Monday 18th June 2018

My Cancer Surgery #3. 2018.20.

My Cancer Surgery #3. 2018.20.

Since the diagnosis of cancer in my upper front gums and partially on the inside lip on the right hand side in May 2017 I have had three surgeries. The first, on Thursday 6th July 2017  has been written about in detail and in 3 parts…because it WAS huge!

Here are the links: Part One, Part Two, Part Three.

And over 4 months passed as a lot of healing needed to happen in my recovery at home. My leg was cared for by the Community Nurse who visited for 8 weeks over a few days each time, and my mouth, well it had to heal over time. Before the next surgery there were visits back to Chris O’Brien Lifehouse and to Westmead.

Then I had the second surgery. It was at relatively short notice and was for Day Only stay. So different to last time. But do read the post if you have not because it was a hard start to MY day with my husband driving me down on the same day.

Moving right along now to Cancer Surgery #3.

Again there was a long gap from the previous surgery to this one, but in this case let’s “blame” end of year and January …and that is fair enough because everyone needs a break. And my surgeon sure did! As did the team. But before this surgery and for some weeks in December and January we did not lose touch because as the ‘flap’ inside my mouth healed it was a bit unruly and decided to do things its way so we (ok, my husband) had to take regular photos INSIDE my mouth and send them to Professor Clark. And ‘things were OK’ he said so I managed to take my worry hat off.

I had better understanding of what would happen in Surgery #3 and as my husband agreed with my wish to drive down the night before it was a smooth start the next morning at 6.30 a.m. on an early February Sydney day to walk to Chris O’Brien Lifehouse to present me to pre-admission.

The pre-admission room and beds were full! 7th February was a popular day. This time my husband left me to go back to the apartment where we stayed overnight when I went to theatre. No waiting in the anaesthetic bay for an hour this time…I was ‘first’. Yay. Chatted to the same anesthetist from last surgery, also to my oral restorative dentist and once wheeled in and shuffled onto the bed, chatted oh so briefly to my surgeon.

Back in my waiting space within 2 hours….dressed in an hour…and we were on our way home (2 hours away) arriving there some 5 hours after I started surgery. There was ONE big surprise. How I looked!!

The ‘look’ was the foam squares (they were holding a stitch each) to add some movement but also stability to the stitches that were making MY NEW upper lip…from the skin graft from surgery #2 that was taken from my right thigh. I know, my body is a GIVER!!

The other part of the surgery was to add some ‘abutments’ – screws – to the gum/jaw area to allow for the skin there to keep healing BUT to add a cover – like a mouthguard called a stent – to protect this area.

Oh my goodness. That did fill up my mouth let me tell you, and make eating (and drinking coffee!) particularly challenging. In fact, I literally dipped my foam into a cup without realising (Initially I thought it was blood but it had a coffee aroma!) so I had to be very careful.

The foam – with stitches in –  also prevented me from washing my face and hair so my dear hub learned how to help do their hair wash over the laundry sink with me holding a washer to my face.

It was only a week of being like this as when we returned to Sydney for the check-up the stitches were removed AND the area in my mouth indicated that it was time for a visit to the Oral Restorative Surgeon to start planning the implanted teeth program.

Foam Blocks gone. Mouth very swollen due to stent and surgery.

Update #1.

On Friday 23 February we drove to Westmead to have the stent looked at and the condition of the gums. I was a little nervous as my mouth was stinky (food particles under the stent) and my oral restorative dentist had a broken hand and his colleague (who had attended each of my surgeries) would be undoing the stent and examining the gum with my regular person viewing and commenting.

Firstly, the precision with which the stent had been drilled into the current abutments was spot on and as each was loosened the stent eventually yielded and that stinky thing was GONE. The nurse and the specialist dentist did an amazing job of cleaning the area and as they always do for my visits, photos of the inside of my mouth were taken.

The BEST news was that the gums growing around the 5 abutments are doing as expected and there was now no need to put the stent back on. Phew. Phew. Phew. But now what? Well, I have my gums and abutments on display and have been given all the care instructions I need.

I will be returning to Westmead in 4 weeks to have a temporary prosthesis put in if all is well. 

I hesitated about publishing the photo of my mouth but then I wanted to explain it more:

The little silver things are the abutments with caps on – there are 5 – and they started off being attached to the fibula bone from my leg which was cut and made to fit my mouth*. I have only 5 abutments when they were hoping for 6 but my fibula bone was too narrow in one spot and broke. The redness is OK and the area above the ‘jaw’/gumline is the ‘flap’ which has been harvested from my right leg *and has been cut, stiched and used for different purposes such as burying a skin graft** to make my ‘new lip’ .

Update #2.

Whilst my dental team thought my gums were going well it was when they shared the photos from Friday with my surgeon, Professor Clark,  he saw some small issues with the gums that he thought will benefit from at least another week with the stent in. So….back to Westmead this Thursday for that. I understand the need to make things right and trust my team implicitly!

* part of surgery #1 ** part of surgery #2.

This will be the second last of Cancer posts for a while. I appreciate that there is support for me as I go through this but I also want to update readers too. However, the remaining post, Part Two of Eating after Gum Cancer Surgery will be published in two weeks. Unless there are good reasons for updates, there will be a cessation for a while. Thank you for your interest.

Denyse.

Joining with Kylie Purtell here on Tuesday for I Blog On Tuesday.
Joining here with Leanne for her Lovin Life Linky on Thursdays.
And I will also join with Sue and Leanne here for their Wednesday Link Up.
Thank you all for hosting!

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Comments

  1. Your story is so inspiring Denyse. Most people hide away and don’t share how personal they look and feel. Thanks you for being so open and honest.

    • Thank you Nat, I just do what it is I do. I am a heart-on-my-sleeve type of person and as long as no-one is put off or offended by what I share, then it is a good thing in my opinion. Too much secrecy leads to more anxiety. Mind you, I am yet to come across another person who has been through my cancer journey (I know there are people around who have from around the world) as my cancer is much less talked about or even written about than the better known ones such as Breast Cancer, Ovarian Cancer, Leukeamia, Brain Cancer and Prostate Cancer. Denyse x

  2. I think it’s fantastic how communicative your medical team are with each other and they seem so dedicated!

    • That is true and I am grateful for that especially when the dental team told me the surgical head is such a person who keeps everyone informed and consults with them too.

  3. Always thinking of you, Denyse. You’ve been through so much and are so resilient x

  4. Can you think of anything more unfortunate for a surgeon to have than a broken hand?! I’m so happy that you have such a great team and that you have such a good “working” relationship – that is SO important. You look so happy and healthy – it’s amazing how far you’ve come in such a short time!

    • Thanks Sammie. There are days that drag and there are days that fly by. It is the way of waiting for: the next examination, the next test, the next visit to Sydney. I am disappointed in a way that we have to go back to Westmead tomorrow but then again, it is a chance for the two oral restorative surgeons to check the healing 6 days after. I really do not want the stent back in (uncomfy, smelly etc) BUT I also want the gums to do the right thing.

      Yes, “surgeons who try to pull apart two large dogs having a fight”….breaks a small bone in doing so and renders the hand ‘useless.’ But we can all be better informed AFTER the event! I did not know about it till post surgery and I trust they do all they can to care for me. Having had hand surgery myself x5 he will need some pretty intense physio!

      Denyse x

  5. This is harrowing reading Denyse so I am only aware how it must be to be living through this. You are very open and honest and I wish you a speedy recovery although it won’t be quick by the sounds of things. Do take care and thanks for sharing your inspiring story. I have shared this for #mlstl today

    • Thank you Debbie. I have found that blogging about it does help me but it also helps those who know me get a better report/picture of what is going on.

      I said a while back I did not want to be known as a ‘cancer blogger’ and that still stands as my world encompasses more than that.

      I print my blog posts off and have them in a folder too and also send my 94 year old Dad a copy so he makes greater sense of what has been happening.

      I appreciate your words!
      Denyse

  6. You are such an inspiration Denyse and it is interesting to read what exactly is involved. Hopefully others who may need similar surgery can gain some comfort from reading your account of your experiences. You are doing so well and what a lovely husband you have. Obviously, his support has also been very important during this difficult time. Thank you for sharing with us at Midlife Share the Love Party #MLSTL

    • Thank you Sue. Whilst I have never thought of me as being inspiring I am hearing that descriptor from others and even my husband said it to me as the local pharmacist who cares for us told him that was his impression too.

      So, if it my blogging helps another that is good.

      However, there has been no such help forthcoming for me from the day I was told about the cancer and I do think, once I am well and truly done I will be raising it with my surgical team who have a good website with helpful info but there really was NOTHING for me to look at or consider other than my doctors telling me what to expect.

      Thanks for the link up too.
      Denyse x

  7. Sending so much love your way. I have a very weak stomach (always have) but read the whole thing and followed along with the photos because I think what you are doing is so important. Like you said this is a much less talked about journey in the cancer communities… So I am sure you will be helping other people as you share. Good luck for Thursday xxx

    • Thanks so much Deb for your courage to read through this. I understand about some things. I am a vomit-phobe! For the time I had my leg wounds being tended by the community nurses – around 8 weeks at home – I literally couldn’t look at them as they cleaned the sites. My husband always took photos though as it was important to me to have a record. I could look at them more dispassionately.

      You are very kind to have come along and commented after reading..hope you are OK!

      Thanks for your good wishes for tomorrow.

      Denyse x

  8. Denyse I have a dental background and have found your journey really interesting from a professional point of view – they do such amazing things and you have been such a trooper through it all! Hopefully the stent won’t be back in for too long and soon you’ll have teeth again – I think we’ll have to have a cyber party for you when the time comes! Thanks so much for sharing this with us at #MLSTL – I’ve shared it on my SM. xx

    • Thank you! I actually told my team of prosthodontists yesterday about your interest from this perspective. I also now know that the term ‘oral restorative guys’ is ‘prosthodontists’. Where I get my treatment (all free other than the final, permanent implants) is the teaching hospital for Sydney University and other Unis training. One of my ‘guys’ teaches there too.

      They were telling us yesterday that my type of surgery is still ‘cutting edge’ and not many surgeons (the head and neck ones I have) are as collaborative as mine are. I feel fortunate that without me knowing anything about who I was being referred to back on 17 May 2017 it was to the BEST.

      Still getting the stent back on yesterday was a bit of a disappointment but I trust the team and so do what they say is for the best.

      Denyse x

  9. I was an oncology nurse for 24 yrs and worked with the head and neck surgeons at our cancer facility. None of it is pretty but it is life-saving. As one of our doctors said, “you have to hate the cancer more than you love the looks”. God bless you on your journey.

    • Thank you Victoria for your real perspective gained from your work. I am lucky I guess as eventually my facial appearance from the outside will be as close to it before I had surgery. My right leg is quite a different story…as it gave the flesh, skin and bone to make my mouth. Very grateful.

      Denyse x

  10. You have been through many challenges! I know it must be very difficult. Best wishes for a speedy recovery and an easy time going forward.

  11. Well done Denyse, such a lot of operations to get through. Your last selfie shows it is all worth it.

  12. You know, I’ve been slightly cynical (is that the right word) or Western medicine & pharmaceutical companies – mainly re over prescribing yadda yadda yadda, yet your story has shown me just how much a recovery like yours is based on a team – both medical and personal. It goes without saying how much I admire you & your support crew, but I’m in absolute awe of what your medical team is capable of.

    • Thank you Jo. I have been given the best people that could be in this particular field. That was made even more clear yesterday when I had two prosthodontists collaborating ‘inside my mouth’ – my regular one has a broken had so he was spectating!
      My on-line support crew buoys me greatly too so thank you for being part of that!
      Denyse x

  13. Thank you for keeping us in the loop, Denyse!

    You’re always in my thoughts as you power through your post operative recovery.

    SSG xxx

    • Thank you my friend.
      Yesterday was a bit hard with some awful gut pains to contend with…my GP told me today it was likely the amount of immodium I took caused the bowel to spasm. Yikes.
      I was a bit stressed as I had my first IBS episode yesterday before we left and I ‘over did’ what I took. Shall learn from that lesson.

      Denyse x

  14. It’s such an emotional ordeal you’re going through Denyse. You’re always in my thoughts and I am still in awe of your bravery. I hope that the next stages go well and you will soon be beaming at us with your brand new smile! 🙂 #TeamLovinLife

    • Thanks Min, yes recovery, as you well-know, is part physical and part psychological. I am having some days when I reflect and get a bit sad but generally I am more buoyed by my good outlook and my recovery with all the support I get on-line and in real life.
      Denyse x

  15. It’s been a long and painful journey for you Denyse, but it’s really starting to feel like the end is in sight, I’ll bet you’re glad!

    • Thanks so much Janet. One thing I have learned is how resilient I am. I also have less physical pain most of the time and only use over the counter meds and perhaps a heat or cold pack.

      I hope your recovery is going well and your news after the biopsy it good.

      I am off to have a general skin check tomorrow – I do that every 2 years. Always a good report…so hoping so tomorrow.

      Denyse x

  16. Think of you often Denyse and I so admire your bravery. I’m so glad that things are going well so far and send lots of love and strength to you for the next stages. Like everyone following your story, I can’t wait to see your new smile 🙂

    • Thank you so much Jo. How lovely you are.

      I am going well except for an occasional hiccup like yesterday when I had some pain from bowel spasms while at the dental place. My GP tells me I took too many immodium for my IBS. I will be OK next time now I realise this. IBS has calmed down majorly but yesterday (with the anticipation of the visit to Sydney) seemed to trigger it.

      I am probably not going to have my smile for a while yet..it is happening in two stages: first will be an ‘in place denture’ then over time, the prosthodontist (so good to know the real title) will make the implants which will will be removable for cleaning.

      I am guessing with all the process: 5 more visits of around 2 hours each time with spaces of weeks between we will almost be at the one year mark of knowing I had cancer!!

      I hope you are getting over the beautiful wedding. It is a special time but also very wearing!

      Denyse x

  17. Oh Denyse, you are a trooper and your updates on social and even in this post show what an incredible ordeal it has been to go through. I’m glad the surgeries have gone well, and I do look forward to your next post about eating. Are there certain things you can or can’t eat now? Does hot coffee hurt the inside of your mouth after having surgery? I have a lot of questions, which I’m sure you will answer in your next post.

    • Ah Bec! Thank you…my eating choices are limited and generally I am using my common sense about what I can eat. It’s funny, it’s almost like feeding a one year old or a baby with a couple of teeth. I literally cannot chew nor crunch as I have no top teeth to do these actions. So, food needs to smooth as can be, in very small pieces which can be broken down using my tongue and 8 bottom teeth and slippery too.

      In hospital I started on clear fluids – jelly, soup and apple juice and then over time at home I added to this by making soups and liquidising them and I could dip buttered toast into them and they could slip down. I have learned to enjoy weetbix for breakfast, on a teaspoon as the mouth does not have much room), tiny sandwiches with honey, or vegemite or PB cut into 16 crustless squares. Dinners are minced-based and I make a few different types which go down OK with noodles/pasta. I have mashed and blended potatoes and add some juice from casseroles too. I made a ‘cold meal’ for summer lunches of smoked salmon, avocado, mango and cream cheese – all cut into v small pieces. The coffee is OK as long as I do not drink it scalding hot – same with cups of teas which I love with dipping biscuits. Cake is my friend. I am getting a bit sick of them but with icing on top they go down well. I eat everything with a teaspoon or my hand. I sometimes dribble fluids – see like a baby!!
      Denyse xx

  18. Wow. This is incredible Denyse. You are handling this all so well. I really do admire your “let’s get on with it” attitude through it all. #teamlovinlife

    • Thanks Leanne I guess none of know how we will go when something BIG like this happens. Of course you have one very determined and brace young step daughter as one example. Right now I am a wee bit ‘over it’ but that’s because it is a tedious time coming up. The trips back and forth to Westmead will probably take me till the one year mark since diagnosis. Take care of you wont you! Sending love, Denyse x

  19. So happy to hear that things are coming along. One day soon this will all be a distant memory and you can feel proud of how amazing your body has coped with it xx
    #teamIBOT

    • Won’t that be great? I cannot get over it’s coming up to 12 months since the news I had Cancer in May! I am very grateful to be doing so well…even when I complain I make it brief!! Denyse x

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