My last post was end of 2013 and i promised me and any followers i would be more regular and i have not....sorry. This is therefore mammoth...sorry.
So where am I? Well it moves fast this disease so here goes...
At end of 2013 i was on my clinical trial at the excellent Sir Bobby Robson Unit (SRBU) at the Freeman hospital, Newcastle Upon Tyne with a paclitaxel (a type of chemotherapy) and mek inhibitor (a trial drug from Glaxo Smith Kline or GSK) combo designed to try and turn off the signals that make cancer want to grow.
I tolerated well except a horrendous facial and body rash which meant coming off for a week and on to a series of steroids and creams to calm it down. It is a common side effect but it was horrific and in November i also had a raised temperature at the same time as the rash which hospitalised me for four days. However i was able to continue working except for the four days and managed the chemo fine, no real fatigue and was able to enjoy work, christmas parties etc
Christmas 2013 was fab. Chilled out with Victoria and the children, limited visitors, nice and calm and cosy and warm and relaxing. On New Years Eve i had my first trial scan. We went to neighbours for NYE and had a lovely time.
Back to work in 2014 and a slight change as the chemo was now starting to have more of an impact so fatigue was starting. Scan results came back and the three main tumours being measured (right lung, lymph node gateway to lung and abdomen) had all halved! Yippeeee. News spread and of course the uninformed (which i think truly is everyone except the patient) breathe a sigh of relief as the majority hear this news "He is better"...urrrr not quite guys. But it is good news and a spring in the step. I hoped the trial would work and buy me time in the knowledge that Ipilimubab is out there and that to could buy me time. Simple maths of hope that say 3 years on one and 3 on the other equals six years...not bad for stage 4. Faulty logic of course but you grasp at straws.
Work starts to get a little more difficult (new job as well lots of demand and pressure and lots of it new to me) and illness means i miss a couple of things at work not getting into the office and no one backfilled and it led to criticism blended with sympathy which meant my boss and I talked about a work plan that let me work from home effectively five days a week, coming in on Thursday afternoons to catch up with my managers and for sanity (eg put the suit on and have a journey purpose). One of the managers would step up to carry out my duties whilst i concentrate on projects like budget, restructure and other work from home projects for which there are plenty. However there was no pressure on me, if i was not well don't work, if i wanted too then do. No one was really monitoring me and to be honest they don't need to i have a built in work ethic, i need saved from myself rather than pushed. Hospital appointments were a given and the whole scenario was perfect, it took me off the Councils sick records (i wasn't on them but could have been) I was working so not eating into my sickness and reduced pay after six months. Occupational Health and HR happy and i was even seeing the work counselor and despite my scepticism he was quite good if only for someone just to tell it how it is who i don't know from Adam. He offered little except a room, water and ears really and sometimes i think i missed a vocation, i am sure there is more to it than that but it seemed money for old rope.
So onward. In early 2014 i had the second trial scan with the last one due end of April when the trial was due to end. I was pre warned that as my tumours were low volume the ability to measure gets more difficult and a stagnant scan is success. But it wasnt stagnant, it had regrown by more than 20%. Meaning whist the three tumours were still smaller than when i started in November 2013 their regrowth meant i was off the trial. Why put me through the side effects for no benefit? Fair point. It hit my wife Victoria hard, and me, but it was tempered by an almost immediate set up to get me on to Ipi which i could do as a second line drug given my trial was classed as first line. So i quickly closed one avenue and open another. Ok i lost my invented three years on trial i had hoped for and we hit the Ipi plan B much sooner but why fret there is no choice.
So Ipi was arranged for early April, three or four infusions over a few months. Warned it was a slow burner and scans can show growth and then after five months it kicks in. Designed to use your own immune system against cancer by removing those parts we all have that tell our immune system not to attack cancer. Side effects a plenty but like all drugs some you get some you do not, some you get bad some you do not at all and everything in between. As to work we agreed nothing had changed i am just switching drugs and side effects so it stayed as was with a review date end of August 2014.
About three days later and about five prior to proposed first Ipi i awoke with an intense headache and a numbness to the left of my nose. Something is wrong. That day i went into the SRBU and they look at my eyes...worry. In for head scan that day (SRBU just excellent) and by the afternoon some interim feedback. Something is lurking behind my left eye and it looks like cancer....sh*t. Friday was next day and a more detailed review shows worse as the cancer is in my skull area, left temple and disintegrating the bone, the mm is in the soft tissue and pushing my left eye out and the pressure means i cant feel the nerves in the left hand side of my face hence the numbness. I need radiotherapy and quick.
Now this is where the worry kicks in of course as whilst the mm is not on my brain its damn close and my excellent skin specialist cancer nurse from another hospital in Newcastle (the RVI...equally superb) told me back in the day mm goes for the brain and that is the demise so i was now fearing and Victoria was beside herself. But as ever you are presented with a situation so you have to handle it.
I met Dr Kelly who is in charge of radiography, two options, an immediate lower risk dosage of radiotherapy to get cracking but with a warning mm is resistant to radiotherapy and the risk it wont do the job and it progresses and my prognosis not good OR a higher dosage with a detailed plan which will be about two weeks in the making with mask fitting etc. I took the latter. Mask was fitted via plaster of Paris, not comfortable but do able. 2 April 2014 first of fifteen radiotherapy zaps daily except weekends and bank holidays including my recent birthday (42) on Good Friday.
The problem being the mask was fitted at early stages of Dexamathasone steroids (given to me to alleviate the swelling round the eye and temple and get me through the radiotherapy. Let me tell you about Dexamathasone for me
*It gave me so much energy, too much, i could not stop body and brain being active
*Sleep pattern became 10.30pm to 3am but no fatigue issues except every now and then (say one in three/four days i would sleep 5pm-8pm
*Mood swings not good, i could be in a rage or be the happiest man alive. Despite Victoria knowing and understanding this she could not handle it.
*The highest i had was 12mg and today I am on 4mg not knowing how i could have been on 12!
*As to the mask however DEX makes you eat, and i did, and i ballooned as did my.....face and neck!
So on day one it hardly fit, designed to be snug as the tolerance level of the lasers is 4mm, this mask was like a second skin with tiny air holes for nose and mouth. It looked like it had to be abandoned until i insisted they squash me in. Worst still the first three zaps are longer as they CT scan you and treat you to make sure you have the right targeted treatment so a normal 7 minute zap is 20 minutes. Reassuring to have CT scan to target correct areas but long sessions in that mask. I did it and on day 4 such was their worry my mask might pop open under stress it was cut about a bit to give me more breathing areas around mouth and nose. Still tight, still not nice but better and i brought in my own music, had a good rapport with the radiographers and the sessions flew by. Side effects not too bad either, nothing the Dex. and the odd paracetemol couldn't handle. Applied cream to the areas they were zapping to help my skin.
My main issue is my almost total loss of vision in my left eye which as 90% gone pre radiotherapy from the cancer but the radiotherapy being so close to good cells took that to 98% and i was warned that this total vision loss was almost inevitable. So crossing roads very difficult as perception changes and sometimes i get a wobble on like a drunk. Sad but if the bigger picture works its a price to pay.
But what is the bigger picture? mmm, no one knows. The plan is this that the radiotherapy holds back the cancer in my head and agitates the mm. Ramp down steroids to zero (because you cant treat the side effects of Ipi on steroids) and then on to Ipi in the hope it kicks in and goes to my head and works on the agitated mm (this by the way has no evidence of success but they think/hope it will and it will be forming future trials apparantely) as well as hitting those existing tumours which may have grown or stagnated but will not have been treated by anything now since Feb/March.
Also meanwhile i have a new lump grown in between my scrotum and left thigh (recommended to leave alone until radiotherapy sorted and agreed as didn't want it to delay Ipi if it got infected or didn't heal). Also at the top of the scar on my left groin from where my lymph glands were removed there is a hardened area. It has been ultrasounded before where it came up as fluid probably pooled like the seroma on my inner left thigh (which has reduced) however its characteristics have altered and its now raised and hard but again same advice, leave it for the Ipi. There may be other things happening inside i have no knowledge of. Of late i have had terrible back pain at base of spine. I went into hospital on Saturday 19th April it was so bad and they poked and prodded me and checked my leg power and nerve sensations and sent me home not to worry but with a bone scan booked now for 2 May to be reassured (again Newcastle hospitals are brilliant). My Doctor is also booking me a neck down scan any day now i hope just to see what is happening outwith my head, to see what Ipi now has to deal with, hopefully still low volumes as i believe that gives more of a chance at prolonging life.
However the head is key because if the radiotherapy does not do its job then the Ipi could be immaterial as I might not see out the treatment in honesty (my consultants honesty). They wont scan my head for three months (as too much scanning and zapping causes secondary cancers) so end of July, and again he said in worst case scenario i might not make that scan!
But if the radiotherapy has done its job AND Ipi comes over the hill and kicks in i could be talking potential years not weeks and months...how is that for a mindf*ck?
How do you explain that to wife, children, family and friends all of whom have different levels of grasping things especially my mum and stepfather who ask the same questions over and over and over and over until i want to scream. I have told them now about fifteen times i wont know how the radiotherapy went until end of July yet they ask me almost weekly how it went and the results. They then say bizarre things like i am not on steroids anymore, when i am, and no one has told them i am not. It is another stress i don't need, then my brother who i think gets it a bit more agrees that my Mum is struggling to grasp it and we agree perhaps saying less will help, then he finished the call by asking how the radiotherapy results went........laugh or cry???. My brother though has been incredibly supportive and the only member of my family that from day one has said he will do anything to help unconditionally and carried that attitude throughout since August 2012 to now.
To be honest (its true as well) the person who understands most what is going on is my 6 year old James because even Victoria has some bizarre takes on things. We obviously had to tell the children about things in more detail (Alexandra is 4 now) because up until now its been passed off as Daddys bad leg (given that was a physical representation of my disease with loss of two toes on my left foot and later lymph gland removal). We did so on a family weekend break to Cumbria (which I found fantastic and Victoria stressful) and James was superb working through worst case scenarios as only children can (including a new stepfather option lol and tears) and he got himself in a place where he understood what could happen but also that his Dad was hopeful he would be around for a while yet. Alexandra being younger was a bit more flighty, something has stuck with her but on a slightly lesser level. Since then both have been a bit more clingy, we have had to tell school, family, friends and neighbours what we have told them so the context and message remains as consistent as it can be. This was important. The school have been wonderful and we have had loads of support locally from friends and neighbours. Since then both children have seemed generally ok but from speaking to James after my last zap he asked now if i could keel over and die sometime, I said i could but i would hope not as there is still a way to go. It shows its all up there though.
The reason keeping the mesage for children is so important is at the time i had my toes off in 2012 and there was the risk of my cancer spreading in future (at stage 2B then) we were all worried but kept it from the kids. My stepfather visited one day knowing this and in front of them said "So you are not going to die then?"....yep he said that...we took umbridge and he took umbridge at our taking umbridge....(yep that's right)....and didn't visit for ages with some cockahoop story that his feet were too bad to drive to Newcastle (he has got bad feet). This story was backed up by my mother whilst they drove longer distances to Cumbria to see my brother and Scotland to see his daughters with him driving.....and cancer isn't enough? Aren't families funny in these situations? What could have been my last Christmas in 2013 my Mum and stepfather decided to spend at my brothers, that said our Christmas (and theirs) was probably more relaxed as a result.
So it is now late April. My consultant is talking about potential additional radiotherapy as i have tolerated well. He says further agitation may give Ipi and even bigger hand BUT because of my loss of left eye the physics team may be concerned that i lose right eye as well (lasers near there) so he feels he will be told no. I see him next Wednesday (30/4) to discuss and see how my side effects are going (left hand side of face very red now from lasers going in and also hair loss round temples and headaches a bit more and fatigue a bit more but all manageable).
Biggest issues are bad back (not radiotherapy related but worried its cancer spread to spine so 2nd May bone scan awaited) and also my dex management and the mood swings it creates and the impact it has on Victoria as she cant handle it despite her saying she is tolerating it, she isn't and giving no leeway and throwing herself into work.
I also did a press article recently i semi regret. It was with the Evening Chronicle a local paper. It was supposed to be an 80% awareness piece on the dangers of sun exposure and sun beds with 20% context of my story. Victoria not keen at the exposure so the photos were me and the kids. However those figures got flipped so it was 80% me and 20% facts and no sun bed mention. Headline gave impression i had three months to live! Worse still it ends up on Daily Mail online who ramped the headline further and The Mirror online which was the most balanced as it used Cancer Research UK quotes that day to talk about sun bed usage. The story then went viral across the world!! A lesson learnt...I have now spent more time having to tell people the headline is sort of true but not etc.
Signing off now, mammoth post. I have tickets for the FA cup final to see Arsenal v Hull on May 17th all being well ( i am a huge Arsenal fan). A company have given me 4 freebies in Club Wembley with a meal, so prime seats after seeing my newspaper article so not all bad!. I deliberated long and hard about James going but aged 6 its a long journey down to London from Newcastle. Hectic crowds, tubes, etc etc that I can see it being too much for him and me. If he were 9 or 10 perfect. So I am going with three pals one of whom is in London and has sorted us a five star hotel he manages for £40 that night so really looking forward to it with a worry that i will be on Ipi by then and suffering potential side effects. My friends have been superb through this and cant do enough but probably spent to much time in the local pub as a result. Victoria and i have our 9th wedding anniversary on 28th May so i have booked a surprise night in Bamburgh, Northumberland where we spent our second night of marriage (before flying to Paris in 2005 and going to NYC and Toronto on our first anniversary) and my Mum and stepfather have kindly agreed to come up and babysit. In July it is Victorias 40th so these little milestones are there to keep focus on as this journey continues as life is for living.
Ok i wont promise but i will try and be better at updating
x
