The new year is well under way now and I am looking forward to seeing what it brings. I had a lovely Christmas day, for the first time since my treatment I was not feeling unwell/fatigue or coping with a broken collarbone. To celebrate, I went for a bike ride Christmans morning and a long walk in the afternoon. It was a glorious day and great to be outside. I spent the day at home, turning down invitations and did what I wanted when I wanted, baked bread, made a pizza from scatch for dinner. It was wonderful being well over this period, last year I had a stinking cold, the year before I was in a bout of severe fatigue, the two years before that was broken collarbones and the year before that completed my treatment on Christmas Eve.
So five years ago I was just beginning to start feeling better after my Radiotherapy and Chemotherapy. For those of you who don’t know from personal experience, which hopefully will be a lot of you. I had concurrent radio and chemo, which gave me 3rd degree burns in my throat and on my neck, radiotherapy makes you feel pretty awful and with the nausea and other side effects of the chemotherapy I had felt awful over Xmas and the new year. They told me that it would be between 10 days and 2 weeks until I felt a little better and several weeks to a few months until the pain from the burns subsided. They were right about the feeling better, I think it was about 12 days when I woke up in the morning after a fitful night of interupted sleep that I felt a little bit better. If I had had the energy I might have celebrated, as it was I stumbled downstairs took my pain meds, anti nausea meds and others stuff.
I think it was the day after I began feeling that I was collected by my mother and stepfather so we could go for a short walk and lunch, this was the first time I had been out to eat since the treatment began. They had checked at the pub they had choosen that there would be suitable meal for me to eat and they had a veggie risotto on the menu. I cannot remember where we walked, but think it might have been somewhere on the south downs and was nice not to be walking in a town or along the seafront for a change. During the treatment, I was out and about every day, walking to and from treatment or going for walks to pass the time, towards the end of the treatment I was only able to maintain a snails pace but with perseverence I could get to where I was going and did manage to get out with the camera few times, surprisingly some of the shots were pretty good. When we got to the pub, I dutifully took my regular pain meds and some extra oral morphine so I could eat. At this time eating was very painful and a slow difficult process. We go into order our food and discover they had just run out of the rissoto and only had a veggie lentil roast, after a bit of debate I thought I would give it a go and asked for extra gravy. After taking little bit more morphine as the meal arrived I slowly ate most of it. It hurt at times and I was having to mash the roast potatoes up with gravy but I ate a fair amount of it and did feel better for it, albeit somewhat sore. After eating I was dropped off at home absolutely exhausted and rested for the rest of the day, still feeling very rough but pleased that I had pushed myself a bit and succeeded in doing a walked and eating out, a definite step backtowards normal, or the new normal as it would turn out.
The next day, I recieved a call from someone from the cancer centre, my speach therapist who had been supporting me through my treatment. She asked how I had managed over the Xmas period, I told her it had been difficult at times but over the last couple of days I had begun to feel better. She then asked about eating, I said I had managed mostly and recounted what I had eaten the day before. There was silence at the other end of the phone and then she said words the effect of that is not possible, you should not have been able to eat that. After a detailed discussion about what I had been eating over the last few weeks, probably around 1000 calories on a good day she returned to the pub meal and asked how I did it. When a couple of days later I went in for a meeting with my Macmillan Nurse, she had heard about my meal and shared the speach therapists view that what I did was pretty amazing. I didn’t see it as that, I just saw it as me doing what I had to do.
Regular readers will remember or not that I got admitted to hospital 2 weeks into my treatment because I couldn’t keep anything down and was not eating due to the nausea and vomiting. The speach therapist nad a dietician had visited me in hospital and told me that if I did not start eating I would have to be fed through a nasogastric tube. I really didn’t want this, so forced myself all through my treatment to eat something everyday. So my diet normally consisted of a sachet of ready break in the morning, a bowl of thickish soup for lunch and an easy to chew and swallow ready meal for the evening, Sometimes I could not not face lunch so would only have two meals and be sipping water all day. I was meant to drink plenty of water and spent the day sipping water, drinking water when your mouth and throat are not working properly because of the radiotherapy is not easy, your swallow refex is impaired by the radiotherapy, your tongue does not respond properly but somehow you manage to drink, well I did. I think doing the speach therapy exercises as instructed helped. I remember I had scanned and copied them, leaving them around the house and would do them regularly throughout the day as I had been instructed. I still do them in a haphazard way, due to the damage to blood vessels, I need to keep doing them for life, so when I am wandering about tend to do them when I remember.
During my treatment, I lost around 20 to 25 kilos of weight, I was pleased to lose some of this as I had wanted to lose about 10 or so kilos prior to my diagnosis and had started working on this. I didn’t plan to lose all the weight I did and whilst I didn’t want or plan to lose it all, part of me was pleased to have lost it and I realised that I could easily slip back into my anorexic eating habits and if I am honest looking back did at times as I coped with the post cancer stresses and adjustment to retirement. Fortunately, though I kept eating and have maintained a healthy weight since my treatment, one that fluctuates by a few kilogrammes between being weighed at doctors appointments.
So here I am five years on, one final check up to go, where the odds are well in my favour. I still have lasting effects from my treatment, dry mouth, restricted neck movement, persistent pain, swallowing is not as easy as it was before, ongoing fatigue, a bit of hearing loss with tinnitus and alongside this I have the complications of a twice broken collarbone and the pain and slight loss of movement from this. Life though is good, I am one of the fortunate ones. Sure the toll on my body of the cancer treatment has left a legacy, the speach therapist was so shocked that I was still eating because due to the high dose of radiotherapy, the maximum allowable, most people are unable to swollow food and rely on thick fluids for sustanence. I often joke that I was too stupid to die because I refused to realise how serious my advanced cancer was and therefore was convinced I would survive. Who knows if this helped or not, there is some evidence though that people who hold a positive outlook do better during and after cancer treatment.
I think being so stubborn and determined that I was not going to be tube fed that I kept eating a little every day. Because of this I kept my swallow reflex, which I could have easily lost with the doseage of radiotherapy I had. Exercising everyday I think helped me, it wasn’t strenuous exercise but it was everyday and I walked up and down a few hills everyday because I had to due to where I lived, the hospital being within walking distance was also a help I think. Getting back on a bike within a month of the treatment ending was probably not such a wise thing but it helped me at the time even if I could only manage about 3 km.
Recovery was much slower than I thought, when I went of sick I had told everybody I expected to be back to work at the end of February, I was no where near ready by then and going back when I did at the beginning of June was way to early. At the time, I was comparing myself with people who had less advanced cancers or ones where the treatment was less harsh. Head and neck cancers are charaterised by the harshness of treatment and mine was the harshest it could be. I didn’t see this at the time and thought I should just get over it and be back to normal within weeks. I also didn’t understand that I would have good and bad days or good and bad weeks. I ignored that I would have to limit my activities and because of this suffered boom and bust periods of being active and totally wiped out with fatigue. 5 years on I would say I am finally better at managing my fatigue by thinking about what I take on and listening to my body and heeding the early warning signs. I don’t always get it right but am getting better at it.
So five years on what can’t I do that I did before, well working full time is one thing, in fact I am not sure I could work part time to be honest. I can do my voluntary work, I can walk most days and go for a cycle ride once or twice a week or more in better weather. I do get out and about during the day, evenings less so but I think this is now more a combination of habit and finding it difficult to hear conversations in loud noisy environments. Also to be honest, the appeal of being in loud noisy pubs had diminished before the cancer, gone were the days I would be out listening to music regularly, out in pubs often. Now I tend to go to a pub to eat and often only have a soft drink. I do drink now, and enjoy a beer or a glass of wine but this took some time to do after the treatment. Drinking beer and drinking coffee came back first, for months I didn’t even feel like it and the smell or coffee made me feel ill. Chocolate was also something I could not tolerate, but I enjoy again.
Summing up, I am in a much better place than many who have had a cancer diagnosis and treatment, many don’t make it to five years after treatment. My close colleague who had a head and neck cancer discovered a few months before me was one of those, other friend and family members have not survived 5 years. Some are seemingly more fortunate and survive for many years but then cruelly succomb to secondaries a decade or so on, whether this is my fate I don’ know. What I do know from statistics is that the odds are overwhelmingly in my favour now I have reached 5 years post treatment. So I think my belief that I am one of the fortunate ones is well founded, this is not just based on the experience of my cancer journey but my survival of a near fatal infection slightly over 20 years ago, having a career that I enjoyed, becoming a psychotherapist, being able to travel and see many wonderful places, having many wonderful and supportive friends and a family that wants the best for me. Life is very good I think, even on a slightly damp grey cloudy day as it is today, which is was 5 years ago when I was out for lunch. It was good enough for a walk then and it is today, so I will end now and head out for a walk along the seafront. I hope your day is going well and life is good for you.
paulbysea 