Providing information and support for head and neck cancer patients, their carers, relatives and friends.
THE NATIONAL HEAD & NECK CANCER SUPPORT GROUP
Staying Alive is everything – Nick’s cancer adventure
Five years’ on
Back in 2003 I was concerned whether an inflamed gland in my neck was a mere infection or worse! – then I realised it was steadily increasing in size. It was not noticeable to others as I was ‘well-covered’ flesh-wise in those days of excessive business travel and hospitality!. My biggest regret was taking a ‘bloke's attitude thinking “Ah – it will go – no need to go to the GP” I finally visited the GP and he took a blood test, and it was then that I convinced myself of the worst, and started to envisage myself in a hospice within months!
The consultation to which I was referred at the Royal Berks ENT clinic confirmed my diagnosis of cancer – but that it was operable. That was probably better than hearing I had won the lottery at that time – even though I had been out of work through redundancy for six months.
Living alone, divorced some years previously, this period was very stressful for me, especially as I was not sharing my distress – until I knew the actual diagnosis. My ex-wife (Rosemary, with whom I had continued to stay good friends) and children lived within 2 miles of me, and the time came to admit to the bad news. I fully expected to be chastised by my children for my past drinking and smoking (although I had quit smoking some 2 years earlier – too late?}.
However – they all, including Rosemary’s new husband, were completely sympathetic and supportive. Rosemary, in fact then committed to accompany me to all consultations.
How welcome and important this support was to me cannot be put into words – SUPPORT of course is the underlying theme of my story, and the reason d' être of Heads2gether and the Macmillan nursing organisation.
May 2004 witnessed me attending my ‘interview’ at the Radcliffe Infirmary (now defunct) to be assessed by the A-Team (or should it be O-team, for oncology?) including such wonderful people as Mr Rogan Corbridge, Mr Andy Pay and Dr Alice Freebairn amongst others. I do have a penchant towards humour in times of adversity making light of the situation, and I recall Dr Freebairn concluding their ‘inspection’ with words along the lines of “ Well, Nick – we have decided you’re worth saving ” – and they did, bless them all.
I have to say the manner in which all the medical staff likely to be involved with my surgery and treatment were simultaneously assembled to avoid several separate consultations was an excellent idea, and the open frank discussion of my impending treatment was inspiring and to me comforting whilst instilling trust with the team.
At this point, appreciation is due:- Second to none! I sincerely commend the whole NHS Team involved for their dedication, professionalism, efficiency – oh, and tolerance of me and my foibles (I apologise to the RI nurses!) .
Although there was ‘trauma’ ahead of me, I felt incredibly relaxed, positive and confident in the potential outcome. Now - POSITIVE – that’s another strong theme throughout my treatment and in fact continues to feature in my outlook on life generally.
Apart from when in intensive care, not a day passed without one of my children or Rosemary visiting from Wokingham, and being a committee member of a (over-45’s) Singles Social Club (), I received much support from the members - it was truly wonderful. I was even visited by a best mate who came over from where he lived in Lanzarote, mainly to see me – and I couldn’t even speak to him as I had a tracheotomy as ‘decorative neck jewellery’ .
At one stage I recall, the Sister holding several envelopes and looking at the numerous cards already around my curtain rail saying “Just WHO are you ? Are you a star or something – I have never seen so many cards !!! ??” It wasn’t modesty that stopped me answering
The period between surgery and radiotherapy was absolutely critical. The NHS team were VERY concerned that I would be returning to my single existence alone – a concern for my welfare, not the necessary NHS resource. Rosemary’s husband was adamant (or was it Adam Ant? – no, he’s Richard!) that I go and live with them for my convalescence. Such an offer could not be refused.
That was such a relief and blessing to me (and the NHS team!), and once well enough to, I returned home to fill the fridge with all the foods we should never eat, to gorge on ice cream, cream and chocolate – to hell with the figure and complexion ! – to build up for the period throughout and subsequent to radiotherapy, when (allegedly) “you may not feel like eating”
Oh boy – that proved true !!
Armed still with my new attitude of ‘POSITIVENESS’ I went through the interesting preparation for radiotherapy, of acting as a model for the 2004 Halloween face masks, to embark upon the subsequent “zapping” treatment at the Royal Berks. I approached the 30 days treatment over six weeks by looking forward positively to day 16 – when all of a sudden I was past half-way and on the home run .
I have to admit, being an engineer from birth (that’s with a spanner in my mouth !), I was so fascinated and impressed with the meticulous accuracy and attention of the treatment – treatment without which simply doesn’t bear thinking about.
Throughout the radiotherapy I drove and although still out of work, was pretty much self-supporting with the travel and treatment absorbing most of the days. I was able to continue with some Singles Club social events until the latter stages – bless them for their tolerance, caring and support. I managed to finish Dan Brown’s Angels & Demons and the Da Vinci Code whilst waiting for the daily ‘zaps’.
Support, support and more support
During the time towards the end of the radiotherapy into the healing period I was ‘screaming out’ for the kind of support that Heads2gether can now offer to supplement the wonderful Macmillan nursing. Apart from the family support I felt lonely, ugly, sore and very sad for myself. To have access at that time to like-minded fellow survivors of similar treatment would have been wonderfully reassuring.
In the few weeks after radiotherapy, coming to terms with reduced saliva, slowly returning taste and general healing, I was at best anxious. My positive outlook manifested itself hiding the true way I felt at the time, whilst trying to become self-sufficient again, because I felt I had used up my share of care from so many kind people.
For a time in my case, by the way, there was no (head & neck) Macmillan nurse at Royal Berks, and Heads2gether had yet to exist.
WE are all Heads2gether
I remember at the very first Heads2gether meeting I witnessed (now) fellow members literally displaying relief, when told by patients of similar treatment:-
“I have been through that – you will look/be as good as me again soon “, or
“I got through that stage by…….”
That’s what Heads2gether is all about – I see the benefits both through taking part and witnessing the comfort and reassurance we can offer others about to be, or already on, their journey to recovery.
I, in common with other current members have come through this transitory period of life, with perhaps a new focus that ‘staying alive is everything’. Surviving cancer does/will change your perspective on everything. It’s a second chance, and with the support of an organisation of kindred folk such as Heads2gether, that second chance is far more easily achievable.
I was too early for Heads2gether, but others and their partners, can now benefit from the friendliness and professionalism of their SUPPORT to complement your POSITIVENESS.