Tag Archives: health

Appearance, Admin and Limitations

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The last week and a half I’d say has been split into dealing with 3 quite different things. The first feels silly and vain to say in a way, but it’s all about my appearance. Going bald from treatment didn’t really bother me that much. Losing my beard did but I’ve had some form of facial hair the last decade so it’s very much a part of my identity. I’ve suffered from acne quite badly since I was 15 and while it calmed down in the last few years the damage has been done with scarring. The beard was always partially an attempt to hide that scarring so it has been difficult to ignore it at times.

The biggest thing for me at the moment though is the massive puffiness and “fat face” that has come as a result of the high dose steroids. I know it will reduce to normal once I’m off them but that’s still a while away.
It’s the shock I think when I glance at myself in a mirror and just don’t recognise my face or even my facial expressions. I try and remind myself that given the circumstances how I look is really the smallest and most irrelevant thing but then your identity is important no matter what and I want to look like me when I go.

What I really wanted to get out of the way was the “admin” side to all of this so the week was spent going to my radiotherapy sessions and burying my head in spreadsheets. At the forefront of my mind is to just make sure that everything is as easy as possible for Tamsin when the time comes. You have the obvious bits like transferring and managing the living/flat bills and then you have the personal bits like what to do with my stuff.

As per most 28 year olds I hadn’t given any thought to writing a will. Obviously the main part is listing out where you want your things to go but I found it the most surreal experience to think “okay, x should have that because they’ll make the best use out of it” and know that this will actually happen soon and not some 30 years down the line. I’m certainly a thing person, I really love gadgets and yet I’m sitting there essentially dishing them out because they are just things and if I or my wife can’t/won’t make use of them other people should. What was odd as well is that I love doing all those little organisation things and building spreadsheets so I took an almost perverse pleasure in planning out what to do and what needs to happen when I die. There’s still plenty more to sort out but once it’s done it’s one less thing to worry about and we can just concentrate on enjoying the time left.

Having been at home and only really popping out for short familiar trips in the week, our Edinburgh weekend has been a big test of my mobility and my general strength which is, as expected, continuing to deteriorate. It’s funny the things that are so different and end up frustrating… packing for instance, crutches of course making it impossible to carry much so the whole process of getting my stuff together taking 3 times as long. The journey up to Edinburgh was manageable but a lack of depth perception or ability to focus properly meant I had to concentrate quite hard all the time on exactly where I was walking and taking it all very slowly. It was the same again with unpacking, taking so much longer then normal and finding myself really frustrated by that. I’ve always been a tidy and neat person who gets somewhere and unpacks fully straight away and it’s always been just a plain simple easy process and now it isn’t.

On Saturday we headed up to see Edinburgh castle and the staff arranged for mobility transport to get us to the very top. Initially in my head I had this stab of “oh no..we’ll be fine without” but I quickly reminded myself it’s my gut reaction still to feel like I’m not “worthy” of special treatment or help when clearly a one eyed terminally ill man on crutches with weak legs is probably going to appreciate some help.

We managed a bit of walking about at the top of the castle but I just felt utterly exhausted and realised we had to take things even slower then expected and that my levels of energy just aren’t anything like they used to be. It’s really hard having expectations of what you can manage knocked down so much but it was necessary for me to see exactly what my limitations are now and try to adjust to it.
The same goes for taking photos of which I’m now limited to leaning or sitting positions in which to take from. Fortunately the eye that remains open is the one I use to focus but it’s been pretty hard to accept these sorts of limitations. I did manage to take a few photos of our trip but nothing like what I would normally do – I know that ultimately it’s about accepting things have changed and recognising I can still take photos regardless and enjoy them but mentally it’s hard work to let go of being able to just walk wherever, crouch down and take a photo.

The good thing about going through all that on the castle trip was that it allowed us to judge better what we wanted to do with the rest of weekend, in terms of knowing my limitations. So it was spent relaxing, enjoying some F1 from our hotel room and eating out at some quite amazing restaurants. We managed to get to the zoo on Monday and see the much talked about Pandas, as well having our first foray into Taz pushing me around in a wheelchair. The zoo is, it turns out, just one big hill and you start from the bottom so it was unlikely I would have even made it as far as the Panda pens on my crutches. In the end, the experience made me think I just need to stop resisting obvious areas of help – the occupational health nurses at the Marsden measured me up for a wheelchair a while ago and all I need to do is ask for it which I now plan on doing. We may as well have it in the back of the car… ultimately it’s going to help us do more.

I had of course hoped that my eye might have improved for the weekend but there wasn’t really much of a difference. I’m trying to exercise opening it and I think perhaps today there is a slight improvement in my ability to keep it open but it’s difficult to tell and easy to lull yourself into a sense that there’s improvement when there isn’t. We only finished the radiotherapy on Friday so all I can do is continue to exercise it and keep my fingers crossed the nerve sorts itself out. I feel like I’m coping with it but that is still dependent on belief it’s a temporary problem, if it switches to a permanent problem I suspect I’m not going to cope so well with it.

Regardless of some of the difficulties, we had an absolutely wonderful anniversary weekend. I couldn’t be luckier to have met and married my wife, who continues to amaze me with her strength (literally, pushing me up a big hill) and resolve. It’s horribly gutting to think this will (possibly) be our only anniversary but we’ve had a truly extraordinary first year together not only dealing with this but also still managing to be a happily married couple.

Trivial illness… but then not so much

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I spent this week feeling sorry for myself for various reasons, some I think largely trivial and some far more serious it turns out. I picked up a nasty cough/chest infection a couple of weeks back that’s only just about starting to go now and have at various times dealt with flashes of anger at being what I would consider trivially ill when terminally ill. As much as I’ve tried to not let it impact anything I had planned the whole thing massively impacted my ability to sleep and concentrate. Of course being a typical male I should have gone to see my GP much earlier and no doubt lengthened it all unnecessarily until my wife sorted out an appointment.

After a busy weekend seeing some friends I woke up on Sunday with slightly blurred vision. I put it down at the time to a combination of tiredness/lack of sleep, feeling blocked in my sinuses from the infection and knowing one of the side effects from the bone drug was flu like symptoms for a few days. I had to cancel on seeing some other friends that evening (flash of anger at trivial vs terminal) but had planned out a relatively quiet week of sorting out admin and organising some of the more practical parts of a being terminally ill. I had hoped I was giving myself a bit more time to recover from all my various “trivial” illnesses at least.

Come Monday/Tuesday my vision in my right eye continued to worsen to the point that it became difficult to open my right eye and I noticed when I did it had started to point off to the right and was no longer able to join up with my left eye to focus at one point. Wednesday morning seeing no improvement we called the GP/Marsden and after some back and forth I ended up with a brain MRI scan in the afternoon with a follow up at the Marsden on Friday. This would be my 5th MRI scan I think and they never get any more enjoyable (particularly if you’re prone to claustrophobia) but I find concentrating very hard on being anywhere else more comfortable with my wife gets me through them.

The Marsden called Thursday morning to say they wanted me to see an ear, nose and throat specialist as they could see from the MRI inflammation around the sinuses that might be causing the issue with the eye. In addition they could also see an anomaly in the skull that could be related to the sinus infection or the cancer and wanted the ENT doctor to check the sinus problem first. We ended up seeing a doctor at St George’s in Tooting who after an uncomfortable exam with a nose camera concluded two things. Firstly, I have a deviated septum that means my nose is essentially crooked underneath. The net result is it takes much longer for my sinus on my right side to drain and goes some way to explaining why I always seemed to suffer worse/longer during colds. Wow does that sound like a “man-flu” style excuse… but at least I have a medical reason for why it takes me longer to recover from colds!

The second conclusion was a little harder to swallow at the time – while he could see some inflammation in my sinuses it wasn’t causing the issue with the eye. That of course meant it was the previously mentioned anomaly that was causing the issue and therefore cancer related. Probably silly at this point to think that a simpler less serious thing might be causing a new health issue for me but I had hoped that it might at least be related. My wife reliably informs me I retreated into myself a fair bit after this once we got home. I think I’ve tried hard to prepare myself at least a little bit for the various things that may or may not happen to me during my deterioration. Losing sight, partially or otherwise is most definitely not something I was preparing for…at least not at this stage. It was hard enough just during the week dealing with it so the idea that a) it was cancer related and b) therefore might not be reversible hit the “be scared” part of my brain hard.

I managed through the evening by concentrating hard on other things and reminding myself I shouldn’t make any conclusions out of the situation until we spoke with the Marsden team. This morning we saw the doctor who explained that I have a small amount of plaque on the base of my skull near my eye which was pressing down on a particular nerve that controls certain motion in my right eye. In my case it’s the ability to go to the left as well as the ability to open and close my eyelid (I can do it but it’s difficult and doesn’t want to stay open for long). The treatment for it is 5 sessions of Radiotherapy and I had the first session this afternoon.

The doctor felt confident, in as much as any they can ever say, that it would reduce the plaque and release the pressure on the nerve. Unfortunately I am faced with two possibilities, one is that once the pressure is released the nerve returns to normal and I can see out of both eyes as normal. The other possibility is the nerve has been damaged by the pressure and my right eye may or may not return to normal. To be honest I have a reasonable amount of confidence it will return to normal, we’ve hit it pretty quickly with Radiotherapy and I think I need to have belief that last Saturday was not the last time I saw something in focus with two eyes.

Timing wise, we’re lucky in that I can just about have treatment done before our anniversary trip next Friday. I am of course thoroughly hoping I can enjoy Edinburgh with two eyes, I’ve learnt this week that crutches and a lack of depth perception aren’t a huge amount of fun. Being only able to use one eye also seems to make focusing on anything remotely long distance impossible, as well as adding this completely disconnected/tired feeling to everything.

The positive is we have a plan for treatment and we can only have confidence it will work as it’s supposed to…. Until then…. “Avast”???

Peculiar Anniversary

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Yesterday we went to the Marsden for the first of my bone strengthening treatments as well as a clinic appointment to see how I was (and whether I had changed my mind on having chemo). Just before we arrived I pulled out our annual car parking pass and found that it expired that day.

I remember quite clearly buying the thing a year ago and at the time, aside from thinking it was ridiculously economical to spend £100 for a years parking versus £2 an hour, my thoughts were “I wonder how much time I’ll end up spending at the hospital?” and “I wonder if I’ll be renewing this thing in a year?”.  The answer to the first question was far more time then I would have liked and the answer to the second question ends up being no, but not for the reason I would have preferred.

The Marsden is a very busy hospital and often clinics/appointments run pretty late, so we’re used to the odd frustrating appointment spent waiting forever.  Yesterday was another busy day with long wait times, but I really struggled with it.  In total we spent probably 10 minutes with the doctor at clinic and maybe 30 mins getting the bone drug.  The remaining 5 hours was spent just waiting on chairs of varying comfort.

It wasn’t so much the length of time that was difficult, it was the lack of control over how I was spending my time.  If I wasn’t at the hospital I’d probably be at home on the sofa browsing the web but that would be my choice to spend my limited time doing.  I have no control over what the cancer is doing, how long it will take, what it will do but I should have control as much as possible over what I spend my time doing.  It doesn’t help that I can be impatient though.. ;)

One thing it did I guess was reinforce my decision not to have any further treatment.  Ignoring the fact it probably wouldn’t help much anyway… waiting around in the Marsden just isn’t something I wish to spend my time doing.

After a lovely evening courtesy of my sister and brother in law last night Taz and I got home late and rather then sensibly go to bed we ended up deep in conversation about schools, truancy, bullying etc.  It got to the end of the conversation and as often happens we both commented on how much we enjoyed talking to each other.  My instinct was to immediately say I’m going to miss talking to you about these things and then it hit me……

I’m not going to miss anything because I’ll be dead, I can only be sad that others will miss what I say and who I am.  

I got pretty upset initially thinking that but then I realised that it makes the whole thing that little bit easier for me.  I can be and am incredibly sad and upset that my family and friends will have to deal with the “after” but I won’t have to deal with it myself.

I just checked my calendar and saw that a year ago today we submitted our notice of marriage to the registry office.  Anniversaries are weird for us because the situation we’ve ended up in is so far from how things were a year ago, even when we knew we were facing something so difficult.  I count today as a good “peculiar” anniversary though, I knew I was getting married in 2 weeks time and couldn’t have felt happier.

One Week On

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Throughout all of this, from my first diagnosis to the latest news, I’ve just felt like “I will just deal with it as there’s nothing much else I can do”. To me this feels like a totally normal reaction but other people don’t see it in that same way – I guess because my “nothing much else I can do” is for me at least “Can only be positive, can only continue as normal and try to make the best of it” and I know not everyone is like that.

I think because of this I’ve found it quite difficult in a way reading some of the utterly wonderful comments people have made. It’s like I don’t feel I’ve done anything special or different to how I would handle any situation so don’t deserve what’s being said.

If there’s one thing I did want to come from this blog it was for people to take the positive and it’s really quite overwhelming to see people feel inspired by it. It’s also wonderful to see people take inspiration and comfort from each other’s comments.

It’s been a difficult and confusing week really. Actually, confusion is probably the one constant thing in the back of my brain. It’s been hard to just think about things completely clearly without this element of what the heck in the mix. I got through the difficult and pretty repetitive task of telling close friends and family what the situation was and obviously launching this blog which told everyone else I needed to. First couple of days was the expected flood of messages and my wife and I both found it all a bit overwhelming processing through them.

Almost everyone I think has had the same reaction to the news, feeling incredible sorry, asking if there’s anything they can do to support us but ultimately not really knowing what else to say. My reaction has been much the same to all – we really appreciate the support and if there was anything we could think of we would absolutely ask. But you know there isn’t anything to say about it. It is what it is – hugely unfair for everyone… especially unfair for my wife and for my family. The way I see it is, I’ve only got a short time of having to deal with it before I’m gone, everyone else has to deal with the after.

Probably the first question people we’ve seen have asked is “So what are your plans in terms of what you want to do with your time?” It’s a slightly crazy thing to think about, your things to do before you die list and it’s pretty difficult, for me at least, to think clearly about it. There are absolutely projects I want done, there are of course places I would like to visit but they all feel secondary to just wanting to spend time feeling happy in whatever situation and wherever we are, be it at home lying on the sofa or jetting off somewhere.

Next month is our wedding anniversary so we’re planning a trip to Edinburgh for a long weekend. Both only flown through and never visited and given my mobility issues it seems like a good choice in that we can stay right in the centre and hopefully take lots of photos! Ideally it would be New York or somewhere else abroad but I just don’t feel comfortable at the moment being so far away in case of health problems, especially given I won’t be able to get insurance. That’s one of the things with the “list”, where we go is limited by my mobility and health which has been a little difficult to accept at times. It’s like, okay I have a certain amount of time left and instead of being able to relatively freely go wherever I want I can’t and have to be practical about my situation.

I think overall though we’ve got a good idea of what we want to do with our time at this stage. I’ve not yet felt the probably inevitable panic about how little time I have and I didn’t get to do this thing or finish this thing. It seems like it makes more sense to just take things sensibly and get things on our list booked in as best possible, without attempting to cram it all into the next 2 weeks.

Part of me wishes I had some kind of end date in which to be able to plan against but I guess that takes some of the “fun” out of this… it also would take some of the hope as to how long I actually have.

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Skipping to the end…

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… but I’m not going to spend one second being angry about it.

I decided under the circumstances that I would start a blog about dealing with what is my final prognosis.  I’m terminally ill and I have a pretty short amount of time left.  How long that is I don’t know but based on my current situation we are talking about months.  That being said, it could be 3/6/9 months or longer even but realistically I don’t expect to see out 2012.

I knew after the failure of the phase 1 trial chemo combination in Feb/Mar that things were starting to look pretty bleak but also that there were potentially other trial drugs we could still try and so met with the trial team week before last.  They were pretty upfront from the start that on the basis that the previous trial didn’t work and that was a good combination to try under the circumstances that there weren’t really any other trial drugs that were likely to work for me.

We would be looking at single digit % chance of success and given what’s involved in a trial i.e. lots of hospital visits/blood tests/side effects from treatment etc the team felt from a quality of life perspective it just wouldn’t be worth it for me.  I still needed to see the urology team who originally did all my treatment for chemo last year up until the trial to discuss any traditional chemo options.  Unfortunately I also knew that given the extremely intense chemo I had undertaken last year didn’t do the job of curing the cancer there wasn’t much chance any other regime would be able to do any more for me.

We had our appointment with the urology team on Friday and talked through some of the chemo options.  They can offer me a lighter combination of drugs that I would take as an outpatient, one of which I’ve had before as part of last year’s chemo plus a different one.  In terms of what the chemo could do for me it was spelt out as if it works it will buy you some time, probably months.  In theory it could be 6/9 even 12 months but most likely the shorter end of the scale.  The problem would be that I would be having to deal with chemo while only possibly extending my time by a short amount and only if it works and they don’t know if it would.  While the chemo wouldn’t be anything like the intensity I had last year I would still have to deal with nausea, fatigue and all the other typical side effects.

When faced with that the choice to make just felt obvious.  No more treatment as it’s not worth feeling horrid from chemo for a small chance it might give me a few more months.

So that’s where we’ve ended up.  The doctors have left it completely up to us as to what we decide and we’re going back in two weeks.  I can certainly change my mind and still try the chemo but I think it’s unlikely I will.  What they are starting me on is a drug to help strengthen the bones in my spine as this is where the main cancer spread is and it will hopefully help stave off the cancer a little longer.  Unfortunately my mobility is not great thanks to the lesions on my spine.  The radiotherapy should have helped a little bit but I need crutches to move about as I can’t stand up straight or without pain.  Because the cancer is in the spine I don’t expect things to improve so I’m doing my best to just adjust to using crutches all the time.  I can still drive at least, but long walks are out!

For me personally, I think I felt like maybe this was always coming.  That everything about the situation just didn’t feel quite right.  The fact it’s still an unknown type of cancer, the partial response to chemo only…. the multiple radiotherapy sessions because it kept coming back.  It just seems like I was always going to be this unusual, probably uncurable case.  But then maybe everyone thinks that when faced with something like cancer!

What I do know though is that I have such amazing support around me.  My wife’s strength, support, selflessness and utter incredibleness (not a word but no better way I can describe it) continues to astound me.  My family and my friends continue to show as much support as I could ever hope for.

As I said at the start, I’m not going to waste any time being angry about it.  That’s not who I am and why should I waste a single second I have left being bitter or mad.  We’re obviously planning out what we want to do with my time, trips we want to make… people we want to see and time we want to share with our friends and family and will absolutely make the most of everything.

I hope that people can find and sense the strength and positivity that I still feel from all of this and know that while it’s a really hard thing to hear and deal with I am still me and hope to be until the end, whenever that is.  I also hope that writing regularly about all of this will help people understand, come to terms with, even enjoy in some small way how the heck someone ends up dealing with this situation.

Me and my nephew Carter