Peaks and Troughs

I knew I shouldn’t have mentioned the Nolan sisters. I can’t believe the amount of traffic it attracted from people entering the term in search engines. Imagine all those people hoping to find something about the Nolan’s only to find a blog about bums. It’s easy for me to joke of course, but it’s a cheap joke. Three of the sisters have suffered from breast cancer. It’s bad enough when anyone gets the dreaded cancer diagnosis, but three sisters ! To have to cope with it when in the limelight as well must make it twice as difficult. To their credit they have used their celebrity status and experiences to promote breast cancer awareness. To go on TV when you’ve lost all your hair, and probably feeling crap, takes some guts, at least the rest of us can go home and shut the door behind us. I wouldn’t normally have mentioned it, but seeing the Nolan’s seemed like a light hearted way of opening my blog on what was after all, not a particularly good news day. It’s certainly not unusual to see celebs at The Christie, there are many household names doing great work to raise funds and awareness for the hospital. Many have been treated there, and sadly, some have passed away there, including one of my all time hero’s, Mr Manchester, Tony Wilson, who died from renal cancer in 2007. Notice boards around the hospital are adorned with  letters of thanks from grateful famous ex-patients. Yet again it’s a reminder that cancer has no respect for status, wealth or creed.

I have been a little quiet this week, maybe just trying to get my head around everything that’s going on. Just as I think I have, it all changes again. As usual after a period of calmness, everything goes mad and I’m now faced with trying to fit in a number of appointments at two different hospitals at the same time ! I’ve spent most of the morning trying to sort it out and trying to get yet another CT scan arranged before I see the liver specialist. It’s not just getting the scan arranged, but making sure there is time to get them processed before my appointment and for the MDT meeting that takes place on the morning of the same day. Not a criticism but it’s hard to get hold of specialist nurses whilst they are working, messages left on voicemail, and waiting for them to get back to you. Not helpful when you’re trying to get everything sorted before they all go home for the weekend. I’m reluctant to say too much at this stage because I’m not really sure about it myself, but there appears to be a little more going on than I was first led to believe. A lesson perhaps in not blogging about something before I have it in writing. Peaks and troughs, highs and lows, swings and roundabouts – whatever way you look at it, it does your head in.

I couldn’t have chosen a worse week to try and stop smoking. I’m in no doubt that this is what I need to do considering the major surgery I’m facing in the near future. I attended my first cessation session at The Christie on Monday. The first three days were encouraging, armed with nicotine inhalers I managed to cut down my consumption dramatically. I was convinced it wouldn’t take me long before stopping altogether. Today is a different story, back to square one. As soon as the stress kicks in the tobacco comes out, and today I’ve smoked more than I have for ages, very disappointed. I’m sure I’ll be back on track soon, I know I have to.

I’ve also been considering getting another tattoo. Thought I never would, but the urge is becoming too strong for me to resist. I know what I want, just got to decide when I want it doing. I may have to leave it for a while though. I know the chances are small but I don’t want to risk any infection, and it might just serve as a reward for myself when I come through all this. One thing for certain though, I won’t be getting it done at this place.

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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

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The First Shoots of Recovery

If I tell you that the highlight of my day on Thursday was seeing two of the Nolan sisters at The Christie, then you’ll probably agree that the day wasn’t that good. I thought I saw one of them in the waiting area whilst I went to give more of my blood for yet more testing. I did the double take thing, but decided no, it can’t be. She looked like the one on This Morning, so it couldn’t be her, because she’ll be on This Morning at this time of the day, surely. 10 minutes later there were two of them walking down the corridor towards me. Don’t ask me which two, but possibly the one who IS on This Morning, although obviously if it was that one she wasn’t, if you get my drift. If it was, then she certainly looks better in real life than she does on TV.

Thursday was supposed to be D-Day, or decision day. But it didn’t turn out that way as will become clear in a few minutes. It was the day I would see Mr. S, the consultant surgeon, to find out how effective my treatment had been, results of scans, blood tests etc. As I said to my kids, who were the first people I phoned after my appointment, it wasn’t about good news and bad news, more about positive and negatives. I think I prefer to look at it that way. The worst kept secret is, at last, out. I am now officially a stage IV cancer sufferer, or to put it another way, the cancer has spread to my liver. Previous diagnosis had staged my cancer as stage III or IV i.e. there was some doubt as to whether the cancer had spread. We can now confirm it has. Recent scans have confirmed the presence of a small tumour on my liver.  That’s the negative part. On the positive side, it’s a small single tumour and is not attached to any major blood vessels, and as a result it is operable. The liver specialist believes he can deal with it by liver resection, or to put it another way, he can cut it out. Mr. S is now waiting to hear from the liver surgeon to see if they can operate at the same time. Another positive, both operations can be done using laparoscopic (keyhole) surgery. Between them they might decide it’s best for me to recover from one surgery before embarking on the other, although I have to admit, it would be nice to get them over at the same time. However, I’ll have to leave that decision to them.

So that’s the secondary tumour. The primary one, in my bowel, has been reduced in size by 50% thanks to the radiotherapy. I had hoped that it might have disappeared altogether, but I guess that was hoping for a little too much in the circumstances. Mr. S is happy with the reduction, and, another positive, he is confident that the planned ileostomy will be reversible at some point in the future. Effectively the two ends will be joined up again once the bowel has recovered from surgery. However ! The recent PET CT scan has highlighted another area in the bowel, this time higher up in the transverse colon, that is raising some concern. The scan is designed to show areas of abnormal blood supply or ’hot spots’ , and so I will be undergoing a further colonoscopy to investigate this further. It doesn’t mean there is another tumour, or even that the area is cancerous but it needs investigating before surgery can proceed. The original colonoscopy I had was unable to get past the primary tumour, and so I’ll be going through the procedure again so they can have a good look round. It may be that these ’hot spots’ are just polyps (pre-cancerous growths) in which case they can be removed during the procedure, or further biopsies taken. Either way, the colonoscopy should provide answers.

It’s more than likely, due to the spread of cancer to my liver, and the probability that this was through my lymphatic system, that I will require some kind of further treatment after surgery. Maybe more intensive chemotherapy, biological therapy or some other form of therapy. There are many new treatments available, particularly for treating metastatic bowel cancer (secondary bowel cancer that happens to be in the liver, i.e. this is NOT cancer of the liver), but the decision on this will not be taken until after surgery when a full histopathology examination of the tissue can be undertaken. All in all, a very informative morning. Certainly a lot of information to take in, but I think I’ve got my head round it. I was quite prepared for the news on my liver to be worse than it actually was. That may sound strange, but metastatic tumours on the liver are quite often in clusters, and can also be inoperable due to their attachment or closeness to major blood vessels. So I have good reason to be positive about the outcome. Still a lot of decisions to be made, but I’m looking at all the positives that came out of today’s meeting, rather than just concentrating on the negative aspect of the unwelcome spread of the cancer. I’m grateful to both Mr. S and colorectal nurse specialist Becky who took the time to explain everything to me in detail, and ensure that my many questions were answered before I left the hospital. I never expected this to be easy, and although the goal posts have moved slightly, I’m still in a kicking mood and have been practicing both long and close range shots.

I had expected that surgery would have been completed before I saw the first shoots from the bulbs I planted last year. I hadn’t taken into account the unreasonably mild final 3 months of last year, nor the delays in progress of my treatment. Regular readers will know that I was a little concerned that recent snow had thwarted my attempts to produce colour in my garden. I needn’t have worried. Most of my garden was covered with tarpaulin during the recent snow, but one section I was unable to protect, and so has been under 4-5 inches of snow/ice up until the thaw earlier this week. It’s reassuring to know that mother nature shines through even under the most adverse  conditions. I’ll be taking great inspiration from that tiny flower, together we’ll grown strong and be blooming again by the time summer comes. The first shoots of recovery.

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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

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Second Thoughts

I could not let the day end without some form of explanation regarding a blog entry I posted, and subsequently deleted, earlier today. I have been thinking for many hours as to how I can rectify the situation, and the truth is, I can’t. The first part of the blog related to a comment somebody had made Monday evening. At the end of a long and stressful day I reacted wrongly to it, voicing my opinion without giving readers the opportunity to understand the history of the person behind the comment. My comments were not intended as personal, although looking back I find it hard to justify that statement. My aim was to draw attention to the importance of diet in cancer prevention. I failed miserably. What I wrote was both wrong, and more importantly, hurtful to the person concerned. What makes it worse is that this person is a fellow cancer sufferer, unfortunately with a terminal diagnosis. I cannot excuse my comments, they were out of order. Not only did I offend the person concerned, but I fear other followers of my blog. I owe them an apology too. I hope by reading my blog you will have come to the conclusion that it was out of character. I should have taken the time to consider the implications of what I was saying. Had I done so, I have no doubt that I would have come to my senses and deleted the entry before it was ever published. I don’t want to draw attention to the incident any more than is necessary. The victim in this horrible episode has demonstrated just how wrong my comments were, and how strong he is, by accepting my unreserved apology. For my part, I’ve only brought shame on myself and cast a shadow over the immense courage people show when fighting this awful disease.

For the record, the second part of deleted blog entry continued as follows….

On a more cheerful note, even if only slightly more cheerful, my MRI scan proceeded as planned. It took rather longer than I was expecting, and required a bit more of my participation that I am used to. All in all it took about and hour and a half by the time I was ready to leave. The scan, or series of scans, required lots of periods of me holding my breath, from anything between 10 – 15 seconds. By the time you have done this a dozen times, 15 seconds seems like an eternity. All the instructions were given via headphones, you’re alone in the scanner, and the contrast dye was administered by machine. Not had this contrast before, and it was certainly strange, and a little uncomfortable when it was pumped into my body via the cannula in my arm. After one series of breath holding the next instructions came over the headphones to me…

‘the next part will take about 5 minutes’

Blimey, they don’t expect me to hold my breath for 5 minutes do they? Thankfully not, the next part of the scan would take 5 minutes, and I could breath normally. Phew !

During a short break in the middle of the scans, whilst the contrast dye was making it’s way to my liver, I enquired as to whether the scan had been marked as ‘urgent’?

A silence followed…

I added that I had an appointment with the specialist on Thursday, and wondered whether the results would be ready by then? They’re always careful not to give too much information away, but eventually the reply was ’yes’ the results would be ready either Tuesday or Wednesday. I think that answered my urgency question.

When The Blogging Ends

A sudden loss of optimism came over me the other day. The glass that was always half full had a little leak in it. You get a phone call, and all of a sudden logic leaves you. Your cancer brain takes over as you imagine the worst case scenario. I slept on it, thought it through, and although I still came up with the same conclusions, this time I put things into perspective. There are a host of reasons as to why these extra tests had been requested, and at this moment in time I don’t have a clue as to what these reasons are. By the time I had finished rubbing the sleep out of my eyes on Tuesday morning, the hospital had phoned again, MRI scan booked, next Monday. Despite the concern over the urgency, it’s good that it’s happening so quick. No long wait for the scan. Just a few days, and it will be done. Letter of confirmation in the post. I hate having to wait for the postman, it involves watching This Morning and Bargain Hunt, and I can’t concentrate on anything until I know the postman has either been or passed. I suppose it keeps me fit, bobbing up and down, peering out the window to see if I can see him further up the hill.

The letter duly arrived on Wednesday, a bit more detail. MRI Liver with hepatobiliary contrast – Gulp ! I didn’t realise it was going to be that specific, thought it was just another look at my colon. Well I guess the ‘lesions’ on my liver have turned out to be something more than just lesions, or at least raised enough suspicion for more investigation. Out of all the things that went through my head on Monday, liver was not one of them. It’s going to be a while before I get the results from this new scan, and so I’ll keep the newly mended glass topped up, and make sure those cracks are holding.

Thursday was a day I will cherish for a long time, despite my protestations and attempts at postponing such a meeting, my baby sister made the flight across the Irish sea to meet me. She had flown into Birmingham, stayed at my eldest sister Pat’s house Wednesday night, and they both made the journey up to Manchester on Thursday. We hugged, we laughed, we took the piss out of each other, we looked at old photographs, and I tried to stop her pilfering things from my house. Spare a though for the ever suffering Clive who, as usual made this possible by acting as chauffeur. As we were leaving the house for lunch, I spotted the postman turning the corner, I saw the brown envelope in his hand, I could almost see ‘The Christie’ postmark. Pat jumped out of the car, collected my post, and I opened the letter confirming my date with my surgeon on Thursday next week. I’ll be getting some answers to the ever lengthening list of questions I have.  We continued to lunch, The Church Inn, Uppermill. There are few more scenic settings for a pub lunch, although sadly on this occasion we were nestled in the clouds, denied the spectacular views downwards towards the village, or upwards towards the local landmark, Pots & Pans, high above the Dovestones reservoirs. Lunch was gigantic, conversation was hilarious, and for a couple of hours there was no time to worry about anything other than who was getting the next round.

We returned home, I’m sure far later than Clive would have wished, bearing in mind the impending journey down the M6 to Birmingham, especially with my little sister nagging and moaning in the back seat. Silly photographs, more pilfering and more hugs and it was over. It was great to see little sister looking so well just 18 months after her own cancer nightmare. If I can stay as positive as her, half my battle is won. Lovely to see you Lizzy, and thanks for the lighter .

It really couldn’t have been a happier day, not even concerned at the lack of internet access whilst we were at lunch. When everyone had left, and the laughter was over, I logged on. The message I received was unexpected, my reaction to the message was equally unexpected. There is an anonymous, yet close, online community of bowel cancer victims. We exchange messages, swap experiences and support each other where we can. There is no better advice than from someone who has already been through the experience you are facing. None of us really know each other, yet we share experiences that no-one else could ever understand. We can talk about things that even the closest of friends wouldn’t dream of. Thoughts and fears that are embedded deep in your head, can be read, comfort and advice is returned with such sincerity that its only found in the closest of relationships. Lisa was one of those anonymous people. Despite being in the final stages of terminal bowel cancer, it was rare that you heard of her ordeal, but she would be the first to offer support to those of us trying to find our way through the early stages of the disease. She was always thinking of others, and if you did hear of her personal life, it was her concern for her two teenage children. The message I received when I logged on, was to advise me of Lisa’s passing away the night before. I couldn’t believe it, it had been a happy day. Lisa had been tweeting just a few nights before. I logged onto her blog, the blog I had read from start to finish, the blog that I had gained so much strength from. She had sent me messages when I had appeared down. Encouraged me when treatment was rough. Inspired me when I was seeking direction. The final entry on Lisa’s blog confirmed what I had been told in the earlier message. I cried for someone I didn’t know, yet I cried for someone who knew me so well. You know the fight is over when the blogging ends. RIP Lisa xxx

Below is the final entry in Lisa’s blog.

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Thursday, 9 February 2012

To all friends and family

Sadly, Mum passed away last night. She was at peace and we were with her. Thank you all for supporting her,

Karys & Phoenix

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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

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If No News Is Good News…..Here is the News

Monday morning I woke up to find a large cut and bruise above my right eye. Well I’m sure it was there the day before as well, I just didn’t take too much notice of it. The swelling has made the small cut appear larger, but it still hurts. This is as a result of walking into an open cupboard door in the kitchen, something I do quite regularly. Three times in as many weeks in fact, and I have the scars at various points on my head to prove it. I should have taken this as a warning as to what was coming, as each of the cuts have got lower and lower. I also walk into tables (just catching my hip on the corner), lamp posts, parking meters, door frames, in fact I’ll quite happily walk into anything, totally oblivious to the disbelief expressed by others who cannot believe you’re doing this, when the object is right in front of your eyes- well actually usually a little to the right of my eyes. Rarely do people stop you in time, because obviously, you’re not going to do it, you’re going to see it in time! I remember one of the first times I went out with M, we walked out of a Manchester hotel and I proceeded to walk straight into a lamp post. Somehow she still fell in love with me, and became my ‘eyes’ for quite a while after that, nervously guiding me away from such obstacles. I’m pleased to say that I’m not alone in this obsession with head butting solid objects, I share it with my sister. The cause? Well they used to call it ‘lazy eye’, but I hardly think that applies anymore as in fact the eye has gone to sleep permanently. It’s a defect in the nerve going to the brain apparently, not the eye at all. It prevents the eyes working together, and so inevitably, one of them gives up and stops working altogether. I don’t remember ever not wearing glasses (except for a short period in my teens when vanity convinced me I could see without them), and seem to have spent most of my early years with a patch on one eye or the other. Apart from walking into things, the loss of one eye really doesn’t cause too many problems. It affects judgement of distance, but your brain adjusts to be able to compensate (partly) for this.  In fact I could probably do away with normal spectacles and settle for a monocle, or half a pair of glasses maybe, but keeping them on might be a problem. In fact, despite the arm of my glasses ripping the skin off my ear, and the indentation made in my nose when I walked into to open cupboard door, the lens of my glasses probably saved my eye being badly damaged, preventing the corner of the cupboard door from piercing my eye. Small mercy’s.

In the overall scope of things, I can take a few bangs to my head. I have news from the hospital, and however optimistically I look at it, quite honestly, it could have been better.  Ideally I was hoping for a date for surgery, whereas I have been called back for yet further scans and tests. The MDT meeting took place Monday morning, where the results of my recent scans were discussed. The surgeons secretary telephoned me in the afternoon to advise me that a further MRI scan had been requested, yet another colonoscopy, and further blood tests to check the level of my cancer markers. I’ll be seeing the surgeon shortly, where I should get an explanation as to what’s going on, but reading between the lines, these additional tests would not have been requested if there was not further areas of concern. The secretary, obviously, would not comment when asked for the reason, but I’m guessing that recent scans have shown something that requires further investigation.

All the above is of course pure speculation on my part. On the one hand I’m glad that I haven’t been kept waiting for the results for too long, on the other, I wish it had been more positive news when I got it (even though I don‘t really know what the news is). I had prepared myself for all outcomes, and so took the news with some degree of calmness, although with a tinge of disappointment. It is perhaps harder passing on the news to loved one’s, who had been expecting a more favourable outcome. I could be completely wrong, these could just be more routine tests, just to be sure. But, it is what it is, and I will continue to put my faith in the medical team looking after me. I’ve said it before, and it certainly won’t be the last time, I could not wish to be treated at a better place than The Christie. This is all about belief. A belief that they know what they’re doing, and a belief that together we’re going to beat this bloody cancer.

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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

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True Grit

Today’s topic of conversation seems to be snow. We can’t stop talking about it. Tweeting, Facebook, TV, radio, snow is everywhere, or not, depending where in the country (or world) you live. There have been plenty of people busting a gut to report temperatures of 30° c upwards, how they’ve spent the evening swimming in the pool, when secretly they are hankering to be back in blighty to get out there and make a snowman. Here, on the edge of the moors outside Manchester, we had eight hours of continuous snow yesterday.  Considering the amount of snow that fell, I have to say the local authority did extremely well in their attempts to keep the roads open. My own road, on a hill, was gritted 5 times during the course of the day/night, although even that was not enough to satisfy some people. They seem to expect their own road/pavement/driveway/patio to be cleared regardless of what other priorities there are. At times, my road was only passable with 4×4’s, and despite cars being abandoned at the roadside, it didn’t prevent others trying to get up the hill on their rear wheel drive motors. I lost count of the number of cars that had to turn back, and by the time it got dark I was used to the sound of spinning wheels.

Most of the roads across the top of Saddleworth Moor have, unsurprisingly,  been closed and so this morning, with two pairs of thermals, trousers, waterproofs, 2 t-shirts, jumper, overcoat and wellies, I returned to the scene of summer photographs. I think the winter wear was a bit excessive, as I returned home sweating like…….like someone who had gone out with too much clothing. Anyway, I’m glad I went out early, because fog has now descended. Nothing spectacular, but I hope you enjoy the results.

You’ll find the rest of the photographs here

https://picasaweb.google.com/101001672850353526484/SnowFeb12#

And not a single mention of cancer………well just one.

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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

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The Optimist

Monday morning I made a commitment for the summer. Green Man Festival in August J I would not normally have to think twice about going to a festival, but this year is different considering I’ve no idea what the state of my health will be in August. I decided to be positive, and it’s something to look forward to and work towards. With no Glastonbury this year, and me cancelling Leeds, it will be 14 months since my last festival. I can’t recall a gap this long for years, certainly not this century. Green Man is not a festival I have been to before, and so I’m looking forward to the new experience. Set amid the Brecon Beacons, the setting sounds idyllic, and being an independent, green and pretty laid back set up, it seems a perfect substitute for Glastonbury, and sounds like the perfect relaxing weekend I might be needing by the time August comes around. I know it’s not the Vale of Avalon, but hey, I’ll make an exception this year. I’ll be going with Debby, who happens to live not too many miles away from the festival site. I wondered why she’d been banging on about it for the last few months. Deb loves nothing more than spending her weekends in the Black Mountains, and so she’ll be killing two birds with one stone (she’s always cruel to animals). I just hope she’ll slow down so I can keep up with her.

I’m not really bothered about the line up, it’s not really about who’s performing, although the acts announced so far seem to be hitting the right buttons. Particularly ’The Slow Club’ who I have been following for a few months now since hearing them on the radio. Really looking forward to seeing them play live. Other than that, I’ve learnt over the years never to make plans when with Deb, chances are we’ll never make it to the right stage on time. We spent one day at Glastonbury a few years ago where we didn’t  managed to see one band all day. I’m still not quite sure how we managed that, but it was a great day nonetheless – I think !

Do you like the title of today’s blog? I can’t claim a moment of inspiration, it’s the title of a track on an album of the same name (Turin Brakes). Another one of my favourite songs, and another one that brings back fond memories. I was listening to it again on my walk yesterday. After booking the festival tickets I decided to go out and think of summer. Not easy when the temperature was below zero, but at least the sun was shining.  The Optimist seemed a good title, bearing in mind my commitment to the Green Man. I’ve always tried to be honest when blogging about my illness, although sometimes this can overshadow the optimistic and positive attitude I have towards cancer. I decided at an early stage, even before formal diagnosis, that there were two ways of dealing with it, glass half full or half empty. You can usually spot which camp most people fit into. Some are burdened with cancer, focusing on the negative statistics that we can all find when researching the disease. Others, most of whom have more reason to be pessimistic, choose to concentrate their efforts on what they can do with their life rather than negative thoughts. I am immediately reminded of Stuart, the guy with the brain tumour and terminal prognosis, whom I met almost daily  whilst undergoing radiotherapy. I wish I had exchanged phone numbers, I often wonder how he is now. Statistics would point to a very bleak outlook for Stuart. But then again, there are lies, damn lies and statistics. It’s more about what you choose to believe, and what to put your faith in. In the last 6 months or so I’ve come across many diagnosed with stage IV cancer, still living with the disease 9 or 10 years later. Yes there has been a lot of medical intervention during that time, but I’m pretty sure each of them will tell you that a positive attitude has a lot to do with it.

I’ll leave you with ’The Optimist’ , a beautiful song. If you don’t know Turin Brakes, check them out also, wonderful acoustic guitar songs.

Turin Brakes – The Optimist

And don’t be fooled by the ending.

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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

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