Tears of a Frown

Let’s start with good news for a change. Tickets for Kendal Calling have arrived, well at least they’ve arrived at Debs. Just as long as she remembers where she put’s them when the time comes. It always makes it more definite when the tickets arrive, and I’m really looking forward to it now. Still waiting for the Green Man tickets though, they’re due to be sent to me. Waiting and worrying is all part of the ritual, but I have to say it’s nothing like waiting for Glastonbury tickets to arrive. That’s a gut wrenching experience and can last for weeks and weeks. Only fellow Glasto goer’s can understand what I mean. Anyway, it gives me something to focus on for the summer ahead, as I keep reminding myself as I struggle to get over surgery.

I’ve had nurses coming and going all week, wounds dressed and re-dressed. I’ve been referred to a physiotherapist to re-assess my needs, bearing in mind the fall. I’m still a bit wobbly on my feet, even with sticks. My legs are aching all the time, standing, sitting, lying down. They’ve suggested a zimmer frame, can you believe it, a zimmer? Everything inside me says NO. Another nutritionist has been arranged, I’m still losing weight, almost back to my lightest ever adult weight when I was with M. That was due to almost non stop festivals, gigging, clubbing and partying. I am eating, and hardly burning any calories, so I don’t see where the weight loss is coming from. I didn’t need to go to the GP in the end, which was a blessing. I can do without the travelling. Between them they have arranged to double the dose of my background pain killer (Targinact) so I’m hoping this change will be beneficial…..soon. Because I only had enough tablets to last me a week at single dose, I was left without tablets for half a day whilst I waited for them to be delivered. This resulted in a five hour gap without any medication, and it was noticeable almost instantly. Pain is an awful thing to bear, and when it’s constant it really drags you down. Every movement, breath ,twist, even frown brings a tear to your eye. I’ve been warned about possible depression, usually 4-5 days post op, but mine seemed to hit me yesterday. I sat down, still in pain and all of a sudden realised how helpless I was. I wasn’t living at home when my mum went through the same operation 25+ years ago. We didn’t particularly talk about it much, but the one thing that has always stuck in my mind was her insistence that she would never put herself through the same surgery again. For the first time, I could understand exactly what she meant.  Even 25 years later, with better surgical techniques, better analgesia, and far better care, my body feels almost destroyed. The effort required to do even the simplest things is tremendous, and I never seem to recover from the previous effort before the next is needed. This looks like depressive writing doesn’t it? I’m trying so hard to be positive, but have to concede that it’s very difficult at times. It’s hard for me to admit it, even to myself, but as I sat in that chair I just burst into tears, almost uncontrollably for half an hour. I think it did me good, made me realise what I am and not capable of. I’ve made a few decisions about the future, the sort of things I should be concentrating on, the things that are really important to me. My fiercely independent nature is at times selfish, and I’ll be doing things to change that in the future. I’ve had no life changing cancer moments, I still know what’s important to me, I’m still positive and determined, but I think a few tweaks are required to show my appreciation to others, and of life itself.

Friday was a nurse free day. It’s nice to be cared for, but so many nurses arriving on a daily basis can wear you out in itself. I’m still not sleeping terribly well. Seem to wake up almost hourly whilst it is dark, using the opportunity to top up with Oxynorm through the night. Dawn is getting earlier by the day, and at the first sign of light my curtains are open. The winter grey skies are being replaced with various shades of light blue, clouds are less intimidating, even when you know that rain is on it’s way. It makes me think of summer, it makes me think of Kendal Calling, and Green Man -when the bloody tickets arrive.

For some reason I sleep better when it’s light, and being a no visitor day I made the most of it, staying in bed until almost noon. It was an attempt to build up a meagre amount of energy reserve to enable me to take the short walk to the Post Office. First time out in a week, and although it took me an eternity at least it was fresh air and a change of scenery. I had letters to post, and as I’m still looking for home help, a post card in the post office window. I hope someone see’s it and gets in touch. I’ve tried the agencies, a couple are coming to see me on Monday, but they are expensive, I’m not sure just how much help I can afford, then again I’m not sure I can afford to be without it. It’s not just for now, I want something in place before I begin the next round of chemo, and before surgery on my liver. I know what major surgery is like now, I know what to expect. I could almost have sunk into another depression as I gently tentatively lowered myself onto my newly acquired cushion on my armchair. Such a lot of effort for such a small return. The threat of further depression lifted on receiving one phone call. She has a sixth sense I know she has ! Bexx (CNS) from The Christie phoned, just checking, again. How am I getting on?…how’s the pain?…..am I eating?…….is the cushion helping? She suggested, no, insisted I carry on with the top up painkillers. I don’t like to, I should be reducing it now the background analgesia has been increased, but she insisted I carry on until things settle down. She insisted I phone, anytime day or night,  if the pain isn’t under control. “We’ll just have to bring you back in and look after you”. I still ended up with tears, not from depression but from being humbled by other peoples kind and caring nature. Who needs private medical care when the NHS is as good as this.

Pride Swallowed

Well I suppose it was inevitable, the fall came, but at least there was nobody here to witness my pride going with it. I certainly don’t have any dignity left, and so I suppose it’s time for me accept that I might be a tad frail. Trying to get up from the armchair, something gave way. With my full weight on my walking stick, it propelled me face first towards the radiator. The coffee table broke my fall to a certain extent, although I think I might have preferred to have gone into free fall rather than experience the pain of my abdomen as it folded round the coffee table, twisting the rest of my body as my face slapped the adjacent radiator, full force. Dissolving or not, there must be a hell of a lot of stitching and stapling inside my body, and I think I felt every one as they tugged at the tissue they are holding together deep inside my abdomen. The remnants of cold coffee from the cup I was  planning to refill splattered everywhere in slow motion and high definition and apart from the imprint of the radiator on my face there wasn‘t any other real damage. You become adept at re-shaping bent glasses when you‘ve worn them as long as I have, and anyway, they never feel comfortable unless they are bent and twisted, as any respectable spectacle wearer knows. I know what you’re all saying-  “you shouldn’t be left on your own” , but no matter how many people were here, I would still have tried to stand up, and all you could have done was watch and maybe help pick me up after the fall. I’ll take it as read that you’re all wagging your finger at me, OK, I’ll take more care in the future, I’ll try and fall in the other direction.

I had already decided that I needed some help before the fall incident, at least until I’m a little stronger. In general my recovery is going well, I have to keep reminding myself of what I’ve been through. The enhanced recovery programme I am on is working, but I have to accept I’m probably expecting a little too much at this stage. The idea is that I’m as fit as can be before embarking on the next stage of chemotherapy, but that’s still a few weeks off, so perhaps I should be taking things a little more slowly. Sunday had been going so well, my sister arrived having driven 2 hours to take me shopping. We lunched at Sainsburys, and I conceded to an electric wheelchair to get me round the supermarket. Even I couldn’t convince anyone that I was able to walk. I know there are a few people who would pay good money for photos of me whizzing around Sainsbury’s on an electric wheelchair, but sorry Liz, all photos were banned. It would have been fun had it not been so uncomfortable, but at least I’ve been able to stock up on a few essentials and enough ready meals to last me to the end of the week. I hope to be a bit more mobile by then.

Monday was busy, with both the stoma nurse and district nurse visiting. The Macmillan nurse is coming later today. Out of the three of them we should be able to sort out all my problems. Pain is the main issue, and just by coincidence as I was lying in bed contemplating the effort required to get out of bed, this morning, Bexx, my colorectal nurse specialist, phoned. There are very few people who manage to be both kind and considerate, wise and helpful, and sincere and genuine. Bexx is one of them. Just hearing her voice is a tonic, knowing that she is thinking of you. Yes I know it’s her job, but she does it with such kindness and sincerity it leaves you in no doubt that she’s doing everything she can to help. She’s always very busy, hard to get hold of at times, but you know when she does speak to you have her 100% attention, and nothing is too trivial. We discussed everything the other two nurses had gone over, and more importantly the pain relief problem. Bexx came to my rescue whilst I was in hospital, just walking past and seeing that I was in discomfort, she immediately prescribed, and bought to me additional pain relief, emphasising that there was no reason I should be in any pain, and all I had to do was ask. The three pain killers I am on are already pretty strong. Morphine has been ruled out for now as one of it’s side effects is to reduce the rate at which your digestion system works, not something I want at the moment. So I’m left with Pregablin, Targinact and OxyNorm, which is a liquid and faster acting form of Oxycodone. I’m iusing a lot of the OxyNorm, which acts on pain pretty quickly, but it shouldn’t really be used on too regular basiss. She has suggested that it might be a good idea to up the doseage of the background analgesia and so she’ll be phoning my GP this morning to sort that out. I’ll be seeing the GP tomorrow.   Other than that Bexx has suggested what many others have said throughout my life – you need to get off your arse ! Quite literally. The District nurse is arranging for a special cushion to be delivered, which I hope will make sitting more comfortable. Bexx reminded me of how well I’m doing after such major surgery. It’s only two weeks today since my operation, seems like an eternity already, although I do have the constant reminders. I also had an email from the CEO of The Christie. Caroline came to see me whilst I was in critical care, and had gone up to the ward yesterday to find I had been discharged. That’s the Chief Executive of The Christie, going to the bother of finding out how I’m doing. Just think about that for a minute, you really would not get that kind of care and concern in any other hospital.

One of Debs friends has just had pathology results from a biopsy taken a week or so ago. I phoned her this morning to learn that they had found a number of polyps containing cancerous cells. I  think the guy is a bit devastated, just hearing the word ‘cancer’ send all sorts of thoughts whizzing around you brain. He had gone for a colonoscopy this morning where the offending polyps are to be removed. I tried to re-assure her that this is good news, it seems they have caught it very early, before the polyp had gone on to develop into a full blown tumour. Another example of how the screening programme is working, and saving lives. Identifying problems early is the key to beating bowel cancer, so if you get the chance to take part in screening, do so. Or if you have any concerns or worries see your GP. I may make light of it at times, but take my word, you really do not want to go through what I have over the last 9 months or so. The pain and effect on my body and brain over the last few weeks has been awful, not something I would wish any of you to go through.

I’m going to speak to the Macmillan Nurse about trying to arrange some help around the home. I really can’t cope on my own, everything looked OK when Lew left, everything tidied up and cleaned, but it soon mounts up again after a few days. A helping hand for a couple of hours a week until I get stronger would be a great help at the moment. My pride is swallowed. I could never imagine myself thinking like this before, but I guess that’s what cancer does to you.  I’m not giving in to it, just recognising that I need to be stronger to continue the fight.

Back to Bed

Well this one was difficult to write. I had to find the laptop, plug it all in, set it up, connect it to a monitor (the screen doesn’t work, hence the need to borrow Lews’ last week). Seriously, I’ve had plenty of time to be thinking what to write here, but by the time I sat down to wrote it, it didn’t seem relevant, well not for now at least. I arrived home yesterday (Friday) evening, after a long day of trying to sort everything out that needed to be sorted. Medications, future Appointments etc. After 12 days in hospital I was ready to come home, although now I’m here, everything seems to hurt so much more than whilst I was there. Then I remind myself that this time last week I was still in the critical care unit, so I can’t be hurting that much really.

It’s remarkable, all I’ve got to show for six and a half hours surgery is a few small incision marks on my abdomen, oh and the now obligatory bag on the end of the re-routing of my colon. Much of the last 12 Days is still a bit of a blur. Lew is still reminding me of the things I’ve been through and forgotten about. I’m sure it must have been harder for him, Alana and the rest of my family. I’m sure it hurt at the time, but to be honest I was so off my head for most of it I couldn’t really care less. I still have a bag full of opiates at my disposal to take the edge of things when they do become too much, and thankfully they work. There will come a time when I need to start reducing the amount of pain relief I’m taking, but for the time being I happy with the way things are. The long period of immobility has not done my back any favours, so I’m fighting on both fronts, if you can have two fronts where one of them is a back. I need to keep moving, but every time I get out of bed even if just for a coffee, I want to get back straight in. I’m sleeping almost the instant my head hit’s the pillow, so it must be doing me some good -yeah? It was so good to be in my own bed last night, and I think I’m just making up for lost time. I know it will come, early days and all that, and I know tings can only get better, one day at a time.

I continue to be overwhelmed by the number of messages I continue to receive. Cards, e-messages, emails, texts, tweets, DM’s, I may not have got round to responding to them all yet (well any of them really except in general form), but I have been keeping up to date and have read every single one of them Each of them is special to me. I’ve learnt two things in the last few weeks, how marvellous the human body is at recovering from major trauma, and how special human kind can be. I really should have known the latter, just never been in a position to appreciate it as much as I have these last few days.

I’ve got one more day of rest before I get inundated with visitors on Monday as the community care team takes over temporary control. District nurse, stoma nurse, Macmillan nurse are all scheduled from Monday. I’ve got tons of phone calls to make, appointments with GP to keep, in between trying to get fit and well before the next episode begins. I’ve got lots to write, and the notes keep growing as memory returns. I managed to last the duration of the Grand National, I’m exhausted, and so for now ………….yep, you guessed it, back to bed.

A Bag For Life

So, after eight days away I finally get to update the blog! I’ve seconded Lewis’ laptop for 24 hours to enable me to catch up. The absence was perhaps not unexpected, but events over the last week certainly have been. Surgery went ahead, as planned last Tuesday morning. Taken down to theatre at 08.00 , first to the anaesthetist to put in an epidural, the idea behind that being to control pain after the operation. Just as a point of interest the anaesthetist live just a few miles up the road from me (Delph if you really want to know). Preparation and the insertion of the epidural took an hour, theatre for surgery to begin. Six and a half hours later I was out in recovery, not that I remember much, other than the pain. Pain management is a balancing act, we all have different thresholds, and so it took a while to get this under control. But I’m sure they did at some point. An hour later I was in Critical Care Unit, for what was planned to be an overnight stay, just for observation.

The overnight stay turned into a five day residency in CCU as things started to go askew to the plan. Memory from my stay is pretty vague, I know what happened, but the amount of morphine pumped into my body obscured most of the detail. Firstly pain, it soon became apparent, that the epidural wasn’t working. Only one side of my body was pain free. Not a problem and not unusual, but still something I could have done without as it took some time to establish the fact despite me being in agony. From there on I was given PCA (Patient Controlled Anaesthesia). In effect a pump I controlled with a button to deliver morphine whenever I needed it. Some sort of software ensured that overdose was not possible, and doses were automatically adjusted to ensure I was getting sufficient pain relief. My saviour for the next 7 days. CCU is a computer controlled environment, everything from blood pressure to heartbeat is monitored by the nurses who are with you 24/7. They react to the information they are receiving. I recall my head being swathed in wet towels at some point, as my temperature spiked from hour to hour. Now an indication of a serious infection. Again not unusual, maybe I was just being unlucky. Three broad spectrum intravenous antibiotics soon brought the fevers under control, but it did mean that my stay in CCU was extended whilst they ensured the infection was under control. I was supposed to be on an enhanced recovery programme, to enable me to be discharged as soon as possible, with the aim of starting the new chemotherapy regime as soon as possible. This meant getting me out of bed as soon as possible, being the day following the operation. I may have used to the term excruciating before to describe pain, but this time it hit a new level. An hour and a half to get me from bed to chair is no exaggeration, but in hindsight, it was a good move, as each time the process was repeated it got easier and easier, and I think I’m now benefiting from this decision. Food was the next hurdle. Just a sandwich to start with – no problem. That evening a tiny amount of mashed potato with a tiny amount of some sort of meat and gravy. I kid you not, we’re talking morsels here. But boy it certainly wasn’t morsels when it all decided to come back up! By now I was on I/v medication to stop me feeling nauseous, being sick, antibiotics, blood thinning…..and anything else you care to suggest. I know at one stage I had eight different medications being pumped into my body. I really do look like a junkie with the number of marks on my arms, so many that at one point they were considering using my feet to try and gain access to a vein. It was another couple of days before I was able to tolerate food again, but tolerate I did, and so finally after 5 days on CCU I was transferred back to the surgical ward.

Ah yes, the medical outcome ! Did you want to know ? There was no success or failure involved in the surgery. I knew from the beginning that there could be various outcomes. The operation was a success in that the tumour was removed, and with sufficient margins to reduce the likelihood of it returning, well at least in that place. Hopefully sufficient lymph nodes were removed to enable a precise staging of my cancer. This may not have been possible as radiotherapy may already have destroyed many of them, but we’ll have to wait for the histopathology report for confirmation of that – probably still another couple of days away, possibly more due to the holidays. In Mr. S’s own words, the area of bowel removed was like a a tube of concrete piping. The radiotherapy may have helped to save my life, but it also caused considerable damage. As a result of this, and the necessity of the stent, it will not be possible to reconnect my bowel in the future and so for me it’s a bag for life. At least I’m doing my bit to save the environment.

Well folks, that’s about it for now. By the time I blog again I’m hoping to be home, even as early as the end of this week, fingers crossed. My thanks and Love go firstly to Lew who has been here by my side every day, not exactly the way he would want to spend time up here, especially when it involves an hour and a half bus journey, each way, every day. Secondly to my family, all of whom have demonstrated their love and support me throughout this ordeal. I’d better hurry up with the rest I’m getting emotional. Thirdly, the staff at The Christie, from the very top, Chief Exec who took time to come and visit me in CCU last week, to the ground workers who show so much care, despite the difficult conditions they sometimes have to work under. There are no superlatives when it comes to describing the dedication, professionalism and god damn basic human love and respect when it comes to the staff on the critical care unit. Despite being at the depths of what any man can take you always made me felt cared for, and I always knew that you were doing as much as was humanly possible to make me comfortable. If anyone in future would like to criticise the NHS, please make sure you don’t do it in front of me, you might just end up with a bloody nose. And finally Mr S. and his team of surgeons. I haven’t seen him since Thursday last week, but I’m guessing he’s had the Easter holiday off. In my eye’s he can have the whole of the rest of his life off, for me you’ve done over and above what could possibly be expected. But I Know you’ll be back Tuesday, that’s the kind of guy you are, and after that holiday you’ll probably be putting in 18 hour days to make up for lost time. I have so much respect for you man.

Something Deep Inside

There’s something deep inside me, it will not go away.

It’s slowly taking over, at least that’s what they say.

I don’t know how it got there, I don’t know whence it came

It eats up all my energy, and saddles me with pain.

I can’t control it’s movements, it burrows deep inside

It’s eating all my organs, from that I cannot hide.

They’ve tried to halt it progress, burn it’s roots away

They’ve battered it with toxins, to keep it‘s spread at bay

Now they’ll cut inside me, attack with clamps and knives,

Cut off all it’s nutrients and blood on which it thrives

That thing that grows inside me, is coming out today

To mutilate my body is the price I have to pay

I’ve put my faith in others, to lead the next attack

The sooner it is over, the sooner I’ll fight back.

Be Aware, Care and Share

I’m sure I wasn’t the only one who sat in the garden this week, soaking up the rays and admiring the daffodils that had flowered, at last. They seemed to have been ready for ages, but it’s only the last few days where they have burst into the open. When I planted them I thought I’d be a lot further down the road with treatment than I am, and I hadn’t anticipated the added complications of my cancer having spread in the way it has. Phrases like ‘distant metastases’ and ‘advanced cancer’ were just that, just phrases, items I didn’t need to click on those links on the various websites I had been looking at, researching the implications of bowel cancer. Now it’s a reality, even if the outward signs don’t indicate that to be the case. I caught my reflection in the window, acting almost like a mirror hidden in the shade. Perhaps it was the influence of the narcissi, but I couldn’t help but notice how well I was looking, tanned from the last few days in the sunshine, slim from the weight I’ve lost along the way. I laughed as I thought how content I was looking, and I am.

Bucket lists are becoming increasingly popular, almost obligatory regardless of how long you’ve got to live. Not that any of us know that, we’re just as likely to step under a bus tomorrow as we are to have our lives cut short by some horrible disease. You have to have a high and a low to achieve an average, and someone has to be at the bottom end, it would all be too predictable otherwise wouldn’t it. Imagine how regimented and unexciting your life would become if you knew when it was going to end. As for bucket lists, well for those tragic young patients who would never have the opportunity to fulfil their ambitions, I think they are great, but for old codgers like me, I think if you have reached this stage and still have a mountain of things you wish you had done, then life hasn’t been much of a success. Don’t get me wrong, I’m a great believer in living every day as if it’s your last, at times in my life I’ve done that to a great excess. Do the things you’ve always wanted to, but don’t have any regrets. I’ve mentioned before how I don’t feel scared or frightened about what is ahead of me, and I believe a large part of that is due to the contentment that I saw reflected in the window. I’ve been lucky enough to have found the love of my life, even if I was stupid enough to have lost it again. I’ve been lucky enough to have two wonderful kids whom I love to bits, even if I may not have been the best Dad n the world. I’ve had some terribly bad times, and fantastically good times. I’ve lived life on the very edge, but always managed to cling on and come back with the experience of having done it. I’ve made mistakes and bad judgements, I’ve had thrills and tear jerking experiences. I’ve met some amazing people, and quite a few dick heads too. I’ve made enemies of people who couldn’t be bothered to get to know me, and life long friends of people who didn’t need to get to know me. But regrets? No, it’s all part of life’s make up. You can’t have the good without the bad, the happy without the sad. So does all this mean I don’ have any ambition – hell does it. It’s just that my ambitions are more likely to be what others might consider tame. This year I’m going to two music festivals (yes I’ve added another one, and still might add a third) Green Man and Kendal Calling. Nothing makes me happier than sitting in a field with friends listening to good music. I might have to re-arrange a few things with my oncologist, but I’ll be there. And next year – well it’s Glastonbury, my spiritual home. I can’t ever imagine not being there, and those who know me understand just how important it is to me. OK so it’s not bungee jumping, it’s not paragliding through the grand canyon, scaling the Himalayas, skating with penguins or swimming with dolphins. I don’t have massive goals, life takes so many twists and turns, it can be disappointing to plot a route for the future. But whatever happens I’ll be content and with no regrets.

Monday I go into hospital, again. This time for surgery. To borrow a phrase, this is the end of the beginning. It’s been a long time coming, and at times it almost came too soon. I go into hospital with no guarantees or promises. I don’t even know what the outcome of the operation will be. I know what we’re hoping, but in truth nothing can be certain until operation is finished. Even then I’ll be waiting for more histopathology reports, although the fact that the cancer has already spread gives a good indication as to what these reports will conclude. Tuesday will see part one completed, the tumour in my bowel will be removed. I’ll then be passed on to the oncologist, another chemical bombardment of the cancer, this time to areas where it has spread. Then back to the surgical team to work on my liver. Tumours are present in five of the eight segments of my liver, so anything that chemotherapy can do to reduce these in either number or size can only be of help to the liver surgeon, and then there is the lung to consider. I don’t make things easy. You can see now why this is only the end of the beginning, I still have a long way to go on my cancer journey.

It was about this time last year that I began to think the symptoms I had been experiencing might not be quite as trivial as I first imagined. It still took me another three months before I saw my GP. April 2012 is Bowel Cancer Awareness Month . The aim of the campaign is to raise awareness of the signs and symptoms of bowel cancer and to get people to act on their concerns, sooner rather than later. Early diagnosis is so important, and could mean the difference between a simple procedure resulting in a 100% cure, or advanced bowel cancer that I am now being treated for. My future is uncertain, make sure yours isn’t and don’t be an April Fool. Get everybody talking about bowel cancer and pledge your support here. www.beatingbowelcancer.org/bowel-movement  It won’t cost you anything to show your friends and family that you care and are aware, but not doing so might just cost someone their life. So please add your name to the bowel movement now, and share it with everyone you know. Be aware, care and share.

Well that’s it from me for a while, it’s unlikely that I’ll be updating this for a few days at least, but I’ll try and tweet when I can and update my FB profile. I don’t know how long I’m going to be away, could be 4-5 days, could be 2-3 weeks, we’ll have to wait and see. Thanks you for all the messages and good wishes I’ve received over the last few days, it really does mean a lot. I’ll see you all on the other side.

Ticking Off The Days

This kind of weather fills you with joy doesn’t it. You can’t help but get yourself outside when the weather is like this. I’d like to think that it was the weather that inspired me to get out and enjoy the fresh air and sunshine yesterday, but in truth it wasn’t. Going out for a walk was the only way I could keep myself awake. The accumulation of morphine in my body is taking effect, in that every time I sit down my eye lids turn to lead. I had fallen asleep in the armchair within half an hour of getting up  and then at various other times during the day. I’ve been trying to balance the various other painkillers I’m taking with the morphine, but I can’t do without it, so I guess I’m going to have to put up with falling asleep a lot in the coming week. As Mr S kept emphasising to me last week, we’ve only got to get to next Tuesday, and so a few little sacrifices now will be worth it in the end. As it happens, one of the doctors from The Christie telephoned me this morning at the request of Mr S. Just to check that I was OK. It’s both reassuring and scary to get calls like that. I know it’s rare for doctors to be phoning you, and so it’s re-assuring to know they are concerned enough, but it also makes me wonder, why are they concerned so much? I’ll just settle for the fact that this is an exceptional hospital and Mr S is an exceptional surgeon, I’m very lucky to be under his care.

Yesterdays walk was accompanied by 4 lovely girls from Los Angeles. I’m sure I’ve mentioned them before, Warpaint. A girl band with a difference, but not in the ‘girl band’ way you’re thinking. I try not to compare artists to other artists, “oh she sounds like……” , it doesn’t seem fair. We’re all influenced by someone else, but in the end we’re individuals and put our own stamp on things. I’ve been playing their debut album (The Fool) since it was released last year, but now I’ve found their EP, Exquisitie Corpse, released in 2009, and I love it. It was on repeat for the entire time I was out. Music seems to have taken a back seat lately, well as far as my blog is concerned, but I have no hesitation in recommending this band , they really are something different and well worth checking out. It’s hard enough as it is for female musicians to be taken seriously, but this band are both brave and challenging, not afraid to play music as they see it, and kick the stereotype into touch. Give them more than just the one listen, they’re worth it and you’ll thank me. The video below is from Glastonbury 2011, and despite it being on my list of ‘must see’, I didn’t manage it. No surprise there then, even though they performed twice over the weekend, on The Park stage, and the clip below on the John Peel stage.

My good friend Jiiiim came to visit on Friday, which was great. I’d not seen him since Glastonbury last year, so it was good to catch up.  A lot has happened since then. He had driven up from Essex primarily to collect some piece of archaic radio equipment  he had bought on eBay, and took the opportunity to call in on his way through. On the subject of visits, Lew is coming up on Saturday, and I’m really looking forward to seeing him. Not that I’ll get to do much with him as I’ll be in hospital, but glad he will be here anyway. He’s wanted to come up a few times in the last couple of months, but I’ve managed to put him off. Things have changed so much from week to week, day to day sometimes, it’s been difficult to judge when it would be best for him to be here. I know he’s wanted to be here, wanted to help, but to be honest there’s not much he could have done anyway. Now that I know surgery is going ahead, it makes sense for him to be here when he can be useful, although I have my doubts about whether he can ever achieve that. For those of you thinking, I know he’ll take that last comment in the way it was intended – joke. Let’s put it this way, unless I want to eat chicken fajitas every day when I come out of hospital he won’t be much use to me as my cook, although I might be doing him a disservice there, he might be able to do one or two other dishes. But at least he can open a can of soup. Whether he can keep the house tidy while I’m away is another matter, he can’t even do it while I’m here. I’ll have a couple of days of me listening to him playing my guitars, the way they should be played. That in itself makes me such a proud Dad. Initially he’s planning to be here for 2 weeks, but that’s really depending on what happens in the coming week or so. I don’t want to keep him here too long, the band need him as much as I do, and from what I gather he’s getting involved in a few other music projects as a sideline. I’d much rather him be doing that than wasting his time up here with me.

I’m ticking the days off now, less than a week. Perhaps the hardest thing is not knowing what the outcome will be, there are still so many options and possible problems. I feel as though I should be frightened, scared or at least anxious- but I’m not. I know it’s not going to be easy, but this first stage is a necessary step in the long haul ahead of me. This will be the first of a number of operations, one that I need to recover from quickly to be able to start the next round of chemotherapy. So the sooner we can get it started, the sooner I can start to recover. Roll on Tuesday.

My New Best Friend

Foolishly, I promised to update the blog today, a promise made during the euphoria of a return home after three days in hospital. Once that euphoria had worn off, the severe exhaustion kicked in. Even though you don’t exactly exert yourself whilst in hospital, it can be exhausting, and despite the fact that you spend the majority of time in or on your bed, decent sleep is at a premium. It’s a hospital after all, they are busy. People are ill at the most inconvenient times of the day and night, and without question, there is always someone there to help them, whatever time it’s needed. Just a week or so ago I was the grateful recipient of the round the clock attention, disturbing other peoples sleep. This week it was my sleep that’s been disturbed, so I’m not going to complain.

One of the first things that was noticed on my re-admission to the ward was my dramatic weight loss. 6kg in 10 days. This resulted in a drip to pump whatever it was I am missing back into my body. The effect of having a drip alone guarantees a disturbed nights sleep. Apart from the pain of the needle bending in your arm as you move during the night, there’s that irritating bleeping alarm when you inadvertently cut off the flow by placing your arm in the wrong position. I was supposed to see a dietician to discuss my weight loss, but that didn’t materialise. Hardly surprising considering how busy they are, and how many any other patients are in far greater need of dietary advice than me. I know what I need to be eating, I know what I should avoid eating. My problem has not been not knowing, it’s been not being able to. The pain of processing food through my digestive system has just made it impossible for me to even contemplate eating, whether it be the right or wrong foods. This was a point so caringly understood by my consultant, Mr S. We discussed the problem in some detail. He explained the balancing act of pain versus problems. His job is to try and keep my colon in the best order possible prior to surgery.  This will give him the greatest chance of achieving the best result possible from surgery. I know I should be thankful for the stent, the metallic cage that’s keeping my bowel open, but at the same time is causing me so much pain and discomfort. But without it, the chances are that a large section of my bowel would already have had to have been removed. Removed only because it was blocked, not because it was unhealthy or affected by the tumour. This would leave him less to work with come the time for surgery to remove the tumour. So although the stent has given me a greater chance of the best outcome, it has come at the price of some excruciating pain. To counteract this, I’ve now been prescribed Oramorph – liquid morphine. I can now categorically state that Oramorph is my new best friend. Nobody wants to be reliant on drugs of such strength to help them function, but it’s already made such a huge difference to me. Without pain I can sleep. I don’t have to concentrate on minimising pain in whatever I do. I’ve been doing ‘normal things’ today. I can move without having to think first. I’m feeling happier, more optimistic, and at last am not afraid of eating, although my diet is still extremely limited.

Aside from scans, x-rays, blood tests etc, the main purpose of my admission this week was to carry out a colonoscopy. Normally a day case procedure, the presence of the stent meant that the risk of bowel perforation, collapse, and pain were increased dramatically, hence the need for me being in hospital for the procedure. I met with Mr S before the procedure began, where he explained the risks and possible problems, as well as the reasons for doing the colonoscopy. Scans had already highlighted other areas of concern in different parts of my colon – areas where he had not previously been able to get to because of the restricting nature of the tumour. The procedure went ahead under heavy sedation, sadly not enough to counteract the pain. Mr S gave me a running commentary, and although I tried to keep my eyes open to watch progress on the monitor, most of the time my eye’s were screwed with the pain. The suspect areas were located, high up in the transverse colon. Biopsies taken and sent to the lab, but Mr S was confident that these were not a spread of the cancer. Advanced technology allowed perfect stills of the majority of the procedure to be reproduced, all of which I had the opportunity of viewing after the colonoscopy had finished. The first time I had actually seen the tumour embedded in my bowel. All it’s gory detail, 50mm does not seem much when told of the size, but seeing pictures brings home just how large an area it covers. It looks enormous, gruesome, vile, angry and every bit as cancerous as it really is. Even though large areas had been burned and attacked by radiotherapy, it was clearly still a formidable force, and although may have been weakened, it has in no way been beaten. It made me feel angry. I had seen it’s outline on x-rays, it’s formation on scans, but in clear visual form I could see just how it has taken over my colon and continues to attack anything that is in it’s way. I was left under no illusion that this thing needs to come out.

And so I will return to The Christie on 2^nd April, for elective surgery the following day. I’ve now seen what the enemy looks like and I’m up and ready for the fight ahead. I’ve no doubt that I have the ace card in my hands, and that is Mr S. I am the only case listed for that day, so I’m not expecting a quick job. It might seem strange to be looking forward to major surgery, but I am. It will 8 months since diagnosis, and this seems like the first step in the fight back. Chemoradiation may have weakened the enemy, but now we’re going in for the kill, well at least on the front line. We’ll deal with the breakaways in the future, just glad to be getting this stage of the war started.

*********************************************************************************

If you have any concerns about bowel cancer, or just want more information or check cancer rates in your area you can find all the information advice and help you need here. www.beatingbowelcancer.org

**********************************************************************************

No Apologies

I don’t apologise for feeling sorry for myself over the last week or so. I can’t pretend things haven’t been difficult. But at the end of the day I have to be grateful that it’s only me that’s affected. I’m always considering whether I’m writing to share my experiences, or just to burden my self pity on someone else. I think it’s every bloggers greatest fear that they are sharing too much information, giving too much away, and questioning the reasons that they are doing it. There is no doubt that it’s very cathartic, but that’s for my benefit, no-one else’s.  As is always the case, if I take a step backwards, have a look around and focus on other peoples problems rather than my own, then things don’t seem so bad after all. Nobody is dependent on my feeling well in the morning. If I don’t feel like getting out of bed, I don’t. Nobody is relying on me cooking a meal in the evening, if I don’t feel like eating I don’t. Nobody is wanting me to listen to their problems, I don’t have to make arrangements for others when I go into hospital. I don’t have to put on a brave face for anything or anyone, nor pretend that everything is ok. So I’ll make the most of my solitude and think of all those people who have no choice but to put on a brave face for the sake of others, no matter what their burden is.

It’s good to see the sun out, even though I’m not in a position to get out and make the most of it. Apart from an abandoned trip to the local village, I hadn’t been out since I last got home from hospital. That is until Saturday, when my brother and his wife came to visit. Steve is my elder brother, and I had not seen him or Jenny for a few years. The only time we ever seem to meet is by the Cider Bus at Glastonbury, that is when they can organise themselves to get tickets. Not quite as committed as me. We drove what would normally be the short walk along the old railway line to the local pub (no we didn’t drive on the railway line), three times the distance by car, but there’s no way I could have managed the walk. The venue was chosen purely on the basis that I knew it served soup. Todays choice was tomato & vegetable or pea & ham ? I didn’t really feel like eating at all, but chose the latter. It was the thickest pea & ham soup I’ve ever seen. Perfectly delicious, but I could barely manage half a bowl. I seem to be intolerant of any food at the moment and once again the weight is falling off me. They weighed me when I was in hospital last week, so I know that in just over a week I’ve lost another 6kg. Even I know that’s not good.

And so tomorrow I’m back in hospital for a few days. More tests and investigations, which hopefully will provide more answers. I’m hoping they can make me feel a little better than I do at the moment. The plan is to have another look around my colon, the areas they’ve not been able to get to yet. Identify just what those ‘hot spots’ really are. I’m not afraid of what they might find, I’d rather have answers than unknowns. I’m sure there’ll be more scans and x-rays. The bruises on my arms have died down, so they must be ready for more needles, I hope this time my veins are a little more accommodating. All being well I’ll be home again on Thursday by which time there should be more of a plan as to what happens when they go in for the big one in 2 weeks time. Then they’ll be ripping the bloody tumour out. Well I hope they’ll be a little more exact than ripping, but you get the idea. I somehow feel that all the time it remains inside me, I’m fighting a losing battle. At least when it’s gone we can start the attack on the deposits it’s left around my body.

Once again you’ll find below, details of the Beating Bowel Cancer website. Please take a look, find out what you’re looking for, what the symptoms are, and what action you need to take. You might not need it now, but at some time in the future it might just save your own or somebody else’s life. It really is a cancer that can be dealt with so easily if found early enough. Don’t ignore the symptoms like me, how I wish I could turn the clock back 12 months, maybe if I had taken action this time last year I wouldn’t be in the position I find myself now. Maybe that extra few months might have made all the difference. Instead I’m now dealing with advanced bowel cancer, having spread to my liver and lungs. Don’t let the same happen to you.

*********************************************************************************

If you have any concerns about bowel cancer, or just want more information or check cancer rates in your area you can find all the information advice and help you need here. www.beatingbowelcancer.org

**********************************************************************************

Feeling Guilty

And so I’m back on a very strict low fibre diet, absolutely no exceptions and it’s got to stay that way until surgery in April. The high energy drinks have come out again, as has the soup. I’m glad there was still plenty of the home made frozen variety in the freezer. They all look the same when frozen, so it’s pot luck as to what I get on a day to day basis. It’s good to have an element of surprise. One of the first things I did when I got home last weekend was to throw out what would normally be regarded as healthy foods; broccoli, cauliflower, sprouts, but that’s what I had to do, they’re not healthy for me at the moment. My diet restrictions were lifted towards the end of last year, although still advised to eat sensibly, veering towards low fibre foods. I pretty much stuck to that, but was obviously not enough in the end as my colon continued to shrink well after the end of radiotherapy.

The large intestine, or bowel is a complex and delicate organ, not one that we think of much on a daily basis. But considering the amount of work it does (it’s moving and working constantly) it gets very little credit when talking about major organs of the human body. When things go wrong however, the consequences are pretty devastating, and it certainly is not reacting well to the stent that was put in last week. Despite medication to slow it down, and pain relief drugs, I’m finding it difficult to keep on top of the pain. I’m trying to be positive, but to be honest I’m finding that very difficult at the moment. I’m not worried about the diagnosis, just don’t like being ill, and for the first time in ages I do feel ill. I’m receiving words of encouragement and advice from all quarters, and I’m beginning to get quite irritated by it all. As if I’m not trying, not trying to be positive, not staying focused. I know everyone means well, and it’s my attitude that’s at fault, but at the moment I’m really struggling. Admitting that makes me feel really guilty. Now I’m feeling guilty for being ill ! Cancer head is taking over again, totally irrational thoughts.

As I get towards the end of the week, I can’t help wishing it was next week already. Despite wanting to get away from hospital last week, now I can‘t help but look forward to  a few days in hospital. It somehow takes away any concerns and responsibility I have. I don’t seem to have any control at the moment anyway, so handing it over to someone else for a few days isn’t really a problem. Somehow it’s reassuring to be able to speak to your consultant every day, get an update on how things are, why I’m feeling like I do, even if he only seems to bring me bad news at the moment. I wouldn’t feel guilty about lying in bed all day. I’m a bit anxious about what more they’ll find when they have a look inside me next week, if they manage to get past all the obstacles in the way. The one thing I have learned is that you don’t wait for results when you’re an inpatient. It does away with the long in-between period waiting to hear what’s been found this time.

Reading back, I realise I’m rambling. It’s a reflection on what’s going on in my mind at the moment. Not sure what to think, what direction I’m heading. I’m finding it hard to fight back, don’t seem to have the energy to put up any sort of resistance. I’m hungry, but couldn’t face a morsel of food. I realise I’m at a pretty low point, I know things will get better. I’ve had my share of bad news for the time being, so it must mean that good news is just around the corner.