In this final section of Geoff’s patient journey , Geoff has reflected on his treatment and offers some thoughts and advice for anyone who is facing a new diagnosis. These are Geoff’s experiences and thoughts and may not be true for everyone. What is right is what works for an individual. There are things which might not work for everyone, treatment might be very different for different people and everyone’s experience is different. We hope though that this has been useful for people and has offered some insight into what a difficult journey throat cancer treatment is but that recovery is common but it takes time. As with the previous articles the article is in Q and A format, with our questions and comments in bold.
Was there anything you used to help you cope with treatment?
Firstly the love and support from family and friends played a key part throughout the whole process – importantly I didn’t want any fuss over my condition and that they should just be normal with me. I didn’t want people to be constantly asking “how are you feeling today?” We agreed if I needed anything at all, I would ask.
Secondly, I was fortunate enough to have become a Reiki practitioner in May 2011, but then had found little time to put these skills into practice.Immediately after the first operation, I started (and continue to do so) daily treatments on myself and was amazed at the feeling of well being, physically mentally and spiritually.
I have been very fortunate enough throughout the treatments to have recovered quickly and of course it is possible that this may have just happened naturally. My belief though is that Reiki has made a significant difference to my life – so much so that during my treatment, I managed to do the Level 2 and 3 workshops.
It may be that whatever your personal belief system is, will be the one that works best for you. Just “believing” in itself can make all the difference, coupled with the feeling that I myself was making an important contribution to my recovery.
Thirdly, I wanted to be as physically fit as possible to cope with the operations and radiotherapy. I made daily use of the gym and cycled to build up my fitness in preparation for each stage of treatment and also as part of my recovery programme – even just managing 30 minutes in the gym felt like progress.
Finally, getting jobs done around the house and making home improvements that I hadn’t previously found time for helped to keep my mind focussed. It was a way of saying to myself “you are not going to die” and that I would be around to see the benefits of those improvements!
Was there any foods that you recommend during treatment?
Not really, other than to get a good supply of Ensure Plus. Fish seems to be the easiest food to chew and swallow during recovery. Definitely avoid spicy foods, fruit juices and make sure that your food is not served too hot as the mouth remains very sensitive.
How well did your work support you during your treatment?
Brilliant, my bosses have been very supportive and not put any pressure on me to get back to work before I am ready and fully recovered. Colleagues have constantly sent me texts of support and encouragement.
Going through the whole treatment process is a really difficult time – I am extremely lucky that I could focus all my energy on recovering from the illness and not have to worry about financial difficulties. Not many employers nowadays offer such good benefits and in their absence it would be worth anyone looking into protecting their lifestyle before they get any health issues.
How are the the long term effects of treatment affecting you?
Four months after my final session of radiotherapy, my mouth remains sore with ulcers and also dry as saliva glands have been affected during treatment. Jaw still has some swelling which seems to be caused by fluid not draining away as it would normally have done – it’s more uncomfortable than painful. Also taste is not yet back to normal, but overall general health much improved and I am living a full and normal life again.
How is the support for managing after effects of treatment? Have you been offered enough?
After the final session of radiotherapy, I was able to continue my weekly clinic reviews with the Macmillan Nurses and Speech & Swallowing Therapists. This was really important in checking that my weight had stabilised, the inflammation in my mouth and throat was normal. It gave me an opportunity to discuss how I was feeling and gave me confidence that everything I was experiencing was normal.
As I started to make progress, they offered me real encouragement and quickly agreed weekly phone calls to check progress instead of having to drive to the hospital. In particular they were quick to provide me with a range of oral gels to help improve the dry mouth problem.
What did you feel could be improved in terms of treatment/care?
Difficult to say, however what has impressed me most over the last 8 months is the caring, friendly and professional nature of the people I encountered in both private and public sectors. The degree of empathy in the many, many different people who were there to support me throughout the journey was truly amazing.
What would your message be to someone facing a diagnosis today?
In the first place, as soon as you become aware of any lump or just feel that something isn’t right, do not wait to get it checked.
Whilst learning that you might have cancer isn’t the greatest news you will ever get, an early diagnosis and hearing from your consultant that you have an excellent chance of beating the illness gives you confidence and belief for the days ahead. Don’t forget that while statistics show an increasing number of people being diagnosed with various types of cancer, an even greater percentage will go on to make a full recovery.
Whilst your specialist is the expert in these matters, remember it’s you and your body that is going to go through the treatment. Try to make sure you have good communications both ways with your specialist and the various members of the cancer support team not only to discuss what is happening and why, but also to let them know how you are feeling.
Some excellent advise from Geoff for anyone who has to face a similar treatment journey to him.