At a recent meeting of HANDS Cancer Support Group, we were sharing our experiences of radiotherapy – the moulding of the warm plastic to make the face-mask, being screwed down in it to a hard table so you can't move a millimetre and fear to blink, or twitch or sneeze, the point when everyone leaves the room, a metal door clangs shut and you're on your own, and the huge machine buzzes into life, beaming its rays on the spot. You feel like James Bond at the mercy of the laser beam! It can be very frightening.
One of the group described how she used meditation to help her keep calm. In a similar way, as a convinced Christian, I found it easy to trust in an old favourite promise of God “I will never leave you or forsake you”, and it became a great few minutes of prayer. The cheerful West Indian radio-therapist had chatted with me about favourite hymns, and I prayed for him and his family; for my wife Sue, sitting outside, and her mental agonies far worse than my physical ones; and I asked God to purge out all nastiness of character as the high intensity X-rays were burning out the cancer cells. Time flew! It was only a daily 5 minutes for six weeks anyway.
Then of course came the after-effects ….......
It happens less often now, thank goodness, but just occasionally I still have ‘The Dream’. I wake in a sweaty jumble of duvet and fear, not in my comfy double bed at home, with my comfy warm husband snoring gently beside me, but in a lonely, single hospital bed in intensive care, the atmosphere filled with noise, pain and confusion. The dream was so vivid, and the feeling stays with me. I know that I won’t sleep again for hours so I might as well get up and get started on writing this, my story. The middle of the night is as good a time as any, better really, as I never seem to be able to get around to it during the day!
It all seems to have started quite a long time ago. Like many people, I have always hated going to the dentist. It’s often been tempting to avoid going, but actually, probably because I have been a mum most of my adult life, so need to set a good example, I have pushed myself to go regularly. So at the start of 2012, not long after I felt a little rough patch on my upper right hand gum I had a regular check-up, and my dentist seemed to think that there was nothing to really worry about, it could be the start of gum disease, but if I took the antibiotics he prescribed, and continued with my regular teeth care regime everything would be fine. I had guess I am one of those people who always believe those in authority, and I didn’t think to worry. He didn’t ask me to come back any sooner so it was another 6 months until he saw me again.
By the time I went back in the summer of that year, the rough patch was getting bigger and a little sore. This time my Dentist said that he would like to refer me to a Gum Specialist, but that I would have to pay privately. I explained that there was no way that I could pay privately, so after much huffing, he prescribed different antibiotics, some mouth wash and finally agreed to refer me to Bournemouth hospital. He said that I should expect a long wait, that waiting lists were long and I would just have to sit it out.
By the New Year, the rough patch had turned into tooth ache proper. I was still waiting for my appointment, convinced that by now I had an abscess, and I guess anticipating at best some rather horrid root canal work, at worse losing a tooth. I had never heard of head and neck cancer, and it never occurred to me that this could be anything more sinister.
By the beginning of February I was in considerable pain, it was stopping me sleeping which in turn was having a knock on effect on everything else in my life. I finally decided to ring the hospital and see if there was any news on when I could hope to be seen. I was told that everyone was an emergency, and everyone was in pain, and that I just had to wait my turn. I couldn’t even get an answer as to whether they actually had the referral, and whether I was on any list. So I rang the Dentist surgery once again. The Dentist agreed to see me quickly as an emergency. This time he prescribed 2 different antibiotics, and set his secretary to chase up the referral. This was when it came to light that there wasn’t one. I don’t know if the Dentist never sent it the previous September, or the hospital lost it, but either way, we were back to square one.
It has to be said that now the Dentist must have found a way to fast track things because that same day I got a call with an appointment to the hospital. Once I was seen initially, and had an x-ray and some general prodding and questioning, it was only a couple of weeks before I had a CT scan and a biopsy.
Now things were getting scary. I was in a lot of pain, my face was swollen and I couldn’t chew properly. I was tired all the time, and just generally feeling rotten. I think down inside I knew something was properly wrong, but I just didn’t want to admit it and I kept on thinking that I would just have to have some teeth removed and the abscess would be all better.
In the meantime, I was busy anyway. After years of dreaming about it, my husband and I were in the process or setting up our own business. We love going out for a coffee, but so many coffee shops, both chains and independents, just don’t make decent coffee. We had previously run a coffee van, selling good coffees at festivals and events, so we were both trained and experienced baristas. Our plan was to have a coffee shop which sold lovely coffee and homemade cakes, but which also sold knitting wool, as knitting was another passion of mine. We planned to have knit and natter groups, art workshops, community groups. We hoped to make a space where people could come together, chat, eat, drink and create.
We had worked through a business plan, borrowed the money, paid a deposit to the previous owners of the premises, had the lease ready to sign and were due to open on May 1st. It was a very busy time.
On April 9th, in the afternoon I took a phone call from Poole Hospital. I was asked if I could go there the next day, and have some bloods done. Just a formality I was told, so that the consultant would have all the information he needed before I was due to see him the following week. I was told to go to Green Clinic, and ask for the paperwork to take to the bloods department. All seemed pretty straight forward.
The next day, April 10th was my birthday. I was abit fed up having to go to Poole, but at least it would get me a step nearer to being sorted. We turned up at Green Clinic, and things got abit odd. The staff didn’t seem to be expecting me. We were asked to sit down, phone calls were made and then they asked us to wait, that a Doctor would be with us as soon as they could. We waited….but with some trepidation by this stage, this all seemed abit bigger than just getting bloods done.
And so came about our first meeting with Mr Baker, my surgeon. He was so lovely and gentle in the telling of it, but all I remember was him saying something about cancerous cells, and me saying ‘Happy Birthday!’ and him turning my notes over to see my date of birth and saying, ‘oh no, it is your birthday!’
Things were abit of a blur. I remember crying, and having a desperate feeling that I needed to get away, I just had to get out of there. I needed air, and I needed to do the hardest thing I’ve ever had to do. I had phone my eldest daughter who lives in London, and my parents to tell them that I had cancer. Then when she got home from school I had to tell my youngest. It was truly awful.
I rang my friend with whom we’d arranged to go out for a birthday drink that evening, to cancel. It was her birthday too, and I didn’t want to spoil it for her. But she insisted we came out too, and sitting in the Urban Reef, watching the sea, drinking wine and talking was somehow comforting in a small way. I feel very moved that she and her husband shared that terrible day with us.
We went back to the hospital a week or so later to be told about the operation. It sounded so dreadfully scary. I really didn’t know how I would find the strength to go through it. Again, I don’t think I really took much in, but I also know that I didn’t want to know much either, I knew myself enough to know that I would get through it better just head down and getting on with it, but knowing all the ins and outs would be far worse for me. They gave us the operation date too, I couldn’t believe it, May 16th, our wedding anniversary!
Of course all our business plans were in doubt now, what we should do, should we go ahead, should we try to pull out. All the cancer care team said ‘go ahead, do it’. So we talked to the people we were buying it from and they agreed to delay things a couple of months, but said that they would not go any longer than the beginning of July.
I went through a bit of an odd time in the month I was waiting for surgery. I simple couldn’t get my head around the fact that I had cancer. Me, fit and healthy, active, busy, loud, outgoing extrovert me. Over the previous 20 years I had worked as a belly dancer, belly dance teacher, and founded and directed 2 successful dance troupes. I was carrying more weight than I should, as many woman of a certain age! However I had taught 8 or 9 dance classes a week, as well as weekend workshops and festival performances. I Knew that I was fit and I can’t deny that looks were very important to me.
Now I didn’t know what I was going to end up looking like, but it certainly wasn’t going to be the same as before. I didn’t know if I would ever dance again.
Somehow that long month my world became quite small. I didn’t really want to see anyone except Richard and my girls, I felt like I couldn’t cope with anyone else’s shock and pain. Mine was enough. I couldn’t face that ‘look’ on their faces, I couldn’t cope with their fear and anxiety. I know I pushed people away who really needed to feel they were doing something, but it was how I coped. Or almost coped.
The drive to the hospital the night before my operation was the longest ever. I was so afraid, Once ensconced, and Richard and my Daughters went home, once again someone came round to tell me everything that might go wrong, I was hard pushed not to scream and run away! So 2 days later I woke remember coming round in the intensive care unit in that fog of pain and confusion. I don’t really remember much, it’s all a blur, and, as they did warn me, some of the things I thought I saw and heard were not real, my mind is still fuzzy, and I felt like I didn’t sleep much.
After 5 days I was moved onto a ward. I remember I had contracted pneumonia was feverish and ill. I do remember I had a lovey private room though, with amazing views over Poole Harbour. I would have loved to sit and watch the sea and the boats, but unfortunately the view could only be appreciated by staff and visitors, both the bed and the chair provided for the patient were placed where it was impossible to see out. I was most frustrated!
I remember my main longing was for a cup of tea! I was a month nil by mouth in the end, the 2 weeks I was in Hospital and then 2 weeks at home. I will never forget that first cup of tea though, it was the best thing I ever drank!
The care I received in the hospital, both in ICU and on the ward was amazing. It was the small kindnesses that meant so much, the young student nurse who brought in a hair dryer to do my hair, the Doctor who turned up at lunchtime on the Bank Holiday, he only had a moment spare, but wanted to check I wasn’t too lonely because it was bank holiday and everyone else would be out enjoying themselves.
The best day in hospital was when they took my trache tube out, and I could breathe on my own and talk again. I really started to get better then and couple of days later I was allowed to go home. The luxury of my own bed!
I had a few weeks recovering, but in the mean time we had to take over our new business! Friends rallied round, the support we had was amazing. Richard had been wheeling me around in a wheel chair, but I found that I could contribute to the decoration by sitting on the floor, bum shuffeling around and painting the skirting! We took over on July 1st, and thanks to the help of so many, we changed the shop front, decorated inside, set up the stock and were up and running to have our opening day on July 4th. I have no idea to this day how we did it! I can’t deny though that it certainly took our minds off the cancer!
I was hopeful that the operation would be enough, I seemed to be recovering well and making progress, but unfortunately a few weeks later I had to have another very minor op for them to take a little more tissue out to be sure that they had got it all. I was given the news that I had to have radiotherapy. Once again we were told the side effects over and over. By the time I actually started the therapy I was so scared, it was almost impossible to find anything positive to hold on to at all.
I started Radiotherapy on the first day of the School summer holidays, and finished just 5 days before my daughter went back again. One lovely long hot summer and I missed it! I had a pretty rotten time of it. The only positive note was that I lost my appetite completely and as a consequence finally lost that extra weight!
After the radiotherapy, I was very tired. Sometimes I would be OK, and then would feel like I simply walked into a wall of exhaustion. I found it very hard to let my husband do all the work. Guilt seems to follow me around, even now when I have to take a back seat, I struggle with feeling I should be pulling my weight more.
Now 3 months on from the end of Radiotherapy, with the help of my family and friends, the people at Hands support group, Sam the counsellor in the radiotherapy department, and the medical professionals who I feel are now friends, I am slowly moving forward. I feel I am getting just a tiny bit stronger every day. I still find eating and talking difficult sometimes, and I do still get very tired. I feel half the woman I was, both is size and in energy! I get frustrated at how little I can achieve in a day, but I am finding a way to live, and although I still have lots of bad days, when the water table is so high I can cry at the least thing, I also have good days. I try every day to get out on the beach or the cliff top with my dog. I need to breathe the air and see the sea and the sky. I drink wine with my friends, I am learning what I can manage to eat out in public, without getting in too much of a pickle! I take time out on my own when things get too much. I realise that if I have a good cry in the bath I can get it out of my system without having to leak on everyone around me! For the first time, this week I actually thought I might even dance again one day. I may never be strong enough to perform again, but maybe dancing for me is good enough.
As my lovely husband Richard reminds me often when I am very low and feeling sorry for myself…
‘At least I am still alive’
Almost three years ago after returning from a business trip abroad, I suffered ear pain and a tingling sensation on my tongue. Initially, I thought it was due to the flight but as the symptoms persisted, I visited by GP. He said my ears were clear but on examination of my tongue, found an ulcer right at the back. He explained he was not a tongue specialist but as I was due to see my dentist the following week to mention it to him. My dentist immediately referred me to Poole Hospital. At the appointment, I was told I needed an urgent biopsy and this was done on the same day. The results were given to my wife and me the following week. We were in complete shock. We were told by the Head and Neck Specialist that I had tongue cancer (Squamous cell carcinoma) and would need an urgent and lengthy operation. The procedures were explained to us in detail and it was very hard to take. We had never heard of tongue cancer and the various causes. The usual causes were smoking and drinking excessively, neither of which applied to me.
After a MRI scan my operation was planned and I was told to expect an 8 -10 hour operation. It actually lasted for 14 hours! The procedures were complicated. Just before the operation I was fitted with a feeding peg in the stomach and then an ultra sound test was done on the veins in my left forearm. This was where the graft for the tongue would be taken. My wife, son and daughter saw me off to the theatre at 6.45 am. During the operation I had a third of the tongue removed, graft from my arm onto the tongue, a graft from my stomach put back on the arm, 47 lymph glands were removed from the left side of my neck.
After the operation, I was cared for in the intensive care unit where I remained for six days. I had a tracheotomy to help me breathe, fed through the night through the feeding peg, my arm, from where the graft was taken, was elevated. This was a very difficult time for me as I suffered hallucinations due to the anaesthetic and of course could not speak at this stage. I was eventually transferred to a private hospital where I remained for a further six days.
Soon after this I was told the wonderful news that I would not need radiotherapy or chemotherapy as all the lymph glands were clear of cancer, apart from the one that had travelled to just below the ear, and then I went home!
I feel very lucky that my operation was successful and I went from strength to strength when I got home. Very soon I was able to eat normally instead of pureed food and my scars started to heal. Four months later I was able to resume my work on a part time basis and gradually to full time after six months.
Many things had been in my favour.
■ I was diagnosed early, so did not need radiotherapy as the cancer had not spread further into my lymph glands
■ I had never smoked, thus helping my breathing during the operation and afterwards.
■ The skills of Mr. Ramchandani and the Head and Neck team at Poole Hospital NHS Trust who operated quickly after diagnosis.
My wife and I want to raise awareness of head and neck cancer and to stress the importance of early diagnosis. The role of the dentist, during routine checks, is important in detecting this type of cancer as guidelines state they should be checking not only your teeth but the tongue, soft tissue and neck for early signs of mouth or tongue ulcers.
It is an awful cancer
Of the head and neck
For those who have suffered it
They feel an awful wreck
The treatment though is wonderful
To give us back a life
But many feel it was not explained to them
To aid them through this strife
A loss of weight and depression
Most patients they will know
No taste within the food they eat
To swallow food is slow
Many will find a hair loss
When they are given Chemo
But when the treatment is over
Again their hair will grow
Do not be discouraged
With what you have to bear
It will be all worthwhile
To know your life is still there
Join the group called HANDS
People who understand
What we all go through
Though with a treatment so carefully planned.
'Wish this sore throat would develop into a cold or go away.'
My thoughts to a sore throat in February 2009 and again when in reoccurred about 3-4 weeks later. Whether this was the first sign of what was to come or not I will never know. However towards the end of May when chatting, I was suddenly aware of a small lump in my neck, about the size of a pea. Like most men I passed it off as something I just hadn't noticed before. Then some 3-4 weeks later I noticed it had grown considerable and after sufficient pressure from my wife and an office worker, I visited my doctor who immediately arrange for a specialist to examine me. The outcome was the lump was secondary cancer and the primary it was suggested was probably my tonsils. I was then put in the care of Mr Cox and his team. My immediate thoughts were that's a bit of luck - a quick operation to remove them and it will be a case of 'job done'.
I was amazed at the speed of the action taken by Poole Hospital NHS Foundation trust, cancer care. MRI and CT scans, numerous other tests and checks were put in place including an exploratory investigation and possible tonsillectomy. Unfortunately the latter was not possible and so a course of Chemotherapy with radiography was put in place. It was interesting to hear the course of treatment suggest was devised bearing the following in mind:
1 I have a positive attitude to life in general.
2 I am quite fit for my age.
3 Most importantly. I have never smoked.
Everything was fully explained and all anticipated reactions occurred. The first was the loss of hair and anyone knowing my hair will realise this was quite a plus. The other advantage was I didn't have to bother with shaving.
Unfortunately I didn't take to 'Chemo' too well and I had to spend time in hospital. Eating became a problem and eventually I had to be fed liquids by tube due to sever ulceration in my throat. However after my radiotherapy treatment ended in October, things slowly started to improve. I noticed my taste was returning. I became a connoisseur on soup and liquidised solids. Nevertheless I set myself a target of eating my Christmas dinner in solid form. This I achieved even if it was a little less than usual.
Since then my regular checks have proved the treatment to be successful and the knowledge of having such an efficient team at the end of the phone a most comforting element of the experience.
To anyone experiencing similar situations, I say, keep positive, listen to positive stories (disregard the negative), trust the 'real' experts and carry on with life.