Me and Mr Sore Throat - My Cancer Journey so Far
I first made the acquaintance of Mr. Sore Throat in October 2006. I had just returned from the TUC conference where I had been making the usual number of speeches, rushing around attending fringe meetings and generally over indulging and not getting enough sleep.
Why did I call him Mr Sore Throat ? Well, I guess he was with me for a while and I came to call him that for want of anything else. Anyway, my throat looked a bit red and swollen, it wasn't as bad as some of the sore throats I had experienced as a child but pretty niggley, had an earache as well.
Went along to my GP who said that it would probably go away and that I had been talking too much as usual and probably strained it. Two weeks later my left tonsil looked very swollen and Mr. Sore Throat was still making his presence felt. Went back to the GP and got some anti-biotics, and he did go away for a week or so. But low and behold just a couple of weeks later back be came and the swelling had never gone down anyway. Back to see various GPs - more antibiotics but no change, there were times when I could feel this pressure pushing up under my nose. GPs kept saying not much to worry about and I am a busy mum with a demanding full time job so not much time to worry about it really.
At one stage they changed the tablets I was taking for high blood pressure as they thought that Mr. Sore Throat might be a side effect of that. Tonsil continued to swell and that little thing that hangs down at the back of your throat was permanently stuck to the tonsil, of and I had the earache all the time as well. Everytime they looked into my ear they said there was nothing wrong. Tried all sorts of nasal sprays and various throat sprays. GP said he didn’t think I had much to worry about.
Christmas 2006 was not too good I had started to worry a lot by this time, went back to GP in the time after Christmas but before New Year and she referred me to a consultant. In January. While I was waiting for the appointment to come through, I noticed that the tonsil was actually bleeding and that my mouth would fill up with blood so went back to GP wand was fast tracked to the consultant who's name was Mr. Irving.
This was around 20th Jan in 2007, he looked at my throat grabbed the tonsil in his hand and said that I needed to come in straight away. All very worrying, he wouldn't say what he thought it was but just that he needed to take the tonsil out, I also had to have an MRI scan. Had booked a few days away in Marrakesh with my daughter so that had to be cancelled, often wonder if I will ever see Marrakesh !
So in went me and Mr Sore Throat at the beginning of February, thinking it would just be a quick operation, but it wasn't at all straight forward and went on much longer than I had expected. Woke up to see the surgeon standing over me saying that he hadn't been able to remove it all but thought he knew what to do to sort it out, still wouldn't say whether or not it was cancer but I only had to look at the faces of all of those around him to know that it was. I remember very clearly the feeling of indescribable anger I felt at that moment when I was sent back to the ward. I seem to remember that I was very rude to one of the nurses, I always remember it as one of the worst things and moments I have ever known.
I came home the following day in agony with a very tender throat - went back the following week to the consultants clinic. All of my friends had been telling me to stop thinking the worse and that they were sure it would be Ok. Then I heard the receptionist put in a call for the Macmillan nurse who's picture was on a poster on the wall and saw her arrive and go in. I knew I was next and that she was there because of me. And yes - in I went to be told that Mr. Sore Throat was a squeamous cell carcinoma which had spread to my soft palate and was also in the glands of my neck. It was so awful - why me - I said - I gave up smoking over ten years ago, my children are both under 20 - I am all they have ...............................................why me, why me ?
The consultant said that they would do a neck dissection, remove the tonsil and the soft palate and when I woke up there would be something called an obturator in my mouth which would act as a 'bung' to fill the hole where the palate had been so that I would be able to still talk. He warned me that there was a danger that I might not be able to talk – this filled me with horror as talking is what I do to earn my living. It was a major operation, they would measure me for the obturator and make it for me over the next couple of weeks and I would go in to have all this done on February 27th and should expect to stay in for up to two weeks. I went home and told my daughter, my beautiful 19 year old daughter, I remember that I apologised to her for getting cancer. You see I lost my own mum when I was 20 to cancer and all I could think was that history was repeating itself.................................she cried a bit and then went out and bought me a nice new handbag to try to help me feel better. Didn't tell my other daughter as she was in holiday in Cuba and didn't want to ruin it for her. But it was very difficult as she keep phoning and asking what had happened. Hung on to the fact that the consultant had told me that the aim of this treatment was to cure me - can cancer be cured ?
During the time leading up to the operation quite a few things went on - had the fittings for the obturator, not very pleasant - moulds made like they do or false teeth. Had a lot of time with one of our wonderful Macmillan Head and Neck specialist nurses who did everything she could to help me feel positive, including arranging for me to meet a former patient who had had the same operation as me.
This was very helpful as I was almost at the stage of doing a runner and not going in for the surgery at all. Anyway I remember the feelings I had of doing everything for the last time - that's what it felt like. All around me everyone was being positive and telling me that it would all be OK, reminding me that I was a strong woman and a fighter etc., I had to go in the day before they were due to operate. My main fear at the time was that they had warned me that there was a chance that I would not be able to speak again. My whole livlihood depends on me being able to speak so I was filled with fear at this prospect and that fact that I kept thinking that if I couldn't work I wouldn't be able to pay the mortgage. The last meal I had the night before I went in was Kentucky Fried chicken - I remember it well and it was lovely, I have never been able to eat anything like that since, how I'd love to now.
Friends came to see me and lent me books to take into hospital with me, I knew everyone was behind me but this was something I had to do alone wasn't it. And how I remember the night before the op - the days when I was still normal and still the old me - I was felt lonelier than I had ever felt before, forsaken and quite broken, scared that I wouldn't make it through the op. However much support you get cancer is the most loneliest of diseases. At the end of the day you are there are on your own. I didn’t know if I should be finding out everything about my cancer and all the various treatments, I know loads of people who all seem to be very knowledgeable about it, but I guess unconsciously I made a decision that I would just put all my trust in the Hands of the medics. To explore it in that way on my own was to allow it into my life and give it a credibility that I wasn’t prepared to let it have. I haven’t ever read Mein Kampf but I know that Adolf Hitler was an evil man and I don’t need to give him that credibility by reading his book !
I was due to go down at 10 in the morning but it was delayed, fortunately the anesthetist gave me a good pre-med so I was very sleepy most of the time. This was a good thing as I was so frightened. The consultant had warned me that I would wake up with a lot of tubes attached, that the obturator would be in my mouth and that it was likely that I would be in intensive care for the night. I remember going in to the operating theatre at about 1pm, can't remember anything else except some vague memories of the anesthetic being put into my arm, until around nine pm that evening. I woke up somewhere, not the ward and was being looked after by two wonderful nurses, I really thought they were angels. There were tubes everywhere, two from my neck and definitely a catheter and also drips going in on both sides. Around my neck my hair was stuck to my skin with dried blood. Indescribable.
The one thing I realised was that I could speak, mouth felt really odd but I could speak and they could understand me. Those two dear woman ministered to me all night, I can hardly remember where I was and I remember other patients being wheeled at some stages after emergency surgery. They allowed my friend in to see me for a minute, I called her name and she cried and said 'You can talk'. I was completely helpless.
Throughout the night I must have been drifting in and out of sleep, the nurses talked to me and asked me questions, they were truly wonderful and so caring and helped me to come round. I remember them washing me and it was wonderful.
I was taken back to the ward sometime early the next morning, one of the nurses came with me and said that she would come in and see me later at the start of her evening shift. By this time I was starting to feel uncomfortable and as the feelings were starting to come back aware of what had happened. I felt so terrible I cried and cried, my Mac nurse came to see me and gently told me not to worry that the way I was feeling was only to be expected after such major surgery. It was also then that I realised that I had lost all feeling in the side of the neck where the surgery had been. I had a stitched wound that went from just below my ear along my neck and up the middle of my chin. Two tubes coming out of it drained into bottles. I had a bedside telephone and TV set and people phoned me which was great but also very surreal, I just didn't feel like me anymore, I really didn't know what to say to people. Had a lot of visitors and more than 100 get well cards so I knew that people cared and were thinking of me. But it was still like not being me. Made friends with two other patients in the ward, and we shared our trials and tribulations together. I remember them both with such great love and affection over those difficult first days. The nurses were wonderful and all the staff, they became my world as my world got smaller and smaller and was confined to the ward.
On the second day they let me get out of bed and removed the cathether so I was able to see myself for the first time, it was horrific and I wished I hadn't looked. I still have an uneven face - bit like having a 'tummy tuck' in your chin but it is not anything like as bad to look at now as it was then ! The days went on and tubes were removed. The main problem was pain and the fact that having the obturator in my mouth was making me retch all the time. I got by with nutritional drinks and a lot of painkillers. I did much better than was expected as I had expected to be in for 10 days but they let me go home on the 6th day. I was so glad to be going home but just the walk from the ward to my friends car was unbelievably difficult. I went home on the Sunday and then had to go back and the consultant a week later. He took out my stitches and removed my obturator for the first time. I really freaked when I saw it, like an acrylic plate the shape of the roof of my mouth with a big lump on the back of it. I had to learn how to take it in and out so that I could clean it and this had to be done every day. It took me ages to do this and my friend had to sit with me every time I did it. I cried and cried it was so horrible, for me it was like a major performance and I had to really steel myself up to do it.
At the first appointment the consultant was very pleased with the results of the surgery - the margins all around the tumour that they had taken were clear - all the tumour had been removed and only two of the neck glands had the cancer in them but it was all still contained in the pod of the gland. Everyone seemed very pleased with this, but I have never really been able to take it all in and still find it difficult to understand especially since they always qualify everything they tell you with the words 'there are no guarantees with cancer.'.........................................
I have never really delved into the prognosis for me – just too frightened, but everyone else seemed happy !
The radiotherapy and chemotherapy would start early in April. It would last for seven weeks every day and I would go into the oncology centre every Wednesday for an overnight stay to have Cisplatin. I went along and had my mask made - how weird is that ? What a very strange experience that was and, at the end of it you have a clear perspex floppy mask the shape of your face. They were very good and showed me what it would be like being bolted down with the mask in place so at least I knew what to expect. Had my little tattoo which is still there. I have always wanted a tattoo but I was thinking more along the lines of Bob Marley………………….
They would fit a PEG tube as they told me that I might have trouble eating. The
PEG. was fitted - another overnight stay in hospital, but fortunately I can't
remember much about it as it was done under anaesthetic. At this time I was
quite determined that I wouldn't be using the PEG. They all warned about what
the radiotherapy would be like, that my mouth would become dry and that there
would be a lot of phlegm, that my saliva would become very thick. I was still
convinced this wouldn't happen to me !
I even went away over Easter to a conference, my Union Annual Conference in Harrogate. It was quite like being normal for a few days. Oh yes, a funny thing happened ...... there I was one day cleaning the PEG which, at that stage, I was just flushing with water and taping to my body when the end came off ! What a palaver that was. I was not at home I was in Harrogate at the conference and it was a Saturday. I ended up in the hospital A and E department fortunately I had bought the instruction booklet that came with PEG and a very nice young doctor put it all together for me again.
Back I came and the radiotherapy and chemotherapy started. The first few weeks were fine. The worst thing about the cisplatin for me was that they had to give you litres and litres of water before it and after it, so basically you peed for England - not only that you had to measure it all. I was still managing to eat and drink and really believed that it was going to be ok. But I could see the look on the Mac nurses face which was telling me that I hadn't seen anything yet. I remember the first week I had my first chemo and actually went out partying on the Saturday night with some friends who were in Bristol attending a TUC conference, however this was not the way it was going to be for long....................................................................................
By the second week my tongue had started to get sore and I was told that this was due to radiotherapy burns and I also had thrush in my mouth, i was given medication for that but it used to sting a lot so found it difficult to use. The tiredness started as well, most of the time I went to the oncology centre the appointments ran smoothly but there were always those days when one of machines was out of action and you ended up waiting a lot longer.
I was locked down under my mask and they would do these funny measuring exercises and call out figures to each other, I remember thinking how skillful they all were. Then they would go and leave you alone while the treatment happened sometimes, depending on which phase I was in the table would move around, all very futuristic. Once a week I would be an in-patient having my chemo and there was always problems with the machines they put the chemo through, if you moved your arm sometimes it would start bleeping and then you would have to be attached to it while you were having your RT as well, but I guess we get through these things. I found it difficult to be an in-patient because seeing everyone else in there really brought home to me the awfulness of this horrible disease called cancer. There were other people there who were much more ill than me and it brought it home about what might happen. One day they put me into a room of my own instead of the bays and the bed had one of those ripple mattresses. All I could remember was when my dad had died of lung cancer and they had brought round one of those for his final days. I cried and cried alone in that room attached to machine. I used to tell my friends not to come and visit me because it was those times when I got really bad.
There were wonderful staff there though and they were so understanding. I can remember being able to eat the food too at the beginning, they used to bring round soup and they had jellies in the fridge so there was a time when I could eat ! However by about the fourth week I had started to use my PEG as my mouth and throat were just so sore.
By the time I was also very tired, sometimes I would nod off while waiting for my RT, other times I would just come home after my treatment and go to bed. I got the sky tv piped into my bedroom and spent hours and hours watching a programme called 'A Place in the Sun'. My poor dog who uses the signal of me going to bed to go to sleep in his basket at the top of the stairs, got very confused and spent a lot of time sleeping as well. I read lots of books too although couldn't concentrate on anything heavy so just treated myself to lots of very lightweight novels !
I had been warned about the effects on your saliva but not really about the
phlegm. It was all unbelievable and horrible, the saliva became really thick
and I seemed to be unable to swallow at all by the fourth week and had to
continually empty my mouth into tissues. Also had problems keeping the feeds
down, I think I tended to put them in too fast to the PEG and would often just
throw them all back up again. I also had lots of drugs - solpodol for the pain,
dom perimone (or something that sounds very much like the name of a famous
champagne house anyway) for the sickness and also tried other things for releasing
the phlegm and for the dry mouth. Although my mouth was so sore by this time
that even water was too much. All of the drugs were in soluble forms so they
could go down the PEG. There were times when I was so tired that I would fall
asleep while feeding myself and what a mess that was ! Then forgetting to clean
the PEG and having to get up and do it again. All these things I remember,
sometimes they are like dreams to me.
On the last session of RT they offered me my mask to keep, I did take it but have since thrown it away. At the end of it all my skin was badly burned, bright red and very angry and peeling. I had been using acqueous cream throughout but eventually they gave me some gel, nothing much seemed to work though and it was just a case of waiting for it to heal. Of course, I thought, 'well that's it then, now I should get better' - but I hadn't bargained for how awful the RT side effects were.
It seemed like months before I felt able to function in anything like a normal function and there was absolutely no way I could swallow anything. For the first couple of weeks even talking was difficult and I often just wrote things down for people. My treatment finished on May 25th 2007. I did then feel quite abandoned as it seemed that once it was finished that was it. I had lots of panics because I felt so ill and had several emergency appointments with the consultant. Very bravely I decided that I needed to start thinking about going back to work, not least because my salary would soon be cut to half. So I went back on a phased basis. One of the first things I did was a very leisurely trip to my HQ in London for a conference - I managed the train journey and about an hour of the conference and then had to sleep in someone's office for over an hour but at least it was a step back. Progress was very slow it was as though everytime I thought there was a little step forward nothing else would happen for ages.
In August I went off to the Penny Brohn centre in Bristol for a three day residential where I had an introduction to alternative therapies and this was where I started to have the acupuncture which I believe has made such a difference to my recovery. I also did meditation and had some healing, but it was while I was here that I started to get something that felt like permanent toothache in my face and then gradually my face started to swell, It seemed that this was the start of my lymphoedema...................
The course was excellent and I got such a lot from it, however two months after the end of my treatment I was still feeling very washed out. I was also in constant pain and had to return regularly to my room to put painkillers down my PEG and of course missed all the delicious food as I still couldn't eat. They do make wonderful food at the Penny Brohn and wonderful fresh juices but I couldn't have any of it. I also missed the social interaction you get from sharing food with everyone else. we did a lot of meditation and relaxation which was great but I kept falling asleep because I was still so tired. The pain in the side of my face was like constant toothache. I was taking soluble sopodol every four hours and then inbuprofin in between after I had had my drinks down the PEG. I had oramorph but it often made me feel sick,.I found the solpodol also made me very woozy and ready to fall asleep. I learnt a lot about nutrition and healing and decided to pursue alternative therapies which would of course go alongside the medical treatment and I registered with Cancerpoint to start having acupuncture. I also started to have counselling at the oncology centre and when that finished my employer arranged for me to have some from Occupational Health.
I panicked a lot about the pain I was in and was convinced the cancer had come back. I was getting loads of support from my Mac nurse who arranged appointments for me at a moments notice to see the team of consultants. They were worried too so I had another MRI scan and a CT scan, all with various dye injections. I have found since having the chemo that my veins are quite difficult to inject into so I always hated that part of it. The consultant decided it all looked a bit suspicious and I had to go into hospital for a biospy. I was very low and very worried, convinced it had all come back, I had had another similar scare not long after my RT had finished and the feelings were awful. I just wished I could be stronger but just seemed to break down all the time. Also it was getting more and more difficult to open my mouth very wide and therefore difficult to get the obturator in and out of my mouth to clean it. The bung on the back of it which blocks the hole was almost too big to squeeze out between my front teeth and it was all very distressing for me. This was a very low point indeed.
I went in overnight to have the biospy – didn’;t enjoy that experience very much although as usual my consultant and all the staff were just so good and so compassionate. My face swelled up a lot so much that I could hardly see out of my eye where it was so swollen.
Alongside all of this I had gone back to work. I needed to because I would not have been able to afford to live in only half a salary. I don';t really know how I functioned in those early days, my employer was very understanding and extended the time I could remain on reduced hours. I missed the TUC conference that year as I knew it would just be too much for me and I had lost confidence about being too far away from home. Happily the biospy came back clear and I was also told that the scans looked really weird because of all the radiotherapy damage.
I also saw the speech therapist and had a sort of x-ray thing done to show what happened when I swallowed, I felt very bleak about that as there was very little I could swallow as it all seemed to come back up again over the obturator, that was a low point as I thought I would never ever be able to eat or drink anything again. One of the things they taught me to do to make my swallow stringer was to pinch my nostrils together while swallowing - this was quite a breakthrough for me as it meant that I could actually manage to swallow if only water. I had an aim of 20 mouthfuls of water a day in 4 blocks of five swallows. It was hard work and I used to hate it but I persevered. I also had a thing called a therabite which you use to try to open your mouth more, but I started to just get really fed up with it all. I went into the dental hospital and they made my obturator bung a bit smaller. I remember feeling as though a miracle had taken place as it was now easier to take it in and out and this meant that I was able to freshen my mouth more often.
My mouth was still very sore even after all this time, I did go and see a homeopathic doctor and tried some of their remedies but it was still difficult, also my taste has never really been the same.
My swollen face looked awful and for the first time in my life I went to work without any make-up on as it was just impossible to make up the swollen side and there was nowhere to put my mascara ! Then my consultant suggested that I might have an infection and I was prescribed anti biotics, I started taking them and the following day had my first session of acupuncture and my first session of manual lymphatic drainage which I had arranged privately as there was such a long waiting list on the NHS.
Then something very weird and quite frightening happened. I was lying in bed dozing early in the evning and I felt all this wet liquid on my neck. I looked in the mirror and noticed that a small hole had opened up in my neck and lost of fluid mixed with blood was pouring out of it. Very scary, I panicked and rang the emergency doctor, who seemed to think that it wasn't too much to worry about. I wasn’t in any great pain at this stage. in fact it really had started to feel a lot better. Gradually the amount of fluid dried up although I had to wear dressings for several weeks, gradually it healed and I am now left with a sort of lump of skin on my neck where it came out.
The plus side though was that the swelling went down very quickly and the pain got a lot less. I also continued weekly with the massage and the acupuncture. To be on the safe side they biopsied the stuff which was coming out as well as a small piece of skin but nothing was found. By this time it was November and it was around then that i managed to eat some chicken noodle soup - with the noodles strained out of course ! I also started to try and drink my drinks rather than putting them down my PEG - even with limited taste they didn't taste good so I progressed to milk shakes and nutrient drinks - progress was being made at last !...............
From soup, I started to try other things - my taste buds were shot to pieces and mouth still very sore so anything acidy or spicy was out. The transition to proper food also played havoc with my bowels ! Won't go into details here too much but lets just say I experienced my first ever enema !
I knew I needed to try and get varied food but aside from the sore mouth etc I also have the obturator to deal with. Anything sticky or glutinous won't really go past it and bread or anything like bread goes into little balls and just stays in my mouth. Can't really do a lot of chewing things have to be very soft or mashable and I had just lost the taste for a lot of food. One of my staple things was tinned salmon which I used to mash up with lots of mayonnaise, that slipped down easily and of course good old porridge. I still start every day with porridge. I must admit that on the food front I haven’t really progressed great deal but I can manage very soft vegetables covered in sauce. I thought that mashed potato would be ok but it sticks around the obturator and glues it to my mouth ! Christmnas 2007 was wonderful if tinged with sadness - Christmas still is for me - I always wonder if it is going to be my last .
The result of this is that I can go completely over the top making it memorable. My stamina was still a bit low, and the PEG was still there if I needed it but I tried really hard not to use it. I kept asking for it to be removed but it was March before they finally took it and I now have an extra belly button !
So here I was finally PEG free - no more washing it out two or three times a day, no more marks on my skin from the plaster I used to use to strap it to myself. I know they say you can swim with them in and you get these huge sheets of plaster to put over it but me well, I never had the courage to go swimming with it, even though I love swimming so much and really needed it for the benefits of exercise and relaxation. Anyway I waited a week to make sure it was healed and took myself over to the new Spa in Bath. I just went all on my own and i will never forget the feeling of relaxing in the lovely warm Minerva bath they have there and just letting the current move me around. I lay there floating around in reflecting on the last year and how awful it had all been and how life would never be the same again. I see this day as a bit of a breakthrough for some reason. I was just there on my own, I knew that at time there were tears streaming down my face but didn't care. Lots of things that used to worry me don't anymore. I went into the steam rooms and the rooftop pool and just thought about how grateful I was to be there. I'd been there before and I have been there since but nothing quite like that first time.
Wish I could say that I had some sort of surge where I decided that I was going to beat cancer and became determined with a new purpose in life but I can't say that. I just know that I will give Mr. Sore Throat a run for his money. I have continued to have acupuncture which I think is wonderful. It has been especially good for my dry mouth and for the problems I had with my shoulder. I was told that it was normal to get the shoulder pain after a neck dissection because the trapezium muscle is damaged as all the nerves in your neck get cut and I was in agony, however two sessions of acupuncture and I have no pain. The same with my face and the site where the scar is , I rarely take pain relief now, except for the times when I have had a break from acupuncture. There is no way that I have replaced conventional medicine with acupuncture as it all works well alongside it but it has definitely helped with the relief of my symptoms.
I had a scare in September this year when a MRI scan came back looking dodgy and indicated a recurrence - but apparently it is very difficult to tell anything from our scans because of the RT damage so I had three weeks of worry and funeral planning again but then I was told it was ok. I have what I call a 'crooked face' - I really notice it when I see photos of myself but others don't seem to notice it and I think my neck looks really odd but try to keep it covered up.
I have suffered with depression and I have considered with my GP whether or not to start some medication but decided to wait until this month to see if the acupuncture could address this as well and I have to say that I have had a lightening of my mood and I do feel that I have a lot more energy.
But it will never be the same again but at least I am here still to see my beautiful daughters and at the moment back at work full time. I am also having Reiki and healing as well, I am very kind to myself and give myself lots of treats. Sometimes my treat is just a long lie-in but I try to give myself something every day. I would have never believed this time last year that I could ever start to feel that there was even a future for me - but here I am still here. I am now about to start the very long process of having a permanent obturator made which will last for the next five years so hopefully that will improve my eating problems a bit.
So this is my story so far, I don’t know what the future holds, but then does anyone ?
This was written quite sometime ago by Nina - she will provide more updates later on.