In good hands

Precious words to hear

gregm — Fri, 04 May 2012 08:27:07 GMT

I've been deliberating whether to do this blog post, given the journeys others are making in this community and that continue to be a struggle, posting good news can seem insensitive. I've chosen to do it as it provides some hope for those starting the journey I have made.

On Monday I went for the results of my biopsy, the doctor bounced into the consulting room and said "its good news" and then before his chair had finished creaking from him sitting down "All Clear".

Precious words.

After 3 months of treatment, and near on 5 months to now, it's been a phrase I've been wanting to hear. Of course there's the caveats - surveillance, chance of relapse etc. - and I need to be mindful of that, but at this stage there is no better position to be in. I have a huge debt of gratitude to Addenbrookes for their superb treatment and kindness, to the people of this community for welcoming me on day one and being there every day since when I've needed you, and my friends who have ferried me to appointments and looked after me.

(Journey: Stage IIc Testicular Cancer GCT seminoma, spread to lymph nodes and 14cm diameter lymph node tumour -> All Clear in 5 months)

Greg

PS: Late breaking news - I did show the doctor that my right hand and arm were swollen, and so I'm now booked in for an urgent doppler scan on my upper limbs. Looks like the NHS still wants to play with me :-)

Who nicked my horse?

gregm — Tue, 24 Apr 2012 09:47:31 GMT

It's been a while since my last update,

PET-CT

This was done in a lorry parked in Addenbrookes car park, quite odd. A radioactive glucose injection, then sit quietly for an hour for the glucose to be metabolised by active sites. Any active tumour glows on the PET-CT. Two weeks later, I got my results - "complete response" for the tumour (it was 14cmx12x12 and had shrunk to 4cm diameter at a previous CT scan), but the primary site (testicular) glowed brightly showing some activity still there.

In between the PET-CT and getting the results I had my orchidectomy, just as well knowing now what the PET-CT would reveal.

Orchidectomy

This was simple day surgery in at 2pm, out just after 6pm. I opted for a prosthetic as I thought I might as well whilst there, and the incremental risks of infection or complication seemed small. I'm very happy with the result. On the operating slab I was given a choice by the doctor - he held up two prosthetics. I reckon I would have won best of breed at the Norfolk County Fayre if I had chosen the larger one, so I modestly chose the smaller. Operation felt like it was over in seconds, and then off home. No real side effects, some natural soreness, but I went for a walk the day after, and went back to work 2 days later reasoning that it made no difference to sit in a chair at home or at work. I did however walk like someone had nicked my horse for a week.

Its now 4 weeks on, still waiting on the biopsy results from the orchidectomy (due next Monday), but hopefully everything now is pointing to surveillance rather than RPLND which is the nightmare that has been stalking me.

Top tips for making BEP chemo manageable

gregm — Mon, 20 Feb 2012 20:19:24 GMT

I guess we all react to BEP chemo differently, based on our biological make-up, age and general health. For me it was the stuff around the chemo that I could have andled better, as the chemo itself was ok.

If I had to give advice to anyone about to start this regime, then it would be as follows:

1. Digestive health

Trying to fnd polite words, but as chemo is the ingestion of toxic stuff to kill the cancer (and it harms your hair follicles and bone marrow resulting in a brief reduction in immune system strength) its important it has a way out of your body. It comes out in your poo, piddle and pores - so be expected to pee every two hours and make sure all 'exits' are in full working order. You may have just had surgery or similar and morphine based pain killers as well as chemo can bung you up.

Tip: take the laxatives from the outset, not when you start to need them. You can always back off, but if you don't take them, then once blocked you feel awful

2. Never tie a knot in your pyjama cords

See laxatives above

3. The tyranny of the beeping pumps

As an in-patient you'll be tethered to a chemo pump for a minimum of 72hrs and for some regimes 96hrs or more. It beeps when it needs restocking with chemo medicine, it beeps when you unplug it every 2 hours to go for a wee. And so does every other chemo pump on your ward. Sleep is precious, and when its not beeping machines its snorers

Tip: get some ear plugs (such as a handed out in the better class of airline seats) and use them

4. Bright lights

A hospital ward is like a school dormitory - lights out at 11pm, lights back on at 6am - and all manner of strange comings and going during the night.

Tip: get an eye mask (such as handed out in the better class of airline seats) and use it

5. Sight, Sound and Stench

I've tackled two of the senses, so on to another. If you have to walk yourself to the bathroom dragging a bleeping pump, then count yourself lucky. There'll be others on the ward not so fortunate - and they are combined to the bed. That means that all bodily functions occur there, and through no fault of their own that can result in malodourous clouds wafting across the ward. When you're not feeling too chipper already a fog of stench engulfing you can be awful. Have something with you nice to smell - be that aromatherapy oil, aftershave, or vics vapour rub - whatever your favourite - and keep it to hand

6. Hopscotch

There is an intermediate class between the bedridden and those dragging pumps around and using their god-given plumbing. Some people have catheters and urine bags that need emptying.In my experience this is not a clean or easy task based on the results I've seen.

Tip: Never, EVER, go to the communal bathroom in bare feet

7. Preparation is everything

If you're on chemo they want to monitor fluids out as welll as fluids in. You have to autograph the wee bottles to identify them. Autograph them before you fill them - its much easier that trying to write your name than when juggling a pint of urine in a cardboard bottle, whilst tethered to a chemo pump abnd with a cannula in your hand.

Tip: sign the bottles beforehand

8. Do as your mother said, and wash

Chemo comes out of your pores too - and so taking advantage between bags on the pump to nip and have a shower will make you feel better - though don't take too long or your cannula might clot and they'll have to fi another one.

The more fragrant the shower gel the better (see tip 5). Though due to the high number of nurses around you might want to avoid your favourite Lynx Libido...

9. Sweets and Drinks

You can taste the chemo, some describe it as 'metallic' but either way it is an ever present taste. To cut through it you'll probably want a variety of drinks (other than water which they give you) and for those to have a sharop edge to them.Lucozade energy (all flavours), pineapple and grapefruit seemed to be favourites on my ward. Similarly some swwets can help alleviate the taste and can reduce any remaining sense of nausea (though the anit-emetics are excellent)

10.Entertainment

Your best source of entertainment will be your fellow ward members - every one of them will have an interesting story to tell and they provide support and humour during the day. I thank all of mine for the jokes and genuine care and concern - and especially the more senior ones (see previous posts) who showed me just how much life can be enjoyed after 8 decades on this planet. Take time to get to know them all.

After that having some movies to watch, music to listen too, and talking books when its just too much effort to read one or hold your eyes open to watch a movie will while away the time. If you're very lucky your ward might have wifi and you can e-mail or skype friends.

Hope this helps someone to have a more manageable time

Greg

Chemo finished. and the results are in...

gregm — Mon, 20 Feb 2012 19:46:43 GMT

I finished my last dose of chemo a week and a half ago, had my CT scan last Monday and my results today.

The lymph node has shrunk from 2016cm^3 to just 64cm^3, that's an astonishing 97% shrinkage, and the doctor expects it to continue to shtink for 6~8 weeks after the last chemo dose, so fingers crossed it keeps going and gets down to a normal lymph node + scar tissue size, anything under 10cm^3 would be good. It'll never be down to the original size due to the presence of scar tissue. So I'm on surveillance now, with a PET-CT scan booked for 4~6 weeks time to see what the final reduction is.

The ultrasound showed no change in the primary site - evidence that it had burnt itself out there and backed by an absence of blood flow in the shadows. The ultrasound doctor thought it pretty conclusive that it wasn't active, but the oncologist wants to play safe and so is scheduling an orchidectomy for 4 weeks time - that's just surgery as a day patient so I'm not worried about that. I'm hoping they remove the stent in my klidney at the same time as that continues to give me mild discomfort once in a while and is stopping me from getting back into cardiovascular exercise and from doing things like situps. Guess I'll just have to work on my arms and shoulders 'til then.

I'm back at work now fulltime, and after a gentle ramp (and waiting for these results) I resume my full responsibilities next week.

I'll update the blog after the PET-CT/orchidectomy incase anyone else is on the same journey and wants to know the ins and outs of it all, and I also promised to write my top 10 tips for making BEP chemo manageable.

Tri-cycle

gregm — Wed, 25 Jan 2012 17:52:17 GMT

It seems to have gone so quickly, tomorrow I start my tri-cycle, the 3rd cycle of my BEP chemo. This is hopefully the last one, and so a deep breath, endure the beeping machine, the bi-hourly trips to the loo, and the ignominies of an inpatient's life, and I'll be close to the finishing line. I'm all stocked up with tech gadgets, sweets, drinks and tricks to endure the inpatient spell. After that its just 2 day-patient chemo visits and that'll be the last toxic chemical to enter my body.

The scan to check the results will be soon after, and I'm told that the tumour may continue to shrink for 6~8 weeks after that, and so any decision regarding surgery to take the remnants of the tumor out will probably be 2 months away. If an orchidectomy is required, then that'll be as a day patient and will be sooner - I just wish they wouldn't refer to it as keyhole surgery - it hurts my pride ;-)

So, time to plan my return to work, with no adverse side-effect other than being bald. It feels like I should have used the time-off more productively - learned to the play the violin, decorated the house, or at least tidied my sock drawer.

Seconds out, Round Two

gregm — Tue, 10 Jan 2012 18:50:11 GMT

I'm now well into my second cycle of chemo - just finsihed the 3-day inpatient part, and got my first outpatient appointment this Thursday.

If anything the 2nd cycle has been easier than the first - part of that was knowing what to expect, taking what I needed to the hospital, being in a smaller ward, and definittely being in better digestive health at the start. I should also acknowledge the two fine gentlemen in the ward with me who kepy me entertained - Eric 'the Bed' (81) and 'Chamois' Alan (88) - thank you both.

At the end of all the cycles I think I'll write my top ten tips to making the BEP chemo manageable - often its not the chemo itself but all the rigmorale around it that is a drag, and a few simple things have made it all the more tolerable.

I'm getting my daily walk in, and energy levels are recovering (more sleep depravation from the regimen in the hopsital), and will be entering the immune comprised phase soon where I'll shut myself away from the world and watch daytime TV.

This rollercoaster ride, started with precipitous plummet at the first news, several loops around the corkscrew as various diagnoses/prognosises hove into view, but now feels like a stable and level track to the finish. I'm well aware that there might still be a surpise turn that throws it all back into turmoil, but hoping for the best.

A show with everything, including Yul Brynner

gregm — Thu, 29 Dec 2011 16:05:47 GMT

Day 15 of the chemo today, and the last infusion of Cycle 1.

It’s been pretty much plain sailing so far, but the first
overt side effect looks like it’s starting to appear – a gentle tug on my hair
results in a good pinch of follicles coming away – so I’m on the way to joining
Telly Savalis, Yul Brynner and Vin Diesel as a baldy.

So time to shave it back, but I’ve decided to have a Mohican
for a day to celebrate my hair whilst it lasts.

I don’t know if subsequent cycles get harder to manage but my
spirits and energy levels are good, so fingers crossed that the next cycle will
be the same.

Finished until after Christmas

gregm — Thu, 22 Dec 2011 17:25:26 GMT

Today was day 8 of cycle 1, so in for a Bleomycin infusion –
and touch wood still no real adverse side effects from the treatment. I even
swapped the anti-emetics for boiled sweets as they are just as effect now, and
I can stop taking many of the other meds until the next cycle starts.

So, that’s it until after Xmas for the final infusion of
cycle 1 – it seems things are going fast.

Thank you to all my friends who have supported me to this
point – I’m extremely blessed to have you as my friends.

Back home after 1st 3 day regimen

gregm — Mon, 19 Dec 2011 10:55:33 GMT

Happy to be home after the 1^st 3day inpatient regimen

The chemo went pretty well, and I couldn’t really tell much difference between which bag was in the pump - Cisplatin, Etoposide, Bleomycin, or saline. Only problems were those caused by tramadol from having the stent put in – next time I’ll take something to counteract the side-effects of tramadol. The worst part of chemo I think was being hooked up to the infernal beeping pump 24/7. The best part was the kindness of fellow patients.

A couple of times I asked for some stronger anti-emetic, no need to suffer if they have something stronger on hand.

Now back at home, trying to wash the hospital smell out of my skin & hair and breathe it out of my lungs. I can’t detect much change in taste or other faculties, but am veering towards stronger tasting foods –
maybe to counteract the hospital tang – or maybe because it’s suppressed.

All in all relatively good, and after 2 x 4hr long sleeps last night, feeling fairly good.

First Day as an Inpatient

gregm — Thu, 15 Dec 2011 15:30:53 GMT

Into the hospital early this morning for baseline functions - hearing test was good so starting from a strong base, and the lung function is strong after years of cycling and rowing, They found a bed in the ward for me at noon, just in time for lunch :-) After that I'm on 2 bags of hydration (6 hours in total) to be followed by 2 bags of chemo later tonight, and then back onto hydration. Hopefully that means I'll sleep through much of it, having taken the anti-emetic. I didn't get too much sleep last night so should be tired enough to sleep tonight, and I'll report on the first dose of chemo tomorrow. I hope I can start backing off on the painkillers for the stent as the after effects of that procedure seem to be lessening,

Update: I didn't sleep too much I think, perhaps 4 or 5 hours as it's a little noisy even with ear plugs, and there are frequent trips to let the fluids out. I was gently roused at 6am for general observations. At 4am the 2nd bag of Cisplatin finished, still no discernable side effects - the only mild discomfort being from the stent. I'm now on 8hrs of hydration before the next chemo.

For another great blog from someone on a similar journey Martin's story

Kidney Stent Procedure

gregm — Mon, 12 Dec 2011 20:15:27 GMT

They managed to bring my kidney stent procedure forwards a couple of days - which is good as it might take a day or two for it to settle down.

This was my first ever general anaesthetic - "ouch that stings my h...ZZzzzzzz" and awake again 2 hours later. No grogginess, and no discomfort to start with...

I made the mistake that because I felt ok i didn't need any more pain killers - boy did I regret that. They gave me paracetamol whilst out cold and when that wore off my bits were in agony - they dosed me up with paracetamol, tramadol and another liquid morphine based painkiller - all to no avail, and I had 3hrs of nasty nasty nasty pain. Top tip - if they offer you pain killers after a kidney stent - take them regardless!!! in the end I think it was the paracetamol (notionally the weaker of the painkillers) that had an effect. I'm now taking them regularlry as directed for the next day 'til I'm sure the pain won't return.

They want to remove the stent as soon as the tumour starts to shrink - it gets progressively harder to remove the longer it is in, and considering the exit route it needs to take, I want it to be as easy as possible! I'm not getting much discomfort from the stent at all, so I think it's going to be well behaved.

So both kidneys now in play for the chemo to start on Thursday.

Biopsy resutls, surgery and chemo

gregm — Thu, 08 Dec 2011 16:47:36 GMT

Got the results back: para aortic metastatic germ cell tumour, seminoma.

Given the range of possible outcomes I’ll take that as a win - it should respond well to chemo

The tumour is physically impinging on my left kidney, and so to prevent that failing, and to make sure it’s working properly during chemo, I need to have surgery before chemo starts. That’s just simple day surgery (no need for a knife) – and I’ll spare people the graphic details, but it’s simply a stent to allow the kidney to connect to the bladder. This will be my first ever surgery, and my first general anaesthetic. My life is a lot of firsts at the moment. The GA almost worries me more than the chemo.

After that it’s 3 cycles of BEP on a 3-day regimen (9 weeks in total). In as an inpatient on the first cycle so they can keep an eye on me, and on daily self-administered blood thinning injections as they’re worried the size of the tumour will make me susceptible to blood clots. I can cope with any of the temporary side effects (nausea, soreness, fatigue, baldness) but it’s the permanent effects that worry me more – has anyone experienced the hearing loss?

All in all a good day, relatively

Biopsy results due tomorrow

gregm — Wed, 07 Dec 2011 15:07:53 GMT

I've got two appointments tomorrow, one with the original specialist and then straight after that a meeting with the oncologist and nurse. I'm hoping they confirm the existing suspicion that the primary cause is testicualr and this is what has spread through my lymph systm and that I can start the chemo (and I'll assume that is going to BEP, and could start as soon as Friday?). Also steeling myself should the news be different - I'm part dreading the appointment but also want to get it over and on to treatment. Whatever the prognosis, next step is treatment whether that is palliative or steps to a cure. I've also been setting myself a mid-term reward - if everything goes well then I've promised myself a trip to see the Northern Lights in a year's time. So many things I wish I'd done earlier seem more urgent.

At the moment the symptoms are pretty minor, and it almost feels fraudulent to tell people I have cancer, and yet I know it is there.

So, by 2pm tomorrow I should know what regimen I'm on.

The steps to diagnosis

gregm — Tue, 29 Nov 2011 18:36:38 GMT

So, after I made contact with the doctor, what were the steps to diagnosis:
my symptoms were not very specifc back ache, and so my doctor thought it might be referred pain from an inflamed epipdidymus (sounds like a resident of Notty Ash?), but also thought my spleen felt enlarged.
(1) organised blood tests and book an ultrasound (2 day wait). At this stage I hoped for an inflammation, but like anyone with a PC googled enlarged spleen, and the results were worrying.
(2) the ultrasound reported no cause from the epipdidymus, but did report a lump in the abdomen but the specialist didn't say anymore, but got the report to my doctor by noon the next day. I met with a doctor and he reported that the mass was on the kidney and that it was 12x14x12cm, but couldn't confirm what kind of lump it was. I went home and googled kidney cancer.
(3) the urologist called the next day and offered an appointment at short notice, I got a slot at 6pm, she informed me it was a tumour (not a cyst) and on the basis of shape was more likely than not malignant. She organised a CT for me the next day.
(4) CT was like passing through a 'stargate', an interesting rather than uncomfortable procedure. Even the contrast injection was interesting - warmth floods you from head to pelvis, you get a metallic taste in your mouth, and the warmth spreading in your loins makes you think you've wet yourself. The CT team rushed the results to the urologist that afternoon
(5) met the urologist same day as the CT - the cancer is malignant, a secondary, classic lymph spread, but not connected to any specific organ. The suspicion now is that it is testicular in origin, to be confirmed by biopsy. I went home and googled testicular cancer.
(6) 3 days later (after a weekend) I got a CT assisted para aortic lymph node biopsy. Laying in the superman position they swabbed my back, local anaesthetic, and then grabbed 3 samples. The first sample was a little uncomfortable for 5 seconds, but the 2nd and 3rd were fine, and everything was done in 5~10mins. A had a bit of a cough and slightly elevated temperature so I got some intravenous antibiotics, and 6hrs of bed rest in the ward before being let home. No ill effects from the procedure.

Next step now is the biopsy results, and that could be 7~14 days, I hope quicker as I want to get onto treatment. So in my time I thought I had inflamed epipdiymus, spleen cancer or stomach cancer, kidney cancer, and testicular cancer. I'm hoping for the latter interms of treatment.

How did I get here?

gregm — Mon, 28 Nov 2011 20:36:57 GMT

Two months ago I was healthy, moderately fit man - cycling to work, running for charity, indoor rowing, and had lost 10kg through a fitness/healthy eating regime. Then I started to have trouble sleeping - after 2~3 hrs I would wake with back ache, sitting up for a few minutes would dissipate the discomfort and I could then go back to sleep. During the day I felt totally normal. The slowly it got worse and especially after eating a big meal and so I went to a chiropractor thinking it to be muscle/skeletal related but when the symptoms started to be felt during the day I decided to register with a doctor and get advice. Thinking back, the symptoms of back ache/pain have been with me for perhaps the last 3 years, and it may all be related. Could I have spotted it earlier? maybe, but it was hard to distinguish from general aches and pains.