Hello, I'm Brenda, a 57-year-old housewife from Whitley Bay in the North East of England. My husband is John and we have a son, Daniel 28 who lives with his partner Cathy about 12 miles away and we have a daughter Becky 26 who lives and works in Leeds. My Mum, Mary, lives just across the road from us with her Jack Russell, Roxy and, last of all, there's Rosie our cocker spaniel dog!
About two years ago I started with a small red blob under my tongue, which was diagnosed as a blocked saliva gland, which was accumulating little stones. After being referred to an ENT specialist I was eventually admitted as a day patient and had the lump removed. Six months later it was back again and was duly admitted for a further minor operation, with the understanding that the actual saliva gland would be removed in the future to stop any further accumulation of stones. At the follow-up appointment I was told that the biopsy result had shown signs of a tumour, but not to worry as this is an extremely slow growing cell - to quote the doctor" I cannot stress how low grade this type of tumour is". A CT scan was arranged for some weeks hence.
Up to that point I had always gone into the consulting room on my own but just before I was called John said he would like to come in with me…."OK if you want to but I will be fine" He followed me in and whereas on previous occasions I had only ever seen one doctor, this time I was confronted with what seemed like a room packed with faces, only one of which I had ever seen before. Everyone was introduced to us but all I heard was "plastic surgeon" - "maxillofacial professor" blah blah blah…. I thought "what on earth has all this to do with me" A lot of talk went on, none of which I can remember, and then was asked to go for an x-ray and bring the film back. The film was put up on the wall and then it started…'We are going to take out your lower jawbone and replace it with a bone from your leg…Remove half your tongue and replace that with a flap (why do they use this word!) which will come from the soft tissue in your forearm…. then a skin graft will be taken from your thigh to cover the forearm. You will need a tracheotomy…plus we will need to feed you so you have a choice of a nasal tube or a peg fitted in your stomach'. During all this we were standing and my husband had his arm around me, as this news was coming at us his hand was stroking my back - the strokes were getting faster and faster and all I could think was "will you STOP RUBBING MY BACK" and shoved his hand away. It must have looked odd to the team standing behind us!
I opted for a peg to be fitted as I reckoned there would be enough going on in the facial area thank you very much.
All sorts of details were being discussed but I just shut off, I couldn't take it all on board. Then a very pretty nurse came over and introduced herself as my Macmillan nurse, she had taken copious notes and said she would call to my home to go over all this in detail. Thank God.
We drove home in stunned silence - my biggest worry was how do I tell my mother. As always Mums are tougher than you give them credit for and she started sorting out the practical side of things. I'm sure she will have had her "moments" in private.
Up to that point the tumour hadn't moved much but within the next two weeks it was pushing my bottom teeth out of place and coming through the jawbone and gum. I would lay awake at night and feel this strange sensation in my gums. I made another appointment to see "the team" who agreed that it was growing rapidly now but they couldn't bring the operation forward. So at the end of February 2004 I was admitted to have the peg fitted, which was a bit of an ordeal as it was very tight. I felt as if I had on a bra that was far too tight around my ribs. I had the major surgery on 2nd March. The operation lasted 16 hours and my family were out of their minds with worry. Apparently John kissed both surgeons as they left the hospital at one o'clock in the morning!!
Needless to say I don't remember a thing until waking up in ITU some eight hours later with John, Dan and Becky peering over me. The first thing I did was gesture for a pad and paper and scrawled a message..."shut that door I'm in a draught" which caused great hilarity for some reason! My ITU nurse was an absolute angel and I was sorry to lose her when I went into the open ITU ward the next day. The noise level in there was unbelievable and the nursing staff seemed more interested in whose turn was it for a tea break than tending to their patients. They have you over a barrel as you can't move or speak and are totally dependent on them for everything - even wiping your bum, which in my case was a near full time job as the Jevity gave me the runs for days. I remember one time being woken from a morphine-induced sleep only to have someone in my face doing a questionnaire on the noise levels in the ITU ward. It was one thing trying to move my head to say "yes" or "no" but quite another trying to sign the damned thing whilst strapped into a straightjacket of a heat blanket.
Once I was able to "take in" my predicament I became aware that my head was three times its normal size and practically every part of my face and neck was numb (I was not conscious of the hundreds of staples and stitches around my chin and neck at that point in time). I had a trachie in my throat to breathe. My left forearm was heavily bandaged. Right leg was encased in some splint and bandaged. Left thigh had some strapping on it. Drains were coming from both sides of my neck, leg and arm. I had a catheter fitted, plus of course the feeding tube to the peg in my stomach. Not a pretty sight but as one of the nursing staff had told me on the pre-visit - "You will come in here relatively healthy and we are going to make you very poorly". How right she was!!
From ITU I was put on a "Special Care" ward or "Hot House" where the temperature has to be kept near boiling point for the sake of the flap! The only other patient in there was a man in a bed like a spaceship, which made the most dreadful noise all the time. I still had 'the trots', much to the delight of the over-worked nurses. I must have pressed the buzzer at least twelve times one night. I was very popular!
As well as the obvious discomfort experienced in the early days of this operation I was told I had contracted the MRSA virus and therefore had to be isolated. So was wheeled off to a side ward late one evening. Apparently the man in the spaceship told one of the nurses that I had died through the night as he saw them wheel me away!
I can't speak too highly of the nursing staff on that ward but, as I'm sure those of you who have had this operation will know, allowing patients to sleep is not part of their remit. I can't remember sleeping for more than two hours at any one time during the weeks I was in hospital and, in the early days, was woken at regular intervals during the night so they could do the 'obs', which included the ultra sound on the flap. I got to where I would find the 'spot' myself to hurry the process up and get back to sleep. I say sleep but the droning sound of the feeding apparatus was nothing short of torture. Someone on this site has likened it to a mooing sound but I felt there was some gremlin in there singing "Old Macdonald had a farm" with all the accompanying animal noises! This would go on for sixteen hours out of twenty-four, day in and day out. Added to which would be the noise from the trachie machine, plus the all the usual bleeps, bells and bustle of a busy ward. As someone said, "a hospital is a workplace" so I guess it's unreasonable to expect some peace.
Every day brought its own traumas and every day I was convinced would be my last on this earth. I absolutely dreaded visits from the Trachie nurse. She was convinced there was 'something' to "get up" off my chest and would ram that blasted probe down the pipe time and time again - I would be purple in the face and was sure the staples in my neck were about to burst. She never succeeded in finding anything and I kept telling her I have never had chest problems and would know if I had, but nothing deterred her.
I had no less than four trachie tubes fitted, some in theatre under local anaesthetic and one by the ward sister in my hospital bed As you probably know they have to be sewn in. No wonder my neck area is like a patchwork quilt! I thanked God when I was finally able to make a noise from my throat and was allowed to have the tube removed…bliss!
Having the staples removed was not as bad as I had imagined. They take out every other one to start with and a student nurse was doing this. It was his first attempt at taking out staples from a neck dissection and I'm pleased to say I hardly felt a thing but the poor lad was dripping with sweat at the end of it.
There were regular visits from the Physiotherapist who would put me through my paces with arm, neck and leg exercises. Also the Speech Therapist would pop in with lists of words to say, mouth/tongue exercises and gently encouragement to sip water from a spoon.
My wonderful surgeon would call each morning on his rounds and I always felt I could tell him my worries and concerns and, nine times out of ten, he would allay my fears. The best days were the two occasions he brought news of the biopsies of the soft tissue and bone taken out at the operation - both had "good margins" - which was great cause for celebration! My type of cancer cell is called an Acinic cell, which apparently does not respond well to radiotherapy.
My family visited each day, although I wouldn't allow my mum to visit as I thought it would upset her too much. John visited twice a day, armed with a shopping bag with clean nightwear etc for me, plus umpteen cards and messages from friends which he was keen to read to me but I was usually either in too much pain or too tired to listen and he would have to take them home again, only to return the next day with even more and again he would cart them back home. He was nicknamed Roy Cropper (of Coronation Street fame) as he was forever carrying his shopping bag! I have since read and appreciated all the 300+ cards, which papered the walls on my return home from hospital
Dan and Cathy would call in towards the end of visiting. Dan would bring his guitar and softly strum my favourite 60's tunes whilst he and Cathy sang to me. Becky would call in, usually when no one else was there, and bring a bottle of rose oil to give me a massage. There was very little area of skin to go at as everywhere had a dressing on it but she would massage my back and lower left leg.and even rubbed talc on my sore bottom! Bless her! (I had a bedsore on my back and bum).
With all the swelling to my face I used to dread looking in the mirror as each day I seemed to take on a different "look". My catchphrase would be "Tonight Matthew I'm going to be…Buzz Lightyear../ Desperate Dan ..Elephant Man! Depending on who looked back at me from the mirror.
After a week of worrying how Mum would react to seeing her daughter in this state I finally agreed to her visiting. She came through the door saying "what was all the fuss about, you look great"!! She visited every day after that and, as is her way, brought laughter and mayhem with her. I was always exhausted after her visits as, not able to speak, I would be frantically trying to keep up by scribbling away. What a wonderful day it was when I eventually found my voice again, well not really MY voice but someone's voice! My mother's face was a picture when I actually replied as she came through the door with her usual "how are you today" - although it took a good minute before it dawned on her that I had actually said "crap"!!
Bit by bit the drains would disappear, staples would be removed, catheter taken out, more manageable dressings on the arm (still had plaster on leg of course), go walkabout during the peg-feed-free hours and, BLISS, able to use the toilet instead of the dreaded bedpans. The best day of all of course is when the doctor says you can finally go home.
I walked into the lounge to find the walls 'papered' with get-well cards and flowers everywhere. It was wonderful to be home, but also very scary. After three weeks of nursing care with every question answered, medication and dressings administered it's a bit daunting to be left to your own devices. As time goes on you gain confidence and fall into a new routine with the safety net of being able to telephone the ward if you hit a real problem…. Just as we did after about a week of being home. I had taken my night meds and was just going to bed when something fell on the floor and rolled under the bed. It took a few seconds before I realised that my peg was missing!! YIKES! I screamed for John who ran up the stairs four at a time. "Don't panic" I told him (as he is a panicker!) We rang the ward sister who very calmly told us to wash the peg, stick it back in as best we could and put a dressing over it until morning, then come back on the ward where they will re-fit it. I had a pretty sleepless night and we were up and out early next morning, arriving by taxi at the hospital about 7.30 a.m.! We waited in the day room for quite some time but eventually was given my "old" side-room back as I was still MRSA positive. It was late in the day when the peg nurse came to check me over, only to be told that I would have to see the doctor in the morning… not being able to eat anything and having no peg to feed through I was beginning to feel quite woozie. Added to this, the stitches on the back of my tongue were starting to irritate the back of my throat, making me "gag" all the time. I was sent over to another hospital to be checked over by their ENT department. After hours of waiting, by which time I was getting very distressed, a doctor finally had a look down my throat. I had a banana flavoured spray put up my nose to anaesthetise the passageway then a probe was put up my nose and down to see the back of my throat. He could see that stitches were "dangling" and proceeded to cut the stray bits off. Not a procedure I would wish to go through again in a hurry! Whereas none of this is particularly painful it is extremely distressing when you are tired, hungry and continually retching. I had had two anti sickness injections, neither of which seemed to have any effect. John was really worried about me, as I was just so weak.
Back to my original hospital for a much-needed sleep. I sent John home and my darling daughter, Becky, stayed with me. At last the nurse came for me to go down to the X-ray theatre when the new peg would be fitted. Becky was told I would be back on the ward in about twenty minutes. I waited over two hours on a trolley in the peg unit and I was getting very weary, not to say exasperated. At last my turn came and the same doctor who had fitted the first peg was going to fit this one. I was able to ask him not to put it in so tightly this time! 'Great' I thought, 'at last I can have some food' No such luck, I was told the peg has to be left for 'so many' hours and then only water can be flushed through. I could start putting food through after twelve hours! LET ME GET OUT OF HERE.
Next day I get my wish and am allowed home (with a determination never to allow this peg to fall out again).
ONE MONTH LATER
My wonderful sister in law, Gail, insisted on coming over from Australia to look after me and give John a well-earned break. She was an absolute angel. As well as looking after my every need she did all the shopping and prepared the most delicious meals (according to the rest of the family), I could only take in the smells! She would give me a soothing massage every night, which helped to reduce some of the swelling in my neck and jaw. She was totally "tuned in" to my mood, suggesting we ring the hospital for advice (and on two occasions actually turning up there) when I was distressed about some aspect of my illness. She accompanied me on all my follow-up appointments for dressings, physiotherapy etc. Everyone should have a 'Gail' to take care of them after this operation! My brother joined her after a few weeks and he too would massage my back and neck and try to encourage me to acquire "positive" energy. I am so grateful to them both for helping me over some of the early days when everything seems so strange and frightening.
There were many occasions when something would tighten in my neck and I was convinced I was going to choke to death. Some days I would be plagued with a strong salty taste in my mouth and no amount of sipping water would reduce it. Another time I would get a "furry" feeling on or under my tongue - thrush maybe? After weeks of gargling with Nystatin the feeling was still there. Each day would present a myriad of different tastes and sensations and whenever I asked a medical expert for their opinion on these strange happenings the answer was always the same: "Its all part of the healing process"! Eventually you learn to accept that each day will present a different challenge and you just have to condition yourself to cope with it. Some days are easier than others!
It is essential to carry out a strict oral hygiene routine. Mouth packs were readily available whilst in hospital but I have to remember to keep a stock of them at home at all times. The little pink sponge-sticks are excellent for cleaning the roof of the mouth and all around the tongue and flap. A baby toothbrush is nice and soft for cleaning what teeth are left. I also use a cotton bud for gently cleaning under the tongue and then swish round with a good mouthwash. Its amazing how even the slightest particle on the tongue now takes on mammoth proportions. Everything is so exaggerated!
We take for granted how automatic it is to swallow our food but after this operation all that once came naturally to us has to be learnt all over again. Even sipping water seems an enormous task. The Speech Therapist visits in hospital and gently encourages you to sip from a teaspoon or baby-cup. I know there are lots of people who cannot swallow their own saliva and this can persist for many months. I was one of the 'lucky' ones as I did manage to take little sips of water and even managed a cool cup of tea by the time I was ready to leave hospital. Anything with more substance was a definite 'no-no'. One of the nurses introduced me to a man in the next ward who was a week ahead of me with his operation. He was managing to eat yoghurt - WOW did I admire him!
Once home I was having five Jevity feeds per day through the peg in my stomach, plus all my medicines and water, which is needed to flush through the tubes. Meantime I was expected to keep trying things like juice and milk, but I must admit that I found most things very difficult to swallow. My Speech Therapist, Helen, who visited me at home once a week, was wonderful. She would have little 'tricks' which would help me to get things down, such as closing the back of the throat, sipping a little water, slowly lean head back and gravity would take the fluid to the back of the mouth, then open the throat and gently swallow. Walla gone! Also, to imagine that you are swallowing a large pill/tablet and practice swallowing hard, this is to strengthen the muscles in the back of your mouth. Eventually things start to happen and bit by bit you move on to ever more viscous things.
I went through a particularly distressing period when I was dribbling all the time. Saliva would collect at the front of my mouth and run down the scar line on my lip, which was (and still is) numb. I resorted to wearing a bib all the time. My mother would make the bibs from face cloths, sewing tabs on for tying and decorate them with pretty flowers!! I would use seven or eight of these per day and was constantly dabbing my chin, which became red and sore. This went on for quite some time; even the prescription patches made no difference. Then, all of a sudden, the dribbling stopped!
Once I had graduated to managing food of a 'soupy' consistency the problem then was …what to eat? All propriety brands were too thick, too salty or too bitty. We scoured the Internet for ideas and eventually found a book for people who can't chew. When it arrived most of the recipes were for flans, scrambled eggs, stews etc. in other words for people who COULD chew! After much trial and error we, John and me, have found the answer is to do a big weekly vegetable shop and have a mammoth peeling and preparing session, then liquidise the lot and freeze in containers which will hold enough for one day's meals. Just a little tip: keep all green vegetables separate from the rest as they tend to dominate the taste, just add as much as you wish to each meal.
Should anyone be looking how to get started, the recipe which works for me is; Carrots, onions, swede, sweet potato, butternut squash, leeks and potato. Obviously omitting anything you don't like and adding those that you do. Depending what is available I might add bell peppers, radishes, mushrooms, celery but nothing too spicy. As I said, cook cauliflower, broccoli, courgettes, cabbage, sprouts etc separately. I boil the first lot of veg in a large pan and cook the green ones in a steamer on the top. I can't tell you how many pounds of this or that, I just bung the lot in and boil for as long as it takes for the veg to soften. I cover the veg in water and add just one vegetable stock cube. Everyone will have their own ways of cooking and adding what they like but I find its safer to be a bit on the bland side and add stuff later, rather than ruin a whole batch of soup with too many strong flavours.
Then I liquidise the whole lot and put into containers (remember to leave enough out for your next few meals) and put the rest in the freezer.
This recipe is meant to act as a BASE for lunch and/or dinner. I just add a small portion of whatever the rest of the family is having for their dinner. For example:
I will add a small amount of stewing steak and gravy plus small dumpling
A small piece of Yorkshire pudding and whatever meat and gravy.
Salmon (or any fish) but you must check for bones first. I add a couple of chips!
Most things are ok. and adding gravy or sauces does flavour the soup. It is boring enough having to have a soupy meal every day but the taste doesn't have to be the same, or the colour!
Rice doesn't liquidise.
You can thicken with lots of things - cheese, cream, natural yoghurt, evaporated milk etc.
I sometimes add a bit of cheese scone - brioche bread - ordinary bread - half a tin of macaroni cheese - any pasta. I'm sure you will have lots of ideas of your own.
I then put into a large soup bowl and microwave until hot. (Add the cream/yoghurts etc after cooking!)