Ben, 42, lives in North Devon with his wife and young son. He has multiple sclerosis and ulcerative colitis, both long term autoimmune conditions. In 2013 he was diagnosed with testicular cancer, underwent chemotherapy and is now all clear.
In this Q&A Ben recounts his experiences with treatment and side effects, and shares some the things he learned…
When were you diagnosed with MS?
I was diagnosed with Relapsing-Remitting Multiple Sclerosis in 2003.
It first began in February 2003 when I was diagnosed with Bell’s Palsy. I was prescribed a round of steroids which did the trick. However, the GP was concerned that a part of my head still felt numb. A few months went by and I was given an MRI scan in October 2003. By this time I noticed I was getting more and more fatigued, working less and less hours.
By the following month I was suffering from a full-on MS attack and only then was I properly diagnosed. The MS is under control at the moment. I suffer mostly with fatigue although recently have noticed my hands trembling more.
I was diagnosed with ulcerative colitis in 2008 after I was having embarrassing bouts of diarrhoea. It’s been under control since I stopped taking Ibuprofen for headaches.
How did the diagnoses themselves affect you?
The diagnosis for MS was confusing as I wrongly thought that it was a condition only the elderly got (I was 27 when diagnosed). But on the other hand I was relieved as I was feeling horrible and now at last things could be done to treat me.
Ulcerative colitis, like MS, is an autoimmune illness, and when I was diagnosed with that I was thinking, ‘Why does my own body hate me so much?!’
In each case, family and friends were there to talk to.
What treatment did you have – and what were the side effects?
Initially I received steroids when having the MS attack, but about five months after my diagnosis I was asked to chose a long term treatment. At that time there were three different medicines I could choose from (now there are many, many more.) All would need to be self injected. I chose Rebif which I would inject three times a week. I began on 44 micrograms but after blood tests, it was shown to be bad for my liver so I was prescribed 22 micrograms instead. I am still on this medicine now, 14 years later.
The other side effect was injection site reactions which although sometimes painful wasn’t too much of a concern. There would be red patches on my legs and belly where I injected.
When suffering from a colitis attack I would be prescribed steroids. For long term treatment, I was given a range of medications which all proved to be ineffective. Stopping Ibuprofen was the most effective.
Tell us about your cancer diagnosis.
I was diagnosed in 2013. I felt that my left testicle was unusually hard and ‘heavy’. I saw a GP next day and an Oncology appointment was arranged for following week. The oncologist immediately knew that it was dead and needed to be removed.
I was relieved that I had found the cancerous testicle and that I had no hesitation in visiting the GP (who was female) who would then begin the process for me to be diagnosed and receive treatment.
What treatment did you have for the cancer?
I had an operation to remove the testicle, which was no problem. I also needed chemotherapy. My oncologist decided that due to my medical history it would be best for me to receive chemotherapy in Exeter, 50 miles away, rather than my local hospital, so she could keep a closer eye on my progress.
It worked. I recently had the five year all clear and have no further need to see the Oncologist.
Did you suffer side effects?
I knew that chemotherapy led to hair loss but didn’t know how rotten I would feel. Very soon after I began treatment I would vomit quite often and found it difficult to keep food down.
However, when receiving chemotherapy for the cancer, a new attack of colitis began. This was one of the most painful times of my medical history. Rather than take steroids, because of the position of these ulcers, I had to administer suppositories for three months before they worked.
The worst side effects were the two times I was taken to the local A&E with neutropenic sepsis, a potentially fatal complication of chemotherapy. Both times I had returned from day treatments in Exeter and had gone to bed because of tiredness. A couple hours later I was shivering in bed despite two duvets covering me and the heating on full. My wife repeatedly took my temperature and I repeatedly asked to be left alone. Thankfully, she called the Oncology unit in Exeter who told her to get me to A&E as soon as possible. I grudgingly went along. One of the times I vomited at the entrance. Once there, they took my temperature and immediately stripped me and placed two fans facing me ‘to cool me down’. I thought they were insane as I was shivering even more. But of course, I had a fever and they had to get my temperature down.
Each time, I spent a week in my local hospital receiving antibiotics and a disgusting drink to replace my lost Vitamin K.
Were there any organisations or groups that helped you?
Both the MS Society and MS Trust helped me with literature when first trying to understand the illness. They also provided documents informing me of all possible medications.
North Devon is very lucky to have its own MS Nurse who was invaluable during the early days.
FORCE support cancer patients and offer complementary therapies. They gave me a foot massage in my hospital bed which was a welcome distraction to the chemo.
Force put me in touch with Citizens Advice who were absolutely marvelous. Sharon from their Exeter office visited me and together we completed a benefits application form which was successful. She also informed me that we could claim from the hospital for a refund of the cost of petrol for travelling to and from the hospital and that we could get free parking at the hospital.
She also put me in touch with Macmillan who would pay the heating costs of our home.
The local Red Cross office lent me a wheelchair for when I wished to leave the house.
The Depression and Anxiety Service in Barnstaple really helped me too. It is becoming more apparent that even if your chemotherapy is successful and you are cancer free, many are left with mental health issues which may take their time to come to the service.
Any other practical things that made life better or easier to bear?
Because of the colitis I would often be ‘caught short’ and was recommended a special key (the ‘Radar Key’) which gives me access to public toilets for the disabled.
What do you wish you’d known earlier that you know now?
I wish that I had known that chemotherapy can cause Gynecomastia – enlarged male breasts. I think it was about two or three weeks following my all clear that I noticed swelling in my breasts. I immediately panicked and thought the cancer had returned. I rang my Oncologist and was told she’d call back. It seemed an age before she rang (it probably was only about an hour) and she assured me that it was only a reaction to the chemo.I was relieved but wish she’d told me that before.
Having said that, if she had told me I might not have taken it in. Many of the things that consultants would tell me I was perhaps too numb to understand at the time. Then it was down to my wife or a family member to inform me at a more relaxed time.
Even though my wife accompanied me on most medical meetings, there were times when neither of us had understood or really heard the consultant. For example, my Oncologist in Exeter accompanied me out of the hospital once chemo had finished and mentioned her delight that all of the cancer had disappeared, even in my chest where it had spread to. My thoughts were: “The cancer had spread?!!” . Perhaps she had told us and I had blocked it out or wasn’t in a condition to take it in. Perhaps it was better that I was ignorant of this.
On the other hand, maybe it would have been better for me or my wife to have pen and paper ready when seeing a consultant.
What advice would you give to someone in a similar situation?
When checking my testicles, I immediately sought medical attention. That is what I would urge other men to do if in the same situation.
Would you like help others by sharing your story and your tips for living better with a condition or coping with side effects? Passing on the things you’ve learned could make a big difference to someone else in a similar situation.
If so, please get in touch via theteam@livebetterwith.com and we’ll drop you a line (and it’s fine to be anonymous if you’d prefer).
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