Light

There is probably very little to recommend about the 16th floor of UCH. If you happen to be party to the stunning views and the care and attention of the amazing medical staff, then you are probably pretty fucking sick with some kind of cancer or another. Not the best reason to enjoy the spoils of room service and constant care. But at half past 6 on Saturday morning I enjoyed a moment of clarity and beauty that, had I not been on the 16th floor, I would otherwise have missed.

I woke sleep worn and dream torn to the early morning light spilling into the room. The light of a bright, blue, sunny morning tinged with gold and pink. A light refracted and dismembered by the blinds and glass slats that fill Paul’s hospital window. It was the kind of light you enjoy on faraway tropical beaches, the light you see from an aircraft window when you are soaring above the clouds in the quiet sky, untainted and pure. London is not a place usually viewed from the top down I’m usually peering at the sky from a twisting Victorian street. From the 16th floor the light bounces nowhere but up and all around. Seeing a sleepy city swaddled in mist and ethereal light - well it’s quite magical.

It was good to experience a night in the hospital. Obviously spending the night with Paul is the biggest plus but also just to see his routine, the obs checks and the rapport with the nurses. We got fish and chips and gherkins and watched telly and fell asleep across the way from each other. And in the morning I got breakfast and we watched all manner of crap Saturday morning telly. When I spoke to him tonight I could envision where he was sitting the light he had on and how it makes the room feel. It’s good to know those little details.

There’s not much to say treatment wise. Sit tight and dream of miracles and know that that power of my dreamboat is beyond the measure of doctors. I have been told to say goodbye to Paul twice before, he’s still here and he will defy them again.

I also know you read this blog from your hospital bed so I’m blowing you a kiss as I write Paul……..


Hxxxxxxxxxxxxxxxxxxxxxxxx

OUT LOUD

Just wanted to check you are all chanting.

all together now:

FOR THE LOVE OF LOOOOOOOOOOOOOOOOOOOOOOOOOOOVE

For the love of life.....

It’s been a hard few days. We had a meeting with the consultant on Monday and we were told that although they were hoping to get certain drugs etc (the pralatrexate thing hasn’t worked out – they won’t give it on a compassionate basis) they really think that Paul’s cancer is incurable and that though they will keep treating him and keep trying to prolong his life they do expect the disease to take over sooner rather than later. I know these are things that have been said before but I suppose now that we are nearing the end of the treatment and choice of drugs it becomes more and more likely that the disease will win………

I know this sounds like defeatist talk – it isn’t. There is not a minute of the day when I do not think about the future with Paul in it. It’s just that for the first time in this intolerable fight I have had to think about a world in which Paul might not be. I have obviously thought about these things in my most dark moments but both Paul and I have had to be – well practical. If you don’t talk about worst case scenarios and they happen then you are fucked. You can’t open up conversations when someone is gone so we had to do the some of the hardest, frankest and most painful talking in our entire 13years of being together.

The hardest decision was to tell Cass that his daddy might die. Christ it pains me just to type those words. But I am so proud of the way we did it, our bravery and most importantly the bravery of my two boys. Paul told him that the doctors were still trying to treat him but that they thought the cancer might be too strong and that he might die. Well as you can imagine, he was inconsolable. When he had finished sobbing he managed to ask a few questions. The first was “Who will play robot rage with me?” the second was “Who will be my daddy then?” and the third was “Who will answer all my questions”.

It was the hardest thing we have ever done but it also relieved us of a pressure that has been building up for so long. The pressure of guilt and fear that if we talked about ‘arrangements’ it would mean we had given up on each other, that we were accepting a certain fate. But by talking about the most hurtful things they seem to be less frightening. Shit we all know that talk is good, it demystifies and deconstructs the dark side of life. It doesn’t breach the yawning chasm that I have for a heart when I think of a life without Paul but it means we are still doing things as a team. Cass needed to hear from us both that the worst might happen but that he would still be safe. We could all learn a lot from how a 5 year old takes the news that his daddy might die. He’s has been amazing. I know that if it does happen there will be other things to face but at least we have been truthful and honest with him and maybe that will somehow help to heal the wounds should the worst happen.

He has started a new round of chemo and I urge you all to have your blind faith, to chant to pray, to will the odds to fall on our side. This is what we want. I believe in miracles, I know you do too. His odds are about the same as winning the euro millions but someone ends up a trillionaire – why can’t it be him…….

For the love of love…..for the love of life….

For the love of love....

Flipping heck my brain hurts it has had such a stretching over the last week or so with all the intense research. It really has been like chucking a jug of lard on a running machine and expecting it to run a marathon. I will be the first person to say that child rearing is the hardest job I have ever done – no other has driven me to the brink of madness and the comfort of drink in the same a way! It’s emotionally and physically taxing and that’s enough quite frankly but it is not necessarily a tax on the brain (questions on quantum physics from Cassidy aside).

So the last week of - trawling the internet reading medical data and reports that are pretty indecipherable, sending emails to Singapore, Italy, Denmark and the States about clinical trials, speaking to the Vice president of a pharmaceutical company that calls you from New York to discuss a possible drug option while Kitty hangs off my leg asking for sweeties – well it’s all been a bit too much for my flab bucket of a brain. Though, emotion of the current situation aside, it has also been really, really interesting and I’m feeling so much more informed about Paul’s disease.

One of the promising looking drugs that I have found online is one called ‘Pralatrexate’. It’s been popping up everywhere and after a bit of digging I have found out it’s been on trial in the US and looks really optimistic as an alternative to the current chemo options for Peripheral T-Cell Lymphoma. But they are currently waiting on a decision on licensing for public use from the Food and Drug Association and that may or may not happen in September. I had a great conversation with the vice president of the pharmaceutical company who have invested in this, he explained all the red tape issues and the hopes of it being licensed and also that they are actually trialling the drug again in conjunction with another type of chemo at the moment. He said if I want to explore the possibility of bringing Paul over then he would help me find an ‘investigator’ (I think this is the person who runs the trial for each institution), to see whether he might be eligible. Which is obviously amazing, but also very daunting when thinking that we might have to relocate to the US for a while.

But, in the meantime Paul has had his chat with the consultant yesterday about the plan in terms of his next drug option and blow me if they didn’t say they thought that ‘Pralatrexate’ was the way forward. They have suggested the same regime that he would have followed had he got onto this trial in NYC! Apparently although the drug isn’t licensed yet they can apply for it on compassionate grounds because of the promising outlook of the drug for Paul. How amazing is that? Not only has it confirmed that UCH is just the most shit hot medical institution ever but it has also reassured me that my hours spent researching have been worthwhile……

So we have to have a meeting with the consultants next week but all being well he may be able to start the regime pretty quickly. Shit I thought that the docs were going to advise palliative care and tell us it was all over but it isn’t. Even if they had I would have told them they are mad and they don’t know Paul and we are not ready to lie down and die– but as it turns out I don’t need to. We have been given a glimmer and that’s enough for us. So fingers crossed that all goes smoothlyish next week

All chant : “For the love of love – give Paul and Hannah a fucking break!”

Thank you x

Ok won’t delay this anymore – the results of the scan were not good. They appear to show that the cancer has progressed and may have spread to peripheral nodes and they think it may be back in the bone marrow – FUUUUUUUUUUUUCK! What that means in terms of treatment we will find out today from the consultant and also next week when all the brains get together and discuss plans…..

I do know that we don’t really have many drug options left – Paul says there is probably one more roll of the dice. In the meantime I have been spending a lot of time on the computer trying to find trials along with an army of friends and family. My mum found, what looks like the only trial being conducted in Great Britain (A drug called Romidepsin) which he will ask about today and I have found a few globally. It’s no surprise that most of them are being done in the states.

It’s so hard when you look at Paul to believe he has something so horrible ravaging him from the inside. Ok he’s a bit thin but when he’s pottering around it’s difficult to believe he is sick. Despite the shit news we are resolute – we will find the drug that will kick this fucker into touch.
I’m still dreaming of that beach next year, Paul and I talked about it last night while we watched Cassidy sleeping. We seem to do a lot of talking over Cassidy as he snoozes these days. Kitty is building a sandcastle in a frilly polkadot swimming costume with matted salty hair and a sandy smile. Paul and Cass are collecting crabs and running shrieking in and out of the cold waves. I’ve been buried up to my chest by the kids and I’m watching everyone from under my warm, sand duvet with a contented grin on my face.

Apart from the cancer thing, we feel totally blessed and lucky because we have each other. On the days when I believe in fate and things I wonder if we met because we had to go through this together. We have always fit pretty well but this has cemented the symbiosis. We made a Kitty and a Cassidy and that is miraculous enough and then this came along. If it’s a test of some kind, we have passed it with flying colours. Sorry to get a bit schmaltzy again – feeling quite emotional as you might imagine. I don’t think I have ever thought about my place in the universe and my relationships with everyone as much as I do now…….

So onward and upward and will let you know what the docs say today

H and Pxx

Life is a rollercoaster.......

Have you ever felt your heart drop into your boots? Have you ever wished the clumsy butterflies dancing in your tummy would flutter away? Have you ever felt the fear on a clear summer’s day when not even the sun can chase the darkness away? Well I have been feeling that horrible tickly dreaded sensation since Friday when Paul had one of ‘Those’ conversations with the doctor. They said that his blood samples appeared to show signs of Lymphocytes which could either be part of the infection left over or that the last round of chemo has had no effect on the Cancer. They then came back to confirm it was lymphocytes and proceeded to tell Paul that he was going to have to make some tough decisions about his treatment and that although there is probably one drug left to try, the best option might be palliative care which he could receive at home and basically means giving up treatment and waiting for the inevitable to happen! Tough bloody conversation indeed…….

I can’t tell you how devastated we felt and feel at the idea of just giving up. Although it has knocked the wind out of our sails we have emerged in fighting mode again. I’ve been doing lots of research into clinical trials; I’ll probably get back in touch with Prof Montgomery as although this isn’t his field he might have some advice. Also got the wonderful Natalie and Tamara and Paul’s sister Claire on the case and we are determined to explore every avenue, leave no stone unturned.

In the meantime the doc on duty over the weekend said that his white cell count was going down which doesn’t usually happen when the disease is on the uptake and that the markers (not sure what they are) looked different to when the Lymphoma was around before. If I’m confused then no doubt you are too. The reports are contradictory. What everyone is agreed upon though is that we will know nothing for sure till he has a PET scan (scheduled for tomorrow) and the results of a bone marrow sample (done today) come back. So fingers, toes and everything crossed that by some Stevenson miracle and despite evidence(ish) to the contrary, he has managed to kick this fucker back in touch!

So we’ll not give up hope and somehow I feel that we will be thrown a lifeline – how that manifests itself I don’t know but I have a feeling it will happen. I know you guys will give up hope either. So get chanting again for remission, remission, remission. Let’s prove the doctor’s wrong. And if any of you have a few spare minutes then get on the internet and look up ‘Peripheral T-Cell Lymphoma’ – more brains than just mine would be good in terms of finding useful information. Not on the disease itself but perhaps on drugs that are being used elsewhere or trials being performed – I may, after all, miss things in my nightly internet trawling.
And if we do have to ship him over to another country or pay for drugs we will defiantly need some fundraising ideas. You can either leave a comment at the nd of this or email me at: hannah_mackey@excite.com

Me and the kids hung out with Paul over the weekend in his room which was the best way to kick me and Paul out of any sullen ideas that our life together is doomed. It reminds us what we are fighting for and what we have to look forward to and makes me determined that there is no way I am bringing up those two little reprobates by myself! On Sunday the doctor came and did his round and the kids waited relatively patiently. Cassidy very politely said goodbye to him when he had finished and Kitty blew a massive raspberry at him! I’m not sure he was used to that sort or response to a serious clinical conversation. Ha Ha! If there’s anything that brings you down to earth it’s them.

Will let you know the results as soon as we have them

p.s Paul is frustrated that he keeps singing the Ronan Keating song “life is a rollercoaster……” whenever things are a bit bumpy. And being a mischievous mutha he wanted me to mention this in the hope of sharing the irritating affliction with you all. Believe me I have caught it already…….

p.p.s Has anyone noticed there seems to be a squirrel following this blog. Paul will be quite tickled by that.

home is where the heart is

Things really haven’t moved on much from the last time I wrote. Paul’s a lot better but they are still pumping him full of antibiotics and waiting for his immune system to bounce back before they make any decisions on the next step. Which is a bit frustrating and annoying but I guess we have to ride it out. He looks a bit like an arctic explorer at the moment with a big beard and sunburn (his description not mine – I’m not trying to get him back for the black eye comment!).

I can’t remember a time through this whole experience when I have felt more frustrated about him not being at home with us. I suppose in the past it’s always felt necessary, him being in the hospital. We have either been searching for answers to an undiagnosed demon or fighting the one in front or our noses. And although he still has this underlying ‘thing’ going on, I’m not so frightened of him being at home and fighting it. As much as I used to dream and beg and plead in my mind for him to come back I was scared that the moment he did, something would happen that I couldn’t control – like he might unravel or come apart at the seams. I feared that that I couldn’t do as much here as the doctors in this battle. But his recent homecoming has made me realise that these stints at home are just as therapeutic as the treatment he gets in hospital. Ok, short of sticking him in the microwave, there’s not a lot of things we can do here to blast the Cancer physically, but just the sheer peace, rest and power of familial love has worked wonders in Paul.

Just hope that he gets a couple of days home soon x

Back on the 16th floor

It feels like ages since I last wrote here but it’s not so long – the last few days have really been a bit of a blur.

Paul got progressively worse after Wednesday with the fever and nausea etc, by Thursday he was back on the oxygen, unable to move, too sick to talk much and by Friday morning they told us it was a chest infection and they were going to transfer him to the high dependency unit (part of ITU) in case he needed to be intrubated again. Apparently because of the fever his respiratory rate was really high and they were worried that this would be putting pressure on his heart. Cue panic, inverted hysteria, tears, involuntary sobs, glasses of wine and lots of wandering dark thoughts (me obviously!).

But by the time I got up there on Friday, although he was still running a fever he seemed a little more comfortable, I sat with him for most of Friday afternoon and by the time I left the ITU Registrar had decided he wasn’t sick enough to transfer but that they would review him later in the evening. Come today and he was requesting a latte, the guardian and a ham sandwich! Talk about freaking roller flipping coasters!!

He’s still being monitored but he seems to pulling out of the worst of it. I wonder if the infection was down to the fact that he went neutrapenic earlier than normal and he had a cough and cold recently, so maybe it just flared up again in full force. Well it’s all supposition – It could be something he just picked up somewhere or something he gave to himself. I suppose as long as he kicks it, it doesn’t matter where it came from. He was really floaty today which was quite funny, must be a combination of all the drugs and it was nice to see him grinning again.

I think they might put a truth serum in with all the other drugs he is taking because he told me yesterday that I had a really black bag under one of my eyes. “Charming” I said as the nurse snorted into her medical box. “I wonder what on earth could be keeping me awake at night”. “I thought it might be mascara” he said “I’m not wearing any makeup“, “ Oh it just looked like you had a bit of a black eye” – “ Yep you are definitely digging that hole a bit bigger Paul”….. By this point the nurse was openly guffawing…..

So things are stable at the moment. They couldn’t give the last few days of chemo as he was so poorly but I don’t think he missed much. We’ll find out next week what the plan is. I’m just desperate for him to come home again.

update

Day 3 billion and 6 in the bastard cancer house……

If it feels like this long for me and you guys it must feel twice that for Paul. He has started the Chemo after a bit of touch and go with his cough. The Doc’s have been putting off him coming in as its against hospital policy to have anyone in with any bugs and stuff, which is understandable of course.

So he’s been back in the hotel on Tottenham Court Road till today when he was supposed to be coming home for a few days. But he’s been running a bit of a temperature so they have decided to admit him till it subsides. It means that he hasn’t received any chemo today but they hope to be back on track tomorrow. Meanwhile he is feeling utterly wretched, nauseous, tired and I guess pretty bloody fed up. But I also imagine he’s taking it all with the same good grace and stoicism as usual. I say I think because he has been too sick to talk much today so I’m second guessing his feelings. I feel qualified to do this by now.

This is a short one. The humid stillness is sapping my energy. Will write more when I have news and when I can type without breaking into a sweat……..