You get nothing for two weeks and then I bombard you with entries. I’m like the blogging equivalent of a number 19 bus. This is just a quickie to say I forgot to mention something last night – probably due to the fact that I was on planet love and my mind was fuzzy – oh alright it was also party due to having more than my fair share of red wine too.
Anyway, yesterday I officially became a ‘Lambetarian’. Paul roasted, I feasted and it was goooood. I only had a little as I thought my body might go into shock but it didn’t. I didn’t wake up this morning with chronic stomach ache, nor did I wake with a healthy glow as though the iron had surged to long forgotten territory. I didn’t mourn the past 22 years of abstinence and neither does this feel like a new lifestyle choice. I may or may not eat more – I think I’ll leave that to a random flesh eating urge. But I also think life is way to short to say never, never, never………..
And Paul was pleased x
Monday, 18 May 2009
Sunday, 17 May 2009
love and stuff
What a wretched hole is left when a dreamboat sails away…….I have had a house full of Scotsman and laughter and suddenly things are quiet again. Annoyingly, the very act of him coming home for the weekend has just highlighted all the things I miss so fucking terribly. ……
The deep reverberation of his voice that you can hear from any part of the house, the way he blows his nose like a foghorn, the pants and socks and sundries strewn across the floor, the magic cup of tea that appears on the bedside table, the wine glass that mysteriously fills itself, the pure happiness in my children’s faces.
There are some things that are unquantifiable in a relationship, you know, the stuff about why you love one person and not the next. Why does your heart and body and mind feast on one and not the other? How come you can feel air, the atmosphere change when that person walks in a room? How do you explain the gravitational pull of two people in love? The (sometimes irrational) need to be with that person and that person only? I don’t know, I don’t know. But what I do know is that by taking this away from me I am more desperately in love than ever. I have always been besotted with Paul but now I am bordering psychotic!
I guess the cancer bastard has its uses in that it makes you appreciate what is front of your face. Anyway……Paul is off back to UCH for another round of chemo that will start tomorrow or Tues. It’s a 21 day cycle again so if all goes well he might be able to come home for a week or so again…..
Will keep you posted xxxxx
The deep reverberation of his voice that you can hear from any part of the house, the way he blows his nose like a foghorn, the pants and socks and sundries strewn across the floor, the magic cup of tea that appears on the bedside table, the wine glass that mysteriously fills itself, the pure happiness in my children’s faces.
There are some things that are unquantifiable in a relationship, you know, the stuff about why you love one person and not the next. Why does your heart and body and mind feast on one and not the other? How come you can feel air, the atmosphere change when that person walks in a room? How do you explain the gravitational pull of two people in love? The (sometimes irrational) need to be with that person and that person only? I don’t know, I don’t know. But what I do know is that by taking this away from me I am more desperately in love than ever. I have always been besotted with Paul but now I am bordering psychotic!
I guess the cancer bastard has its uses in that it makes you appreciate what is front of your face. Anyway……Paul is off back to UCH for another round of chemo that will start tomorrow or Tues. It’s a 21 day cycle again so if all goes well he might be able to come home for a week or so again…..
Will keep you posted xxxxx
Saturday, 16 May 2009
Visitations
Forgive me blogfather for I have sinned – it has been over a week since my last blogession. This is due to two overriding factors. The first is that during a DIY I decided to unplug the computer which was dead easy – it’s the putting back that was bloody impossible. I’m so cross with myself for being such a pathetic girl and getting into such a state with all the wires and plugs with all their different little faces and pins and pluggy bits and tiny screws. So my ineptness has meant no internet access for a while – therefore no blog entries.
The second reason for my delayed entry and why I am able to post this for you now, is that I have had a VIP staying with me for the last few days that has been occupying my time somewhat. My Scottish dreamboat came home on Thursday afternoon and is still here!! Yes you read right, be you drunk or tired or just habitually confused the last sentence was a truth – and a beautiful one at that.
Basically there was a moment between the last round of chemo and the next one that will start next week where it was decided he was able to come home for a few days. And so here he is and as I don’t want to waste any of those minutes I will sign off and get back to him. He’s currently lounging on the sofa and I am about to curl up with him. I will fill you in properly but I just wanted to justify my absence and also let you know the amazing news.
Big love – a very contented – H and P xxxxxxxxxx
The second reason for my delayed entry and why I am able to post this for you now, is that I have had a VIP staying with me for the last few days that has been occupying my time somewhat. My Scottish dreamboat came home on Thursday afternoon and is still here!! Yes you read right, be you drunk or tired or just habitually confused the last sentence was a truth – and a beautiful one at that.
Basically there was a moment between the last round of chemo and the next one that will start next week where it was decided he was able to come home for a few days. And so here he is and as I don’t want to waste any of those minutes I will sign off and get back to him. He’s currently lounging on the sofa and I am about to curl up with him. I will fill you in properly but I just wanted to justify my absence and also let you know the amazing news.
Big love – a very contented – H and P xxxxxxxxxx
Monday, 4 May 2009
Even keels
I hope everyone enjoyed the first bank holiday of the year, got a moment to relax and perhaps snooze for a bit in the sunshine, drink some wine, catch up and wind down….I know I did. God it feels good to bunk off school doesn’t it? That feeling never leaves – the one that sent Cassidy into a frenzy when he realised he didn’t have to go to school today, the one that releases Sunday from a day of dread and Monday from drudgery……..
So things are ticking along on a relatively even keel with Paul. He still hasn’t suffered the terrible nausea he did the first time and he has been given the second part of the Codox (the M bit). It’s given him a sore mouth and water retention so he’s not sleeping brilliantly but nothing he can’t cope with. Though, I am beginning to think that there is little that Mr Stevenson can’t deal with. He’s neutropenic again so I haven’t been in to see him for a few days and probably won’t for at least a week, but we are getting used to the prolonged absences. We’ve set up skype and have got a web cam so hopefully that will provide some sort of replacement to actual physical contact. Being a pen and paper girl it makes me feel all a bit Sci-Fi We are the future!
The plan with Paul’s medication is still the same. If he responds in the way they hope and the way he seems to be to this round then he will get one more blast of chemo then possibly a bone marrow (or stem cell) transplant. Both sisters were tested and neither were a match but it was a one in four chance anyway so pretty slim. If he is in a total remission by around this time next month then can actually grow and plant his own cells back in (this is where it all gets really, really Sci- Fi) because they would be considered healthy enough! If he is in partial remission then they will look for a best match donor. I tell you what I will def be registering myself on one of those list in the near future – it’s sad that it takes something so serious to make you get off your arse and do something so simple but……..
Now you might be all pleased, revolted and also, I hope, a little proud to hear that I have thus far slaughtered 6 mice! Some by sticky pads, some by traps and one with strangulation by my bare hands, well fingers (their necks are so small!) ok so that last bit was in my imagination. How could a vegetarian be so cruel? Easily when mice start shitting in her child’s buggy! Anyway my efforts have seriously depleted the mousley activity but I am still on high alert and will be trying white chocolate tonight. Paul is very; very proud of my efforts so even if I did feel bad (which I don’t) knowing that I am keeping the house vermin free is very rewarding.
This might sound pre-emptive or overly optimistic (is there such a thing?) but over the last couple of weeks or so Paul has seemed so much better than I have seen him since…well I think since before he was in Whipps X in November. It’s ironic that visually he looks sicker than he has ever done, in that classic cancer patient way, no hair, pale pallor etc etc. But he just seems better. It’s almost imperceptible and of course could be all in my head and I do have to remember not to ride the rollercoaster but I love having a snippet of things to come.
Hand P xxxxxx
So things are ticking along on a relatively even keel with Paul. He still hasn’t suffered the terrible nausea he did the first time and he has been given the second part of the Codox (the M bit). It’s given him a sore mouth and water retention so he’s not sleeping brilliantly but nothing he can’t cope with. Though, I am beginning to think that there is little that Mr Stevenson can’t deal with. He’s neutropenic again so I haven’t been in to see him for a few days and probably won’t for at least a week, but we are getting used to the prolonged absences. We’ve set up skype and have got a web cam so hopefully that will provide some sort of replacement to actual physical contact. Being a pen and paper girl it makes me feel all a bit Sci-Fi We are the future!
The plan with Paul’s medication is still the same. If he responds in the way they hope and the way he seems to be to this round then he will get one more blast of chemo then possibly a bone marrow (or stem cell) transplant. Both sisters were tested and neither were a match but it was a one in four chance anyway so pretty slim. If he is in a total remission by around this time next month then can actually grow and plant his own cells back in (this is where it all gets really, really Sci- Fi) because they would be considered healthy enough! If he is in partial remission then they will look for a best match donor. I tell you what I will def be registering myself on one of those list in the near future – it’s sad that it takes something so serious to make you get off your arse and do something so simple but……..
Now you might be all pleased, revolted and also, I hope, a little proud to hear that I have thus far slaughtered 6 mice! Some by sticky pads, some by traps and one with strangulation by my bare hands, well fingers (their necks are so small!) ok so that last bit was in my imagination. How could a vegetarian be so cruel? Easily when mice start shitting in her child’s buggy! Anyway my efforts have seriously depleted the mousley activity but I am still on high alert and will be trying white chocolate tonight. Paul is very; very proud of my efforts so even if I did feel bad (which I don’t) knowing that I am keeping the house vermin free is very rewarding.
This might sound pre-emptive or overly optimistic (is there such a thing?) but over the last couple of weeks or so Paul has seemed so much better than I have seen him since…well I think since before he was in Whipps X in November. It’s ironic that visually he looks sicker than he has ever done, in that classic cancer patient way, no hair, pale pallor etc etc. But he just seems better. It’s almost imperceptible and of course could be all in my head and I do have to remember not to ride the rollercoaster but I love having a snippet of things to come.
Hand P xxxxxx
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?.........
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
GPM
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
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
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
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