My name is Jack, as of writing this, December 2024, I am 27 years old.
I was diagnosed with stage 3 testicular cancer in 2019 when I was 22 years old
Due to my anxiety I stopped myself from seeing the doctor sooner.
When I finally had the courage it was a whirlwind- within the space on 5 days in May 2019 I was diagnosed and had the tumour removed that same Friday
I went on to be told I needed chemotherapy
3 cycles
July - September.
You expect it to be this life changing scary task when in fact a lot of it is just fear of the unknown.
I lost my hair and had bad acid reflux - they were the main side effects. However, due to my age I was on the 16-24 ward. I would visit the hospital three days a week and yes they were very long days
I would have to bring a back pack home each night with me that contained the flush bag which was attached to my pic line.
Being on the ward really gave me perspective.
There were kids aged 16 with who were permanent inpatients, there were young mothers looking after their babies whilst battling an untreatable disease.
I was there for would could be described as a part time three month session.
I was entitled to feel sorry for myself and wallow in self pity but I didn’t want to
If anything I found myself lucky.
And I also managed to graduate from university two weeks into treatment
Yes I would have my down days - we all have those. But I reached the end and was incredibly proud and grateful for this new lease on life I now had.
Since September 2019, I have been having a CT scan and a ray, bloods etc every. Six months- to keep tabs on my health.
It is 5 years remission for anyone so it was a standard protocol.
It was a rather quick discovery post chemo that there was a small growth that appeared behind my stomach. Something they were not sure appeared from.
Without a biopsy, all that could be explained was it was either a benign growth- scar tissue
Or a dormant cancer tumour that could become active at any point.
In my mind keyhole surgery was the way- quick and efficient just like when they removed my testicular tumour.
Unfortunately due to being a post chemo patient they suggested RPLND.
Despite efforts to enquire about keyhole, the germ cell consultants agreed RPLND was the safest option. They needed to remove the lymph nodes around the growth too- to prevent any reoccurrence of cancer.
It took me a long time to eventually come to terms with the surgery and all the weight that came with it.
The side effects were retrograde ejaculation, infections, blood transfusions, a huge scar and a very small chance of death and paralysis.
Despite the very slim chances of the latter - it is always something that will haunt you in the back of your mind and is the reason I was so resistant.
You need to remember that side effects like this are common with any surgery - not necessarily specific to RPLND.
Once I agreed - it was about time
When would be the right time
There is never a right time.
Thankfully I got my date - November 27th
A Wednesday.
I figured, at least it will all be over and I will be well enough to celebrate Christmas and enter 2025 with no fear in the my mind ever again about this potential cancer inside me.
Now let’s get to the main event.
The surgery.
There was no eating and drinking after midnight.
But i was required to drink 250ml of water at 6:30 AM.
I needed to be at the hospital for 7:30.
St James’s in Leeds to be precise.
I arrived at the admissions lounge and waited by a bed. I had my observations and was given a gown and stockings.
My partner had to leave within 5 minutes which I think was for the best as I would have just cried the whole time.
Thankfully he works at the hospital so I know he was always near.
While I waited in my own- the nurse looked after to me. My Doctor paid me a visit to go over the surgery with me and what to expect and the anaesthetist came to.
To be safe I did mention that I had bleomycin during chemo- as it flags it and when you may need oxygen.
After around 1 hour and 20, the anaesthetist came back and walked with me to the theatre which was just round the corner from the admissions lounge.
I laid on the bed in the theatre as they prepared the line into my hand for the anaesthetic. I could see surgeries through a glass window awaiting their turn to enter the theatre.
The staff were extremely comforting, asking me about my partner, work - you know this is a distraction tactic before you inevitably fall asleep. I was told they were feeding in the anaesthetic - the moment you realise there is no escape and that was it.
Like a flash.
I was in theatre for around 8 and a half hours.
For no particular reason other than they wanted to take their time.
My partner did not hear anything until 17:15 so it was a long day for my family and friends.
Thankfully he knew one of my Doctors who is involved in he surgery which gave us a lot of clarity.
Waking up was as a blur- I was still very much under but knew I was okay.
I slept through the night as I was very fatigued.
Upon waking up the next day I has numerous lines attached :
Two to my hand
One to my neck
Two lines feeding into the wound around the stomach for pain relief.
A catheter
A drain from below my stomach into a bag.
Over the course of the 5 days I was in hospital – the lines were removed one by one.
Only the drain remained for a couple of says after discharge – as there was still some fluid coming out.
Throughout the Thursday – Saturday I felt okay – just sore and lacked any form of appetite.
I was given an array of pain meds and they checked on my food consumption.
My Doctors came to visit and said the surgery was a success – no complications – amazing to hear.
Within these first 3 days post – surgery, I was sick throughout the night – it was sick buckets filled with brown liquid – likely bile.
As my internal organs had been moved they were unsettled – it was hard to eat much of anything.
Each day from the get go, I stood up and went for steady walks around the ward, due to the staples and the wound itself – it was very hard to regain my posture and stand up straight – which as the Doctors said, was to be expected. The main downfall was it put a lot of pressure on my lower back.
As the days went by my appetite got better as did the soreness. My biggest issue was to sleep on my back semi upright but when your body has been through so much you become tired and sleep easy regardless.
By the Sunday, day 4, I was no longer sick, had my catheter removed and even went for a walk outside which is a feeling I couldn’t describe – it felt freeing. Due to my positive energy and progression, I was really hopeful that I would be discharged the following day.
I was given laxatives to help with bowel movement as I had not actually been to the toilet since the Wednesday. Thankfully it worked and my bowels appeared back to normal – or as normal as they could be at this moment in time.
Monday, day 5 – I was visited again by the ward nurse and doctors – they said I could be discharged.
After just 5 days – I was very grateful, I maintained a positive mindset which I think helped – the worst was finally over!
I left with only the drain back – they attached a temporary stoma bag – just a bag with a hole surrounded with a tape that just attached to your stomach – the hole itself was tiny so do not worry if you are given one (we removed it the next day (Tuesday) as no more fluid was releasing and the hole wound itself healed after about 3 days!
Being home made a huge difference – everyone recovers better at home.
They provided me with pain relief and blood thinners – the thinners you need to inject your self for 28 days post-surgery.
I got settled well back at home – by Thursday, 8 days after surgery, I managed to slowly walk to the nearby Tesco – my back was in pain and the wound was still sore with the staples in – but I managed.
Movement gets noticeably better with each day and you can tell the difference in yourself.
The staples were to be removed 10 days after surgery, however my GP was not open on a weekend so I had to wait until the following Wednesday.
By the Saturday however the staples were starting to get quite red and irritable – not infected – but we new it was time for them to be removed. The relief when they are, it makes a huge difference.
Not only for the wound itself, but for posture, it felt less tight and I could finally start standing tall again. It is still a little sore now, 3 weeks post, but only below the waist where your boxer strap is – air your wound whenever you can, it makes a huge difference.
Some of the wound after the staples were removed, was still a little open and scabbing, so I would recommend any part of the wound that looks raw, keep plastered and when at home keep aired so it can dry and heal quicker.
It has been three weeks since surgery and I feel great, the wound is healing fantastically, just a couple of scabs were the wound was a bit wider and took longer to heal. My posture is pretty much back to normal. Sometimes it still strains and my back aches every now and then as expected.
I can do a solid 15 minute walk – just take your time – don’t rush things.
In regards to sexual activity – I have discovered I am now experiencing retrograde ejaculation, but it is a small price to pay when looking at the bigger picture – a new lease on life, anxiety free with a long life to live. These side effects can be temporary, so the ejaculation can come back over time.
This is the only long lasting side effect I have experienced, which is very lucky..
Upon reflection, having this surgery was the best decision I have made, even purely just for my mental health, I used to struggle to sleep with the anxiety and fear over shadowing me. Now I do not have any fear or anxiety – it is amazing.
I am due to get my results on January 8th – but once again, feeling very positive.
This surgery is just like any other surgery – it may sound overwhelming, but a lot of the factors and side effects of this surgery are the same that apply to any other.
Please don’t let the fear and the unknown of this surgery stop you from making the right decision.
Having this surgery will change you – for the better.
