My Testicular Cancer Diary - Part 5

My Testicular Cancer Diary - Part 5

It's been a while since I posted anything on here, and I have just realised that I never posted the most recent video...so here it is.

In a nutshell, Ive been back at work for about 6 months and in the main have been completely fine. My hair grew back in February (about 8 weeks after my last dose of chemo), but there have been a few odd patches on my beard etc here and there, which has pretty much gone back to normal now.

I notice that I find I get tired more quickly than I used to at work still. After 7/8 hours in the office there is a horrible deep rooted tiredness that I didnt used to have. I hope this will clear up.

After an amazing summer of feeling on a complete high, and extremely excited to be back out on the loose, I think there's a bit of a come down now. I am realising that maybe Im not quite 100% and it will take longer than thought. It's quite vague and hard to pin down and I think can become a little depressing.

Maybe Ill come back to you and let you know how it goes.

Thanks to everyone who has been in touch, it's nice to know that this has all been of some use to the world.

x

The Guardian Feature's My Diary

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

http://www.guardian.co.uk/lifeandstyle/video/2010/jul/07/health-sam-benjamins-cancer-diary

By Sam Benjamins & Heydon Prowse

WEBSITES to check out...

www.cancerherlp.org.uk

Bleomycin:

http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/bleomycin

Etoposide

http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/cisplatin

Cisplatin

http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/cisplatin

http://www.checkemlads.com/

http://www.macximum.com/timstollery/

Checking in...almost 6 weeks after the 3rd round

I thought I should just check in...

Most of the noticeable side effects have worn off now...or I should say are much less than they were so I think they've worn off. If I compared it to me at the start I think I probably still feel shit. Tiredness is definitely still an issue...being careful not to over do it, but WHATEVER...Im getting on with life now, too much lingering around my house over the past few weeks. Still, I did get to miss out the best part of a pretty bleak winter so "every cloud" and all that

I think a week or two after I got home from this last round the psychological and emotional effects started to seep in. I think that in a crisis all your focus and energy goes into getting you through that crisis and out the other side...I think you put all the other effects into a box somewhere to be dealt with later. Since the worst of the effects have worn off I find myself reflecting on it all and feeling quite sad...if thats the right word...emotional maybe, upset...hm not sure...definitely reflective. My dreams were quite panic'd for a week or so but that seems to have died down. Anyway the last thing i need is some subconscious long lasting effects from burying my troubles...people have advised me that seeing a therapist would be a good idea (a shrink that is)...I think now I feel like it might be useful, its quite difficult to discuss such issues with people, you need a lot of time to ponder before getting anywhere and generally people lose concentration unless its their job, or they have a particular vested interest, plus having a regular time and place dedicated to your deep and meaningful waffle to come out kind of forces you to think about it. I havent done this yet anyway so its all just assumption so far.

THANKS I LOVE YOU

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!

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

End of Week 12 / Week 13 / Week 14 - Recovery

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 1^st. 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..

Week 12 - Round 2 Chemo

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:

Week 12 – CT Scan

Week 12 - Day Before Round 2 Chemo

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!
THANK GOD.

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.

I cant quite believe this good news...feels like the first bit of good news since this horrible saga began...actually its not, that the cancer was even treatable was good news, that more than 90pc of sufferers live the rest of their lives without much or any detrimental effects was good news...but all of that is meaningless until you get this piece of good news I think...the bit that is relevant to you, that excludes you from being the 1pc, or 5pc, or 50pc or whatever it is, that possibly doesnt respond to treatment. I still felt tense the next day, unable or not ready to feel relieved just yet.