On Monday we published the first part of Anne Howe's amazing story covering the difficult path to diagnosis. Today we have the story of her two surgeries, one very long, one smaller to reconstruct her nostil.
Professor Tan, from the Gillies Research Institute, had asked permission for the remainder of my tumour after the necessary part had been sent to pathology. I had no need for my tumour and the sooner it was gone the better.
After I agreed, all the documentation was filled out. (I still get newsletters six monthly and have been invited to some interesting discussions on maxillofacial surgery. Interesting since I’m an ex nurse, but too far to travel for a short time.)
At this point I was taken into a side room where I was seen by a photographer and had my own photo shoot at many different angles.
Next was seeing the registrar, Dr Che, who explained a lot of things like the fact I would be in a lot of pain but would be given good meds to control this. I would be on liquid diet, could have tubes in my nose and be fed through this, may have bone taken from my hip, my face would not be a nice sight and at some point I would crash but that my team of carers would always be there to help me.
Panic started to set in.
Professor Tan came in to explain my surgery, starting by telling me that he was sorry he couldn’t give me informed consent. He told me the most he could tell me was that he would remove the tumour, and replace what he took by bringing the flesh from my cheeks around as a flap and using that to fill the area. He might have to take bone from my hip but he wouldn’t really know until he operated.
He also warned me my face would look horrific and it would be very painful but he would give me good medication to keep it under control. I had to be very careful to not get any infection as that could cause the whole thing to break down and not heal properly.
With very shaking hands I signed the form and a very gentle hand was placed on top of mine. He told me he would do the very best he could.
Thankfully I didn’t have long to dwell on what I had just been told as the nurse came to walk me down to theatre. It was then I lost it and the tears fell. The enormity hit with full force. We walked slowly and by the time I reached theatre I had composed myself.
Everyone was so nice to me. The anaesthetist even sang as I was sent off to sleep. For my benefit or not I will never know, but he had a nice voice.
Next I knew I was in recovery and it was very late. I was in horrendous pain to begin with and had an extremely dry mouth. A drink of water proved disastrous as even the smallest amount dribbled back out but with a straw I managed to get a little down. A lemonade ice block was much better.
Trying to answer questions was a mission as my mouth would not work the way I wanted it to. So writing became my form of communication for a day or so.
I had no tube in my nose either.
The next morning I was not allowed up to the bathroom until I had seen my face.me Professor Tan explained that he had removed the tumour from my nose, my upper lip, my upper gum and part of the roof of my mouth.
My official diagnosis was moderately differentiated squamous cell carcinoma of columella, nasal septum, nasal tip, upper lip and pre-maxilla. T4NoMo
Treatment summary: Full thickness resection of the central three quarters of the upper lip, anterior maxilla including full thickness of the lateral half of the alae & underlying piriform apertures, distral part of the nose including two thirds of the nasal septum & repair of deficit with bilateral FAMM flaps, nasiolabial flaps & septal hinge flaps.
(From here on I have reproduced Anne’s diary, edited. We have the full version but have reproduced only excerpts here. Anne kept a blog and had the nurses take photos nearly every day. I have reproduced only a few of the photos here. Ed.)
16th March Day 1
My diet consists of clear fluids only – clear soup, lemonade ice blocks, jelly and Fortijuice. I can drink coffee but no milk allowed so needs must and I actually got to like it. My pain levels are not as bad as I thought they would be although they were pumping meds into me regularly. I can shower but only from the shoulders down. I sleep most of the day.
17th March Day 2
Professor Tan came round early and it is today that he really explains what he had done. He gives me a face wax by removing my dressings. Owweee, that was painful, just a tad. He is happy with how it looks and I can have the drains removed. He also explains my difficulty in drinking and talking etc which is due to the fact he has taken flesh from some places and put it in places that it was never designed to be used for. So like a baby I have to learn to do these things all over again.
I have had my shower and been promoted to a laziboy for more comfort as I am not allowed to lie down at all. Now it’s time to remove the drains. The first one comes out easily but the second one just won't give. A 2nd nurse comes and together they work on it. They tell me they may just have to be a little forceful as it may be adhered to flesh but they will be as careful as they can. They give me extra meds. Well, when they become forceful, I nearly lift into space but it does come out. Seems it was connected by an internal stitch.
Saturday March 18th Day3
One word “antibiotics” and I have a massive meltdown. Poor nurse. She only came to see if I could swallow an antibiotic pill. I have just finished a whole month of taking them to fix the pimple/abscess on my nose. I have been on them, IV, since my surgery with no problems. I will get over this. I will. This was what they explained would happen (I would crash at some point) and look after me they do. Constant visits throughout the day to make sure I am ok.
A positive is I had some pain killers at midnight and I slept until the nurse woke me for my antibiotics without needing some more. My mouth was dry and sore when I tried to talk so I have more pain relief on board now. Things are looking up as it has made such a huge difference without the drains and my face feels much more comfortable.
Sunday 19th Day 4
A special treat today. So long as I can tilt my head right back and we get no water on my face then my daughter can wash my hair. It’s disgusting as it’d covered in iodine blood etc. Does nothing to make you feel good so we managed it and it feels so good. Feel like a million dollars. My face is also so much better looking & here’s my new pic.
Monday 20th Day 5
Professor Tan comes in & tells me he is amazed at my rate of healing. I can have my packing out and if there are no further bleeding or problems I can go home after lunch. He doesn't want me going back to Dannevirke until after I have had my stitches out as I would be too far away if anything went wrong so I agree to stay in Upper Hutt with my daughter and family.
A nurse comes in to remove my packing and it feels like it is coming from much further back than my nose and seems to go on forever. The difference once the packing is out is amazing. To be able to breathe through my nose is fantastic and I seem to have lost the real heavy headed feeling I had.
No further problems so I am sent home to my daughter's in Wellington and my own private nurse, two year old grandaughter, Ava.
It is time to get the 100+ external stitches removed. It takes just over an hour. I also see Professor Tan as all the antibiotics have given me thrush. He is happy for me to go home to Dannevirke. He also explains that I will be back in April to have the little flappy piece below my nose divided and he will create a left nostril as at this point I simply don’t have one.
Photo below shows the flap piece in the middle just under my nose.
I only have to stay overnight for this surgery and it all goes well.
Photo below shows my new nostril after surgery.
Stitches removed from 2nd surgery
After this, Anne had radiotherapy, a story we will publish soon.