Top Tips From My Experience So Far

1.  DEALING WITH THE INITIAL SHOCK Upon being given a terminal diagnosis, the initial shock, fear and mental agony will eventually subside and pass. Your mind WILL adjust and accept what is happening and you will be able to think, feel and relax again. You’re just going to have to ride this initial storm.

2.  WHO TO TELL AND WHEN Try to think carefully and quickly about who you are going to tell and when. I wish we’d waited at least 24hrs before telling anyone in order for us to have a chance adjust to what was happening. It is difficult because you will be panicking, but once the word gets out the barrage of well-meaning visitors, phone calls, texts and emails will start. You will become an instant celebrity and I can tell you now, as a private person (once upon a time) I wouldn’t want to be on. Once it the word is out, you will find it very difficult, in fact impossible to get time for yourself or your partner to start to adjust to what’s going on yourselves.

3.  GET EMOTIONAL SUPPORT AND ADVICE No matter what you think about how strong you are, you are going to need additional support and probably very quickly. Get it from where you can, the various cancer charities on the internet are fantastic for getting information and also for meeting people in a similar position, which will become more and more important to you as time goes on. Alternatively friends, family – although bear in mind they will be struggling with their own issues regarding what is happening, your local Doctor.

4.  USE THE INTERNET If you don’t know how to use the internet or are unwilling, now is the time to get over it and learn. There is boundless support and information out there, think of the internet as the new Village Green or Park where people wander around, chat and help each other with their problems. You don’t have to tell anyone anything you don’t want to and from my experience I’ll again reiterate the point, you simply cannot and will not be able to do this on your own. You need the help/advice/experiences of those who are unfortunate enough to be a step ahead of you on the ‘journey’.

5.  ADJUSTING YOUR HORIZONS When you are able to you will need to reassess your future. There is no getting around the fact that all your dreams have pretty much just been wiped out. However, it struck me that there was little point becoming someone who dwelt on what now wasn’t going to be, that would simply serve to make me miserable. There was no way I was going to squander my remaining time by doing that! Try to think about what you can do, the fun things and the pleasure there still to be had in life. We advanced our wedding by a year, I got tattoos, we’ve had days out – Hawk flying tomorrow – and so on. Creating a blog, although this is therapy for me, information for others, hopefully help for some, this is also a way of leaving a legacy. You get the picture.

6.  MANAGING YOUR CANCER DRUGS IN PARTICULAR DEXAMETHASONE This has become huge and I’ve just realised it needs its’ own page! Please read it, this is incredibly important…

7.  COPING WITH IT ALL This is a hard one to write, also to explain to anyone who hasn’t been in this position. I feel utterly sh*t pretty much all of the time, for every good day physically there are at least 4/5 when I feel rotten. I regularly start a day with aspirations to go for a long walk with the dogs or a bike ride, then spend the day feeling so awful I can’t even get off the sofa. Anyone that knows me well is aware that I was never an Olympian, but I do miss going for a jog with the dogs and lifting weights in the gym. It’s dispiriting how rapidly I’ve gone downhill physically. I try my best but can be out of breath after a 200m walk now. People regularly enthusiastically invite me to do things which is fantastic and I am eternally grateful for their interest and encouragement and especially the fact that they care. If I said though that sometimes the thought of going away to do something horrifies me, I have to sit down for 5 minutes to get my energy back after brushing my teeth.

When I was first diagnosed although I didn’t need it at the time thinking ahead I applied for a disabled (blue) badge for the car. At first I resented using it and would urge Kady not to park in a disabled slot thinking I didn’t need it. Now I’ve accepted it’s for the best to use the parking as I get so tired so easily, emotionally I’ve felt like it’s almost an acceptance of defeat though and it was hard to accept. You don’t expect it having led a fit and active life and only just hit 37.

All of this has had a knock on effect emotionally. I try my best to keep my own morale up and to stay optimistic, but it’s hard. I guess I don’t always deal with it well as I also spend a lot of time biting down on the urge to get upset by it all, which of course makes it worse… I find as a result I get upset at random times, normally when a medical professional asks how I am and I don’t know why, but it just makes me break down. I guess old habits die hard and I continue to try to be a problem solver, the issue is I can’t solve this ‘problem’ and my frustration compounded by my physical symptoms eats away at me, I guess I dwell on it too much.

I’ve forgotten how to look forward to things because I try not to think about the future anymore, the idea of what it may or most likely holds scares me now, I try to keep my aspirations in the very near future now, for the moment I just want to reach Spring, this Winter has been awful. For most of my life it was always exciting to dream, now I avoid it. Instead I spend most of my time thinking about the past, which is not always good. I’m not afraid of dying, having spent 6 months constantly battling side effects though, what I am terrified of is when things go downhill and the pain and suffering that might lead up to death. The constant questions are ‘when will things go downhill’ it’s like constantly waiting for a bomb or IED to go off, the anticipation is sometimes unbearable. Also ‘just how bad will it be’. The idea of suffering months of severe neurological problems, limbs not working, blindness, deafness, complete paralysis etc. just terrifies me. I just want it all to happen suddenly and quickly.

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