Hello my name is Tricia, I live in Carshalton, Surrey with my partner Nick and son Christopher and I was diagnosed with SCC of the nasal septum in Aug 2005.

In July I went to my GP complaining of what I thought was hay fever, after a few visits and the sprays not working he sent me to an ENT specialist. I was referred for a biopsy and at that stage I knew I was in trouble.  After a few days I was telephoned and asked to attend the ENT clinic at St Georges Hospital, Tooting. I went with the lovely partner and walked into a room with a row of men and women (this I now know is called a multidisciplinary team) I heard the word cancer and went into a blackout, my world fell apart.

Eventually I came round and thought I was actually going to pass out.  This was the very worst experience I had ever had.  They said I would have to return the following week for a scan to see if it had spread anywhere, and also to ascertain if this was a primary cancer.  I said I had to have the scan that day and that I could not wait a whole week and then another whole week for the result.  I had the scan there and then and a week later returned.

The scan showed the nasal cancer was the primary site and my body was clear.  I gave up smoking there and then.  They explained that I had a 70% chance of a cure and that their intention was to cure this cancer.  I immediately put myself into the 30% group in my head and thought I was sure to die, which was sheer horror.  They explained that they would de-bulk the tumour and that I would be in hospital for a few days.  They said I would receive 6 weeks of radiation and 4 days of chemotherapy.

It's been a long road since then. I had surgery to "debulk" the tumour.  They didn't manage to obtain clear margins, it's such a small space inside the nose, they removed all of my septum as the tumour had eaten into this.  They gained entry into my nasal cavity by cutting from the eyebrow down beside the nose and under the nostril.  They then flapped this open.  A neat job.  To obtain clear margins they would have probably had to take some of my nose and they avoided doing this.

I have no complaints whatsoever about my surgery but the hospital is another story.  The morning I was being admitted was like a cattle market.  All of us patients who were waiting to be admitted were in a small room at about 8 am.  At about 9 am a nurse came in calling names and at that point I got worried.  They were calling patients with respective illnesses and they seemed to have got them crossed over, i.e. patient not matching illness.

Eventually I was called into another room and someone was saying "they're waiting for her in theatre" and then a man asked me a few questions like name, DOB etc and then said I was ready to go to theatre.  And I said haven't I got to have my blood pressure taken and he said "haven't you had that done"?  There was something else they forgot as well and I can't remember, it was such chaos.  People were coming in and out of this room the whole time.  Now he couldn't find the equipment to do the BP and another piece of equipment, I think it was to listen to my heart.  I was now getting really worried and asked to speak to someone.  A lady nurse came in and I said I am not exactly filled with confidence, as the way I am being looked after seems very haphazard.  She said very brusquely "if you want to cancel this operation then say so now as were very busy and we will reschedule for who knows when".  I said no I didn't want to cancel but that I was worried and scared.  She then vanished.  About 3 or 4 times I could hear someone shouting 'They're waiting for her in theatre'

Eventually we were told where to go, to another part of the hospital and myself and my partner walked about 5-10 mins to the theatre.  When I got there the anaesthetist was waiting and I remember saying - It's been such confusion all morning does everyone here know what they're doing? He assured me they did.  So off to sleep I went.

I woke up being wheeled into a ward.  Now the real fun began. They were about to tip me into a bed and another patient said, "O no not in that bed it hasn't been changed from the last patient" the nurse said it has, put her in and another nurse piped up, no that bed hasn't been changed.  More chaos, boy did I want to be home.  I was in hospital for only 2 days as I chose to leave.  In those 2 days I had a bowl of soup and one meal, which was inedible.  I had some cups of tea.  I was on morphine and every time I woke I missed the meal.  I left because I was so hungry.  The nurses were agency staff and one nurse and I fell out.  She was putting in a cannula into my arm and it hurt so much and I said so and she said gruffly "it doesn't hurt" and we had an argument over whether it hurt or not.  The next day my arm was quite black and a doctor said it was in wrong!  And all night it hurt me.  Anyway the staff were awful.  Absolutely incapable of any TLC.  I wondered whether they knew what I was even in for.  Because I got the impression they thought it was something really minor and I was insignificant.  I would NEVER go into that hospital again.

They said I would have 6 weeks of radiotherapy directed at the area to clean up any remaining cells and  I would have chemotherapy to increase my chances, this is called systemic treatment to go through the whole body and kill any cancer cells.  I had to have a few appointments to have a Perspex mask made.  This mask would protect all other areas of my head and allow the radiotherapy to aim directly at the area of my nose.  I had a beam
directly onto my nose and then a beam from the left and a beam from the right.  The mask fitted extremely tightly over my head and then was clamped down onto the table.  This stopped me from moving even a millimetre, that's how important it was for the beam to be exactly accurate in the area.  They then inserted a mouth shield through the mouth opening, this was to protect my tongue.  This I had trouble with as I kept feeling as though I was going to"gag".  The mask wasn't very nice either as it was very hot.  But do you know what , such a small price to pay to be cured eventually.   This part of my treatment was all carried out at the Royal Marsden Hospital in Belmont.  And I cannot praise them enough, they were truly marvellous.  Even with me and I am a person who doesn't do things quietly.  I moaned and groaned a lot of the time and sometimes said I can't do this and I can't do that like when I was being fitted for the mask I had to make them stop and have a diazepam and hold up all their appointment system, they didn't complain at all, they were just so kind and gentle with me. 

I have been left with weepy eyes, which hopefully in April will be fixed, I am very deaf in my right ear and I am getting a hearing device until my hearing returns, I can't smell or taste most foods, I am told this may return and of course I am tired a lot of the time.  I am not working and very bored rattling around the house.  I desperately need something to do, but not too much as I do get tired.  Considering I had major surgery my nose looks remarkably good.  Even with all the side effects, small price to pay for my life.  I do worry about it coming back, as I have read about this cancer and that can happen, but I am a glass half empty person and I have to change the way I think.  I know this is very important and I have to learn not to think about things that haven't happened and probably won't and deal with things when they do happen and meanwhile live my life to the full.  It's not easy but hopefully a day at a time I will do it.

I cannot praise the Royal Marsden Hospital enough.  I am so very lucky to be living within a mile of that hospital, they are fantastic.  It has been quite a journey this past 6 months but I was told it would get better daily and it has.  I have found it's all to do with attitude, if my attitude is positive I do feel better and very fortunate that my cancer was caught relatively early.  Some have not been so lucky.  I go once a month to that hospital!  St Georges - that's where the team meets and I have to go as monthly check ups are vital, after one year it's every two months and so on for five years.  So I am in remission.  But aren't we all born in remission anyway, as we're all going to die!

Anyway that's a short version of my experience.  I would luv to hear from anyone with their experience of head and neck cancer and especially anyone diagnosed with SCC of the nasal septum.  Though I am not hopeful of that, as I know this is a very rare cancer.  Thanks for reading.

Tricia