You don't know what you've got 'til it's gone

 

Be honest, do you ever think about your lymph nodes? Do you have any idea where they are? Or what they do?

I’m not sure I had ever given them much thought until that is, when I didn’t have them all.

Now, I surely miss them!!

So, as the sentinel node was cancerous I would have surgery to remove all of the remaining lymph nodes in my left groin. They would all be tested and if negative I could assume that the cancer had not spread beyond the sentinel node. If it had, then we would need to look at the pelvic lymph nodes, where this cancer predictably goes to next. I appreciated the consultant's straightforward talking. I don’t want to beat about the bush. Just call a spade a bloody spade – that is how I deal with life!

He proceeded to describe the surgery and the side effects of which 90% of patients experience some, high risk of infection, difficulty with wound healing and lymphedema (swelling of the leg and genitals). Ever the optimist, I was sure I would be in the 10% who get away with it! Wrong!!!

The current wait time for the procedure is 3 months.

“Great”, I say. We have the holiday of a lifetime to South Africa, we go in 6 weeks and will be back in plenty of time, phew!

“No, not great” he responds, for the first time not smiling. The current wait time might be 3 months, the ideal wait time is 3 hours. Every day counts to minimise the risk of further spread. If there is a cancellation or a slot becomes available for whatever reason I’m going in!

The MacMillan nurse has leave coming up, she can go on holiday with Mrs B. I wouldn’t mind, honest, but the idea doesn’t go beyond friendly banter.

In the meantime, I’ll have a CT scan to look for any more distant spread, the appointment for that would be the following week. I am reassured it is a precautionary measure.

I didn’t do my research for that appointment. So, it seems that you can keep your clothes on as long as there is no metal. All the other patients that day have got joggers on, not me! Jeans with a zip and other metal bits, even a bloody top with a zip neck, so just me sat in the waiting room in one of those hideous hospital gowns. At least I kept my pants on so wasn’t having to manage not flashing my arse as they moved me around, carrying my litres of fluid I had to take as well as my work – I had learnt to be prepared for hospital waits – the internet there was free and fast.

No one said anything but their faces revealed their thoughts – who is this guy in his pants and socks with a laptop? Does he not know how this works? No - I didn't.

If nothing else, the cancer journey provides daily opportunities to learn not to give a s**t what anyone thinks.

Next day I got the call! There was a slot! Just over a week!

You might be one up at half time cancer but we’re not done yet!

So, surgery number 3 chasing the cancer down. I had signed up for the chance to be part of a research study and to have the operation robotically, as opposed to the traditional method involving a significant incision in the groin area. This was not about improved outcomes as far as the cancer itself was concerned, but to investigate if there were any benefits in terms of the side effects and improved recovery..

Anything to avoid a swollen scrotum!

Selection was randomised but I’m in. In the short term that means more forms and measurement of everything as a baseline for comparisons.

I was scheduled first, 7am, that suited me, get the bloody thing over with but a last-minute change to the afternoon, check in is now at 10am, 3 hours ahead, just like for a long-haul flight. No strolling around duty free though and definitely no chance of the obligatory pre-flight pint.

I hate being late, I was more than an hour early. What could I do now I was nil by mouth - sit in the hospital café watching Lorraine, or sit in the hospital café watching Lorraine. I’ll sit in the hospital café watching Lorraine.

OK, I could have gone for a walk in the pissing rain and risk sugar levels dropping too low with no option to eat anything bring them back up.

3 hours feels like 30 whilst waiting to be cut up (slight exaggeration!) but it started passing more quickly once I reached check-in and I had to start to answer the same questions thirty-seven times. I was tempted to give my next of kin as Lorraine Kelly but no, this is a serious matter.

I do my best to be healthy and look after myself. I’d been working extra hard on my sugar control (I am diabetic) – so much so that my levels dropped and I ended up needing a drip before the surgery to get them back up. And I keep the weight off – good for me - yes? I was due to have the experimental key hole robotic surgery but just before going down the surgeon tells me that my leg might be a bit “thin” ( I have been doing bloody leg presses for 6 months!!) and it may be necessary to open me up in the traditional way after all to “finish off”.

In the interests of my own health, it seems I should have had a whole “serves 12” chocolate fudge cake for breakfast!

And we’re off, the walk to theatre. I need to take the drip with me, attached to one of those coat stands on wheels, which I think were transplanted from a supermarket trolley and had no intention of coming with me without protest. It’s enough to concentrate on not flashing your arse out the back of the hospital gown without trying to drive the bloody drip stand.

Made it, and I am put at ease by a cheery Italian nurse asking me the same questions for the thirty eighth time. No, my date of birth is still the same, as is my name and I haven’t managed to change my GP or marital status in the last fifteen minutes. Her anaesthetist colleague, struggling to get the canular in my hand said she sounded like she was explaining the menu to me in a swanky Italian eatery and then asked me to think of something nice to help me “drift” off. I chose the image of the Italian pasta meal from the menu and said I was expecting it in recovery. I actually got the second half of a tin of beans and synthetic sausage!

Nothing much to report for the next 12 hours or so through the evening and night. I watched Silent Witness on my lap top, cutting bodies up, a great choice, and devoured my emergency tub of Pringles.

Credit where credit is due, morning routine on the post op cancer ward was one slick process. Everyone was fed, clean, dressed, checked, medicated and visited by a doctor all before 9am. Not unlike the mediterranean hotel break, check out is asap to make way for the next group of happy campers. Once they were satisfied that I could have a proper wee by myself, I was shipped off to a holding lounge. Homes Under the Hammer this time, I’ve not seen this episode before.

Well, it seems I did have a big enough leg after all and escaped a large incision in my groin. I’ve just got 2 wounds at the top of my leg plus a drain coming out of a third hole, depositing a not insignificant volume of red liquid. It goes through a tube to a concertina plastic vessel about waist height and then on to a plastic “bag” down on the floor. Heading to the shower it was like taking a small dog for a walk.

Before discharge this was all changed for a different collection bag which was stuck to my leg via a suction pad and then folded in three under my pants. Ultimately better, but I had only ever heard of the first type, the new one didn’t fit under my jeans, I would have to walk out with my flies undone and button unfastened. Every cloud and all that, another opportunity to practice not giving a shit about what anyone thinks.

I passed my training course in emptying the drain bag and was allowed to leave. I have nothing but praise for the care and professionalism of all at The Christie cancer hospital but it is still wonderful to be home. A “welcome home” present too from my wife – a twin pack of over-sized supermarket jogging pants to fit over the drain bag!Style icon!

I hated them! They are everything I am not. I felt permanently scruffy and longed for my signature chinos, blue shirt and fancy Fat Face socks. At least the bloody joggers took the full force of my anxiety and worry, I wasn’t really thinking about the wound healing or even worse, were any more of the lymph node cancerous, had it travelled further? It would be a few weeks yet before I found out.

The days passed, it was awkward, uncomfortable and periodically painful to different degrees where the nodes and surrounding tissue used to be. A difficult area to heal, it is impossible to sit, stand, or move without pulling at the wounds. There are some odd shaped lumps and bumps and I most definitely have the swollen leg and genitals. I’m very tired, although I think that is just post-surgery normal. So, I’m on this trial to see if the recovery is any better with the keyhole surgery than the traditional method, I’m not sure what I am comparing with though. I should have asked but I doubt I would be any clearer, I know, everyone responds differently!

Either way I’m doing my best to behave myself, resting, moving, leg raised, eating right, reading and so on. Times like this highlight the best of humanity too. So many people got in touch and connected with me, and wonderful gifts kept arriving. The “F**k Cancer” morse code bracelet has to be a favourite.

All of this went some way to making up for the daily battle with the bottle green thigh length compression stockings, measuring and reporting the drain contents and the daily (BIG needle!)  injection into my stomach., apparently to stop clots forming. I don’t know why, but Mrs B wasn’t keen on me doing this at the dining table after dinner! Doesn’t everyone do that?

As a reward for good behaviour, I had the drain removed after about 2 weeks. If you have a drain and are worried about how it feels being taken out, don’t! I felt absolutely nothing. Actually, it was nothing to do with being good, it was all about the volume of the liquid collected each morning, I had reached the magic threshold! It wasn’t much fun measuring the output each day, balancing over a jug as I released the “tap”, trying to get the aim right and avoiding it splashing everywhere. And the plastic jug, even with a NASA telescope most people would struggle to see the measurements clearly! Much to Mrs B’s disapproval I switched to the kitchen gravy jug with clearer numbers!

That day couldn’t have come soon enough, walking would be easier, I could maintain my fitness more easily, and wear what I wanted. How naïve I was!

Without the drain, the swelling increased, and increased quickly. My leg was most definitely not too thin now! With fluid retention my weight jumped 6kg in a fortnight! Ok, some of that is the chocolate gifts and lack of normal exercise, but not all. Best put those joggers through the wash again.

And genital swelling too! Take it from me, bigger is not always best! With bollocks the size of tennis balls just imagine the rubbing during my daily shuffle (attempt at a work out!). I hope no one captured on their phone my contorted attempts to separate my balls from my inner thigh without putting my hand down my pants.

I guess I was naïve to think I would be different and back to normal sooner than the advised 4 – 6 weeks. Third week post op though now and I’m doing alright, no painkillers for a week or so, walking 30 minutes or so at a time, joggers back in the wardrobe (in case of a repeat) but not back to normal. The drain wound has a super absorbent three-layered dressing which will need checking out, one other wound needs looking at again next week, it wasn’t considered “wrong”, but not “right” either. Fingers crossed too, for more reduction in the swelling, hopefully 4 – 6 weeks but always the risk of longer.

I’ve long had enough of Homes Under The Hammer and was getting on with some work at home. I made arrangements for going back into the office the following Monday, the office banter would be good for me, it would speed up the recovery, I’d be fine. 

Instead, that Monday morning I woke up in a ward again at The Christie Cancer Hospital. FFS