Radiotherapy Round Two

Monday, October 24, 2011


November 2010 and I was due to start another load of radiotherapy. Even though I had suffered after the first lot, compared to the chemo I had just finished I wasn’t fazed by this in the slightest. This sounds like a very blase statement but the truth of the matter is that I have been through so much pain and suffering the last few years that I had virtually become immune to any more the NHS could throw at me.

Radiotherapy planning is normally quite straightforward. A CT Scan with a dye injected through a cannula so that the physicist can see precisely where the beams are to be fired. This time I had problems with the cannula. My veins in the one hand were so shot from the chemo that they couldn't get the needle into the back of my hand at all. After 3 attempts they gave up and tried the side. Two failed attempts there and then they tried underneath my wrist. That also failed. Apart from the obvious that its incredibly bloody painful to have someone shoving a needle through the skin of your hand, having it done repeatedly was taking it’s toll. I was sweating so much that my shirt was soaked through with perspiration. My wife was getting increasingly worried as I had been in the room for nearly 45 mins and hadn't appeared for my scan yet. This was another low point in my life. You can only endure so much pain and I was at my wits end. Someone else from another department came along and finally managed to get the cannula in near my knuckle. At last I thought, no more jabs for me. Whilst lying on the CT Scanner bed I was then told that I would have to be tattooed with a very small needle as they needed some markers for the machine. I burst out laughing at that point. After all I had endured I had to have my chest and side poked around with!

I was having a radical regime which was hopefully meant to get rid of what they could see. It was on a different machine than last time. Because of the location of the tumors and as the field of treatment couldn’t cross the last one, my treatment would take place on a machine with a built in CT Scanner.

Planning done I was ready to start 4 weeks of intensive ‘blasting’. After a few days I found this regime of treatment intensely boring. Same journey every day, Sometimes a short wait for treatment, sometimes a longer one as one machine or another was ‘seen’ to. This treatment was also to be a hell on earth scenario and this time was nothing to do with the pain or suffering or, in fact anything associated with the cancer. This time it was the weather.

My treatment plan was every day. Monday to Friday for 4 weeks. If I missed a day I would have to have 2 sessions 6 hours apart the following day. Basically I couldn’t miss one. Toward the latter half of December the weather turned colder and the snow started. It got more difficult to get down there for treatment. On December 19th we had booked to see Mamma Mia in Cardiff with my daughter and friend. We decided to catch a train to the Bay and stay the night at my brother-in-law's. The next day I had to have treatment again and it was also my birthday. The following morning it was snowing heavily. We managed to catch a train near the hospital and walk to get my treatment. By now the snow was inches thick off the ground and my already poor walking skills became increasingly worse trudging slowly through the snow. I had my treatment and on leaving found that the trains from the nearest station had been cancelled. We trudged to the next station and caught a train to Pontypridd where we knew the bus service to home was still running. On arriving in Pontypridd we realised that the bus service we needed had been cancelled 5 minutes earlier. We were 3 miles from home, with snow everywhere and no hope of getting home. Eventually at the end of my tether my wife called a friend who managed to drive to Treforest (we had to catch a train back to Treforest) and picked us up a half hour later. We got home cold, wet and tired out.

Luckily for us a friend with a truck managed to drive us to the last appointment the following day. My treatment had finished, I had spent 6 hours of my birthday trudging around in the cold and now my throat was sore. As the effects of radiotherapy gradually worsens over time I failed to eat my Christmas dinner as I could barely swallow. There was nothing I could do about it. I had to grin and bear the next two weeks and wait for the pain and scarring to die down.

I realised mid January that I had lost part of my life, or any quality attached to it from September through until the end of December. No quality time at all. Now I was facing up to the realisation that another clinic was due mid March and another CT Scan to see if the radiotherapy had worked.


Hywel had found chemotherapy incredibly difficult. Radiotherapy was something he'd experienced before so although we knew it wasn’t pleasant, it was a less daunting prospect than chemo. We went to the planning clinic thinking it would be a quick scan, discussion then home. Boy what a day! Hywel was taken off by one of the nurses to have a dye injected into his veins ready for a CT scan which would help them plot the radiotherapy beams. Ten minutes went by and though I was happily reading my magazine I wondered how long he would be. There was another patient waiting next to me who kept on and on about how long she was being kept waiting and complaining that she really needed to go for a cigarette. Nearly thirty minutes went by and I wanted to strangle her, plus I was really starting to worry about Hywel. “What now?” I kept asking myself. I wandered down the corridor to see if I could find anyone to ask. Just at that point, one of the nurses came out of their room and told me that it wouldn’t be much longer, they were having a bit of trouble getting the needle into Hywel’s veins and they'd asked a nurse from the X Ray department to come and help, who was on her way. After forty five minutes Hywel came out. He was really shaken and his shirt was soaked in sweat. My heart went out to him, and then I felt so angry I wanted to scream, after all he’d been through with the chemo he’d now had his hand butchered! Luckily the other lady had gone for her cigarette otherwise I think I would have snapped at her. Hywel was then called in for the CT scan. The scan was done quickly and we then saw the registrar who told us what to expect whilst Hywel went through his treatment. On the way home I told Hywel about the lady and the cigarettes and that I had wanted to scream at her. He told me that after all the problems with the needle in the cannula room he was told in the CT room that they would have to give him three small marker tattoos on his chest! We both started giggling at our shared stories which relieved the tensions of another difficult day.

The radiotherapy wasn’t too bad, just time consuming, especially on the days that the machines were swapped around because of problems with frozen cables. The weather had turned incredibly cold and it was regularly quite icy. The treatment plan was for twenty sessions Monday to Friday, finishing December 21st. Towards the end of the treatment the weather was getting worse and worse. 

On December 16th we had quite bad snow and it was impossible to get our cars out of our street. Luckily our friend Martin was able to drop us down and bring us back on the Friday - he lived on a main road five minutes walk away. On the Sunday (19th Dec) the weather was still pretty bad and we had booked to see Mamma Mia with Hywel’s daughter Carly and her friend. We weren’t able to get a refund on our tickets and if we changed to another night there were no seats together. We still couldn’t get our cars out, so we asked Martin if he could drop us at the train station. We arranged to catch the train into Cardiff and stay at my brother’s flat in the city centre after the theatre, that way we could get to Velindre more easily on the Monday. The show was great and we had a lovely evening with Carly and her friend Amy. Amy dropped us at my brother's flat and we had a couple of glasses of wine and a chat with them. 

The next day was Hywel’s birthday and I had taken a few little presents for him to open at my brother's in the morning. We rang Velindre to see if they could fit us in early. Snow was starting to come down heavily and although the trains were running OK we didn’t want to get stuck in Cardiff. Adam was home from Uni and looking after Elliott so we knew they were OK, but I was worried about Hywel. It felt like a bit of an adventure when we set off through the snow. We were dressed for the weather, but the snow was coming down really thick and fast and some of the trains weren’t running or were at best sporadic. We had a bit of a wait at Cardiff Central Station and managed to get to Coryton, which was a five minute walk from Velindre. 

The snow looked really pretty as we walked slowly through it, but Hywel was getting very tired and found it hard going. We still felt like it was a bit of an adventure when we arrived at Velindre and shared stories with other patients about how we’d got there but the novelty was gradually wearing off. We had to wait over an hour for Hywel’s treatment and the snow was still falling. We were told that trains had stopped running from Coryton, but that if we walked to Llandaff North train station (about a mile away) trains were still running to Pontypridd. Hywel’s daughter was keeping us informed of the trains and buses so we took another slow walk to the train station. It was packed but I did manage to wangle a seat for us, so we could have a bit of a breather. We got to Pontypridd and I rang the bus company who assured me the bus we needed was still running. We nipped into M&S on the way so I could pick up a birthday cake for Hywel and carried on to the bus stop. When we were on the stop a lady told us that the buses had stopped running. I rang the bus company again and was told my informer was right, the service had been suspended. We tried to get a taxi but they weren’t prepared to take us unless it was an existing booking. I had to ring Martin again to see if he’d come and get us. He asked us to get the train back to Trefforest and picked us up from there. We were both thoroughly miserable and the cold and wet had started seeping through even my furry wellies. “Happy Birthday Hywel”, I thought. 

Velindre were insistent that Hywel shouldn’t miss even one of his treatments but we still couldn’t get our cars out and Hywel was completely exhausted by the journey by public transport. I wanted to ring a friend who I knew had a 4x4, he wasn’t a close friend but I was sure he wouldn’t mind. We didn’t feel we could ask Martin again. Hywel was very reluctant at my request for help. We argued about it a bit but in the end I just rang the friend in question and explained the situation. He was delighted to help out and even took us to Asda afterwards so I could get a bit of shopping (which turned into a massive trolley full!) because our online delivery had been cancelled the day before.

Christmas came and went. Hywel had a really sore throat and wasn’t able to eat much of his Christmas dinner, but it was still enjoyable because all the kids and Hywel’s Mum spent the day with us and we knew that the effects of the radiotherapy would ease off over the next few weeks. There wouldn’t be any more treatment for Hywel to endure for some time and the next hurdle facing us in the near future would be a scan to determine the effects of radiotherapy on the cancer.

Healthy Living and the Body-Mind-Spirit Connection

Sunday, October 23, 2011

Healthy Living and the Body-Mind-Spirit Connection

Dr. Rob Rutledge is a Radiation Oncologist in Halifax, Nova Scotia, specializing in breast, prostate and pediatric cancers, and an Associate Professor in the Faculty of Medicine at Dalhousie University.

Rob is also the co-founder of the Healing and Cancer Foundation which freely offers educational videos, documentaries, and webcasting seminars, and he is co-author of a book called The Healing Circle, which captures the teachings and inspirational stories from the cancer weekend support groups. (The healing circle is available as a fundraiser through CBCN…)

Between new work responsibilities as a manager in a telecom company, and increasingly take care of her elderly parents, Jan had let her healthy lifestyle slip. She had gained weight and found herself puffing up the stairs at home. After her mammogram showed a suspicious change, she quickly took a proactive role in her medical care, and underwent breast conserving surgery, radiotherapy, and has started five years of hormone treatment. Given time to reflect with time off work, Jan also views her diagnosis as an opportunity to help reclaim a healthy lifestyle, empower her body, and to heal her life from a bigger perspective.

Jan is giving herself the best chance of recovery from her diagnosis by receiving ‘Complete Breast Cancer Care’ – the integration of conventional medicine with healthy life style choices and wisdom-based healing techniques. The non-medical components of complete care can be artificially divided into care for body, mind and spirit. It may seem that healthy lifestyle choices would fall into the category of care of the body, but the reality is that care at any one level can profoundly influence healing on the other levels. This article outlines how the body-mind-spirit connection can be applied to the choices she makes every day.

Bringing Spirit into the Body

Jan knows the data that shows that her lifestyle choices actually influence the chance of whether her cancer will recur. For instance, a trial of 1490 breast cancer survivors showed the women who exercised for 30 minutes /day six times a week and who ate five or more servings of fruits and vegetables per day had a 5% improvement in survival at 10 years compared with the women who didn’t practice both healthy choices. The survival advantage held up even for the women who were overweight. (1) In another study women randomized to program teaching them how to decrease the fat in their diet to 20g/day decreased the chance breast cancer recurrence by 2.6% at 5 years compared to a control group (2). Other trials show that being overweight at diagnosis or gaining weight afterwards is a risk factor for recurrence. Though this knowledge is useful, it may not result in Jan maintaining a healthy lifestyle over the long-term.

Drawing on the body-mind-spirit connection to facilitate physical healing may seem unnecessary because Jan could simply force herself to exercise and eat a low-fat diet (high in fruits and vegetables) for fear that her cancer will recur. But as frequently happens, Jan’s motivation to maintain a healthy lifestyle may wane as her anxieties subside. She may easily fall into old habits, and stir the cycle of guilt and worry about her choices.

Bringing a spiritual perspective into self-care can increase the chance of long-term change because the motivation to heal is fostered by love and will continue to grow over time. At the core of the authentic spiritual teachings is an awareness of the sacredness of life. To experience this human life (to love, to give, to cherish, and to receive) is so precious and yet we often lose perspective because of the busyness and distractions in our lives. When we slow down and contemplate the sacredness of life, we can then see that our bodies are sacred too. Our bodies are these amazing media that allow us to go out into the world to connect with others. Our bodies allow us to extend a hand, or to give and receive a hug.

When we honour the body and see how special it is, we can begin to pay close attention to its needs. We can listen to how we feel when take care of it - getting adequate exercise, practicing relaxation and restoring ourselves with restful sleep. When we look at our bodies with great kindness, we no longer need to think about ‘being on a diet’, but instead, can lovingly choose the foods that will nurture us throughout the day. We are bringing the spirit of love right down into our every cell.

The Power of Mindfulness

Jan joined an 8-week mindfulness-based stress reduction program to learn one of the most powerful skills in promoting healing. Mindfulness simply means to bring our attention to the here and now with acceptance. It is both a skill that brings us clearly to the present moment, and a window into the spiritual depths of who we truly are.

As a catalyst for physical healing the power of mindfulness is that it reintegrates our mind with the wisdom of our body. For instance at mealtime we can bring our attention to the selection and preparation of our foods to answer the question ‘what is it that my body truly needs right now?’ As we eat, we can slow down and truly appreciate our food and the beauty of being alive. Bite by bite, we can continue to be present to the needs of our body. Being mindful of how our bodies feel in the hours after mealtimes provides the ongoing feedback we can draw on to make future decisions. Jan noticed that she could no longer eat a many fast food dishes without feeling bloated and tired for hours.

Mindfulness also provides us with the feedback to guide our choices about exercise. Jan noticed the high she felt in the hours after her brisk walk or a workout at the gym. It was also a pleasant surprise when her energy and concentration at work began to improve in the late afternoon at work, a time when she’d usually being struggling to be productive. Through mindfulness of her body she also noticed when she pushed herself too hard and felt depleted for the ensuring day.

The second skill that Jan continues to practice after the mindfulness course is meditation. She uses a simple technique to focusing on her breath and increasing the awareness of the sensations in her body, her breath, and the constant stream of thoughts and feelings that come and go. Her meditation practice is not about getting into some altered state, but instead, coming to know and love all of herself. On the days she spends fifteen minutes meditating first thing in the morning, she feels happier and calmer, and is more patient with her colleagues. Remarkably, it’s as if meditation has uncovered a deep well of compassion she has for herself and for all of life. With this feeling she wants to take better care of herself, including making the effort to go to the gym when she can.

The other advantage of meditation is that it reinforces the relaxation response. Practicing a relaxation technique is a skill often forgotten on the list of healthy lifestyle choices. Yet, the health benefits settling the mind and relaxing the body remain indisputable. When we let go of being chronically stressed, every cell in our body gets the signal to repair itself – and immune function improves. Simple exercises like meditation, visualization, or breath-based techniques literally change the chemistry in the blood stream, and change the pathways used by our brains. Practicing relaxation can make us feel happier, think more clearly, and allow us to enjoy our life to the fullest.

Lastly, Jan sought out a counselor to help mentor her on her healing journey. The emotional issues which were driving her poor lifestyle choices were finally being addressed directly. Her core beliefs of “not feeling good enough” and the more painful memories of psychological abuse were blocking her healthy outer transformation. Learning to be kind towards herself, Jan is reclaiming the already existing wholeness of her life.

Yoking the body

Nurturing the body through healthy lifestyle choices can also have a powerful effect on our spiritual life. Jan discovered a Yoga class which she thinks has made the most difference in her recovery. Yoga, like Qi Gong, or Tai Chi are age-old healing practices which have been developed with great wisdom over thousands of years. The benefits go far beyond the improved strength, flexible, and the relaxation response Jan gets by the end of each class. When we practice with attention and a spirit of appreciation, the body can become the vehicle which unites the infinite to the finite. The feeling of bringing life energy or even a higher consciousness right down into the body, is a lived experience that cannot be explained by the western perspective. We can use our body to connect us with something much larger than ourselves – perhaps an inexplicable joy, or a heartfelt compassion for all of life.

1 - Greater Survival After Breast Cancer in Physically Active Women With High Vegetable-Fruit Intake Regardless of Obesity. J Pierce et al. J Clin Oncol 25:2345-2351.

2 – Dietary fat reduction and breast cancer outcome: interim efficacy results from the Women’s Intervention Nutrition Study. Chlebowski RT et al. J Natl Cancer Inst 2006;98(24):1767-76

Chemotherapy: August 2010

Thursday, October 13, 2011


I had always feared chemo. I don’t know why, but the thought of having a version of drain cleaner shot through my veins left me with a sense of dread. I was put on a GemCarbo regime. The first infusion consisted of one lot of Carboplatin followed by Gemcitabine. Seven days later I would be give just an infusion of Gemcitabine, followed by a two week ‘break’ before the cycle started again.

The first infusion took around three hours in total, including bloods at the beginning. All I felt throughout the whole process was the cold seeping of drugs into my veins. Luckily a heat pad was at hand to alleviate the discomfort somewhat. Funnily enough the worst discomfort I felt was the cannula put into the back of my hand. Bloody painful at the best of times, and that’s even before the chemo started irritating my veins.

I was fairly upbeat that day and wondered how many days it would take before I would feel any sort of reaction to the drugs. It didn’t take long. An hour after it had finished I was lying on the settee at home with flu like symptoms. At that point I started descending into my roller coaster ride to hell that I never recovered from during the whole process. Practically my whole world felt drug induced. We'd booked into a hotel in Cardiff the following night for two days, as I thought the chemo wasn’t starting 'til later. We didn’t cancel under the assurance that I should feel “ok.” I felt like I was slipping in and out of consciousness most of the time. I wandered around the Welsh capital with everything looking like a scene from ‘Dark City’.

After a week of feeling like crap I was ready the following Thursday for my second infusion of Gemcitabine. I never made it. Having showered in the morning I noticed the veins in my left arm and chest were horribly swollen, and after a quick call to the Oncology team was told to head over to A & E pronto as I had a suspected blood clot. Now the good people in the Oncology hospital stated that a Doppler Scan should pick up any sign of a clot. Well, after arriving in A&E the first Doctor who saw me was most insistent that it couldn’t possibly be a clot as I would have problems breathing. Sorry mate, second opinion needed here so another came along and agreed that it would need further investigation. A chest X-ray was called for, bloods were taken and showed nothing. By this time the swollen veins had died down abut I was still feeling unwell. A CT Scan showed nothing either, no luck thus far.

Six hours later and virtually at the end of my tether I was told there was time for a Doppler scan. Within ten seconds the scan had picked up my clot. I'd already received a blood thinning injection and was told to report back to the hospital the following day. On arriving at the ward on Friday I was politely asked how I'd feel about injecting myself with Clexane in the tummy everyday. “Great”, I thought, “I would just love to do that on top of everything else.”. Now, don’t get me wrong, the thought of jabbing myself in the stomach with a needle fills me with horror, but, strangely enough you do get used to anything, given time. Besides I had no choice, either I do it myself or I go the GP surgery everyday. Nope, I was doing this myself, and did it everyday for six months. This was on top of chemo, radio and everything else I was going through at the time.

My second infusion was obviously late and threw the whole cycle out, which I was told was quite normal for chemo patients. When my second cycle started it had to be postponed due to my white cell count being too low. Another week’s waiting and and I was getting sick of it all. One reason for this was that I never seemed to fully recover between cycles so permanently felt like crap.

Got through the second OK-ish and then the third one started. Boy, was I ill this time. We had friends over for a meal on the Saturday, two days after my infusion. I'd been in bed most of the day, feeling listless. I eventually got up around five-ish and went down to greet them. We had a meal, few glasses of wine and then settled down for a few hours. I didn’t feel particularly unwell just very very tired. Friends left at around 10pm and I lay down for a rest. My wife had insisted on ringing the Velindre Cancer Centre and explaining that I wasn't feeling very well but I was having none of it. In typical man fashion I said I was fine and to stop fussing. Half an hour later I was drifting in and out of sleep and the hospital was called. The told me to come in immediately. My blood pressure was way down and I was severely dehydrated. I was put on a drip and stayed on it, with various combinations of solutions, for three days. I could have died. Dragging a drip down a cold corridor in the middle of a frosty night on a Sunday morning to relieve myself was the low point of everything I had gone through. My body had taken a beating and I was ready to pack it in.

Back home on the Monday and having been told to drink copious amounts of water I had made a decision to stop chemo. It wasn’t for me and I had zero quality of life. At the next clinic I told them how I felt, but, incredibly enough the chemo so far had worked and had shrunk the tumors significantly. I was having no more chemo and could start my radiotherapy as soon as the planning was done.

Some people sail through Chemo without too many problems. I, unfortunately wasn’t one of those. Would I have it again? I really don’t know. I certainly wouldn’t want to feel like that again. If my only choice was to have it through a Cannula it would have to be a no. I found the experience too painful and distressing. Still, it’s a decision I may well have to face again at some point so will have to wait and see.


Chemo was always something Hywel dreaded, maybe because he'd spoken to and seen people who'd had it. The effects were pretty obvious and much more immediate than with radiotherapy. We were told every patient reacts differently to chemo so Hywel might not feel too bad. He'd get to know which were his good and bad days and we should work around that. We'd be able to ask for the chemo to be fitted around our usual activities so there wouldn’t be too much impact on our social lives. Hywel was to have four cycles of chemo, each cycle was three weeks long with the chemo being administered on day one and day eight of the twenty one. We had booked a two night stay in Cardiff before the chemo started, but because they wanted to start the treatment ASAP the first infusion was to happen the day before our booking. I was all ready to cancel the trip, but the oncology nurse advised us it should be fine and would be a nice break for us, Hywel was unlikely to feel ill so early on in his treatment.

I went with Hywel for his first dose of chemo, he had to have quite a large needle put in his hand which was a bit painful, I could tell as he was squeezing mine very tightly! He told me he could feel the drugs seeping into his veins as it was making his arm really cold, so cold it was getting uncomfortable. He was given a heat pad to help with this which was an improvement. There were three other people sitting in similar chairs with drips in their arms, some on their own and some with a family member. I noticed they were all a fair bit older than Hywel. We chatted quietly to each other and I popped out to get us a hot drink. The treatment took around three hours. We got home and Hywel started to feel the effects immediately. He lay on the sofa shivering and we both missed choir that night as he felt pretty rough and I didn’t want to leave him.

We went into Cardiff the next day, but it was a mistake. Hywel was feeling so dazed and unsteady during a wander around the shops that we went back to the hotel for him to sleep. Luckily I'd taken a novel and magazine with me as we spent a lot of time in the hotel room whilst Hywel slept! We did manage to go for a meal each night, but were both glad to get home as Hywel just wanted to be in his own bed. He spent a lot of time sleeping during his chemo.

The eighth day of cycle one arrived and Hywel woke up with an aching arm. He had a shower and when he came out he looked really strange. The veins on the left side of his chest were protruding and his skin looked red, accompanied by a swollen arm. I rang the chemotherapy helpline at Velindre and explained Hywel’s symptoms. They recommended we go to our local A&E as it sounded like a blood clot and they would be able to do a doppler scan to find out. We were seen pretty quickly by an A&E doctor, he wasn’t convinced Hywel had a clot even though we told him Hywel had cancer, had just started chemo and had been advised by Velindre to go to A&E. He felt that Hywel should be having breathing problems for this to be the case. We weren’t happy with this and wanted a second opinion so another Doctor spoke to us and agreed that further investigation was needed. Bloods were taken and Hywel was sent for a chest X-ray then a CT scan. We were then taken into a side room with a senior nurse who asked Hywel lots of questions, measured Hywel’s arm and gave him a blood thinning injection because now they agreed there could be a clot. The X-ray came back clear and the CT scan showed an abnormality around one of the veins but no obvious cause for the swelling. We had been in the A&E department most of the day at this point. Finally another A&E Doctor said they ought to do a doppler scan as a quick final check because Velindre wouldn’t be very happy if that wasn’t ticked off. The scan picked the clot up immediately, leaving me asking myself, “Why couldn’t this have been done in the first place ?” We were then sent home and told to come back the next day. Hywel was shown how to inject himself with Clexane, which he'd need to do for four to six months. I was asked if I wanted to do it, I wasn’t keen to stick a needle in Hywel and inflict pain on him again, and we agreed that if Hywel did it himself, he would be a bit more in control of his treatment.

Hywel’s second round of chemo was a week late because his blood count was too low, so the treatment cycle now coincided with Elliott starting his first year in High School and Hywel’s Australian cousin Roger coming to stay. Elliott was really excited about starting school and looked so grown up in his uniform. We both dropped him off in the morning and waited at the window come 3:30pm to see him walking down the street at the end of his first day (though we pretended we were just sat in the lounge watching telly when he let himself in!). Roger used our house as a base for a week, which was lovely for us, it took our minds off Hywel’s treatment and the week flew by. Then before the third cycle started I drove Adam up to Warwick University with a mountain of stuff to start his Chemistry degree. It was hard doing that on my own, but Hywel needed to rest and Adam was able to do all the lifting and carrying of his belongings. I felt sad after waving him off, but at the same time I was proud and relieved that he had done so well in his studies despite what we'd been going through at home.

The third cycle started and Hywel was really feeling unwell, this time with stomach problems, he was constantly in the bathroom. Friends came over for a meal with us and I could see that Hywel was unwell. I told him I was going to ring the hospital as I was really concerned, which he thought was over the top, insisting he just had an upset stomach. When he went to the bathroom for the twentieth time I told his friends I was really worried and that they should go home - I was going to get in touch with Velindre. I rang them and explained, they spoke to Hywel and told him to come to the hospital straight away. He was very ill, severely dehydrated with very low blood pressure - he could have died without treatment. “You should listen to your wife, sometimes she will know you better than you know yourself”, was one of the things a nurse told him - he does a bit more now as that incident was very scary! Hywel spent three days in the hospital and decided he did not want any more chemotherapy. After he came home he needed to rest. His next clinic appointment was to discuss progress. Hywel told the consultant his decision, but at the same appointment the consultant said the chemo had actually done a great job - the scan showed the tumours had shrunk significantly (which meant a greater than 50% reduction) and she now wanted to treat Hywel with radical radiotherapy as there was a small chance that the tumours could be destroyed.

We were both delighted with the news and because there was no further chemo planned we were able to go on a trip to Liverpool with our choir where we opened the National Cancer Research Institutes’ 2010 conference. Attending this was something we were aiming for at the end of the chemotherapy. I was singing a small solo part at the beginning of our opening song “You’ll Never Walk Alone” and Hywel had pushed himself to be there to support me doing that. It was a very scary but proud moment for me. The words I was singing were very apt for our situation and I was so glad that I could sing them with Hywel stood in the choir close behind me. It was an amazing experience for the whole choir as the event was exactly the right place for us to be singing and it was the biggest auditorium we had performed in. We had rapturous applause and a standing ovation at the end of our performance, lots of the people attending the conference sought us out at the exhibition afterwards to tell us how moved they had been and what a great idea the choir was for helping to support people living with cancer.

After Liverpool it was back to earth with a bump as the planning for the radiotherapy needed to be done.

Benefits of Yoga and Lavender Aromatherapy

Lavender Aromatherapy

Benefits of Yoga and Lavender Aromatherapy 
Breast Cancer Yoga and complimentary therapies can be both preventative and supportive in fighting breast cancer. Some therapies boost the immune system to counteract chemo and radiation therapy effects. They can also reduce nervousness and anxiety. We have included a  few therapeutic essential aroma hydrosol sprays. 
Lavender - Lavandula officinalis
Lavender as an aromatherapy that just fills the air with wonderful relaxing scents. Lavender contributes to emotional support that creates relaxation, lessens nervous anxiety and reduces restlessness. Softens the impact of stress. Also helpful for relieving insomnia and encouraging restful sleep, thereby reducing fatigue.
Lavender for Chemotherapy& Radiation Therapy
Lavender contains a particular keynote to help encourage relaxation before and after chemo and radiation treatments. To a large extent the aromatic fragrance of Lavender can stimulate the body’s innate healing powers, and when energies are low or have been severely depleted, Lavender is emotionally uplifting. This essential oil is specifically formulated with particular properties which help encourage relaxation any time when needed. 
Therapeutic Actions
Offers emotional support
Lessens nervous anxiety and restlessness
Relieves headaches from stress
Helpful for insomnia

Cancer Connections: Life After Breast Cancer

Friday, October 7, 2011

WHERE: HOPE LODGE:  2121 SW 16st Street, Gainesville
WHEN: Wednesday, October 12th,  2011   12-1 p.m.
SPEAKER: Dr. Tina Lam
TOPIC: Life After Breast Cancer
RSVP to Barb Thomas: 

Free Martial Arts Program for Kids with Chronic Illness or Pain

Beginning November 7th, 2011, classes will be held on Mondays at Dragon Rises College of Oriental Medicine, 1000 N.E. 16th Ave. Bldg. F, Gainesville, FL
Class 1 : 4:30-5:20 p.m.
Class 2 : 5:30-6:20 p.m.
For more information on how to enroll in this free program, please call Shands Arts in Medicine at 352.733.0880

Aromatherapy for Breast Cancer Recovery

Tuesday, October 4, 2011

Aromatherapy has been shown to be an effective complementary treatment for breast cancer, and can relieve many of the side effects of chemotherapy, and radiation therapy. Aromatherapy can help you navigate the terrain of your healing journey from surviving to thriving. Learn about the essential oils to use and why.
  • Control nausea
  • Easing anxiety and depression
  • Lowers blood pressure in patients going through chemotherapy


A Lung Cancer Diagnosis

Monday, October 3, 2011


A Lung Cancer Diagnosis

April 28th 2010 meant a routine six monthly Head and Neck Clinic. I wasn’t worried about this clinic much. There was the usual ‘feel’ of the neck to find any abnormal lumps or bumps; a quick look inside the mouth and camera down the throat to check on my vocal chords. All was well. At the end of the appointment I happened to mention I was slightly more tired than normal, but put this down to everyday life and nothing else. I hadn’t received a scan for a while so it was suggested an MRI would be a good idea. I wasn’t worried at all. I'd been given a few scans since surgery and my neck region was clear in all of them.

I was booked in for an MRI scan on May 19th 2010. I’ve never been troubled by these machines in the past, although it makes people who are claustrophobic feel very uncomfortable. The scan was over in around 40 minutes and it was the usual wait for the inevitable results. “Nothing to worry about there Mr Jones, all is well as usual.

May 28th 2010. I received a phone call from the hospital. “Nothing to worry about”, but they had picked up a small nodule near my collarbone and wanted to give me a CT scan. “Probably nothing”, but they wanted to be doubly sure. My heart sank immediately. I just had this awful feeling my cancer was back. I didn’t know how or where but I couldn’t help feeling the news wouldn’t be good. The nodule was so small that in a person with no history of cancer, it would have been no concern at all, but with my history they wanted to make sure. I didn’t think for a minute my cancer would appear somewhere else after being in the head and neck region previously, and especially after being clear for three years.

My CT scan appointment was at 8.45 am on June 1st 2010, so no hanging about. The scan went smoothly and all I had to do was wait to find out the results. I always find waiting the most difficult time. I don’t know why, but for me the fear of the unknown has always been far more difficult to handle than dealing with a fact.

June 2nd 2010. I was booked into a Head and Neck clinic at 11.45am. I was slightly nervous as I didn’t know what this small nodule could be or could mean. They had fortunately been able to look at the scan and the news seemed to gradually worsen. The scan revealed nodules in the mediastinum area and would have to be further investigated. I asked if they had any idea what this could mean. “I’m sorry but at this stage it could mean anything”, and was told until a biopsy was done no further news would be forthcoming. A mediastinoscopy wouId reveal much more information to the team. I was very worried and convinced myself the cancer was back. But what kind and what type? My mind was going into overdrive again, just like it did three years ago.

I was booked in to have an outpatient appointment at the University Hospital of Wales in Cardiff on June 16th 2010. All my other procedures had been done at the Royal Glamorgan but this was a specialist biopsy and had to be done by a thoracic surgeon. We had a brief chat and was told it would be a good idea to have the biopsy done sooner rather than later.

June 29th 2010. Mediastinoscopy. The purpose of this procedure is to examine the lymph nodes found in the central chest space between the lungs called the mediastinum. The mediastinum is the area behind the sternum (breastbone), which contains the heart and its major blood vessels, some of the lymph nodes, the trachea (windpipe), the oesophagus (the tube through which you swallow your food) and the thymus gland. Another general anaesthetic and we’re off. A small incision is made at the notch at the top of the breastbone. The surgeon then gets access to the lymph nodes with a mediastinoscope. This instrument is a narrow, hollow tube with a light attached. It allows the surgeon to see inside the mediastinum. Other instruments are inserted through the hollow tube to take samples of tissue from the lymph nodes or mass, these are then sent for analysis.

Another Head and Neck appointment, on July 14th, this time to discuss the results of the Mediastinoscopy. Strangely enough, the waiting for results has always been the hardest part but in this case I knew that my cancer had returned. When I went to see my Consultant the first thing he said was “You know what I’m going to say don’t you?” I said “Yes - its back”. It’s amazing how well you get to know your own body - so this time there were no shocks, just a numb feeling that I had been clear for 3 years and now the fight was about to start again.

July 21st 2010. Time to go to Cheltenham again for a PET Scan on July 21st. We had just cancelled a two week holiday to Menorca - yet another cancelled holiday - and felt sorry for Elliott as this was to be his summer break with us 'away from it all'. Having had a PET Scan before I knew the drill quite well. It was a nice sunny day and enjoyed the drive up with lunch in town afterward. Again it was another wait to see what the next step would be.

An appointment was made to attend a Rapid Access Clinic to see a specialist on August 11th. I knew I had cancer but didn’t think any more other than another round of treatment, possibly surgery. An inconvenience and another worry but at least I had been through various treatments before so felt sure I would cope with whatever they threw at me this time. My wife asked what the prognosis was. We were told that it was terminal. The word hit me like a train. I just stared out of the window not knowing whether to laugh or cry. Instead I just sat there dumbfounded. All my emotions and feelings had drained away. I had always wondered what it was like for a cancer patient to be told they had a terminal illness, well now I knew. I didn’t get upset at all. I just felt completely empty of all thoughts. We were off to Tenby for a few days in a caravan with Elliott a few days later. We felt we had to get away from everything and I wanted to spend time with my youngest son.

I had to brace myself for another round of debilitating treatment and it was still going to kill me in the end. I thought , “F**k me, what’s the point of it all?”

August 24th was the first appointment with my Lung consultant and two days later a kidney test at Velindre Cancer Centre before chemo started. I was thinking, “Ahh well, here we go again.”


A Lung Cancer Diagnosis

Hywel seemed to be doing quite well and went from monthly to quarterly to six monthly check ups at the head and neck clinic. In April 2010’s clinic he mentioned he’d been feeling a bit more tired than usual, which we put down to difficulties we’d been coping with since Hywel’s Dad died and his Mum had fallen. Hywel’s head and neck area felt the same as usual and a quick throat check appeared to be fine. The registrar decided an MRI scan would be a good idea as Hywel hadn’t had one for a while. We weren’t too worried as it was part of the routine.

The scan took place on May 19th and we didn’t hear anything until May 28th so had put it out of our minds thinking, “No news is good news.” Since my mother-in-law’s fall I had found it really difficult to cope with the extra demands on top of full time work. I asked whether I could reduce my hours slightly and work four x eight hour days equalling a thirty two hour week instead of a thirty seven hour one. A Friday off would help me cope. This was met with a lot of resistance, and I had to really push before I was grudgingly allowed to do this for a trial period. Strangely enough, every Thursday something urgent seemed to crop up and more and more work was being piled on me. I was also regularly asked to pop in on a Friday to sort a couple of things out! When Hywel rang to tell me that something had shown up on his scan I was devastated. I had spent the first five minutes of our conversation moaning about some other crisis in work before I asked him how his day was going and he told me the news. I put the phone down and howled like a wounded animal, I just knew the cancer was back and I was in complete turmoil. All the fears I had buried for the last few years resurfaced so quickly, and I was reeling. I went to see my boss and I told him the news. I told him I was going home and didn’t know when I would be back in. I never returned. I’d struggled so much to get support to help deal with my caring responsibilities that I felt I couldn’t cope. Thinking about work made me a nervous wreck and I couldn’t sleep through worrying about Hywel, and how I would cope being back at work. My Doctor signed me off on the sick with stress, and a couple of months later a voluntary redundancy scheme was offered which I applied for and was lucky enough to get.

By the time I got home from work that day I had pulled myself together and tried to be really strong and positive. There could be a simple explanation for what was on the scan, maybe Hywel had an infection and his glands were up because of that. Hywel had to have a CT scan on June 1st so that a more detailed picture could be obtained. At least there were only a few days wait between being told further investigation was needed and discussing results at the head and neck clinic. We knew from bitter experience how hard the waiting and not knowing was. The clinic was a pretty sombre affair. More abnormalities had shown up on the CT in the mediastinum and Hywel would need to see a thoracic surgeon as more investigation was needed before the team would know what was happening, and what needed to be done. We were both numb and upset as we faced telling everyone - the roller-coaster ride was about to start all over again. We knew a lot more about the world of cancer treatment this time, which in some ways made the mountain we’d have to climb seem higher. We didn’t tell as many people as first time around because we didn’t want the added stress of constant phone calls; so just informed really close family and friends.

Hywel was seen on June 16th in University Hospital Wales (UHW). It was revealed the procedure needed was quite complex and had to be carried out by a thoracic surgeon - our local hospital didn’t have one of those, so Hywel’s op would take place in Cardiff. Hywel was told he could either have the procedure June 29th or July 6th, he would then have to wait about two weeks for the results. The procedure was to take about forty five minutes and Hywel would probably be able to come home the same day. We had to decide what to do. We had been nominated by Tenovus and invited to attend a garden party at Buckingham Palace for Princess Anne’s 60th birthday on July 1st, and we were really looking forward to it. We’d never been to a royal occasion so it was to be a once in a lifetime experience. It was really exciting when the invitation with the Royal Seal arrived, and I’d bought a lovely new outfit, including a hat for the occasion. We were told Hywel might be a bit groggy after the procedure but would probably be well enough to attend. If we left it until July 6th, we’d have to wait until we got back from a two week family holiday to Menorca for the results. We decided to opt for June 29th, so we wouldn’t have long to wait for results, and hoped that Hywel would feel up to the Buckingham Palace trip.

I had to leave Hywel in UHW on the Monday night. I wasn’t allowed to go in in the morning and wait with him before he went down - visiting time only was the rule, they were a bit stricter than in the Royal Glamorgan. I didn’t stay at home waiting this time - I hit the shops! I spent a few hours giving myself some retail therapy whilst keeping my phone on extra loud so I could hear any texts from Hywel telling me when he was going down for his op. He went down about 11:30am and I headed down to the hospital in time for visiting at 2pm. Hywel was late coming back to the ward - a procedure that should have taken forty five minutes took nearly two and a half hours. Hywel looked quite pale when he came back and was in a fair bit of pain. The registrar came to see him whilst I was there. They had had problems getting to the area they wanted to reach because Hywel had extensive scarring from his previous treatment, but they got what they needed to run their tests and would be able to make a diagnosis in time for Hywel’s clinic on July 14th. Hywel was kept in overnight as he was in a fair bit of pain but when I picked him up on the Wednesday, he didn’t look very well and the nurses felt he should stay another night. Hywel wanted to come home though because of the Buckingham Palace trip, but upon our return he was done in. He went straight to bed and we had a long chat, I was so worried about him, I really didn’t want to go to the Palace I just wanted him to be at home so I could be sure he was OK. He’d been worried I would be upset if we didn’t go and admitted that he felt really poorly and should have stayed in the hospital the extra night. I got in touch with Tenovus and explained the situation and they told us not to worry about a thing, they would sort it all out. In the grand scheme of things it really wasn’t that important and I was just relieved we’d be staying home.

The appointment at the Head and Neck clinic on July 14th was another nail biting wait. We had done enough research to know that a mediastinoscopy is only done due to a pretty high expectation there is cancer present so we were pretty much resigned to the fact we’d be told the cancer was back. The numb feeling descended. It was such a blow when Hywel had been clear for three years. We were advised we should cancel our holiday as another PET scan was needed in Cheltenham and Hywel would now need to be seen by a respiratory specialist. The scan took place July 21st, and we saw the specialist on August 11th. We had discussed beforehand what questions Hywel wanted to ask and I made a list. We wanted to know where the cancer was, how it would be treated, and what the prognosis was. The specialist told us the cancer was terminal this time. What a horrible thing to hear. We didn’t take much else in after that bomb was dropped and I went into denial. I think I still am in denial as it is not something I feel able to accept. We were then referred to the oncologist who would be outlining what treatment Hywel could have.

Hywel’s surgeon who had operated on him back in 2007 was retired from the NHS and still kept in touch with us. He phoned to see how Hywel had got on. When I told him Hywel had been told the cancer was terminal, he said that the surgeon’s view of terminal was often different to an oncologists’ view, and Hywel had surprised them all before with his response to treatment so we should try not to lose hope.

The lung oncologist saw us and wanted to treat Hywel quite aggressively with chemotherapy followed by radiotherapy. Hywel was young and didn’t have any obvious lung cancer symptoms so she felt he could cope with this type of treatment, and their aim was still to eradicate the cancer. They would start with four rounds of chemo over a three month period. We managed to get away for a few days to a caravan in Tenby with our youngest son Elliott before the treatment started and prior to his first year in High School. Adam had turned eighteen in June and did really well in his A-levels. He had a place in Warwick University and would be leaving home to start his new life at the end of September. I was very apprehensive about what the future would hold for us over the next few months and was so grateful my redundancy had come through from September 15th 2010, so I could afford to stay home for a year or two to look after my family.