Nigels Story… one of our own…..

Nigel

This is the story of our friend and supporter of the charity since day one Mr Nigel Smith. He is a great man, husband, father and Grandfather.

Please read this I think it will open your eyes to the REAL importance of being aware of your body and to get yourself checked.

In 2009 I noticed a small red blotch on the glans of my penis and thought it was just a spot,but it started to turn into a lump and I started to get concerned so after much thought I saw my Dr who on examination didn’t know what it was and referred me to a GU clinic.

Upon entering the clinic I realised it was a std clinic and was very angry my Dr sent me to such a place but I stayed and saw a female Dr. she said it was a genital wart and I could of contracted this decades ago and it can suddenly appear. I was given a solution called Warticon and applied it 3 times daily to no effect. I revisited the clinic and was assured it was a wart and it would go in time but the lump started growing and became ulcerated, all the time I kept away from my wife and started sleeping in the guest room so I could hide it from her citing that my snoring was keeping her awake. I refused to go back to the clinic because I felt ashamed and in this time a 2nd tumour appeared at the base of my glans which grew rapidly.

After hiding this condition for over 12 months I had to show my wife and she was horrified and phoned the clinic and the next day she came with me to the clinic. We saw a different Dr and after examination he said I was mis-diagnosed and referred me to see a urologist who took one look and was very concerned, I had a biopsy under anaesthetic on 23/12/2011 and awaited the results.

I had my appointment to see the urologist in January 2012 and was told I had malignant melanoma of the penis it was at stage 3 and was very very rare and required surgery. On February 15th I was admitted to hospital for a glansectomy and new neo glans by plastic surgery and stayed in hospital for 4 days. A week later I had a serious infection and was re admitted for iv antibiotics and further tests, again i spent 4 days in hospital and returned home to re-cooperate.

I was then referred to the dermatology dept at the Qe Birmingham, I was then told because of the seriousness of the cancer they needed further surgery to reduce the chance of it returning. In June I was re admitted to good hope hospital for a partial penectomy and another neo glans, after 4 days I was discharged.

I am now visiting the Qe every 3 months for a ct scan and up till now they have proved to show no change and at the last visit I was told the ct scans every 3 months can now stop which I feel was a glimmer of hope.

At this moment in time I am clear of cancer and can only be given temporary remission and a 50/50m chance of it returning. If the cancer came back on the penis it would mean I have to have a full penectomy and if it became a secondary cancer I would need chemo or radiology to try and stop it. I’m far from being cured and doubt I ever will be but remain strong and fighting this terrible cancer.

The whole journey as had a bad effect on my mind and I still struggle to cope with everyday situations but I feel in time this will go. I’ve had great support off my family which as pulled me through this and now I try to help other men not make the mistake of hiding this as I did.

 

Nigel was unfortunately diagnosed with the rarest type of penile cancer, melanoma. This is often harder to treat than the most common type  of penile cancer (squamous cell carcinoma) and has a greater chance of returning following treatment. He has asked me to update his story and although it is not good news, he continues to fight.

In July this year I had what I thought were flu like symptoms; high fever etc. so stayed in bed for a few days and after a few weeks felt normal but then 4 weeks later the symptoms returned  much worse.  My temperature was 41.5. An ambulance was called and I was taken to the local hospital A+E.. After seeing a few doctors I had an x ray on my abdomen where I had been having severe pain for a month and abnormalities were found. Because of my cancer I was admitted for 8 days.

During my stay they did every test they could on all my body fluids and could find no infection ,virus  or bug so they ordered a full body MRI scan which revealed a brain tumour,3 lung tumours ,liver tumour and a tumour on my adrenal gland. Upon finding these abnormalities they contacted the QE in Birmingham and I was discharged to wait for the hospitals to meet and discuss my case a long 3 week wait had begun.

A phone call to go to see my skin oncologist straight away revealed my worst fears as I walked into the consultant office to be greeted by a doctor and a MacMillan nurse. I knew my fate. I did not need telling but heard it all the same ‘I’m sorry Nigel but you are now stage 4 ‘. `Terminal I replied? `a slight nod of the head was given as doctors do not say terminal.

I was then fast tracked to medical oncologists and clinical oncologists, the waiting time was minimal. With regard to my prognosis I was told that I had months to live not years and cutting a long story short I would be given chemotherapy to try and shrink and slow down all the tumours to buy me more time.

My second visit was to see the clinical oncologist who said cyber knife radiotherapy would be required on my brain tumour to reduce it and this took place on the 19/9/2014

My next treatment is on Thursday starting the chemo journey which will be 4 x 3 weekly treatments to which the side effects are not very nice and I’m prepared to put up with this as I really need to stand up and fight for extended life.

I hope this story helps anyone who as or hopefully not will have to go through this trauma it’s a rollercoaster of gigantic proportions but things in life are sent to try us.

LATEST UPDATE

in august this year 2014 I had 2 bouts of what appeared like full blown flu with a temperature of 42 degrees an ambulance was called and I was admitted to hospital seriously ill. scans were ordered and it showed the primary cancer had spread to my brain ,lungs liver, abdomen and adrelan gland all in all a grave situation and more scans showed that the chemo drug I was on has had no effect on the tumours in fact they are larger and more have appeared so with just one more infusion out of four im hoping it works?

severe head pain in November saw me admitted to the QE hospital after an emergency direct call and after scans it showed that the tumour in my brain had bled into my brain and caused swelling which was very serious, after 2 weeks in hospital and getting over it at home im feeling better. I was offered another drug after I finished these other four infusions as they thought it would of worked on me better but alas I [got to know from an alcohol rehab that I] cannot have this drug with an active brain tumour and if the chemo ive had doesn’t work then I will be told they cannot do no more for me and will be placed in palliative at home.

the situation is grave but I will continue to fight in the hope that I see a reducement in the size and spread of tumours but I cannot see this happening so I have accepted that im approaching the time when all as been done and let nature take its course

Sadly Nigel passed away on the 23.12.14 with his family around him. He will be missed by us all.

12.1.15 – A very sad day as we said goodbye to our friend Nigel, his legacy will live on.

Nigel’s wife Lorraine and her family have asked for donations to be made in his name and for the money raised to be put towards our holiday home for cancer fighters and their families, which we will. Donations of £3 can be made by texting Nigel to 70300

Nigel’s family have today 28-01-15 given us cheques that with the online donations total up to £300 from donations from his funeral, Nigel and his family want us to use this money to help with our making memories Holidays for cancer fighters and their families which we will.

Nigels family have also asked us if we could ask you to continue to donate via the above text number to donate towards the Holiday home in his name.

Thank you

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