I am truly hoping this is the final chapter in many respects, as it will mean that my remission continues. I know there will be check ups for another 3-4 years to check this is the case, monitor and support. There is always the possibility of some of the later long-term side effects taking hold too. I know of someone who has to undergo further surgery due to osteoradionecrosis (death of the bone due to radiotherapy), others whose trismus has worsened, etc. There was a long list of long-term risk factors that I was taken through prior to consenting to the radiotherapy but is all honesty I felt the alternative would have been a pretty awful, painful end.
As hinted at previously I will be forever grateful to my changed perspective on life as a result of having gone through this, there is an unusual sense of empowerment from having faced my lifelong nemesis and defeated it (for this round anyhow). I actually embrace the scar on my neck, initially I thought I would feel like I had to cover it up, but its part of me, part of survival. The smallest things make me happy, a deep soul filling happy; the rays of light through the trees on a morning walk, sunsets and sunrises, getting back to gardening, growing and cooking my own food, laughter, hugs, friendship and of course my bum and tail wagging shadow. The big things are my family, still being here to spend time with them, especially my husband; my granddaughter’s hugs, kisses and hearing ‘Grandma, I love you’, watching my nephews grow up into the fine young men they are and seeing my step-daughter settle down, there is a wedding planned for next year. Without my own determination and resolution that I wasn’t well, the wonderful ENT doctor who wasn’t happy with my symptoms, and the amazing MDT at New Cross and the completely unwavering support of especially my husband, my family, friends, forum friends and colleagues I wouldn’t be here typing this. Before cancer I often felt like an outlier, never really part of anything. Quite often that suited me, not having hundreds of friends, but carrying the few extremely dear friends with me through life. You don’t face and survive cancer alone though, which has made me feel much more part of a bigger community, part of something. This is one of the factors that has driven me to continue writing, to feel part of something and outstretch a hand to others heading down this path. Complete strangers listened to my fears on the Macmillan forum, reassured me, advised me and created a vital safe place to scream, panic and cope. Now its my turn to payback, be there for others. With work I can’t do that as much as I would like, but whenever able I will always reach out and support. That is why I wanted to turn this blog into a book, to try and support others going through this hell on earth. Hopefully, the future sees me actually complete it, publish it and give the proceeds back to the charities and groups who supported me.
Of course, the future has been dented a little by the rheumatoid arthritis diagnosis. I am still struggling with that, my hands and feet feel constantly crushed. The rapid weight loss from cancer, along with the physical limitations whilst the RA was diagnosed have led to quite a lot of muscle wastage. I definitely don’t feel as strong as I used to and have taken a couple of big falls recently. This has knocked my confidence a little. I fear that unlike the radiotherapy fatigue, the RA fatigue won’t improve. This means that we have seriously discussed my early retirement, particularly frustrating as despite the cancer I have completed and achieved well in my senior leaders qualification to become a deputy head. I know I could do the job, and do it well, but at what cost to my health and relationships? I keep hoping the doctors can drop on the right medication to slow down the way this disease attacks the body. I am very frustrated that this seems to be constraining my post-cancer enthusiasm to go for it and life the fullest life possible.
I honestly hope that the HPV vaccination that has been given to young people in the UK since 2008 means that the current rise in people of my age being diagnosed with head and neck cancer soon recedes. There are also trials underway to see if less harsh treatment can put these cancers into remission, leading to fewer long-term side effects. In the meantime, there needs to be much greater awareness of it, amongst GPs and the wider population. Most women I know attend their smear tests, check their boobs on the 1st on the month (or whenever their cycle says is best), there are screening programs for prostate cancer and men are more knowledgeable about checking for lumps, I also think most people would see their GP for a cough lasting more than 3 weeks or finding blood in it. And with great thanks to the sadly department Dame Deborah we all now know to ‘check your poo’. However, I have been surprised by both the number of people who have said ‘I didn’t know you could get cancer of the tonsils’ and equally those who have known someone who has had head and neck cancer. I had never seen, heard, or read any publicity about it, or the symptoms to check for. We should make more people aware of it, especially as the generation who grew up in the 80s and 90s hit the age where dormant HPV resurfaces as cancer. The signs are:
In hindsight I had five of these symptoms and didn’t even mention two when I saw doctors as I wouldn’t have connected them. If you have any of the following for three weeks insist on seeing (face to face) your GP. If you catch it in time it could literally save your life, or at the very least give better treatment options and outcomes.
(Thanks to www.theswallows.org.uk for this)
Of course, this is assuming that the NHS can cope with clearing the cancer backlog from covid. The system was struggling before the pandemic and those lives lost to cancer due to missed diagnosis or delayed or interrupted treatment really should, in my opinion, be added to the covid death toll. I remain forever grateful for how well New Cross managed the pandemic. In one of my check ups this year the doctor acknowledged that at the start of it all they really didn’t know how it was going to play out, especially given the symptoms for our types of cancer. As far as I am aware the Deansley centre didn’t have to shut and stop treating cancer patients once, the staff have my unwavering respect for that achievement, especially as this was achieved making patients feel reassured and that they had all the time in the world for them (at least, that was my experience). I had six PCR tests and could have been sent for many more whilst I was unwell before I was referred to a specialist, I knew it wasn’t covid. Covid sadly muddied the waters, put pressure on the system, staff and society.
So personally, the future is on the whole bright. I am happy to have come through this only needing minor adjustments to how I live my life. I will forever remain vigilant to the possible side effects and will not delete the hospital number from my phonebook. Daily stretches, massaging my neck and slapping on the factor 50 are nothing in the grand scheme of life. I am thankful, happy and mostly healthy. I will continue to raise funds for Macmillan and the Katherine Allport Foundation, a mere drop in the ocean though in terms of repaying my care. I will never again complain about the amount of national insurance I pay; I doubt I will ever fully repay what I have taken out in terms of my treatment. I will always support to the best of my ability any of you going through this, just reach out. Never forget, this is a very treatable form of cancer, treatment is short and deep, but it works, and life goes on. Take care, Ronnie xx.
