Thursday, 16 May 2013
Tuesday, 9 April 2013
Friday, 25 January 2013
Tuesday, 13 November 2012
Peter has recently discovered a lump, and is going for the op within the next few days..
I just want to send my best wishes and good vibes to him.
He is also running a blog, http://mytesticlelump.blogspot.co.uk
Im sure you'll be fine mate.
And on a separate note, a very good friend of mine who was diagnosed with bowel cancer and has just gone through major surgery and 6 months of chemo recently got the ALL CLEAR
Love from and to the universe.
Thursday, 17 May 2012
Tuesday, 24 January 2012
Wednesday, 13 October 2010
Monday, 19 July 2010
Sam Benjamins's testicular cancer diary
In October 2009, 27-year-old Sam Benjamins was diagnosed with testicular cancer. During the next eight months of treatment, he kept this video diary
By Sam Benjamins & Heydon Prowse
Wednesday, 10 February 2010
Monday, 8 February 2010
THANKS I LOVE YOU
Thanks so much to all those people who got in touch and showed me the love…it helps a lot. I know its hard to know whether to bring up these things with people when you hear their bad news…in my experience it did help. I said this in an email to a bunch of people actually...here it is again for EVERYONE around me, and for anyone else who ever gets in a similar situation, its funny, people do give a fuck! What a lovely realisation about the world to come out of all this. Thank you xxx
Yes the past few weeks have been pretty bleak, and the love Ive got from all sides has been a great help...Its one of those funny ones where you hear something really bleak happening to someone you love and its always difficult to know whether passing on your love and concern for them is the right thing to do..I know Ive always felt a little awkward about expressing such things, you never know whether the person will appreciate it or feel awkward about it being brought up, or rather not talk about it rah rah rah...from my experience it has been nice to hear from people, so I know in future to try to express myself in the same way! Some people would believe that being sent love like this from all around you will directly aid healing...I would say I am one of those people, so everyone around me is a little responsible for me being alive for years to come (remember that next time Im wasted at and ranting some obnoxious bollocks in your ear!)
One of the big positives of it all is hearing from everyone, and knowing that all those people you love from throughout your life are real and the relationships are real...lots of you choads I rarely see or speak to but you all, and many others besides, are all considered friends of mine and I hope you all know you can count on my love and support.
End of Week 14 / Beginning Week 15 – Round 3!
Hospital. Waiting around. Blood tests. Bla Bla Bla…
“YOU’RE BLOOD COUNT IS VERY LOW SIR – WE WONT BE ABLE TO GO AHEAD TODAY”
What!? Damn. OK. When?
As my blood count was so low, specifically the neutrophil count, they would give me an injection that would stimulate my bone marrow to release white cells into the blood. Interesting!
So that’s what they did. And I went out for dinner for NYE which was nice…glass of champagne, or was it two…but returned to the hospital in good time so I was still safely locked away out of harm’s reach…
A couple of people called me that night which cheered me up...thanks girls x
I was warned that this injection could make my bones ache. IT FUCKING DID. All my bones throbbed with each beat of my heart for about 48 hours! However, pain killers work very well on pain, so it wasn’t so bad…
So New Year’s Day Round 3 began. I was out of hospital 4 days later…and SO pleased to get out of there. This was really starting to wear thin! The old moral was starting to get hit..jesus, so glad it was only 3 rounds…hard rounds but only 3..
In fact, my doctor suggested that we were probably vastly over doing it with 3 lots of this treatment…that seeing as it was clear after one round…even round 2 was maybe unnecessary. HOWEVER, being as there is no statistical evidence comparing the effects of 1, 2 or 3 rounds and the percentage of recurrence in each case…DID I WANT TO BE THAT TEST CASE? NO NOT REALLY.
Given the option, I would have chosen the third round anyway I think. Anything to stop it coming back right?
Of course, when given that option, you don’t know how bad its going to affect you. Round 3 was definitely the worst by far. I didn’t get the same horrible intense sickness I got in the first round…they amended and added to my anti-sickness plan and it worked (although round 3 they switched me back from metrochlopromide to domperidone. No one could give me a sensible answer as to why seeing as last time it all worked so well. This was intensely irritating to me..but “let it go!”…as was the conflicting advice as to when it was best to take this or that…but whatever, “let it go!”)…as I said earlier I think…KEEP CONTROL OF YOUR OWN TREATMENT…from my experience, the doctors and nurses and such like are all dong their very best to give you the best treatment possible, HOWEVER, it cant be as important to them as it is to you who is being treated, and they have to look after a lot of people…so my advice is to make sure everything is as you think it should be…take an interest. Not to mention that when I apologised to one of my nurses as I kept grilling him about details “why this, why that” he told me that from his experience he thought people who do take that kind of interest in their own treatment tend to have better recovery rates. Who knows.
It’s now two and a half weeks since I got out from round 3. This has definitely been the worst lot…everything has lasted longer and been worse. In fact, although I stopped taking anti-sickness drugs after about a week and a half that feeling still hasn’t gone, the drugs just stopped making any difference. My hearing was more affected, although that has mostly gone now…Its just tiredness now that’s really affecting me…but that’s ok, I’m just not doing much and resting a lot...luckily my work has been extremely supportive throughout all of this, and I am in a situation whereby I can dedicate all my time and energy to getting better – had I been a freelancer, or a sole trader, or working for an unsupportive employer this would have all been much harder.
I have a blood test at the end of next week to check my blood count is rising back to normal levels – it should be by now really…
And then don’t have another CT scan until 6 months after the last one…and then a year after that. This is a great sign of their confidence in my return to perfect health Im told J
Saturday, 2 January 2010
End of Week 12 / Week 13 / Week 14
Having arrived back home on the Monday, I was driven to my acupuncture on the Tuesday…(thanks Mum!)..which always helps me to feel better…I pay for this myself, but it is available on the NHS, in London at least…although I’m not sure how easy it is to get appointments and how often treatments are available…DEFINITELY worth checking out though.
You are able to do things…just very slowly, no pressure. I wouldn’t have been able/comfortable to drive myself across London to do this, or take public transport, but being driven about is ok...I did also make a trip to the DIY store to buy some paint, driving myself a day or two after being home...so its not SO bad..
The sickness definitely lasted longer this time…generally everything was a bit worse…sickness, hearing, more hair falling out again, no itching this time!...but by the end of the second week at home I almost felt ok again...Christmas with the family was fine, drop of champagne on Christmas day, I ate fine...all good!
Boxing Day I had a strange occurrence…
at about 6pm I got a strange effect in my vision, seeming like I had been looking into a bright light for sometime, I couldn’t see anything a the centre of my vision for about 5 mins...this gradually spread out so that I could see in the centre but not the peripheries of my sight…like a jagged bright line moving outwards…eventually it disappeared but it was soon followed by a pretty bad headache…and an hour or so later ‘pins and needles’ in my left hand, and then my whole left arm, my right arm, my face, my head. WHAT THE FUCK.
So I called the oncology hotline (you are instructed to call this line at any point you feel unwell – with the treatment being what it is, leaving you with no white blood cells, no platelets for clotting, anaemic etc etc, even what would usually be small issues (bleeding, infections, viruses etc) can become serious very quickly.
The doctor on the hotline wasn’t able to determine any suspected cause of all this from my symptoms, but as one must be very careful during this period he advised me to get myself to the nearest A&E for a CT scan of my head…and an MRI scan after that (MRI gives even more detail than a CT)…baring in mind this was now 10pm on Boxing Day I was not amused at this prospect!!
I was assured the Oncology Department would call ahead to the A&E in order that I get fast-tracked in the line. This clearly didn’t happen as I wasn’t scanned until 3am.
Just what I needed, 5 hours under UV lights in a busy A&E waiting room surrounded by local rat bags who had been fighting with each other. WON-DER-FUCKING-FUL.
So I had the CT and was told I would have to sleep on the ward until morning, and then wait about the following day for the MRI scan as they didn’t operate at night.
I lay down in the ward, VERY depressing!, and tried to sleep…HOWEVER within about 3 minutes I had become aware of the chorus of coughing and spluttering around me…IM GOING TO FUCKING CATCH SOMETHING IN HERE..(with no immune system to speak of you REALLY don’t want to be catching anything!...MRSA anyone!?)…so I went and spoke to the nurse…told her of my concerns and that I was going home to sleep...”OH YEA, YOU HAVE A GOOD POINT SIR”…so I waited to make sure the CT scan results were ok…which they were…and I went home.
Got to sleep about 5am. Just what I needed!
The following day I got a call from my oncologist, and from the doctor at the A&E both to check in on me which was reassuring…and both suggested that maybe I had suffered a migraine. Interesting.
My mother has been a sufferer of migraines throughout her life and is certain that these symptoms I described were those of a migraine…albeit a short one it seemed.
There we go. Lets hope that’s not a new regular occurrence!
My third (and FINAL!) round was due to start on Jan 1st. Being as that would be the morning of New Year’s Day, and would leave me out on the loose and feeling ok on New Year’s Eve…I decided it would be better all round if I got my treatment brought forward a day so I was safely out of harms reach on NYE…my doctor didn’t seem to have any issue with this..so that’s what I did…although, the actual start date would depend on neutrophil (white blood cell) count..
Same process as last time. Lots of waiting. My blood count was quite low this time, which meant there was some question as to whether we could go ahead or would have to put things back a day or two, but we went ahead.
The sickness wasn’t so bad this time. They had me on an additional drug, Emend, which seemed to do the trick very well, PLUS I made sure I had the dexamethasone and kytril intravenous before any chemo on day 3 as well as day 1 and 2 (which didn’t happen for round 1). They also took me off domperidone and moved me onto metrochlopromide…for which no one could give me a reason, which irritated me ..but it seemed to work so I was happy
By day 4 when leaving the hospital I felt pretty bad, but could have been worse! Plus I knew it was working for now so that helped a lot with my moral. I was pleased to get home, and cook some good fresh food…some kind of stir fried vegetables, wholegrain rice, organic chicken...perfect. I also had one sip of wine…it tasted fucking good! (No one actually told me to stop drinking…but it cant be a good idea to drink whilst your body is being put through all this, so in the main I refrained from alcohol)..
There’s not much more to be said…it was the same as last time. 2/3rds down!...Here I am in situ:
Midday appointment for a CT scan of my head and body.
Contrast injection, hot feeling…into the doughnut…and then several hours to wait until the radiologist and then my oncologist have had a chance to assess the results.
Another tense day.
IT IS FUCKING CLEAR!
Basically the two slightly swollen lymph nodes in my lower abdomen had decreased back to normal size. This implies that the assumption that cancer had spread into the two lymph nodes was correct, AND that it had responded to the treatment. There was now no detectable trace of cancer in my system. So just two more rounds of chemo to make sure.
Sunday, 27 December 2009
Week 9 / 10 / 11
Once home its basically about a week or so of feeling hollowed out, sick, tired, weak, feeble. I thought I was getting short of breath at times, but when I saw my doctor my lungs appeared fine. I think this was anxiety actually…the feeling of panic whenever I started to think about my breathing...
It’s a pretty horrible week or so but manageable, I’ve had worse hangovers, although they have never lasted a week!...The second week things start to ease up, but the anxiety/breathing issue still crops up during the day occasionally…
By the third week at home I’m feeling pretty much back to normal…all the while I'm having acupuncture once a week which I have no doubt helps considerably.
About 15 days after the treatment began I noticed my hair falling out one day in the bath…my hair’s pretty short anyway so it needed me to tug at it, but then clumps come out…it’s a very weird feeling…and even though I’m not too worried about my hair it was quite distressing, like you’re falling apart or a radiation victim from “When The Wind Blows” ( a very bleak story about nuclear fallout)
So I shaved it all off, grade zero.
My biggest concern through all of this period was “Is This Actually Working” – a CT scan the day before round 2 will tell me.
Thursday, 3 December 2009
End of Week 8
I spent the last few days frantically trying to find out where I can make another deposit just in case of fertility damage. I paid for the first one privately and it’s pretty expensive to maintain on a yearly basis, I should be able to do this for FREE on the NHS surely!
I now realise the risks are quite low, AND I have already been through all this once BUT, IF the worst does happen I want to be covered!
It was OUTRAGEOUSLY difficult to find out how and where you can go for sperm freezing on the NHS. My GP didn’t know, promised to come back to me once he had done some research and in the end didn’t. I called NHS direct who were friendly and did their best but the ‘best’ was to suggest somewhere hundreds of miles away from me. I live in fucking London for fuck’s sake!
In the end it was my Oncologist at Bart’s who was able to advise me on this, and I went ahead and did it at Barts. It was a rush, they need to check your blood for disease etc which takes a day or two, then book you in etc etc…anyway, I got there just in the nick of time, the day before chemo was due to start. Another pleasant experience of jerking off in a hospital! Lovely!
I guess making deposits in separate places might be going overboard, but I’m not going to let my future be determined by the possibility of some arsehead switching off my fridge at some point down the line…
Round 1 - Friday
Funnily enough I had actually started to kind of look forward to going in for the chemotherapy. Everything I had lined up to look forward to had been cancelled, this was going to be an experience to remember and I wanted to get it started. Plus I was intrigued.
Checked in at about midday…followed by a day of blood samples, cannulas being inserted into my veins, waiting, more waiting…some sitting around..
Finally they hooked me up at 7pm. Started with a dose of steroids and anti nausea drug intravenously. Then chemo. One in each arm.
This is how I remained for the next 4 days.
Day 1 was fine (dexamethasone [steroid] + kytril [anti-nausea], 2 hours Etoposide, 4 hours Cisplatin, saline etc x2 over 8 hours each, 24 hours Bleomycin in the other arm). I ate during the day, no problems.
Day 2 “Bring it on!” (same again) - by the end of Day 2 however I had started to feel somewhat nauseous. I had eaten again quite normally.
Day 3 (just the Etoposide and Bleomycin, no Cisplatin thank god, that’s the worst of the 3) they didn’t give me the steroid and anti-nausea intravenous this time. I lived to regret that!…the night of day 3 was the worst I felt throughout the whole ordeal…I woke in the night feeling SO SICK. It’s a weird kind of sickness, like nothing else, hollow, acid in your throat, just horrible horrible sickness throughout your whole body. BUT it was manageable, it could have been MUCH worse I’m sure, and its just a matter of being on top of the sickness. Eating today wasn’t very appealing but eating SOMETHING does help get rid of the sickness I found..
Day 4, tired and pretty sick feeling still but just a few more hours of Bleomycin left and that one is not so bad.
Once it was finished I ran a bath. I was on the phone and started hallucinate that my floor was pulsating. It wasn’t. I forgot about the bath and had flooded my room. Ho ho. Sorry nurses. I moved to my third room of my stay!
In addition to the drugs listed above, there was also a selection of further anti-sickness drugs that were administered at intervals to try to keep the nausea under control. Domperidone was the predominant one…but there are lots, some work better than others for each individual…
The Kytril, or granisetron, acts on the serotonin receptors in the brain, my understanding being that it effectively tricks the brain into thinking it doesn’t feel sick…other options that work like this are Ondansetron (Zofran), Tropisetron, Palonestron…
Other, maybe more traditional, anti-sickness drugs work on the actual digestive tract, making sure that nothing can move upwards (i.e. being sick!)…this goes for Metochlopramide
…or the antihistamine, or motion sickness route…such as Cyclizine, Hyoscine
Or sometimes I’m told sedatives are used such as lorazepam, haloperidol..
A very new option, called Emend, works via substance P inhibition, i.e. a specific receptor in the brain…again my understanding being it tricks the brain into not feeling sick…
My understanding of the dexamethasone (steroid)is that it helps by enhancing the effect of the other drugs on the body and helping the body to strengthen itself…
Please note these are my understandings of how these drugs work, but I found it helped to have some idea of what was being given to me and how they worked…it also helped me keep track of what was working better than other things, and to remember that for each treatment. This list was actually sent to me before I went in by a friend (a friend of a friend in fact to give her the credit rather than him!) -it was really useful and very much appreciated so I would advise people doing the same..
(KEEP CONTROL OF WHAT YOU ARE BEING GIVEN! AS MUCH AS PEOPLE ARE LOOKING AFTER YOU I ALSO FELT THAT THIS IS MY TREATMENT AND I SHOULD BE AWARE OF WHAT IS HAPPENING…)
I went home feeling like shit but very pleased to be out of there and to have got round 1 out of the way fairly unscathed. It did hit me on day 3 which was a bit of a worry. I woke up feeling really down and depressed that morning, the worst thing I think was that very slim chance that the cancer wouldn’t respond to the treatment. This doesn’t happen often with this cancer, but it can do, and with other cancers I think the outcome and effectiveness of chemotherapy is more uncertain. This is tough…not knowing whether this bleak experience is going to cure you or not.
They packed me off with less than a week’s supply of anti-sickness pills…(I felt a little uneasy I might run out so spoke to my GP and got a repeat prescription. Turns out I did need more than originally given, but I stopped taking any anti-sickness pills as soon as I felt I didn’t need them…by about a week after coming out)…I was also given 10 days worth of antibiotics to take day 10-20..
A very stern conversation. Halfway through I start to panic – THIS IS HORRIBLE.
“You will be having 3 courses of BEP – Bleomycin:, Etoposide, Cisplatin”
(links to further details in the reference section)
It had been mentioned that I would probably need 3 courses…I figured this meant chemo over 3 days. It turned out to mean 3 days (in fact 4 days as the Bleomicin was 3x24hrs)…x 3 courses…with 3 week intervals between each start date. So 9 + WEEKS!
“You will experience Nausea, although this can be pretty well controlled with anti-sickness medication. You are very likely to have some Hearing Damage; nerve damage resulting in tinnitus, upper frequency hearing loss. Lung Damage, some scarring is possible but we will keep a close watch on this. Hair loss, you WILL loose your hair. After about day 10 from the start of the chemo you’re immune system will plummet; white blood cells, platelets, even red blood cells eventually – this means if you get sick, catch a cold or some other illness your body has nothing to fight it off, you can die from this quite easily and must have the 24 hour oncology line for whoever is treating you so they can advise you to be rushed in to hospital to be treated urgently. Skin rashes and irritation. Fertility damage (I was pleased to hear that this was actually less likely than I thought, I still made plans to make another deposit elsewhere from the first to be safe).”
I’m sure there are many more…everyone reacts differently.
The strict diet regime continues…
Tuesday, 3 November 2009
Beginning of Week 6
CT Scan…moment of truth. Again.
Go into the scanning machine around midday…lie down, go through the giant doughnut, then get injected with a contrast solution (this makes you feel strangely hot for about 3 minutes, in some odd places!)
Beginning of Week 6
Go for lunch and hang out with my Mum for the afternoon, pleasant day if not for the underlying bleakness, thanks Mum!
I meet with my urologist that evening to discuss the CT results, and the tumour histology in more detail ….
The exact words escape me now, but it had spread. Evidence of cancer cells spreading up the blood vessels from the testicle was found, and the CT showed spread into the lymph system. FUCK.
BUT we’d caught it pretty early, I was in the very very first stage of spread. It had gone into my lymph system, but was only evident in two lymph nodes in my lower abdomen, probably the very first place it could have gone to. And the were only slightly enlarged, 14-15mm diameter as opposed to about 8mm….
My stage: P3, N1, M0
FUCK. I’M. GOING. TO. HAVE. TO. HAVE. CHEMOTHERAPY.
THIS IS GOING TO BE TOUGH
My urologist didn’t want to go into too much detail about chemo and the ins and outs of my particular course, this wasn’t his speciality now…this was for the oncologist to decide and work out with me.
I walk home in shock, scared, depressed, but pretty determined.
Someone I love very dearly brought to light in a very strong way how tough this was going to be on my body and my entire self. That I had to stop everything bad for me, detox, take in only the best foods, stop drinking, smoking…that holistic lifestyle I’ve always believed in but never really followed.
It wasn’t really that difficult but the harsh words brought it home and were needed I think. Sometimes you need someone to tell you how it is!…I stopped smoking completely, stopped drinking completely (for now!), changed my diet (although it wasn’t TOO a drastic change I focused myself this time)..
There are lots of books and references online for all of this but very quickly…Wholegrain rice, lots of fruit and vegetables, focusing on dark colours (red cabbage, beetroots, kale, broccoli, carrots, pomegranates, berries, citrus. Nuts, seeds, berries, wheatgrass, food supplements, vitamins, Echinacea, milk thistle, lotus flower essence (!) etc etc. Avoiding dairy as much as possible, really cutting down on red meat. Cutting down on animals and animal products generally. Organic where possible, to avoid the additional strain to the body of clearing out pesticides , the effects of irradiated food and hormone injected animals, and the effects on animals of being force fed other hormone injected animals and pesticides, and irradiated fruits…and other such crap we’re forced to consume due to the nature of the society we live – although I’m certain all this makes a difference, you’re also probably better off eating non-organic but eating well rather than avoiding anything if you cant source it or afford it to be organic (it is OUTRAGEOUSY more expensive).
I feel now that in some ways this was lucky...had there not been this evidence of spread from the CT maybe we wouldn’t have gone with the chemo, or maybe I would have had only one round…with no chemo at all it would have been a chance for the cancer to spread even further before the next CT, with only one round of chemo it may have pushed it back but then allowed it to come back with a vengeance. I don’t know.
Go for lunch and hang out with my Mum for the afternoon, pleasant day if not for the underlying bleakness, thanks Mum!
End of Week 4 / Week 5 / Rolling into Week 6
So now it’s a matter of recovery and healing from the operation.
The next stage will be the CT scan of my body to check for any signs of spread…this will be very tense! I could have had this done before the operation but it really makes no difference, and because my urologist wanted to get me in to remove the tumour as soon as he was confident that’s what it was we left the CT, and booked me in for the operation the following day…and the wonderful sperm bank in the morning of the same day…so CT booked for about 2 weeks time…If it has spread it means chemotherapy..if not, its basically over.
These days aren’t so bad…I’m on a pretty good concoction of painkillers and sleeping pills…operation went well, the pain comes if I let the pain killers wear out…as the days go by I try to reduce the amount of medication I’m taking, very gradually.
Although I have no strict aversion to medication I am a believer in a holistic approach to life…to physical and mental well-being, and to the inter-connectedness of things (now there’s a vague waffly sentence...but true nonetheless) and I believe that the constant ingestion of pills cannot be good for the system – although this has to be balanced with the benefits of not being in pain or not being able to sleep, which also cannot be good for the system when trying to recover..
(ps when I SAY “I am a believer in a holistic approach to life” this is how I think, not always how I ACT if you catch my drift – I’m no holistic vegan yogi!)
Although I think I’m a pretty healthy eater anyway, I try to pick up my game…but I’m not really focused on this…I continue to drink (I say in moderation but probably well over what would be recommended), smoke a little (I do mean a little, less than one cigarette day)…basically treating myself to whatever I feel like. I’m still invincible. It will be ok. Surely I wont have to have chemo!
By a couple of days before the CT I can walk slowly...although not stand about for long, and to be honest am well on the road to repair. Still very odd sensations in my groin, skin feels odd to the touch, cut is healed enough to remove dressing by about a week into recovery.
My urologist calls me to tell me the histology of what was taken out has come back, IT WAS INDEED CANCER SO WE’VE DONE THE RIGHT THING…
One bit of good news, it hasn’t spread locally, I half assume this means it hasn’t spread at all…
I get very drunk about 2 nights before the CT…this was a mistake, I went for a civilised late lunch and drunk a little, then a little at home...one thing leads to another and well…very drunk and very hung over the next day. Sick out one end, and intense pain in my wounded lower abdomen with each retch. A lesson learned…but my stress levels were obviously pretty high…I find out tomorrow if I’m lucky enough to escape or if the ordeal gets worse.
My view on the operation has changed. This was worth it. I don’t want cancer.
“I’ll be alright….right!?”
Week 4/Day 3
Visit to sperm bank around midday. Pretty uncomfortable and unpleasant experience. But pretty funny nonetheless….
Lead down the corridor..
Here’s the toilet sir…and here’s your room, I hope you’re comfortable
(IT’S A FUCKING CONVERTED TOILET CUBICLE. A BENCH WHERE THE TOILET SHOULD BE. IS THIS GUY HAVING A LAUGH.)
Ah, don’t forget your pots HE HANDS ME 3 POTS…2 deposits would be good, try for 3 if you can.
3 FUCKING POTS!! HA HA! ILL TRY!
A hot and sweaty half an hour ensues…2 POTS. (Always bring your own material – 10 yr old ‘Readers Wives’, coupled with the reason for being there, in a converted WC, is not conducive to the necessary vibes. Get me.)
VOILA. 2 POTS. AND GOOD ONES I RECKON. ;-)
(they were in fact very good pots worth it turned out…a little good news huh!)
Slow walk to hospital.
This was a difficult afternoon. Voluntarily walking into a hospital to do this seemed insane. I knew it had to be done but I was scared. What if I lose BOTH of them. I’m not invincible. What if I’m totally screwed. If this is the start of the end of everything. It could be. Shit I’m seriously stressed out.
I am moved upstairs for surgery…
“Here’s the gin and tonic sir” (that was the anaesthetist injecting me with the general anaesthetic).
HMMMM THAT’S PRETTY GOOD……
AHA! SO…HOW DID IT GO…GET THE RIGHT ONE DID YOU?! HO HO!
Hello sir, the operation went very well...the troubles I thought there might be don’t seem to have been there.
GOOD NEWS HUH!?
Feeling quite good.
More morphine please nurse.
Week 4/Day 4
Don’t feel too bad.
The pain killers are pretty good!
Have to queue in line and then wait for the pharmacist to package my order up – this takes about 20 mins. DON’T THEY KNOW IVE JUST HAD A BOLLOCK LOPPED OFF?! OBVIOUSLY NOT. PAIN KILLERS DO NOTHING FOR MY PATIENCE AND GENERAL TOLERANCE LEVELS.
My Dad takes me home and I chill.
I don’t look down for a good couple of days. Ouch. Shit.
Week 4/Day 1
The Urologist tells me its almost certainly cancer. He will save the testis IF he can, although in most cases this is not advisable. He said he’s one of the very few in the world that even tries to save the testis, it’s a more difficult operation, and has a higher incidence of recurrence. With my emphasis currently on not having my bollock chopped off, this seemed like the most I could ask for. And in fact a hundred times nicer to hear than a blank assumption that removing a nut is an everyday thing, and no alternative will be even considered!
WHAT ABOUT MY OTHER ONE?!
It is VERY unlikely to spread into the other one.
They have different blood supplies, etc etc, it will spread upwards into the lymphatic system, and then into organs such as the liver, the lungs and eventually the brain…usually before spreading into the other one.
OK. SOUNDS GOOD!
(!?!? Would most guys think like this?! Seems stupid, but logical!)
I would advise you to store some sperm though, just to be safe. This one may be the only working one, plus you never know what’s going to happen.
(There is an increased chance of developing testicular cancer in the other one, but there isn’t necessarily a reason for this…but statistically it is more likely…either 2 or 3pc, or 2 o3 3 pc higher than if you haven’t…MUST CHECK THAT OUT…)
We discuss putting in a prosthetic, a fake nut, I initially say yes to the idea. If I wake up with something where it should be maybe it will be less distressing. He eventually decides that with the report he has it could be unwise to do this, he gets a second opinion, and firmly advises me it would not be a good idea to have a prosthetic at this point in case there is any local spread it may cause complications. “You can always have it put in later” (I’m writing this about 7 weeks in and am actually quite glad I didn’t get one…seems pointless somehow – and to have surgery to have one put in seems even more pointless..hm)
He booked me into his preferred radiologist for a second opinion. That was reassuring too. If she determined it to be cancer then he would have me in for the operation the following day.
Until that point I wasn’t convinced it was definitely cancer.
I went home feeling pretty staggered. FUCK.
Telling the family would come tomorrow, once I knew for sure. Invincibility factor MUST come in the next 24 hours!!!
Week 4/Day 2
Work day time. Tense day. Tell my boss, my team…THERE’S A GOOD CHANCE I WONT BE IN TOMORROW, OR FOR A WHILE!...very supportive and positive responses. I love you all thank you!
Ultrasound late pm – yes it’s a tumour, yes its almost certainly cancer. They wont know its DEFINITELY cancer until they have removed it and got back the histology report.
(They don’t really do biopsies or alike for testicular cancer, I think this if for two reasons..(i) ultrasounds are very reliable in this instance, an experienced radiologist can tell whether its got a high chance of being cancer just by looking (ii) if it IS cancer, and they start poking about at it, if even ONE CANCEROUS CELL is spilled because of the biopsy they have actually spread what may not have already spread)
I go to see urologist, he books me in for the following evening.
During this discussion my attitude changed. This was cancer. Get rid of the little bastard that’s trying to kill me. No longer did I fear losing my testicle over the cancer. This was cancer and I needed to get rid of it. I want to live. I love my life. I love my friends and my family. I love the people I work with. I want to do more. CHOP.IT.THE.FUCK.OFF.
Stiff couple of drinks.
I call my family. Not the end of the world don’t worry. Just a little operation. It will be fine. They were lovely. They didn’t stress (at least to my face) as much as I had feared. I didn’t talk to them until now as I knew it would be a difficult thing to hear, for all of them, for different and for the same reasons. Love you!
I wake up in the night shitting myself. Literally crying my eyes out. I hadn’t cried for a long time, except a little the previous night when speaking about it with someone. FUCK! THEYRE GOING TO CHOP OFF MY NUT.
Monday, 2 November 2009
Week 3 / Day 1
I went to my GP with a lump, he said it was probably nothing to worry about, epididymitis probably (literally meaning “an infection of the epididymis” or something like that…) in other words...you’ve got swollen bits near your nut, probably where the epididymis is therefore…its probably an infection of the epididymis …here are some antibiotics, come back in a couple of weeks. The lump was very worrying to me, almost definitely would be to any guy...WHAT THE FUCK IS THAT ON MY NUT! FUCK! MY NUT! FUCK!...it took me about a week to go and get it seen to, hoping it would go away, although definitely wouldn’t be the first time I had had to pull my trousers down to a doctor I was still slightly embarrassed at the idea…am I being a hypochondriac? Is this somehow less manly than going to get checked out for an STD? Am I worrying about nothing? FUCK THOUGH IT’S MY FUCKING NUT! Anyway, I battled my way into an emergency appointment, got prescribed the antibiotics and told it probably wasn’t anything to worry about…this is not to blame my GP, to be fair MOST similar cases probably are NOT cancer (only 2000 men a year are diagnosed with testicular cancer in the UK, out of what, 30million men?) – cysts, epididymitis, an STD etc etc. I can’t remember clearly whether I pushed for an ultrasound, or whether the GP referred me without my asking, but refer me he did, to the local NHS hospital.
I went straight to the hospital, only to be told it would be SEVERAL WEEKS before I could get an appointment...RIGHT, IM OFF, DON’T YOU REALISE THIS IS A FUCKING EMERGENCY YOU BUTT HOLE, YOU TELL ME YOU’D WAIT SEVERAL WEEKS TO PUT YOUR MIND AT EASE ABOUT THE OLD FAMILY HEIRLOOMS…so outside I went to try my private health insurance to see if I had any better luck there, I got an appointment for the next day! I tried the NHS first I promise! Although having private health care means I’ve just been treated at almost zero cost to the government and the rest of the country, people who can possible afford it probably should…out of principle its annoying I know, I pay national insurance, why shouldn’t I get good treatment out of that?! Anyway, the fact of the matter is I got seen quicker, and have been MUCH more comfortable being treated privately…I will come back to this later but it ranges from having the newest, the best, and/or most expensive drugs on the market at my disposal; to being seen quicker (this is HUGELY important when dealing with cancer…one consultant suggested that if Id had the tumour removed a month earlier there may have been no evidence of spread…ANYWAY if if…); to having your own room in hospital; to shorter queues for all of the MANY appointments you have to go to; to having a nicer waiting room with less people in it...the list goes on. Plus, why not, it frees u a space for someone who doesn’t private health care.
There’s my debate on health care then…it should be available free to everyone, and if you have the means or opportunity to insure yourself as well then do. Although I’m not sure what all this means for any potential future private healthcare for myself…sure to find out soon enough.
So, where was I, ultrasound, Week 3/Day 2, radiologist tells me I have an abnormal swelling, but its not a problem, you can just remove it.
ERR REMOVE WHAT!?
WHAT. THE. FUCK?!
It’s a very simple operation, very safe, it wont affect your life at all, you can be in and out in a day.
WHAT. THE. FUCK. ARE. YOU. TALKING. ABOUT.?!
ARE YOU SERIOUSLY SUGGESTING REMOVING MY FUCKING BOLLOCK?!
(I didn’t like this guy much – he was blank faced, didn’t seem to really care, or pretend to care, reckon he would have done it there and then with a spoon if he could have)
WHY WOULD YOU DO THAT!?
There’s a good chance you have testicular cancer sir, to treat this, the most effective thing to do is to remove the testis.
WELL WHAT ARE MY CHANCES OF NOT HAVING TO REMOVE THE TESTIS!?
Then I said something I still think is quite strange…
IM ACTUALLY MORE WORRIED ABOUT THE POSSIBILITY OF HAVING A NUT CHOPPED OFF THAN HAVING CANCER.
That is weird I think, especially when the reality of “having cancer” actually started to sink in.
I went back to my GP with this news, and got to see a urologist consultant several days later (I would have seen him quicker but he was away for a few days and he was highly recommended and this seemed the best course of action. Sit tight, wait to see the best I can find.) He was very good, an is available to see both on the NHS and privately – I list his name in the CONTACTS entry of the blog
So far I hadn’t told anyone.
I was in shock; I was really upset; I was kind of embarrassed; I didn’t want to worry people; I didn’t want to cause a commotion and then be ok; I was hoping I would get away with it, holding out for a spot of luck, that invincibility factor we all have, we think.
Towards the end of the week a good friend I happened to see detected something was up and bugged me for a day or two until I told her. We were at a Dame Shirley Bassey gig, oddly enough. Good gig! It was difficult, but it actually really helped to have broken the ice.
I got very drunk, told a couple more people whilst off my face. That didn’t help so much, I sort of regretted letting that slip, but at least a few people knew so I had to face up to it.
I didn’t feel embarrassed any more. No one’s response was amused in any way. If it can happen to you it can happen to anyone is probably what it makes everyone think. Shit man.
There were one or two people who were harder to tell…so that waited a few days.
Week 1 / Day 1
Slight lower back ache on my right side...maybe kidney pains. Have I been drinking this weekend? Flu-like symptoms.
Week 1 / Day 2
Feels better. Go to work.
Week 1 / Sometime later in the week
I find a lump on my nut. It hurts.
AHA IT HURTS…lumps due to testicular cancer don’t usually hurt. SO IM OK.
MAYBE ITLL GO AWAY.
I call a hospital and try to book an ultrasound. I’m told I need a referral from a GP. Try to get a doctors appointment – they don’t have anything for 2 weeks. I book in the earliest appointment.
Hm, still there, quite large. FUCK FUCK FUCK. I NEED TO SEE A DOCTOR.
MY NUT. FUCK. WHAT IF THEY CHOP IT OFF? DON’T BE SILLY THEY WOULDN’T DO THAT. WHAT IF IT’S CANCER? CAN’T BE. ITLL GO AWAY.
End of Week 2
OK. THIS IS SERIOUS. MAKE THE DOCTOR SEE ME – ORDER AN EMERGENCY APPOINTMENT FOR MONDAY.
Sunday, 1 November 2009
TESTICULAR CANCER – BLOG
Where do I begin…although I have been recording video entries they were not done with any kind of regular interval, more when I felt up to it and when I was at an interesting stage, and I think often some details and key feelings or reflections were missed due to me being on camera, and not really liking the idea of that.
Although I thought about documenting the drama of it all from very early on, really from the minute someone seriously suggested I might have testicular cancer, I didn’t actually pull out a camera, or realistically put the idea into motion until after the operation and until I was told I it had spread and that I would have to have chemotherapy.
I think the operation to remove my testicle was one of the fucking hardest things to come to terms with about the whole thing actually. “YOU HAVE TO DO WHAT!?” Masculinity. Kids. Being Normal. Embarrassment. Down To My Last One! FUCK!
This isn’t the hardest thing I’ve ever had to deal with; and probably wont be the hardest thing I am yet to deal with. It definitely hasn’t been easy, and still isn’t. Worse things happen to people. My life isn’t over. There were brief patches...days, hours…where it seemed like it could be. But it isn’t.
Testicular cancer is very curable. I hung onto this fact. Cancer in general can be curable, although just HOW curable depends on many many things, early detection seems always to be the most important factor, and where the cancer originates – “cancer” is a term that takes one about 200 different forms, the traits of each are determined by which cell group mutated into a cancerous cell or group of cells. Those traits will determine how aggressive it is / how fast it spreads; how well it responds to chemotherapy and radiotherapy; for some of the harder to treat cancers there are now developments in biological therapies; and ultimately what the outlook will be.
It’s a shock, but something almost everyone is certain to come across in their life. For me, although I was obviously scared this could be the end of my life, at least as I know it, I feel it wont be and it will make me stronger. I have been positive for the most part, and still am, and either way will take many positives from it.
I’m 27, live in London with 2 housemates, work in the music industry, travelling the world for both my job and whenever I can for holiday. Although generally try to be thoughtful and sensible about life, I’m the same as, or worse than, most people I know…I go out, I drink, I talk a lot of shit, I go to bed very late…I probably try to eat more healthily than some, but don’t spend a lot of time exercising. Generally I figure Ill be ok, in fact…I actually believe/d that I would outlive everyone I know and love…not because I’m healthier, but because my cantankerous nature would suit the old bastard that got left behind 20 long old years longer than anyone else. Ha Ha. Now I’m not so sure!
My biggest worry is the state of the world, the downward spiral we seem to be on, the overpopulation and over consumption we’re so addicted to. I cant talk much, I fly a lot. However, I think our problems are bigger than individuals, they are written into the blueprint of global relations and lifestyle. I could go on forever…
This is coupled with my own personal worries about the state of my life (which I love in the main)…and my need to do BETTER..MORE!
Saturday, 31 October 2009
If at any point someone wants to get in touch with me please feel free...
The whole blog idea started as wanting to create a short informative and positive film documenting the situation and the process and that would be out there to help raise awareness, break down some of the taboos and embarrassment around the condition, to help encourage guys to be aware of the possibility this could happen to them, and that getting checked out early can make the whole situation MUCH less of a problem and much easier to deal with...potentially saving body parts, and life! If it does nothing else then just to reassure and to be informative...writing a blog was suggested to me to be part of that process, and although it wasnt something I had considered and didnt feel overly comfortable with I figured it would be a way of being much more detailed about the whole process...
It’s meant as a record of my experience and my understandings so I hope I don’t contradict anyone else’s experience or understandings…and I hope not to mislead or misinform…
The entries weren't necessarily written on the dates posted, or the days they happened..but I've tried to upload and post them in a way to make it easier to read and to make more sense for people...plus not giving all the exact dates made me feel like I am at least keeping something private,if that makes any sense.
There is some quite strong language. This is necessary I think. Strong language was what was often going through my mind!
There are video diary entries throughout at their relevant times..
The short film is still being made...I will upload it when it’s done