Looks Like We Made It

As I write this chapter of my Cancer Journey, I realise that it has only been 14 weeks since I started it which is no time at all in a normal life. Unfortunately having cancer is anything but “normal” and as I found out it becomes your everything. As those of you who have followed me on my journey, at times, it has felt deep, dark and never-ending.

I’m now in to the eighth week of my recovery, post-treatment, and it has been everything my medical team said it would. The first three weeks were really crappy as the RT really kicked in (or kicked out of my system) but since then things have got gradually better with all my normal facilities and functions starting to return. As I write this, the only things I can’t taste are spicy foods or alcohol! I know they say that cancer is life changing but I thought I’d be able to hang on to my curries and the odd cold refreshment. Fingers crossed they both come back! Still low on energy but that will gradually build back up as I come more active.

The continued support from close friends and family has been fantastic and a key factor in my recovery. Knowing you’ve got people on the sidelines cheering for you is a great tonic and you feel very humbled, at times, especially when it comes from some unexpected and unlikely sources.

So where am I now? Well, I had my first post-treatment review last week and my consultant is extremely confident that the cancer has gone. I didn't get the “camera down the throat” bit as there’s still too much inflammation but there’s no sign of it on my tonsil. The tumour on my neck has almost gone and from his examination he believes the cancer has as well. This is great news and you can't imagine the relief it was for Karen & I to be told this. Yes, I’ll now have to be closely monitored & assessed for a five-year period but I can live with that.

What’s life going to be for me now? I haven't a clue! Your focus during treatment & recovery is on each day and living in the here & now. I haven't been capable of thinking ahead and even with the good news we’ve had I still can’t. A lot of dust has still to settle and where and how it lands will determine what I do next and when. What I do know is that Karen & I are now heading off for a well-deserved holiday to relax and catch up on “us time”!

I’m sure my experience will have had an impact on me as I’ve found out a lot about myself and what and who’s important in my life. Whilst I’m mightily relieved to have come through this experience I’m also quiet positive about what the future may hold whatever that will look like.

In the meantime, as we’ve said many times before, thanks for all your help, support, and encouragement. It was great having you on the team. You all played a blinder!

Craig and Karen

Are We There Yet?

Well, there it is, I’ve, at last, completed my cancer treatment. Afraid, it wasn't a case of time flies when you’re enjoying it! It was the longest and most difficult six weeks I’ve ever had to face in my life. 

I know in previous blogs I’ve gone on a bit of how tough it’s been but unless you’ve gone through it, you just don't appreciate what’s involved and how you and your body will react and respond to it. I shared my experiences with many of my brave fellow patients I met at The Beatson who all echoed the same. Nothing prepares you for it.

I’m not going to bang-on or brag about my treatment but one bit of advice I would give is if you ever have the misfortune of having to undergo cancer treatment then do try to speak or link up with someone who has. They will have a better understanding than anyone within your family and friends of what you’re going though. Just knowing that what you’re feeling is normal can be tremendously re-assuring & encouraging. Also do make use of the various support groups - MacMillan, Beatson Charity, Maggies - that are available. I know It is hard, at the start, to acknowledge and talk about what's happening to you esp. to a stranger but once you do, a weight’s taken off your shoulders and you find another team of people there to help you when you need them.

Whilst getting to this stage seems a great achievement I’m actually only part way through the journey. I’ve got another 4 to 6 weeks recovery followed by a further scan later in the year to find out if the treatment’s been successful.

I had hoped that the last couple of weeks of treatment would be incident free as I was only having daily RT. Unfortunately, this didn't quiet work out that way as I had an unexpected 3 day stay back at The Beatson. The pain from the treatment was getting so severe that I was unable to swallow and consequently eat. I went in with the possibility of getting fitted with a feeding tube however we managed to avoid that by increasing the level of my pain-killers. Now on a daily dose of morphine which has helped to keep things in check and allow me to eat. Working ok so far.

I also had a blood transfusion when I was in as they found out I was slightly anaemic — again, another side effect.

First week of recovery now over and, it’s fair to say, I haven't felt as if I’ve recovered or even started to. If anything, the pain, at times, has been worse than during treatment. I was warned that things could get worse for the first couple of weeks as a result of the build up RT in my system over the 6 week period starting to work its way out. The one good thing about this is that it’s still working to fight the tumour, as well, so I shouldn't be that ungrateful.

At the end of the treatment, my team seemed happy with my progress which is a positive even if I felt like s***e!

So what’s next? Well, I will hopefully recover, get back to some sort of normality,  and try and enjoy a wee bit of whatever summer we get. Will also try to catch up with all the friends who have supported me over the piece — because of all the side-effects, issues, etc I haven't been able to see or speak with many of them. Won’t worry about what might or might not be awaiting me in later months. No point, I can’t control it and whatever it is we’ll deal with it then.

I’ve enjoyed writing the blog — has made me think a lot more about me as a person on various levels — and hopefully you’ve enjoyed reading it. I’ll continue to update it and share with you how and where the rest of the journey’s going. In the meantime, thanks for all your support and encouragement. It helped to got us though some dark times.

Craig & Karen

Make Sure You Can Practice What You Preach

Since I started sharing my and writing the blogs many people have commented on how brave I am to go through what I’m going through and also for sharing it with others, many of whom do not know me.

For those who do know me, I don’t think brave would be one of the three words you’d use to describe me. Also. I’ve never regard myself as brave. Either because I can be a bit of a “woos” when it comes to tough things or I’ve been fortunate in life not to have had to face too many.

This however, got me thinking about what or how you need to be when facing in to tough challenges. For me, I came to the conclusion that being brave is about enduring or facing danger without showing fear. It’s when you have been given a choice and make a conscious decision to act in a certain way or take a particular course of action. I unfortunately didn't have a choice either with my diagnosis and treatment, so I haven't felt that I needed to be brave in facing what I’m going through, in that sense.

Don't get me wrong, I’m not trying to trivialise what I and many others are having to go through, it’s just that I don't see myself as being brave. Others may see it differently. I’m just doing what I think is needed. 

So if I don’t need to be brave, what do I think I need to get through tough times where I have no choice or options?

I think, “courage’ is probably a more appropriate term, and I see it as “ having strength in the fear of pain or grief.” Once you know, more or less, what you’re going to have to face and you know it’s likely to be tough then you need to draw on whatever strength is required to get you through it. 

It’s quiet ironic then that it’s taken some comments from the blogs for me to reflect on what I really need to get me through this challenge. At the start, my initial positivity was based on the fact that I viewed the treatment simply as a process. I was fit & healthy, and, if I just focussed on getting through it then things would be fine. I remember telling people I could do this all by myself, more or less. Did I really have courage?

Unfortunately, the reality has been much different particularly over the past week or so. I’m afraid, I either under-estimated the intensity of the treatment or didn't show it the necessary respect. Probably a bit of both with words like arrogance and naivety, coming to mind. At the start of my journey, I must admit I didn’t think I needed to have all this emotional stuff in my kit bag but how wrong have I been. 

For those of you who have been following the blogs you’ll know that the treatment, so far, has been a bit rubbish and over the last week or so it has got a lot tougher. As one of the RT team said to me “we’re knocking the crap out of you each day, so no wonder you’re feeling a bit down!’

My weakness, I feel, is that I have viewed the journey as some sort of personal crusade and when things have not gone to plan or expected I have let them sap my energy and emotion. I, therefore, haven't had the necessary courage to get through it or ask for the help I might need. I have, at times, been a bit fearful of the whole thing.

It’s fair to say, I haven’t been using the full support of my team at The Beatson as much as I should have and shared with them how I’m feeling and doing. As a result I’ve been doing more worrying and heavy-lifting than I’ve needed. These guys are there to support me and know all about cases like mine and the “in’s & out’s”. 

Thankfully, my approach has now changed and I have started sharing with them how I feel, what’s hurting, etc, and let them come up with solutions or re-assurances rather than me struggling on my own and using up too much emotional energy. This has made me feel much better and more positive about getting through the rest of the treatment. A painful lesson learned.

So what has been the big learning for me, then? Well, when you’re faced with any big challenge in life, be as honest as you can be. Are you really ready to take it on? Is your way the right way? Know and admit your limitations & weakness. Seek out the right support at the outset and keep this with you for the whole journey. Things like this can’t be overcome on your own. You need back up.

As far as writing the blog, I’ve no worries about sharing my world with others. It helps me, as this one shows, & it might help others. If nothing else people get to find out how much a “drama queen” I can be and see a selection of my pyjamas!

I thought I’d wait until I had a 2nd Chemo session so I could bring you up to date with all the fun and antics I got up to. Afraid nothing major nor funny to report. The team got the anti-sickness medicine sorted, I was more relaxed as I knew what to expect, and I peed for all that I was worth. So far, no repeat of drama following the first episode which I’m really pleased with but disappointed I couldn't bring you some more funnies.

So that’s the 4th week almost finished with all the Chemo behind me. Just got my Radiotherapy for another couple of weeks to focus on. The challenges I now face are the cumulative effects on my body and immune system, managing the side effects so that I keep eating & drinking what I need each day, conserving my energies so I’m as fit as I can be for the treatment, and leaning on my team when I need them.

Finally, the last pyjama snap got a great response so here’s another one to keep some my admirers going till the next blog.

As always, thanks for reading alongwith all your encouragement and support.

Craig & Karen

Isn't That What Friends Are For?

There’s a MacMillan Cancer poster displayed at my local underground station which says

“No-one should face cancer alone”. It’s probably been there for a while but it’s only since I was diagnosed and my treatment started that I’ve really noticed it.

Every-time I see the poster I reflect on it but come to the same conclusion that surely anyone going through cancer or any other life challenge doesn't face it alone. I suppose, however, it must happen otherwise there wouldn't be a poster.

What I’m probably struggling with is that in our social media age where we all collect “friends” on Facebook, “connections” on Linkedin, and “followers" on Twitter we can't be alone provided we chose to reach out to them. Surely all these people who are our friends will do what friends do  - provide what support they can.

During one of my early personal challenges - being made redundant for the first time - I was given a good piece of advice - I would find out how many real friends I actually had. This was bang on and every other challenge I’ve had to face since then has brought a similar experience.

Karen & I actually talked about the possibility of no-one reading the blog or responding to it but we felt that it was important to us regardless. As I’ve said before the response and support has been fantastic but with all these challenges there are some “friends” who we haven't heard from yet.

I know a number of people who have contacted us had anguished a bit with it because they didn't know what to say or were worried they would say the wrong thing. I totally understand this but you should let your friend make that call. They'll know how awkward you’ll likely feel but that's nothing compared to what they're going through. In our social media age a simple like, share, comment, text, or two-line e-mail can turn what might be an awkward situation for you in to a great lift for your friend by just knowing you're thinking of them. That’s all they will want & need from you.

Therefore, there should be no reason why anyone should face anything alone. So, if you have a friend who you know is facing a tough time then let me know you’re thinking about them. It's what being a friend is all about. Don’t wait, make excuses or assumptions.

So how’s the treatment going? Well, it’s just been Radiotherapy this week. For those of you, like me, who had no idea what Radiotherapy was, it was described by my consultant as a having a “big X-Ray” everyday but a bit more intense. I mentioned before that it would start to have its moments and they’ve kicked in big style this week The good news is that I’m experiencing all the expected ones. The bad news is that they still make you feel s***e! So what have we had so far?

• Fungal mouth infection - not able to really eat or drink for a couple of days  
• Ulcerated mouth -  makes brushing your teeth absolutely agony
• Dried up saliva glands - have a mouth that constantly feels a bit like the proverbial ……
• Hearing impacted - ringing in the ears & struggling a wee bit with quieter sounds.

Good news is that I’ve got stuff to fix most of them and the hearing should come back after the treatment finishes. 

Have still got some good energy.  Been running a few times and got back to some easy Yoga classes. Banking all these at the moment as things might change over the next few weeks.

Thanks to everyone impressed with the Treatment Calendar. A number of you were disappointed that I didn't “art it up," so here’s something to make up for it!

Craig and Karen

Ain't That Enough?

Well, we finally got things started on 12th May, five weeks after the original cancer diagnosis. It had felt like a lifetime and I was really keen to get the treatment underway, however if you told me how the next 48 hours were to turn out then I might not have been quite so enthusiastic.

In my previous blog, I promised that there would be some bumps on my journey however I hadn't expected them to happen quite so quickly.

Tuesday was a long day. Things kicked with off with a Radiotherapy session around lunchtime and ended around 4 a.m after a 12 hour Chemo bash. It was a daunting experience that, not surprisingly, left me a tad tired and emotional. Afraid the fun didn't stop there and I had another Radiotherapy session at 8 a.m before being finally discharged around 10 a.m. Was I glad to get home!

Things, however, didn’t really improve from there and despite taking my anti-sickness medicine, I started to feel unwell - extreme nausea & indigestion. Not much food or sleep was taken that day

By the Thursday things had got progressively worse, despite being given new anti-sickness medicine. The situation escalated to the point where in early evening I was lying prostrate on the bathroom floor in pain and starting to be violently sick. Karen, rightly, called the Paramedics. For those of you who know me, I can be a bit of a “drama queen” at times but this, I’m afraid, was the real thing.

They recommended getting a GP out rather than a visit to A&E. As I didn't fancy getting in to the back of an ambulance and spending a few hours on a trolley I plumped for the GP. He came out, gave me something for the pain and nausea and I finally fell asleep around midnight.

On Friday, despite being in a “helluva state” we went back up to The Beatson, got my medicine changed and I have since started feeling better.

In comparison, the Radiotherapy, so far, has been a walk in the park but I expect it too will have its moments along the way.

It’s not all been doom and gloom and here’s one of the funnier moments so far.

Picture the scene, a very nice nurse is talking Karen & I through the Chemo process and setting me up for my first IV. I’m listening but probably in the “typical guy” way i.e. not really. Apparently she is reminding me of the importance of my renal system working throughout the process and that it would be monitored by regular collection and analysis of my urine. So basically I had to pee as often as I could for the next 12 hours, collect it in sample bottles and leave for the nurses to do their stuff. I had the added challenge of attempting this whilst being strapped to an IV stand and the toilet being a 30 feet shuffle across the room.

At the end of my first IV I had a sample which I was pretty impressed with. Unfortunately the very nice nurse wasn’t. She told me in no uncertain terms that I had to pass all the fluid that was going in to me before she could even start the Chemo let alone finish it. At this point I said I could have provided the full amount with my first sample, but thought I only had to fill one bottle!   

She then asked me what I did with the rest! I explained that I had stopped mid flow, put the sample bottle down and then carried on peeing, all with one hand! By the look on her face she seemed impressed by this however it which wasn't quite the same look on Karen’s! Before anyone asks, I won’t be applying for the next series of “Britain’s Got Talent”!

The response to the blog has been tremendous. We’ve had tons of support and encouragement from far and wide. Thanks to everybody who has read, commented, and shared. It means a lot to know that people are rooting for us.

I forget, at times, that it’s not all about me and others are also doing some of their own heavy lifting. Karen and our respective families are going through this too, so I’m really touched and appreciative of the support and encouragement they are getting from their friends. I know that it really helps them.

So, all in all, an eventful week but it’s the first one ticked off on the journey, which is great. At no expense whatsoever we have knocked up our own Cancer Calendar to tick off the days until 22nd June. I did suggest doing an artistic pose to brighten it up however Karen, rightly (?) put her foot down so we’re left with my “Blue Peter Special”. Hopefully you’re all impressed!

Thanks

Craig and Karen

And I Ask Myself - "How Did I Get Here?"

Ever imagined being told you’ve got cancer? Me neither but at the beginning of April I was!

Just six weeks earlier I had popped along to my GP thinking I had a boil in my neck and then found myself being fast-forwarded through a series of scans, biopsies, & exploratory operations, to finally  end up sitting in front of a Consultant being told I had tonsil cancer and my boil was in fact a tumour. It all seemed a bit surreal at the time but unfortunately has now become somewhat real.

Apologies, I should have introduced myself. I’m Craig, aged 54, and live with my wife, Karen, in Glasgow’s West End. 

Last year, after a life-time in banking (it certainly felt that way towards the end), I took the opportunity to leave and set up my own business. Karen had done something similar a few years earlier. Having worked for over 30 years for large corporations I wanted, and needed, to do something different. As a couple, our approach to life has very much been “let’s do it now” instead of waiting until “we’ve retired, got enough behind us, or worry about what others might think” sort of stuff. 

So why then have I decided to write a blog about my cancer journey and share it with you?

Well, it’s fair to say we didn't see this one coming and it knocked us for six a bit, especially at the start. We have no experience of cancer amongst friends and family so don’t really know what we’re about to face. We know all about the treatment stuff - 6 weeks of Radiotherapy and Chemotherapy, the side effects, the success rates, etc but don't know how we will be either as individuals or a couple. There’s a bit of trying to capture what we go through — hopefully lots of good, possibly a bit of bad, & likely some funny.

I know I’m not the first or last person to have cancer but hopefully if you can join me on my journey you’ll find my ramblings amusing, interesting and maybe even helpful. Things kick off on 12th May when my treatment starts. I do hope to see you on this road I’m about to travel. It’d be great to have your company.

Craig and Karen