Life After Cancer - Round One

This post is the fourth 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.

Hywel

It was a strange feeling after my radiotherapy finished. I had been through so much in the past 5 months and now was left 'in the cold'. No hurried scans, appointments, discussions or planning. Just a wait for the next Head and Neck Clinic.

We had been invited to stay at my brother-in-law's house in Malaysia. It seemed a perfect getaway. I was a bit apprehensive about the long flight but felt a complete change of scenery would be a good tonic for us all. It was very different and enjoyable, but at times a bit too much to take in - and after ten days I was glad to get home. I found the whole experience tiring. At least I had managed to prove to myself I could tolerate a long midnight twelve hour flight, and in hindsight I’m glad I went. The scar tissue hadn’t formed properly in my neck yet so it wasn’t aching too much.

Whlist in Malaysia, I had the courage to hold a snake. After surgery, nothing fazed me!

We tried to have a few things to look forward to. I found short term plans worked very well. I enjoyed short holidays or weekends away as long as they weren’t too far ahead. That was a risk I couldn’t take. Over time we settled into a routine. We had a few financial matters to organise. I briefly tried to return to work but it simply wasn't right for me.

Tenovus had been extremely helpful to us throughout this time, by giving all sorts of advice and encouragement. It’s amazing how little there is out there when your treatment from the NHS comes to a halt. It can be a very isolating experience, and one I found very difficult to deal with. We bought a cute little Cocker Spaniel in August 2008 and he was very good for me. Even though walking was difficult, it helped me to get out of the house when I felt I didn’t want to go anywhere.

My life was reeling at times. I had gone from being a full time teacher with a good wage to being nothing - that’s how I felt. I started doing some radio and TV work for Tenovus and enjoyed the experience. I've never had a problem talking about my cancer and feel it’s important to share the experience with whomever wants to listen.

View from the Sky Bridge - only half way up The Petronas Towers, Malaysia!

After being asked to help in the pilot scheme of the Tenovus Sing For Life Choir I started to feel less isolated. I was mixing with people who had been through a similar experience and was, and still am, enjoying the practice sessions and occasional concert now and then.

My father passed away in May 2009. It was a difficult time for us all. Even more so as there were no more family members to call on for support. My sister tragically passed away at just thirty years old in 1991 so there were times I wished there were other brothers or sisters to call on to help out. We found the endless treks to hospital to visit my Dad quite hard as he was there for eight months before he died. All this was on top of trying to get over the cancer treatment and prepare for whatever life lay ahead.

We, as a family, had settled into some sort of routine after our lives were turned upside down. We had been on some lovely holidays together, met some fantastic new people and were looking forward to planning more things. However, all that was about to change when a routine MRI scan brought up some unexpected results in April 2010.

Cathy

After Hywel’s skin had healed and he gradually recovered from all his treatment, his face changed from bright red to more of a sunburnt-brown skin shade and we tried to get on with our lives as normally as possible. We were invited to stay with my brother who lives in Malaysia and went there for a ten day holiday over the October half term and took Adam and Elliott out of school for a couple of days either side. It was hard going, Hywel had been really poorly and it was such a long way to travel. Hywel was really exhausted and the kids were a bit shell shocked still after witnessing all the treatment he had gone through. My brother didn’t have kids himself so wasn’t really sure what to do with us! We spent some time in Kuala Lumpur which was an amazing place, we all loved the Petronas towers and took loads of photos. 

Myself (Cathy), Elliott and Adam on the Sky Bridge, Petronas Towers.

Christmas came and went and in January 2008 Hywel tried to return to work. He struggled; his vocal chords were badly affected by his treatment, which meant not only was it hard to make himself heard, he also expelled so much air when speaking that he used as much energy to speak as you or I would to shout. He was exhausted and even reducing to part time work was too much for him and he was signed off by his Doctor in April 2008, retiring on ill health grounds in February 2009.

Hywel is an only child and both his parents were in their eighties when Hywel was diagnosed with cancer. They found it hard to accept that Hywel had cancer and weren’t really that aware of his treatment, as they were too frail to travel the ten miles from their house to ours. Hywel’s Dad had a nasty fall in October 2008. He was taken into hospital and didn’t come home again; he died in May 2009. Hywel’s Mum is also an only child and relied heavily on us for support. After Hywel’s Dad died we had to do everything for her as she had been sheltered by Hywel’s father all her life and could not cope with making decisions or managing her finances. It was an intense time with phone calls about the simplest of things three or four times a day and visits every other day to make sure she was eating and to offer reassurance. This gradually eased off after a few months as we tried to encourage her independence and she started to enjoy going out more and doing more for herself. She fell and broke her hip in December 2009 and lost a lot of mobility and the new found independence, so needs a fair bit of support from us still.

The Petronas Towers at night.

Financially things were quite tough for us as Hywel hadn’t been teaching very long so he didn’t have much of a pension. The small lump sum he was able to access was handy however. We had some advice from Tenovus, a Welsh cancer charity, about finances and they helped us to fill in all the paperwork needed to claim some government support. We rejigged a few things and managed fairly well.

Hywel found adjusting to being retired quite difficult, he told me he felt like he was on the scrap heap and very alone at times. He tried out a few different hobbies, and we bought a mad Cocker Spaniel called Freddie in August 2008! Freddie was good for Hywel, he got him out of the house pretty much every day. In January 2009 Tenovus asked Hywel if he would be prepared to share some of his experiences of cancer and what Tenovus had done to help him. Hywel’s photo was in the paper along with an article about him and during 2009 he was asked to talk on the radio in English and Welsh and we were also filmed for a news article about heating costs for cancer patients. Then in January 2010 Hywel was asked if he and I would be interested in taking part in a pilot project setting up a choir made up of cancer patients, people living with cancer and their carers, families, and friends in Pontypridd. Hywel had recieved some treatment to help strengthen his vocal chord, but wasn’t able to sing very well; we were assured it wouldn’t be a problem as the choir was more about getting people together and giving them something positive to do. The choir was a great success and when we went to the first practice we were told a BBC documentary was being made about setting up the choir. It was a very positive and exciting time for us, it gave us a reason to go out every Thursday and be part of a community again - Hywel having cancer had made us both feel quite isolated. The choir has performed at some fantastic events and we have met some amazing people through being involved. Hywel was also asked to speak at some of these events. He has been a real inspiration to others and has helped raise awareness about the work of Tenovus. I am incredibly proud of and full of admiration for him.

Yoga and Meditation Classes

Dear Friends in Yoga,
As we move into the fall season, what better time to begin a process of self-renewal, self-reflection and self-discovery.  Shands yoga and meditation classes provide an excellent opportunity to support your health and lift your spirits.  For more information about any of these offerings, feel free to contact me. 

Also, please note that the Yoga of Awareness for Cancer Program, scheduled to begin next Tuesday, September 27th, still has openings if you or someone you know is interested in attending.

Warmest regards,
Tammy

Chair Yoga for Wellness
Mondays 4:00pm - 4:45pm (Begins Oct 3)
in the Criser Cancer Resource Center, South Tower, 1st floor
While appropriate for all, this restorative chair yoga class is dedicated to those living with health conditions who desire restorative movement, breathing exercises and guided relaxation.  Free.

Community Yoga
Mondays 5:15pm - 6:30pm
in the Criser Cancer Resource Center, South Tower, 1st floor
This is a longer community class that includes meditative flow, toning postures, breathing exercises and guided relaxation. Cost is $5.

8-Week Yoga of Awareness for Cancer Program
Tuesdays 5:30pm - 7:30pm  (Sept 27 - Nov 15, must pre-register)
in the Criser Cancer Resource Center, South Tower, 1st floor
Appropriate for anyone desiring to live with greater skill & ease.  Cost is $75.

Beginning Meditation
Tuesdays & Thursdays 3:30pm - 4:00pm
in the Sanctuaries of Silence and Peace, South Tower 2nd floor
Guided meditation to support your peace of mind and happiness.  Free.

Lunchtime Yoga for Staff
Thursdays 12:00pm - 1:00pm
in the Serenity Room, North Tower, 7th floor, rm #7502
Flow in and out of this class as time permits, and enjoy an opportunity to relax your mind, restore your body and renew your well-being. Offered to all hospital staff.

Yoga for All
Thursdays 4:00pm - 5:00pm 
in the Criser Cancer Resource Center, South Tower, 1st floor
Join us for an hour of gentle stretching, adaptive postures and breathing exercises designed to tone the body and lift the spirits. This class is suitable for patients, family, staff and members of the community.  Free.

Tammy L. Bernard, M.Ed., RYT
Shands Arts in Medicine
Yoga and Meditation Instructor352-733-0880

Need Space for Kids Kicking Cancer Classes

We are looking for a space to have our out-patient Kids Kicking Cancer classes, which is a free program for kids in pain in the Gainesville area.  The program should get substantial media/PSA exposure, so we thought a local business might like to offer space after hours as an in-kind donation.

We are looking for a carpeted space of at least 500 sq ft, preferably with easy RTS access, once per week, around the 6-7 p.m. time.  Thus, most meeting spaces with easily moveable chairs/tables would work.

If anyone knows of some good options, please contact me.

Here are some links for more info on Kids Kicking Cancer.

http://powerpeacepurpose.com/stress-switch/

http://www.cambio.com/shows/cambio-cares/cambio-cares-gerard-butler-jessica-biel-and-friends-help-kids-kick-cancer

Thanks!!!

Be peace,

matthew tenney
Executive Director
True Freedom Foundation, Inc.
www.truefreedomfoundation.org
813.944.7135

For my friends

This morning, I realized that I�ve begun to recognize the signs. There�s the fight, the expression of it, the spirit. Then submission to treatment, whatever works�how ever one�s body is ravaged and
rebuilt it doesn�t matter, as long as there is still life. Then silence, with an occasional note to friends and family that s/he is still here with us, still fighting. More silence. Perhaps only one week passes, or two, or maybe a month. I�ll check in on his or her Facebook page if there is one. I�ll see comments from friends and family on the wall, words of encouragement and support. But there will be nothing from my friend, who�s been fighting the most awful of fights. Then, all of a sudden, I�ll get the email from Karine at Young Adult Cancer Canada (YACC). The subject line always tells the receivers to open the email when we have some quiet time, and we all know. Another one of us has passed.

It�s not a club that you ever want to be in, but if you must, belonging to this club will be life-changing. Of the 20 of us cancer survivors and patients who attended YACC�s Retreat Yourself 2009, four have passed away�one in five of my cohort in the last two years since the retreat.

Emilee, age 32.
Ann-Marie, age 25.
Caio, age 23.
Earl, age 23.

When you are part of a group that spends some concentrated time together, you walk away with memories of the fun stuff that happened in that short time, like sitting around the camp fire telling funny stories or the talent show where we all made asses of ourselves and have the pictures to prove it. You carry the memories of the bonding and confiding about your innermost thoughts and fears in a safe space. You don�t think that the person sitting beside you during meditation or circle is going to die soon. You think that everyone�s made it, everyone�s here, and everyone�s going to beat the odds and be here for a very long time.

But of course, that�s not true. It hasn�t been true in the two years since I attended the retreat. I have the good memories, and I cherish those deeply. But when I wake up to one of Karine�s emails, I have fear�who�s next? Will it be me? Will it be someone I love? . . . I have sadness because look, this is what is particularly sad about young adults getting cancer�they are young, they are just starting their lives. And now, when one of them dies, all that potential, all that spirit and drive�gone.

And I have survivor�s guilt, big-time. I am sitting here with my infant daughter, watching her play and kick and learn how to grab. She sees me sitting beside her, and she beams with joy and love. I tell her that her older brother and sister will be home from school later on, and we�ll all play with her. I know that when my kids come home, we are going to look at craft books and make some felt toys. And I told them at breakfast this morning that I�m going to teach them how to use my sewing machine by making cloth napkins. I get to have this life. But my friends who have passed, it�s over for them. And their loved ones�their life partners and parents and siblings�they will never experience life with them again. They must face a new reality of how to live without. Thinking of that kind of loss brings me full-circle back to the fear I first experience when I see an email from Karine in my inbox.

Having had cancer and having friends pass away from cancer, I cannot stress enough how fragile life is�and how that fragility is to be understood and appreciated. Most people my age aren�t faced with their mortality, and they are blessed to not think about dying until an older person in their family passes, probably when it is �their time� to do so. This is one of the reasons I often compare cancer diagnosis and treatment to going off to war. You don�t know how you will change, how you will come back, or even if you will come back. You don�t know how many friends you will see fall. But you know that if you survive, you will never think of life in the same way ever again.


- Posted using BlogPress from my iPad

Location:Vancouver

Radiotherapy: Round One

This post is the third 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. This piece also includes some photographs for the first time; I think their inclusion is important to convey my experiences through images as well as words.

Hywel

I was so relieved when my consultant said I would be having radiotherapy and not chemotherapy. For some reason I thought I would be getting off lightly. What harm can a few zaps do lying on a table for twenty seconds? How wrong I was. His parting words to me were, “Radiotherapy isn’t a walk in the park.” No truer words have been spoken.

Prepped ready for the very first session

Firstly a mask was fitted, which after a radical neck dissection was both uncomfortable and painful. My voice sounded like a helium ingest-er after my op, which left me with a paralysed vocal chord. Each time I spoke everyone was in fits of laughter, including myself. Then I had to have all this muck applied to my face so a mould could be formed ready for the mask which would keep my head perfectly still during zapping. At the time it seemed quite cool – and thought maybe I would have some use for it in a future science fiction walk on part!

My radiotherapy was thirty sessions over a six week period during the summer of 2007. I found the process extremely boring but I did not suffer unduly for the first month, and was most annoyed that I couldn’t take my nine year old away on holiday. Toward the end of the thirty sessions, I found I had lost a patch of hair at the back of my head. It didn’t happen gradually, rather it was a ‘there one minute gone the next' moment. One of the nurses pointed out I “wouldn’t be able to play Father Christmas again” after my treatment. I didn’t know what she meant at the time, but the reality is that losing your hair after chemo is temporary, but after my powerful radiotherapy sessions the hair loss at the back of my head and half my face was permanent. If I don’t shave for a few days now I have a perfect line down the middle of my face. One half is full of stubble and the other is perfectly smooth! I’ve now gotten used to semi-shaving and don’t think twice about it.

At the end of my treatment my face had reddened quite a bit and over the next few days gradually worsened. The full horror of my radiotherapy was about to be unleashed. My skin started to disintegrate in front of my eyes. I caught an infection and when my wife was applying bandages on the infected area they just seeped into my body and had to be peeled back out again the following morning. The pain was excruciating. When I walked back into the hospital I looked like something out of a horror movie. My head was bathed in bandages and I was dripping blood everywhere. I was straight on a course of antibiotics and had to be visited by a district nurse every day for three weeks to apply special dressings on the area. At that time, if I heard complaints about ‘man flu’ one more time I was ready to deck someone! Those immortal words came back to haunt me. Radiotherapy was indeed “not a walk in the park.”

About five days after treatment

Cathy 

After Hywel’s neck dissection, the jury was out as to what type of cancer he had. His salivary gland was clear, the tumour that had been removed was declared as secondary, and quite a few lymph nodes were affected. The cancer was poorly differentiated, even a special PET scan didn’t reveal the location of the primary tumour. After seeking the advice of another pathology specialist they decided that the cancer was squamous cell carcinoma - a type of skin cancer, and that the next course of treatment should be radiotherapy. We were relieved that Hywel would not be having chemotherapy although we were warned that radiotherapy was not “a walk in the park”.

The first thing that happened was for Hywel to be fitted with a mask for the radiotherapy. This would take place at Velindre Cancer Centre. Our first visit to Velindre was a revelation to us; it was a really busy, positive feeling place. All the staff were warm and welcoming and it was not the scary place I thought it would be. It was a whole new world going on beneath the surface of the one I had been living in, which I knew nothing about.

The mask fitting was hilarious - maybe revealing a bit of hysteria creeping in after all the tension and worry we had gone through. Hywel’s voice had changed from the sexy gravelly voiceover voice to that of a school girl, with a school girl giggle to match! His laugh was infectious and the poor nurses in the mask fitting area were in hysterics too. We all struggled to stop as Hywel had to stay still whilst they bandaged his head like a Mummy and put a plaster of Paris type mixture over that. Luckily it dried really quickly so he didn’t have to lie still for too long.

The final mask was made of clear perspex and was the shape of his whole head, with holes for his nostrils and mouth. If it had been painted black he would have looked like Darth Vader!

The radiotherapy was to be every day for 6 weeks. The doctors had signed me off work with stress whilst Hywel had been going through his op and we were waiting for results. I’d been back at work for about a month at this point, and was worried about taking more time off. I took some leave and my boss agreed that I could have a laptop so that I could sometimes work from home around Hywel’s appointments. Unfortunately all the treatment coincided with the school holidays so we weren’t able to go away anywhere with the two youngest kids, and Adam who was 15 at the time had to look after Elliott who was 8, a fair bit whilst the treatment was going on. Elliott came to the radiotherapy appointments a couple of times, bribed by a cup of tea and a kit-kat from the hospital’s WRVS cafe!

The sessions were very quick as long as the machines didn’t break down! Hywel went through the treatment quite smoothly. His skin went pink, then red and he lost his facial hair on one side of his face. He also lost a fairly large patch of hair at the back of his head, behind his ear. It was only at the end of the treatment that his skin started to blister. The nurses gave me some dressings and told me to bathe the area, showing me how to change Hywel’s dressings. “Any problems just give us a ring” they said. It was horrendous. Hywel woke up each morning with dressings stuck to his neck and shoulder. I was trying to bathe the area and Hywel was squealing with the pain. I rang the radiotherapy nurses and they told me Hywel should take painkillers before we changed the dressings. We tried this for the next two days but the pain was excruciating for Hywel. He skin was coming away in chunks and he was bleeding. We would both be crying; Hywel from the pain, and me because I was inflicting so much pain on him. I rang the nurses again and told them I was certain I wasn’t dressing the wounds properly. They said they were sure I was but if we wanted to pop in they would have a look.

Hywel looked a sight, swathed in bandages with blood and bits dropping off his ear. It must have scared the people in the waiting room waiting to go in for their treatment! The nurses were a bit shocked at the state of him. They apologised and told me no wonder I’d been worried. They arranged for the district nurses to call and do the dressings and put Hywel on antibiotics as he had an infection. The district nurses ended up getting Morriston burns unit to send them special dressings and came for nearly 3 weeks until the wounds started to heal. Radiotherapy had been a marathon, not a walk in the park!

More post-treatment

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