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Top Tips in Managing Your Cancer Drugs – in Particular Dexamethasone

Now then, I went from being someone who before I started getting the headaches maybe took a couple of paracetamol a month, normally after a few sociables the night before. This is what I work with on a daily basis now:

You will no doubt have walked away from your first few days after being given your diagnosis with a prescription as long as Gandalf‘s  beard, I know I did! This is possibly the hardest thing you will have to manage, the Dexamethasone comes with the most horrendous side effects which to this day 5 months later, I am still managing on a daily basis. Of course it’s good because for me it got rid of the horrendous headaches I’d suffered for months, but what a price you pay for it – muscle wastage, swelling of hands and feet, fluid retention in the cheeks creating a fat face, severe and I mean severe constipation, uncontrollable appetite, weight gain, sleep pattern utterly destroyed which for me, no amount of sleeping tablets has helped with – I haven’t slept for more than 2 hours in a bed for 5 months, stomach pain, acid reflux, nervous mental energy, physical exhaustion. I’m afraid the list for me has been endless, anything you can do to ease this is going to help your morale.

The key to managing all the various side effects as well as feeling like you’re regaining some control over your own life,  as I found out through painful experience, was to sit down and read every leaflet, in every box of drugs. You need to understand what to take when, in what order, before or after food, separated by X amount of hours, morning, evening, four times a day, without dairy products – there are some funny ones in there! The list again is endless but you’ve got to get a grip of it and understand what you’re shoving into yourself, it’s to your own advantage.

If you don’t do that, then on top of dealing with everything else, you will make yourself feel physically very unwell, on top of any symptoms you were already getting. You’re morale will already be low, this will in turn make it even worse. The big one for me was to not take Dexamethasone after 12pm as mentally you will be turbo charged for 12 hours afterwards! If you only read up on one drug, make it this one!

The two other things you will need are an understanding and helpful GP – drugs will need tweaking, doses adjusting and new problems will develop as side effects of the drugs you’re already taking – for me, severe constipation, bladder infections  and oral thrush, inability to sleep – what a barrel of laughs! More than anything I was becoming so tired and confused that I was forgetting what to take and when. Luckily my amazing wife Kady drew up a drugs chart for me which I have continued to adjust and amend as time has gone on. This is the second thing you must have, I utterly rely on it every day.

It has also proved useful on days out, no more remembering what drugs to take with me, the chart does that. Hospital trips in particular, they will probably not know what your GP has prescribed you and vice versa. I always take a copy with me and they look suitably impressed when I hand it over. Kady and I have also found it useful to take on emergency admissions to hospital and visits to and from emergency Doctors. It’s not happened yet but if we ever need to call an Ambulance our plan is to shove a copy in the hands of the Paramedics, that way I would arrive at the hospital and if incapacitated they would have something to refer to.

So not only has it proven incredibly useful to me, it also ensures there is no confusion or misunderstandings in the minds of the medical fraternity as to what I’m on. Clearly I have a vested interest in this as it means I’m getting the best possible treatment and also minimising side effects.

My gift to you, again ‘Without Prejudice’ please use and adjust to whatever suits your purposes and don’t trust my comments on what the drugs are for, you may have been given them for a different reason, READ the leaflets:

20110117 Word Format Mike’s Meds Blog Example

20110117 PDF Format Mike’s Meds Blog Example Sheet

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.

Being Told You Have Terminal Cancer

This is still fresh for me having been given the news on 23 August 2010. You’re either one of two people reading this, firstly someone who simply wants to understand/is interested. Or the person I really want to get my message to, the individual who has just been told their life is now going to be substantially shorter than you’ve spent most of it thinking it will be and is probably currently in a state of complete mental crises…

Although you will NOT believe me now, I must tell you that the initial shock, fear and utter screaming and complete mental agony you will have felt when the terminal diagnosis was delivered to you, will subside and for most eventually pass. Your mind WILL adjust and accept what is happening and you will be able to think, feel and relax again, eventually. It is amazing what mental anguish the human spirit can deal with.

I can’t really advise you on how best to deal with this early stage aside from offering reassurance that you will get through it and things can and will start to look better again. When you feel able to I would suggest you get straight on the MacMillan Website http://www.macmillan.org.uk/Home.aspx sign up and find the group for your type of cancer. You will find that there are a multitude of people out there who have just gone through or who are in exactly the same position as you. Everyone is incredibly helpful, friendly and willing to give advice. If you don’t currently use the internet or know how to then I would suggest learning ASAP, it could very much save your mental health having that community out there to turn to. There is nothing like shared human experience and the internet is now where it happens. Of course Macmillan also have counsellors and there are other cancer charities both in the United Kingdom and abroad, as well as your Doctor to turn to.

It took about one week for the initial horror and agony to pass for me and then another 1-2 weeks for my thoughts to stabilize enough to start to address the issues of my vastly changed situation. There were a number of ways I attempted to regain a sense of control of my life, one of the most important for me was to decide what I wanted to achieve in the now lessened time I had before I died. All my horizons had changed from being so far in the distance I could barely see them – I was 36 years old, not yet married and with no children,  still feeling young – to suddenly being right in front of my nose. It became very important to me to adjust to that by writing in my head new dreams that were achievable in the time I had. I stopped thinking about mid-career changes or retirement for example and started considering next week, or next month, or wouldn’t it be nice if in a years time… I was surprised at how easy it was to make that mental switch.

Once I understood that, I started to see the vast amount of pleasure still to be had in the time remaining and the gift I’d been given of not suffering a sudden death with all the questions that leaves unanswered for so many. Take strength from where you can. Life can and will return to at least a semblance of normality and you will start to feel better about this.

The link below might provide some help to your partner or family members:

Related Articles

▪                Grief and the Cancer Caregiver (everydayhealth.com)