My Diagnosis

Saturday, July 23, 2011

This post is the first in a series of pieces describing a time related to my cancer diagnosis and treatment through both my own perspective, and that of my wife, Cathy.


Before a family holiday in Florida July 2006 I experienced severe pain in my throat and neck. Great, I thought, just what I need before a holiday I'm looking forward to. I went to the GP, got some painkillers and over a period of days the pain gradually subsided. It was a strange sensation which didn’t feel like an infection, and I didn’t take much notice of it. Wasn’t going to kill me, right? Typical man flu again. So I ignored it, went on holiday and thoroughly enjoyed myself. September 2006 came, and so did pain in the same region again. I went back to the GP and was prescribed more antibiotics. Pain was mild but noticeable, and this time I had a small, hardly visible lump in my neck. I was told it was probably just a swollen lymph node and given time it would subside. January 2007, back to the GP, and again the same conclusion. “Swollen lymph node due to an infection, come back and see us if it doesn’t go away.” February 2007, another visit to the GP and the word hypochondriac is rearing it’s ugly head. A new GP was there and noticed this lump on my neck. She asked for a second opinion, and within two weeks I was in The Royal Glamorgan for an ultrasound. Was I worried? Absolutely not. I had never spent a night in hospital before, had been very fit and active, and hadn't suffered so much as a broken bone. A quick internet search resulted in self-diagnosis of a cyst and nothing else. Maybe it would go away on it’s own, or at worst and extremely inconveniently, a small outpatient operation would remove this lump.

In March I went in for my Ultrasound which definitely revealed a lump of some kind. “Is it a cyst then?” I asked. “Oh no” was the reply, “Its definitely not.” I didn't think any more at the time. It didn’t even twig when asked if I had breathing problems. “Not really” was my reply, “just knackered after teaching children all day.” I was sent for a chest X-ray and was the first in line to go in. I then had a local anaesthetic injected into my neck, followed by a thin needle into my lump for (I presumed) some tests of some kind. Throughout this procedure the word cancer didn’t cross my mind once. Cancer only happens to other people and certainly not me. I was more concerned about having to have this ‘lump’ removed and taking time off work. I went home in a bit of pain and thought nothing more of it.

Looking back the whole scenario was almost laughable. I think everyone suspected that it may have been cancer except me! My chest X-ray, unbeknown to me, was to detect cancer or not. No wonder I was ushered in quickly. Over the next two weeks whilst waiting for the results my lymph glands at the back of my neck were beginning to swell and I was getting a tad worried. Whatever was there was spreading at an alarming rate.

March 30th. A date that will be imprinted in my memory for ever. I received a phone call around 4.30pm from the GP. My results were back. It was a tumor. I remember asking, “Is it benign?” “I’m afraid not. It’s a carcinoma.” I stared out of the window and my whole world melted away. I was in complete shock. My wife and I were due to fly to Boston for tenth wedding anniversary celebrations in ten days but all feelings and thoughts of excitement just drifted out of my head. The only thing I kept saying to myself was, “F**k me, I’ve got cancer.” Friends from Southampton were at that moment traveling up to stay with us for the weekend. Cathy suggested postponing. I disagreed, thinking it better to get through the weekend as best as possible and wait until my consultant appointment on late Monday afternoon.

The next three days were the most surreal of my life. Thoughts constantly drifted in and out of my head. What type, where, was it treatable? I found dealing with the unknown far worse than dealing with something tangible; something I could look up and at least have some information on. We had booked to see Footloose at the Millennium Centre on the Saturday afternoon but the whole event was just a daze for me. My life had undertaken a drastic change and I didn’t know how to deal with it.

Many said I shouldn’t have been told the news by phone. In hindsight I think it was the best way. I ended up having three days to prepare some questions for the Monday appointment without having to succumb to the shocking news in a clinic full of medical students where I would surely be lost for words.


Before a family holiday to Florida in July 2006 Hywel complained of a stabbing pain in his neck and throat along with a sore throat. He'd had a tough few months in school as his first year as a teacher, and they'd just been inspected, so we were all really looking forward to a holiday. I persuaded Hywel he should make a Doctor's appointment in case he had an infection and he could have some antibiotics to clear it up before we went away. He saw the GP and was told he had a throat infection. He was given some antibiotics and told to take some painkillers. He was fine on holiday - a bit knackered from the frenetic pace of a Florida trip, but we all were, so thought nothing of it.

In September just after returning to work Hywel started to get the pain in his throat again accompanied by a very small hard lump in his neck. He went back to the Doctors and was given more antibiotics  and painkillers, and told the lump was a swollen gland and should subside.  By October the lump was still present but there was no pain, and when Hywel went back to the GP he was told the gland should return to normal now the throat infection was clear. November and December were very busy. Hywel would get home from school exhausted after running around after 30 reception age kids, and by 9:30 was falling asleep on the sofa. He was so tired he couldn’t keep his eyes open and was really grumpy when I tried to wake him.

January brought the same thing every night. Hywel falling asleep early on, too tired to help with the tea, the domestic tasks and sorting the kids out. I had a demanding full time job too and it was really getting me down. We were rowing about it and I insisted he should go back to the GP again, to ask for some tests to see why he was so tired. He still had the lump in his neck but it was still small. So back he went to the GP, his fourth visit, and his fourth different Doctor. Again the doctor said the lump was just a swollen gland and that Hywel was just a bit run down and told him to come back if he was concerned. In February the fatigue at home was not getting any better, the lump was still there and the teachers were accusing Hywel of having Man flu! I was at my wits end, I had been looking things up on the internet and was really worried. Again I nagged Hywel to go back to the GP and insist that they do some tests to find out why the lump wasn’t going and why he was experiencing such extraordinary fatigue. I went with him this time and sat in the waiting room, after a while he came into the waiting room to get me as the Doctor wanted to speak to us both. The Doctor we saw had just qualified as a GP and had recently completed a 6 month rotation in ENT. She had listened to Hywel’s history and said she wanted Hywel referred to the ENT consultant she’d worked with. Hywel had an appointment within 2 weeks. We saw a consultant who said he thought it might be a branchial cyst and wanted Hywel to have an ultrasound.

There was a two week wait for the ultrasound. During that time I was terrified, I’d looked at lots of stuff on the internet and had convinced myself that Hywel was really ill. He was so tired all the time I thought he might have cancer. I didn’t want to tell him what I thought as he was convinced it was something minor and I would be accused of over dramatising the situation.  Several times I broke down in work with my closest colleagues, and told them my fears, they kept telling me they were sure that everything would be OK. Hywel wouldn’t let me go with him for his ultrasound as he didn’t want me to take time off again and said I was being over protective. He rang me straight afterwards as he was a bit shaken, he hadn’t expected them to do a biopsy which had been quite painful and they’d sent him straight for a chest X Ray. I left work early and went home. Hywel was still convinced he just had a cyst and he insisted on going into work the next day as it was only a week until the end of term. The teachers in school had stopped accusing him of having man flu and were really worried about him too. Over the next few days he was in a lot of pain following the biopsy and other lumps had started to come up in his neck and he did admit he was a now a bit worried about what was wrong. He went back to see the GP who he'd seen initially, because we hadn’t heard anything from the hospital. She promised to chase things for Hywel and ring us when she knew what was happening.

At 4:30pm on Friday 30th March the Doctor rang, she told Hywel she was very sorry but it wasn’t good news, the lump was a carcinoma and he had an appointment at 4pm on Monday with the consultant to discuss his treatment.

I was sat next to Hywel when he received the call, the kids were up in their rooms. Hywel just stared out the window, all I could do was rub my hands up and down his back and hold onto him, neither of us cried we were both in too much shock. I had been preparing myself for bad news but expecting it to be good news, as it couldn’t happen to us, we were just getting our lives sorted after Hywel had spent 4 years studying for a degree and then PGCE so he could change career. He’d only been teaching a year and a half and it just wasn’t fair, we were supposed to be going away in a weeks time to Boston for our 10th wedding anniversary and we were so looking forward to it - we so rarely had time just the two of us. Why us? Why now? Our friends were on their way down to stay with us for the weekend. They knew we were waiting for results, but had wanted to come and stay whatever those results  were. We rang to forewarn them and give them the option to postpone. They still wanted to come as long as we were OK with it. Hywel was adamant that he wanted them to come. So they spent the weekend with us as we had booked for all of us to see Footloose in the Millennium Centre as a birthday treat for my friend Sarah. Hywel and I were both in a daze the whole time,. I can remember feeling really relieved when the lights were dimmed in the theatre. I was able to hold Hywel’s hand really tightly and let silent tears roll down my cheeks for most of the performance. I didn’t want anyone to see me cry as I needed to be strong for whatever lay ahead and all that kept going through my head was Oh My God Hywel has cancer, please don’t let him die; closely followed by - how are we going to tell the kids?

Who am I?

Thursday, July 21, 2011

I’m Hywel Jones. Hywel is a Welsh name and is pronounced How-well. Not Huw-well, Hi-lo or any other myriad of variations. Mind, they still mis-pronounce it at the local pharmacy, even after I have politely told them that it’s incorrect. Still....if it makes them feel better bless ‘em. I use to work in industry until boredom and a need to intellectually challenge myself drove me to University. I gained a Science degree and followed that with a year’s teacher training. I taught in a Primary School for a staggering 18 months before being diagnosed with cancer.

I love film, reading and music. My wife will tell you differently. She says I like anything that I take an interest in, and when I take an interest, boy, I get stuck in. I read a lot and my current trend is Depression era gangsters. A bit of something light hearted to keep the cancer mood up-beat. All because of that pesky Bonnie and Clyde film. I watch a lot of films, the primary reason being that current TV drives me up the wall with it’s mundane ramblings and reality this, that and the other. Mind, I could always audition for the next ‘F**k me I’ve got cancer’ reality show.

Breast Cancer Yoga for Breast Cancer Recovery & Lymphedema: Let It Rise ...

Wednesday, July 13, 2011

Family history of cancer can be an evolving story

By Shari Roan, Los Angeles Times / For the Booster Shots blog

1:12 PM PDT, July 12, 2011

Family history is an incredibly helpful tool for doctors trying to determine a patient's risk of cancer. But one family history intake will not suffice. Rather, family history needs to updated every five or 10 years, according to the authors of a new study.

Researchers at UC Irvine looked at thousands of adults with a personal or family history of cancer and found that many changes in one's family history of breast, colorectal and prostate cancer occur between age 30 and 50. Based on their findings, the authors suggest that a patient's family history (of first- or second-degree relatives) of cancer be updated occasionally.

Family history is often used to determine how often a person should be screened for various types of cancers, the authors note. People with an increased risk due to family history may need to undergo more screening or start screening at a younger age.

"Family health history data are more likely to be collected at the initial clinic visit and are not adequately updated during follow-up visits," the authors wrote. "If a patient's family history is not updated during early and middle adulthood, the opportunity may be missed to intervene with earlier or more intensive screening that maximizes the likelihood of detecting cancer at an early, treatable stage."

The frequency of cancer screening tests has become a topic of debate in recent years as medical experts try to balance the benefits of screening against the potential risks and costs and move to personalize screening recommendations. With the increasing use of electronic health records, it may become easier to efficiently update family history records, said the author of an editorial accompanying the study. But how much family history matters when personalizing cancer screening recommendations is not clear.

"[M]uch needed evidence about the population health benefits of early and intensified cancer screening according to familial risk has yet to be developed," wrote Dr. Louise S. Acheson of Case Western Reserve University School of Medicine.

The study is published in the Journal of the American Medical Assn.

Breast Cancer Yoga's Healthy & Hopeful Lyfestyle Series

Saturday, July 9, 2011

Helpful & Hopeful

Breast Cancer Yoga

Cancer Connections

Friday, July 1, 2011

Join Caner Connections on July 27th at Hope Lodge in Gainesville for a presentation by Shine and Elder Options. For more information or to RSVP, please reply to

SHINE and the programs of ELDER OPTIONS are dedicated to empowering patients, families and caregivers to make informed decisions about aging in place, healthy aging and about Medicare/Medicaid health insurance options by offering free and unbiased individual counseling, group presentations, evidence-based community education and the ELDER HELPLINE.
ELDER OPTIONS is the Mid Florida Area Agency on Aging and has many resources to help elderly, low income or disabled cancer patients and other seniors:
·         Disability programs and services
·         Transportation
·         Meal programs
·         Legal assistance
·         Caregiver support
·         Consumer issues
·         Subsidized housing
·         Emergency resources
·         Financial assistance

SHINE (Serving Health Insurance Needs of Elders) is the statewide, volunteer program of the Florida Dept. of Elder Affairs offering free counseling and assistance on Medicare/Medicaid, supplemental insurance, long term care planning, prescription drug assistance plans, Medicare fraud, and more.