The long haul
It's a shame that its taken this long for me to update, after all a lot's happened since May 16th 2005 when I underwent a 9 hour operation that may yet change the course of my life.
The operation went well, hampered only in the initial weeks by a weeping cavity in the inner ear. In addition to the original tumour the consultant and his team also discovered a number of small nodules inside the ear.
I have been amazed at the amount of support from friends, colleagues and family, without whom I would never have progressed as quickly as I did. An anticipated three week stay in hospital was reduced to just over one week when they released me on the 24th May.
And whilst I have to be grateful to the NHS doctors and nurses I certainly developed patience given the hours spent waiting in the ENT outpatient department!
My only other grumble I guess is the lack of communication. I saw my consultant briefly on the third day after the operation. The most he was able to tell me was that it had been a very serious operation but that he thought they had got everything. I didn't see him again until about eight weeks after the operation when he had little to say other than that he was pleased with the progress of the ear and he might have a procedure to assist with the facial palsy after my radiotherapy treatment had ended which would be the next time he saw me, some two months away.
It was only following referral by my oncologist,to the dental hospital that I found out that my jaw had been broken during the operation and I now have two permanent plates in place, which the consultant who fitted them assures me will not go off at the airport!
I am now left with limited mouth opening and minus five perfectly good teeth as it was felt that they would not withstand the after effects of the radiotherapy treatment. Apparently following radiotherapy it is not possible for the affected teeth to be extracted normally.
Well if nothing else this whole experience is proving to be a learning curve. I just want to get through it as quickly as possible. At the time of writing I am now in my third week of radiotherapy having started on August 1st, 2005.
I have read a couple of accounts where patients said that the worst part of the procedure, for head and neck cancer patients was the preparing and fitting of the mask. I have to agree...
I had been feeling confident, creating a mask? Piece of cake. That was until they started to tape my eyelids down and pour the plaster over my face. I suddenly felt claustrophobic for the second time in my life. My parents were in the room with me and I remember Dad saying, "I saw your hand going and I knew you needed help". Thank God, I'm not embarrassed to admit I had Mum on one side and Dad on the other!
Week three of my radiotherapy and from day one I have encountered the initial symptom of nausea. Week three has introduced a lack of appetite, painful swallowing, a swore mouth, diminished taste buds and the dietitian's warning that if things don't stabilise soon I could be facing a feeding tube. In addition to which I have anti-sickness drugs and a "cocktail" of drugs to help me swallow.
All good fun, especially when she tells you that the effects could last some two weeks or more after the treatment has ended.
I really could do with hearing from people who have been through this experience. I appreciate it is not meant to be a pleasant one and I go to that cancer centre every week Monday to Friday and realise there are so many more suffering and having to deal with a great deal more than I could ever comprehend.
So many questions... Can I make it easier? What about my facial palsy? Will my sense of taste ever return or be the same? Now my ear has healed up but will my hearing return to normal? And of course the biggest question of all... Will it all have been worth it... will I get the all clear?
I have always believed in God but it has taken this for me to truly appreciate the power of prayer.
The operation went well, hampered only in the initial weeks by a weeping cavity in the inner ear. In addition to the original tumour the consultant and his team also discovered a number of small nodules inside the ear.
I have been amazed at the amount of support from friends, colleagues and family, without whom I would never have progressed as quickly as I did. An anticipated three week stay in hospital was reduced to just over one week when they released me on the 24th May.
And whilst I have to be grateful to the NHS doctors and nurses I certainly developed patience given the hours spent waiting in the ENT outpatient department!
My only other grumble I guess is the lack of communication. I saw my consultant briefly on the third day after the operation. The most he was able to tell me was that it had been a very serious operation but that he thought they had got everything. I didn't see him again until about eight weeks after the operation when he had little to say other than that he was pleased with the progress of the ear and he might have a procedure to assist with the facial palsy after my radiotherapy treatment had ended which would be the next time he saw me, some two months away.
It was only following referral by my oncologist,to the dental hospital that I found out that my jaw had been broken during the operation and I now have two permanent plates in place, which the consultant who fitted them assures me will not go off at the airport!
I am now left with limited mouth opening and minus five perfectly good teeth as it was felt that they would not withstand the after effects of the radiotherapy treatment. Apparently following radiotherapy it is not possible for the affected teeth to be extracted normally.
Well if nothing else this whole experience is proving to be a learning curve. I just want to get through it as quickly as possible. At the time of writing I am now in my third week of radiotherapy having started on August 1st, 2005.
I have read a couple of accounts where patients said that the worst part of the procedure, for head and neck cancer patients was the preparing and fitting of the mask. I have to agree...
I had been feeling confident, creating a mask? Piece of cake. That was until they started to tape my eyelids down and pour the plaster over my face. I suddenly felt claustrophobic for the second time in my life. My parents were in the room with me and I remember Dad saying, "I saw your hand going and I knew you needed help". Thank God, I'm not embarrassed to admit I had Mum on one side and Dad on the other!
Week three of my radiotherapy and from day one I have encountered the initial symptom of nausea. Week three has introduced a lack of appetite, painful swallowing, a swore mouth, diminished taste buds and the dietitian's warning that if things don't stabilise soon I could be facing a feeding tube. In addition to which I have anti-sickness drugs and a "cocktail" of drugs to help me swallow.
All good fun, especially when she tells you that the effects could last some two weeks or more after the treatment has ended.
I really could do with hearing from people who have been through this experience. I appreciate it is not meant to be a pleasant one and I go to that cancer centre every week Monday to Friday and realise there are so many more suffering and having to deal with a great deal more than I could ever comprehend.
So many questions... Can I make it easier? What about my facial palsy? Will my sense of taste ever return or be the same? Now my ear has healed up but will my hearing return to normal? And of course the biggest question of all... Will it all have been worth it... will I get the all clear?
I have always believed in God but it has taken this for me to truly appreciate the power of prayer.