and the doctors agreed. And that seems to be the propulsion in terms of progression that has got him to be where he is today.

In terms of the Chemo we did think that he would start the end of the week but I have just heard from the front line that he will be starting the next round tomorrow as the nodes are starting to flare up again very slightly so time to knock them on the head again. Paul’s motto is ‘full steam ahead’ and although he isn’t looking forward to the nastiness of the medication he just wants to steamroller the cancer before it gets a chance to fuck him up again. A very healthy attitude I would say.

Moving on to my own unhealthy attitude to pointless gambling - I have kicked the scratch card obsession – mainly because Paul gave me one of those looks when I told him that said ’ foolish’ in big neon letters. But subsequently I have cultivated a new one that has been growing for a few weeks now and is more palatable to Paul scratchcards. I am obsessed with the idea of eating lamb! For those of you that don't know I have been a vegetarian for the last 22 years but I am suddenly quite struck with the idea of consuming a beautifullyl roasted, tender and moist baby sheep (that’s what the are aren’t they?). I’m not in the least bit interested in bacon sandwiches or sirloin, chicken breasts or t-bone – I want LAMB – or at least I think I do. My lovely friend Fran and I have discussed this and we think it might be that I associate roast lamb with Paul and the whole homely Sunday lunch, family togetherness sort of thing so it’s more that, than a hankering after actual flesh, but I’m not sure…….I told Paul that if he gets better then I’m going to become a Lambetarian which he quite liked – will let you know if I live up to the title……….

So there we have it; life, love and lamb or; love life and love lamb or; lambs love life - whatever your fancy I know that Paul loves both life and lamb so that's good enough or me. Oh dear I'm losing it - but then I'm a minute from turning 36 so I think that's allowed

H and P xxxxxxxxx

Monday 23 March 2009

slowly but surely

It’s been a good few days. Paul is steadily making progress and the Doctors are really pleased with the way he is fighting back. I think they are genuinely amazed that one minute he is critical and the next he is sitting up in a chair. Of course I have seen it all before!.....

The plan is still to rest him at night but push him a little in the day by reducing the pressure support from the ventilator to exercise his lungs more. He is also able to speak occasionally when they deflate the cuff in his tracheostomy – not entirely sure what a cuff actually is but when it’s up (filled with air) he can’t talk and when they it’s down he can. The Doc was tickled to hear he had a Scottish accent and it’s lovely to hear him talk again. The Chemo docs are also really pleased with his progress. His White Cell count is back up to normal again and his glands are still down and the Lymphoma rash that covered his body is much better. They said they could start the second cycle of Codox –M as soon as he is off the ventilator but that there was no rush. It’s always such a relief when doctors stop talking urgencies and are more relaxed in their terminology. Here are a few ways to tell a Doctor has stopped considering the mortality of your loved one as a distinct possibility:

They stop saying if and start saying when.

The look of serious gravity on their faces is replaced with occasional gaiety (In fact some Doctor’s don’t even look like the same person when they are in Good Doc mode).

They progress from no physical contact whatsoever (when your loved one is seriously ill), to laying a hand gently on your shoulder or arm (when your loved one looks like they might make a recovery) to patting you on the back in a jolly manner (when your loved one is sitting up reading the Guardian).

They actually smile.

We have seen a lot of smiles on faces of late so that really can’t be bad can it?

As far as how he is in himself – which I have been asked again by a few people - it’s complicated. He’s obviously pleased with his progress but it’s hard to get excited about anything when you are that knackered and poorly. I can really understand his tunnel vision and complete focus on getting better – I’m not sure I would have the same level of mental discipline and it truly is awe inspiring. I have said to him I have no idea how hard this must be for him. I can try to imagine but I’m sure it doesn’t come close. I have bleated on for years about how tough labour is but even childbirth seems like a broken nail compared to what he’s going through. But his mood has definitely lightened over the last few days. He’s got his i-pod and he’s got the radio so he can listen to the footie. He slept very well last night for the first time since – well since I can remember and he’s looking forward to the possibility of getting out of ITU in a week or so and back up to the 13th floor.

He also might be able to see the kids soon which will be amazing. I took a picture of Paul for them on my phone and Cass was quite intrigued by the lack of hair and I said “But it’s not that different to how he normally looks and Cass said “but he’s more shiny” so I told him it’s ok because his hair will grow back soon and he started wailing (which I didn’t expect) and he explained through his sobs that he “Wants to see Daddy’s head when it’s all shiny!”. Bless!

Yawn - have to go and make 30 pairs of bunny ears now - cripes that's one way of taking my mind off things........

H and Pxxxxxx

Wednesday 18 March 2009

small steps....

Just a short one tonight honest!

Paul is making improvements. His chest is getting better, he is requiring less support from the ventilator but he’s still a little way off from being off it completely. They are weaning him off slowly which I’m comfortable with, rather than any sudden movements. So there will be some slow, uneventful days ahead of us hopefully where he just recuperates as much as he can. Cancer wise we won’t really know how effective the Chemo has been till they scan him after 21 days (in about a week and a half) but it seems to be going in the right direction.

He tried sitting out in a chair today which was tough for him but he’s so focused it’s unbelievable. In fact it’s a lovely thing to be newly inspired and in awe of a part of someone’s personality, when you have been with them for 13 years. Just when you thought you knew everything they go and pull some incredible trait out of a bag. Paul’s has been, not just his resilience (I always knew he was made from steel girders), but his unrelenting focus on his goal of breathing and getting better. I’ve been fussing around him trying to hook up a DVD player or some music just to while away a bit of time but he looks at me as if I am mad! He says he will do all that when he gets back up to the 13th floor. He just wants to concentrate on getting out of ITU – He does read the Guardian though – in fact the day he asked for the paper was a good one for me!

Well that’s it - time for bed – night night x

Monday 16 March 2009

Rollercoasters, mustard seeds and Mr T.

It’s been a strange few days with about as many ups and downs as there could be, squeezed into them. Things are relatively stable at present. He had another Tracheotomy done on Friday, which bought with it a few problems as there seemed to be some kind of blockage and he struggled for breath a few times but that’s been sorted out. He’s been bought out of the sedation now almost entirely and only being put under at night so he can sleep. He was utterly exhausted to day as Intensive care is just not conducive to rest and relaxation with all the machines beeping and general activity around him, doctors coming and going, blood to take , medicines to administer, alarms going off and ventilators hissing – like trying to take a nap in the concourse at Liverpool Street station.. But the upshot is that, although he may not be feeling brilliant, he is improving. There is still a lot of gunk on his chest but it’s slowly coming up. One of the physiotherapists was helping him cough stuff up today and she sort of jiggled his chest – really rudimentary stuff but clearly effective and I suppose the human version of the Oscillator – Ha see we don’t need Oscar at all!

As far a the Chemo goes his glands are still smaller and in some places imperceptible and his White blood cells have started to go up again. The Chemo kills the cells – cancerous ones and healthy ones and it’s up to Paul’s body to generate fresh ones which he seems to be doing, so things are moving in the right direction. I suppose the pressing thing is his lungs and him being able to support himself so that he can get back up to the Haematology ward where things are calmer….I make it sound like the simplest thing in the world but I suppose to Paul the distance between the 3rd and the 13th floor must feel infinitely greater than 10 flights of stairs.

Still we had a wonderful injection of positive energy on Saturday from Tanya. Her children go to the Dharma school in Brighton which is a Buddhist school. Her son Noah has chanted furiously in the past for Paul and last week they were paid a visit from some eminent monks, one of which had never stepped foot out of Thailand. He bought with him some mustard seeds that have been blessed with good health and long life not only by him but he had also walked 40 miles to have then blessed by the Dalai Lama! There was a meeting between the monks to decide who should be given the seeds and they decided – yes you can guess – that Paul should be the worthy recipient. How utterly cool is that? I told Paul and I have not seen his eyes light up and face crease with such happiness in a long time. Paul has to eat these seeds apparently – I have to find out if I can cook them or if that will destroy the goodness – not that I should imagine cooking magic Buddhist dust is like boiling alcohol or something – but would hate to risk it.

Moving on from Buddhists to the A-Team, I also found out recently that BA Barracus has fought a rare and aggressive form of Lymphoma as well. It took him 6 years but he did it. Paul was tickled by this as well.

Well I hope you are all harvesting the sunshine and turning it into positive vibes. Cass and Kits and I sat on the doorstep yesterday soaking up the warmth and Cassidy asked me “When I’m a grown up, will Paul still be in hospital?” to which I said “no, he’ll be home soon”. But it made me realise that his idea of time and how long daddy has been away must feel like forever and when I think about it, it seems like an age to me as well. Autumn was waning when he got sick, winter came, Christmas passed and January sloped by, snow fell, crocuses bloomed and died and now spring is so close we can smell it and there was even a hint of summer in the warm rays yesterday…….Lets just hope the cancer passes as quickly as the seasons…….

Thursday 12 March 2009

Who's Oscar?

What day is this where are we? How many days has it been since I last wrote? I feel like I am caught in the parallel universe that is ITU world........Over the last couple of days things have been a bit of a rollercoaster as is the way with intensive care. There is only one advantage to having been through this before and that’s knowing the beast a little. There’s a lot of medical detail to include here as his treatment is quite complex now so I will keep it as brief as I can.

He's currently stable and although he's having a lot of oxygen pumped in to him he is essentially breathing for himself. If you imagine that yesterday the ventilator was literally doing all the work, pumping his lungs in and out in a very regimental fashion and today he is doing that leg work for himself it's pretty good. I have learnt from the last time that these little things are positive signs, it's signs of his body taking charge. There’s a long way to go and the Doc’s are very wary of being too optimistic but he's making progress. When I went in today they had pulled back on the sedation quite a bit so he was responding to me and doing thumbs up. He’s uncomfortable and I know he’s pissed of at being in this position again but he’s a true stoic Scotsman. I find it amazing that despite the wires and the machines and the drugs and the discomfort you still get the sense that he doesn’t want to put anyone out, he still says “I’m fine, I’m fine”. I’m not sure I could ever be as brave.

As far as the Chemo goes the Haematology doc said (the unfeasibly pretty one from before) that although his treatment will have to be interrupted, it’s not the end of the world. The drugs are called Codox – M (sounds like a sci- fi thriller title to me), he’s had the Codox bit already and the ‘M’ part should have been administered tomorrow but with Chemo the bulk of the drugs are given at the beginning of a cycle anyway so the fact that he misses this ‘M’ part is apparently not brilliant but not completely detrimental to the overall picture. They also said that his nodes in his groin have gone down significantly which is good news, considering they were as big as Kitty’s head a week ago!I was asked if I wanted to put Paul up for the chance to be included into a clinical trial for a super duper oscillating ventilator (called Oscar). Not as scary as it sounds as there was really no risk to him being involved but being chosen to go into the trial is completely random (otherwise the findings are invalid) so after putting his name into the hat as it were, we were told he would not be involved which is a bit bloody frustrating. When you know there is a hot little ventilator down the hall with a cool name but you can't access it - it sucks! But I have to console myself with the fact that he got through the last period in intensive care without the help of sodding Oscar - I mean, who’s Oscar anyway!

Every time I travel up there, as I am nearing Tottenham Court Road the butterflies start dancing and by the time I jump off the bus at to Warren street they are doing a bloody Riverdance. But as soon as I am in the room with him there’s just the merest tap dance in my heart. When he was intubated again I will admit to being quite despondent at times but, since yesterday, I have felt more resolved that this is truly just a setback. Yesterday one of the doctors was talking to me and she was emphasising the seriousness of his condition and I was nodding gravely; but in my head I was saying (Yeah – Whatever!). I had to admit to her that, though I do not have a medical eye, as far as I can see he’s in much better shape than I have seen him before and whether it’s blind optimism or not , it’s all we have got most of the time.

I’m so tired I’m nodding off between sentences – never done that at a keyboard before – will write more tomorrow

H and P xxxxxx

Tuesday 10 March 2009

Setbacks

Well I don’t have the best news for you all. Paul was transferred to the Intensive Care unit of UCH yesterday. He had been struggling a bit with his breathing and had been requiring more oxygen – more than they can give on the Haematology ward. That coupled with the severe sickness and therefore lack of sleep meant he was just too knackered to keep going. Anyway I got a call at about 1 AM and they told me that Paul had asked them to call me and tell me that they would probably intubate him by the morning. This means that they sedate him by pumping him full of morphine and a paralysis drug, put a tube into his lungs and inflate them artificially. This is exactly what happened to him when he was admitted to the ICU at Whipps in November and for those of you that remember the aftermath it was really horrible for him and I know he must be pissed off it’s happened again.

But the upshot is he needs the support and what amazing support it is. The doctors today said that the CT scan showed signs of infection in the lungs which was pretty much inevitable because of his lowered immunity. I guess that, because his lungs were in a bit of a shambolic state, he is not so well equipped to deal with such an infection. So they are giving him a broad spectrum of antibiotics and just monitoring him .I won’t go into all the details of saturation levels etc (believe me I’m almost a bloody expert on these things now) but he has improved over the day – something that didn’t happen so quickly at Whipps. It’s strange because, although it was horrible going up there today on the bus and I had sick butterflies careering around my tummy throughout the journey, when I got there it felt so familiar that I soon relaxed. When I saw my Paulie lying there it seemed ok, it’s still Paulie, he’s still here and he’s still fighting……….

It’s not the best news but let me reassure you that things have been more desperate than this. His life has been more on a knife edge. When one of the doctors said to me today “I don’t want to labour a point but I you have to know I sick he is” I did say “ Well in all honesty, I have seen him worse!”

I’ve been thinking about the chant. When I went in today it felt like I was being fast tracked in a time machine to this time last November when he was lying in the ICU unit of Whipps. The same machines bleeping , the same wires pumping stuff in, taking stuff out, the same figures, numbers, percentages ever changing on the screens. And one of things I found myself saying almost automatically was ‘Miraculous Recovery’. I used to whisper that over and over to him, till I was almost speaking in tongues, when he was sick before. So I’m wondering if that ought to be the chant now. It covers it all doesn’t it? The lung thing, the cancer thing the everything really.

I’m also wondering if I should let you in on something else as well….Oh ok it feels personal but I guess when you start a blog you may as well embrace the blogging way. Since Paul has been ill I have been saying that I have this vision of me him Cass and Kits on a beach somewhere, I don’t know where – it might be Thailand but is more likely Margate. But we are all together and there’s a lazy, hazy summer breeze and the sea is smacking the shore and our knees and the sand is crunching between our toes and our teeth and there’s ice cream and chips and sandcastles and tea and everything is ok. We have been fantasising about that moment so I’m thinking that perhaps when you are saying ‘miraculous recovery’ you can think of a beach too. Your own beach or ours or even just a sea breeze but it might help to focus the white light………

It’s not great news but it’s the not the worst. Keep chanting and keep believeing that the stubborn Scotsman will get better.

Wll keep you posted
H and P xxxxxxxxxxx

Sunday 8 March 2009

Think of a mantra.....

What a day; full of sunshine, rain, fluffy clouds, lashing wind, spring breezes, pale blue and leaden thunderous skies. A bit like a meteorological analogy of my emotional state!

I think Paul’s skies are a mainly grey and oppressive at the moment. The Chemo is so horrible for him and making him feel so utterly sick. They warn you and give you leaflets to read and tell you it’s inevitable but it doesn’t help when he’s in the middle of it. One of the nurses told us something interesting that she tells her cancer patients when they have gone off food. She said you have to approach it the way you approach taking your medicine; as something you simply have to do. To be honest though, when someone gives you a pep talk like that, especially when you feel that shit, it must be really annoying. She meant well but I’m surprised he didn’t throw his power shake at her.

He was a little better when I went in today though so hopefully there will be moments when he won’t feel so bad. He does have a temperature though and a possible infection of some sort which is almost inevitable considering the Chemo wipes out his immune system. Which is why we both think that it would be best not for him to have any more visits from now on. I know lots of you have been wondering about visitation and it’s just not worth the risk of giving him something that might really set his recovery back. Coupled with the sickness he’s just not up for it right now. I will off course let you all know when he has the all clear

In the meantime I have been thinking that we need a new chant. There was something really powerful and unifying about knowing you were all at some point or another (while jogging, ironing, making tea and during important work meetings so I am told) saying the same mantra. I thought I would throw it open to the floor for suggestions as I can’t think of a really good one that encompasses all things. It needs to be anti Cancer, anti sickness and full of that white light stuff, or something simple like ‘Kaboom’ in the words of Cassidy.

Idon’t know but you can leave comments on this blog so if you have any ideas and let's get one on the go.....


H and P x

Friday 6 March 2009

No Spine No Brain!!!!!

Well you all should all be jolly pleased with yourselves because your no brainer of a chant has worked – he was told today that it hasn’t reached his nervous system hooray. So ‘No spine and No brain’!

It’s such good news and brilliant to have a positive for a change. It’s really, really what Paul needs to boost his confidence and really, really what we all need to hear too, to boost our own. It feels a little like I’ve won the lottery - without the wads of cash obviously. Actually on the subject of pointless gambling, I have discovered a secret (not so secret now) pleasure in scratch cards which has increased with Paul’s illness. I think I feel that my odds of winning have increased just by dint of him being ill; like the Gods of bad luck have taken their eyes off the Mackey ball because they think they’ve got it covered with this whole cancer thing. Actually this is the first time I have seen my skewed logic in black and white and it’s just a bit mad and financially ludicrous really. So no one tell Paul ok?........

He had another lumber puncture today just to boost the chemo in his spine. The Doc said yesterday that the success rate in this drug preventing it spreading is really good so, now we know it’s not there, we can focus on blocking it. ‘Pow’, ‘Kaboom’, ‘Kill Kill’ as Kitty would say (guess where she’s learnt that from). We just have to hope that this latest round of drugs has a more significant impact than the last. It’s not that the last lot failed it’s just they want to see more impact.

As far as how Paul feels, I think that today is the worst day so far for him and the Chemo is really living up to it’s reputation. He has been feeling very nauseous and a bit glum – even my shepherd’s pie didn’t cheer him up. It’s a horrible irony that a person that doesn’t feel that ill is made to feel so sick by the very thing that’s supposed to make him feel better. But it’s for the greater good and he’s the first person to say that, it’s just pretty impossible for him to feel the benefit of it for the time being.

But today is a good day, a positive day. Not just because of the result but because I just woke up and felt superhuman for Paul. Not all days are like that. Sometimes it seems there are dark messages hidden in everything. From sodding predictive texting spelling out ‘demise’ instead of ‘Denise’ to ominous Love Hearts in a packet of sweets saying ‘Bye Bye’; to not being able to disentangle Paul’s struggle with Jade Goody’s because it’s everywhere. But then I wake up and the sun is shining, spring is only a hop away and I can look forward to the time when he comes home. I hope that there are days when you all wake up and feel super human for him too. It might be in the flutter of spring petal, the way the morning sun winks at you through a chink in a curtain or a patch of blue in a grisly sky. Whatever makes your heart skip with optimism – think of Paul in that moment.

Shit it’s late – can you all chant for my children sleeping in too.....


Kisses H and P xxxxx

Wednesday 4 March 2009

4th March

Paul and I have decided that it might be best to start a blog as it's quite hard to include extra people when you have started a thread on Facebook and anyway not everyone is actually on Facebook. I was a little concerned about the full public nature of this but Paul said "Fuck it what have we got to hide" and I have to agree. The more people thinking of Paul the better.....

So he has started a second round of Chemo - this time with different drugs. The first lot he was given, amusingly called CHOP ( kept thinking of Cassidy karate chopping Lymphocytes!) wasn't working as effectively as they would like. Although it has shrunk some of his glands and his chest is infinitely better, they have decided to diversify. I think the doc's know pretty quickly if a particular drug is working or not and if they aren't happy they ditch it and move on. This next lot is apparently a bit more hardcore in terms of side effects and he is going to feel pretty shitty soon. It was scheduled to start tomorrow but they had the drugs ready so they started tonight. He's also had a lumber puncture done today where they administer some preventative chemo into his spine to stop it spreading there and to his brain. They will also take a sample to find out if it has got in there already. In fact Paul has asked a special request of you all to focus on a negative result for that. He really wants to hear some good news and says if you can all focus your chanting on "No Spine, No Brain" (sounds a bit insulting but he doesn't mind!) that would be great........

So it's full steam ahead again. The consultant today was lovely - I don't usually get the chance to be there when the doc's go round but I was there early today and she was really upbeat and encouraging, she said there was no evidence to suggest it had spread so not to worry. On top of being really nice she was also incredibly pretty, petite and ridiculously young. I found myself drifting off as she was talking about complex drugs and pondering how someone with such a stressful job can have NO wrinkles at all. Hence the reason why I can't tell you the name of the latest medicine! Will find out and report back in case there are any fanatical googler's among you.

I have been asked many times how Paul is within himself so I might have a go at answering this although even I will never fully understand how it is to be him right now.

He is grumpy (what's new) bored and fed up with the shitty food (no surprise) and desperate to come home. But also upbeat and funny and charming the pants off the nurses (male and female) .You can see they love coming in to see him. The nurse that takes his blood every morning, the woman that sweeps the floors, the octogenarian that brings round the 'Metro' every day, the doctor's, the consultants the woman that makes his bed - he treats them all with the same reverence and good manners. I have always loved this about Paul and it's interesting to see the effect it has on those around him. Sometimes you can see he's overwhelmed by the enormity of this but mostly he talks about it as though he's got a few hard shifts of work ahead of him. Like it's 'no bother' as he would say. The idea of it spreading to his brain and spine unnerved him for a bit but if we all chant hard enough maybe he won't have to worry about that. I'm going almost everyday with supplies; I am determined to help with the food situation and hopefully the kids will get to see him for a bit over the weekend if their perpetual colds clear up. On top of that he's got a good view up there on the 13th floor and his room points east so we wave from time to time........

We are still in the thick of it, the utter, sticky, thick of it but we have been in a worse place before. It has been more desperate before. Paul said it's strange because he actually doesn't feel that sick and that it's strange to think his body is fighting something really horrible but ultimately he doesn't feel that bad. I think that’s a good sign.

Must go and finish constructing a half eaten book out of a cereal box for Cassidy's dress up day in school tomorrow. They have to be a favourite character from a book and he had chosen 'The Incredible Book Eating Boy' - why he couldn't have been Peter Pan or Captain Hook or something you could just buy from a shop I don't know..........Thanks for all the support guys, Paul and I are sending our love to you all tooH and P xxxxxxx

25.02.09

Firstly thank you for the brilliant and touching response to my email! Really, your support and words are enough to keep me going and in turn Paul……

Just thought I would give you a quick update. The doctors did an X-Ray today and said his lungs looked slightly better which would indicate that the treatment might be working. Notice the vagueness of the statement they use, which is understandable because it is early days. But the flicker of a positive is all I need to jump astride my horse and gallop off into the sunset!

Seriously though, it is early days. The Chemo is administered in 3 week cycles and the true test occurs around day 10 of the cycle when his immune system will be zero. They will then see if the cells begin to build themselves up again. This is apparently the key to the success. I have to say that I haven’t yet read the booklet they give you on the ins and outs of Chemo as it terrified me a bit but my understanding is, that if this round of drugs doesn’t work they can and will try others.

In the mean time the fact that there is a positive effect already means that we can all have something extra to focus on when we are pouring in our good vibes to him (Emma that image of you bathing him in white light was brilliant and one I did quite a lot when he was in ICU last time and one I shall take up again). It’s a small step but an important one to him and us. Maybe we can focus on pure light and building cells like some crazed evangelical bob the builder. Actually Cass and I have been blasting his lymphocytes every night, he’s turned it into a kind of arcade game where he throws fiery balls of anti toxins at Paul and blasts them with ‘Kapows’ and ‘Kabooms’!.....quite cathartic actually……..

While I am on the subject of Cass I will demonstrate one very good reason why Paul has to get better. Namely that there is no way I can be the person to answer this boys incessant questions. These were fired at me in the toilet in the 5 mins it took Cass to have a poo:

-Is God the cleverest person in the whole world?
-Why do people think that God made everything?
-Why do women have babies and men don’t?
-Are there tiny particles inside an Atom? I told him that there are protons and neurons and Electrons. (not even sure if that’s right)
- Why are protons purple?
-Do eyeballs have reflections?

Arrrhghhhh!!!!Paul really, really has to get back soon – otherwise I am in trouble. Either that or we get Prof Montgomery in to baby-sit a bit……….

Love H ad P x

Here goes......

24.02.09

It's taken a lot of staring at the computer screen and then getting up and walking away before writing this but I do realise there are some people to whom this news will be new so I have to take the plunge. Also Paul wants me to do this, so here goes......

Last Thursday evening Paul was diagnosed (finally) with Lymphoma or to be precise 'Peripheral T-Cell Lymphoma'. In the words of the doctors it is ‘advanced’ and 'aggressive' but it is also highly treatable. He is currently in UCH receiving Chemotherapy, which they started on Saturday. He is in the best hospital with the very best doctors which is such a fucking relief after the Whipps Cross disaster. Basically for those that don’t know, he had been signed off by Haematology dept of Whipps X and told to avoid doctors because his gland problems were 'reactive' (meaning reacting to a virus or infection). Neither Paul nor I were happy with this so we contacted the wonderful Professor Montgomery at UCH (who came and gave us a second opinion when Paul was in intensive care) and he agreed with us and fast tracked a referral to the Haematology dept. The upshot being that within a week and half they had performed a biopsy and given us a diagnosis.

We don't know, of course, whether they would have been able to find anything quicker than Whipps because we don't know when the Lymphoma had really taken hold. And there is a certain amount of luck involved (apparently) with finding the right node. However, what we do know is that if we had taken the advice of Whipps he would not have had much longer to live!

But instead and very luckily, he is currently on the 13 floor of UCH being given the most amazing treatment. He's tired and bored of the institution of hospital, missing his family and friends but being his usual upbeat self, taking the piss and finding the inappropriately funny things in his situation.

We would both appreciate the same amount of positive thoughts being thrown his way. I am sure that they made a difference last time. Whether it's prayers in Norwich cathedral, Buddhist chants (Tanya get Noah back on the case!) or just you’re continued good vibes floating our way. Just increase than ten fold this time.

In terms of going to see him, it is a bit of a no no at the moment because the chemo has smashed his immune system to pieces and he will be very venerable over the next couple of weeks. He's in a private room and I haven't been in since Saturday because I have a cold, which tears me apart but it has to be that way because he has to get better and we don’t want anything to jeopardise that. Ill let you all know when visits are possible.

Paul's stubbornness and intrinsic belief that he is right and his ability to have a bloody answer to everything will get him through this, my ability to wipe bottoms, pack school bags and make really tasty biscuits will get Cass, Kits and me through it too........

Must sign off now - will keep you all posted