Well Cycle 2 didn’t start off as well as the first. I took the drugs expecting it all to be smooth running, then 3 hours later was doing my best impression of a teenager after a night out, hugging the toilet and vomiting uncontrollably.
Thankfully it’s calmed down a bit since then, got into a good routine with the anti-sickness medication. Appetite has gone out the window and can’t stop sleeping but that’s not all bad, need to lose a bit of weight and sleep is good!
Posted in Ongoing Treatment
What an awesome day!!! A crazy mad competition which attracts the most adventure/extreme sportspersons ever. I have the fullest respect for everyone that does this, the determination it takes just to even enter this, it’s insane! I felt guilty just being a spectator and watching the agony the competitors were going through just to drag themselves around the course.
Kady, Phil and I were exceptionally well hosted by Ingrid and Doug of the Tough Guy Team, couldn’t have asked for more.
Gareth, Graeham and Dave, what an amazing effort. Hopefully the photos will speak for themselves but not only did they put themselves through hell, but they also raised a lot of money for charity. There’s still plenty of time to donate so if you’re feeling generous Link
Look at the sheer effort going on here:
The long awaited finish:
Posted in Heroes, Raising Money
Well I’m at the two week point of my first three week cycle of chemotherapy and it seems to be going okay so far. I was really quite worried about how bad the side effects were going to be but they’ve been quite manageable, I’ve had some very mild nausea but mostly I’ve slept, a lot. It’s been quite pleasant in a way after 5 months of not being able to sleep due to being hyper from the steroids.
I had to take a 5 day course of a drug called Temozolomide which was week 1 and in week 2 I was told I could expect the worst of the side effects plus a lowered immune system, week 3 is the recovery week which I’m starting now, prior to going back to the hospital next Thurs and starting the whole process again – cycle 2 of 6.
Every second cycle I get another full set of MRI and CT Scans with contrast to assess whether the chemo is working, if not they will stop, no point poisoning the body for nothing. So at the end of cycles 2, 4 and 6. Fingers crossed. If it doesn’t work it’s time to move on to drug trials.
My Mother has been staying with us this week to help out, I’m not sure how I would have coped without her, she has been AMAZING. Cooking, cleaning, tidying, making me sandwiches, she’s left me free to get on with dealing with the fatigue and just sleeping. Thank God for Mums!!!
The Hat Thief!
p.s. It’s Tough Guy this weekend which is raising money to assist in the rehabilitation of wounded soldiers, please if you can have a look and sponsor the guys who have volunteered to do this on my behalf – Link.
Posted in Ongoing Treatment
It was Kady’s birthday last week – she’s proper old now(!) – and for a treat I though I’d take her to the Hawk Conservancy Trust which is not too far from us http://www.hawk-conservancy.org/index.asp
She always comments when we’re out and about and she sees a Bird of Prey and I have to say it was a fantastic few hours and well worth a visit. As an added bonus Kady’s sister and nephew were able to join us!
Check out the photos, we’ll definitely be going back!
Posted in Fun
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:
Posted in Home
Some of you may recall that after my failed Chest Biopsy just before Christmas – which is what has been delaying the start of my Chemo – I insisted on having another full set of CT Scans with contrast. My concern was that it had already been two months since the last (second) set of scans and we needed to re-assess how my cancer was progressing. Well I had that second set of brain, chest, abdomen and pelvis scans on 23 Dec. I received the back brief yesterday whilst at the Chemo ward:
CT Brain with contrast – conclusion was that the Whole Brain Radiotherapy has had a partial response with reductions in lesion (tumour) size and associated swelling in my brain. I have three sizeable tumours as well as a number of ‘small enhancing nodules’.
In summary this is cold clinical speak that when translated actually means this is a really good result!
CT Chest, Abdomen and Pelvis with Contrast
All of my lung nodules (tumours) have increased in size. There were originally five, I have now developed an additional two bringing it up to a total of seven. All of this is very disappointing but not surprising as they have received no treatment until we start chemo today. This is why it was so frustrating that there was such a delay in getting my biopsy as that then delayed the start of chemo. It is hoped this will now reduce the size of these tumours, however, realistically I have been told there is only roughly in the order of a 20% success rate with Malignant Melanoma.
Ho hum, fingers crossed for the chemo, I’m going into hibernation again so I can be as strong as possible in the next 1-2 weeks to give the chemo the best chance. Hopefully I will be in that 20%, if not there are still other options which lie in the realm of drug trials.
Two cycles of chemo to go, six weeks and then another full set of scans and we shall see where we are at!
Posted in Ongoing Treatment
Kady and I spent yesterday 13 Jan at the hospital getting a day of tests – chest X-Ray and various others as well as a full run down on the Chemo that I am to start today. I am lucky in that I am taking my Chemo as a course of tablets at home rather than having to sit in a ward receiving a drug infusion. I’ve been using my own drug chart for some time as with my Radiotherapy induced confusion plus the sheer amount of tablets, it has been easy to forget when to take them. As I now have an additional humongous supply of Chemo drugs to take every day as well as additional other drugs to counter the known side effects, I’ve drawn up a new chart, see here 20110114 Drugs Chart Cycle 1 of Chemotherapy
I spent a hugely entertaining evening last night reading every single drug leaflet, working out timings for taking them. There are so many considerations, before/after meals, in the morning/evening, once a day, four times a day, separated by 12 hours, the list goes on. I got there in the end and even managed to leave a couple of hours in the morning and in the afternoon where I might actually be able to do something other than clock watch and wait to take more drugs.
The team at the Spire Hospital were very informative and I feel well prepared for this, first hit of Chemo drugs is 0800 today, I just want to get the next 24 hrs over so I start to get a feel as to whether this is going to make me feel utterly horrendous or hopefully, be one of the lucky ones that it barely affects, we shall see. It’s a three week cycle which starts with 5 days of taking the drug then a downhill slide (apparently) in how you feel, rapidly reducing immune system and constant taking of your own temperature. At the first sign of feeling ill or temperature then it’s call the Chemo Team and possibly an Ambulance job. At the end of each cycle another trip to the hospital, another chest x-ray to measure effectiveness of chemo, or not. After every two cycles another full set of MRI and CT scan to get a more detailed measure of progress, or not. All of this will go on up to a maximum of six cycles or 18 weeks.
The Chemo suite at the Spire was out of this world, Kady and I couldn’t believe it. The ‘Captains’ chair I got to sit in was like something out of a Syfy movie! If I were receiving a drug infusion, this is where I would want to be getting it!
Posted in Ongoing Treatment
At this stage everything became a little hazy and hard to comprehend for me. Kady, well it can be imagined how she was. We left the hospital having been told to expect a phone call the next morning regarding that rapid intervention treatment. Although we clearly couldn’t comprehend it at the time, we were in a state verging on complete panic, our minds reeling. All I could think was that I had to tell my family – Mum, brother and sister, so immediately, in the car on the one hour drive home, I started the painful experience of calling them, it was utterly horrendous.
It’s strange but being told you are going to die is somehow an easier experience than it is to have to tell your close family. I wish we’d waited 24hrs for Kady and I to get used to the idea, before we did actually tell anyone else. In fact I’ll go so far as to make that a top tip, although it is difficult because you will be in panic mode, but try to think very carefully about who you tell first and when. Once the word gets out the barrage of very well-meaning visitors, phone calls, texts and emails will start, instant celebrity. Once it does, you will find it very difficult, in fact impossible to get the time for yourself to start to adjust to what’s going on.
Kady and I spent the first three weeks after receiving the news entertaining visitors to our house. So not only were we mentally exhausted and in deep crises ourselves, but we were also physically spent from lack of sleep, cooking, making constant cups of tea and tidying up for well-wishers. It was all so well meaning and done with kindness that I feel awful saying it, but the sheer volume of the enforced entertainment we had to do in combination with what we were dealing with, brought us closer to breaking point than anything else.
What we really needed was to be left on our own. Neither of us have any family in the area who could help us. People can’t be faulted for caring though and they quite naturally wanted to be there for us, it’s impossible without being rude to explain to them that they’re not helping. With the benefit of hindsight, we should have been more firm about it.
The Doctor before we left his office had immediately put me on an extremely high does of steroids to reduce the swelling in my brain. He’d explained that this swelling was putting me in the most danger at that time and I was at risk of having a major seizure at any moment from which I would potentially never wake.
Well the drugs worked and what a relief, the horrendous headaches I’d been suffering for months were gone within 72 hrs. The drug – Dexamethasone – comes with the most awful side effects http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/steroids that on top of everything I spent the next 4 weeks learning to manage and now months later am still struggling to deal with. What a relief to have the awful headaches gone though after so long.
Posted in Diagnosis and Initial Treatment
The Neuro Surgeon didn’t mince his words and as I best recall he said ‘well Mr Parke I am afraid it is not good news, two weeks ago when we looked at your MRI scans that were taken 3 months ago (!!!), we could see there was at least one tumour and two others that were rapidly developing. Unfortunately what we see now only a short time later is 2 very large tumours in your brain with 2 others developing rapidly, as well as what looks like numerous other smaller ones starting to develop.’ He showed me some of the scans of my brain and it looked like someone had smashed a box of eggs inside my head – the tumours looked like black holes with the swelling they cause appearing on MRI taken with contrast, as what looks to the layman like egg white. This swelling was unsurprisingly the cause of my progressively worsening severe headaches and what I had been fighting throughout my busy summer of preparation for Afghanistan. These images are now on this blog under ‘MRI Scans’.
Turning to the CT scan images he said ‘I’m afraid also that the scans of your chest show that there are a number of tumours in there too. Whilst these are not AT THE MOMENT life threatening they are clearly a major issue that will need to be dealt with at some point.’
My mind was reeling, Kady was in shock, but the obvious question I had to ask was what does all this mean? ‘I am afraid this is Terminal, there are simply too many tumours for us to operate on and we are not going to be able to cure you. The best we can hope for is to alleviate the onset of symptoms, with rapid intervention treatment starting immediately, you may have a few short months to live. What are a few short months? Four to six, without treatment, less. If there were only one or two brain tumours we could try surgery to remove them, with so many that is simply impossible.
He told me the spread and type of tumours was absolutely classic Malignant Melanoma http://en.wikipedia.org/wiki/Melanoma that had metastasised – in other words had using my blood supply thrown tumours out around my body into my brain and lungs. Malignant Melanoma, nasty little bugger. I was never a great one for sunbathing and had never been on a sun bed in my life, I’d had no idea it was so dangerous. Now I’d just been diagnosed with Stage 4 Malignant Melanoma with a 9-15% survival rate. http://www.cancerhelp.org.uk/type/melanoma/treatment/advanced-melanoma
We finished our particularly busy period at work at the end of July and then thankfully went straight onto Summer Leave, boy I needed it! Out of the blue in my second week around mid August the telephone rang. I was amazed and not a little worried to hear my consultant speak, ‘well Mr Parke the results of the Multi Disciplinary Team meeting were not as positive as we had hoped, the members all agree that you have at least one lesion in your brain and possibly two others rapidly developing. It is imperative that we now conduct more scans, can you come back next week? My first thought was ‘how the hell did YOU miss this?!’
Clearly this was serious and I was floored by the news, however Kady and I were busy planning our wedding for the following year and had booked a trip abroad to the Greek Island of Kefalonia in order to tie up the details. I explained the situation and could it wait a week – bearing in mind this had already been dragging on for months now(!!!) – yes it could.
So less than 48 hours after getting back from Kefalonia Kady and I found ourselves at this charming establishment waiting to see the ‘Top Man’ brain surgeon in the South of England. We had to be there a few hours early for the MRI and CT scans and I had to drink some concoction that was like some crazy protein drink, to fill me with tumour reflecting magic juice. I then went in for a CT scan of my chest,abdomen and pelvis http://en.wikipedia.org/wiki/X-ray_computed_tomography followed by yet another MRI of my brain http://en.wikipedia.org/wiki/Magnetic_resonance_imaging both with further contrast agent injections.
Although it didn’t occur to me at the time, they clearly already had a good idea in their minds of what was going on and were giving me the full suite of tests to confirm it. As always the medical staff were exceptionally friendly and helpful. The worst part was in the middle of the CT Scan when they injected me with the contrast agent and it felt like there was a volcanic eruption in my chest and I had an urge to wet myself at the same time – apparently they normally warn you about this. They must have been having a bad day.
Both scans were done and I may have been being paranoid but I thought I could detect a change in the attitude of the Radiologists who could see the results. Kady and I went straight from the Radiology Dept to see the Neurosurgeon…
Living with and Fighting Terminal Cancer - Stage 4 Malignant Melanoma with Multiple Brain and Chest Metastases 
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