Tuesday 18th June 2019

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Update One: Monday 24 December, is that whilst it is always disappointing to have changes like this in recovery, I am actually able to manage the issue of pain, when it arises and am feeling better in general.

Update Two: Monday 14 January, the pain comes and goes but the news from my Head & Neck surgeon is that he was looking for cancer when I saw him on 8 January. This made me quite concerned. Whilst there was not cancer there as he could see, I do now know there could be another surgery this year. Sigh.

It’s Friday 21 December 2018 and not a normal blogging day for me at all.

But, head and neck cancer recovery is not ‘normal’ I guess!

My blog has been a great source of comfort to me as I can write down what is happening to me, and often receive support in return.

That is lovely.

Today I just need to share this story.

Since my last blog post here, I have continued to be back and forth to the great team I have at Westmead: my prosthodontist and nurse. Each visit since October – when I last saw my Head and Neck cancer surgeon and nurse – has been about:

  • checking the health of the skin which was added to my upper lip (under it) last May
  • checking I am keeping the metal abutments clean where they are attached to the upper teeth prosthesis
  • and fitting me for a partial lower denture to add to my remaining 8 teeth

Showing my mouth’s flexibility – reduced now.

I have had some pain. It is like a sharp nerve pain and each time I mentioned it I was told it is part of ‘re-modelling’ and I have taken that to mean, this will go on as my new mouth and lip settle into their space. I am pretty good at managing pain but earlier this week I needed to share what had been noted by me after seeing my G.P.

  • the pain, which initially we/I thought was from some abrasion of the new tender inner side of the lip against the prosthesis was not likely to have been only from there…because
  • when I tried to use my small micro brush to clean in between the gaps left at the top of the screwed in prosthesis there was  no gap 
  • where the gap had been was skin, resting and immoveable, onto the top of the acrylic prosthesis

After my G.P. saw it, I sent these photos to my Professor and the Prosthodontist. The prosthodontist rang to say, stop using the microbrushes and use the water pik only to clean. The professor emailed to say “come and see me early January for a closer look”.

Yay to having responsive professionals. Very grateful.

Not so happy for the pain it is causing, the lip tightening even more and the disappointment that things are not going as I had hoped. Probably as my team had hoped too!

On the positive side, I have overcome setbacks before AND I trust my professional team BUT this is not a situation I imagined.

Skin does its thing it seems. My post here is about how the stent being taken out too soon prevented the full healing and I needed a 4th surgery and then over 3 months with a new stent.

I seem to think….more surgery may be on the cards.

Sigh.

I am taking pain medication as advised by my G.P. I am doing all I can to treat myself more gently. I am looking forward to seeing the family on Christmas Day here but my eating may be even more compromised by then. Who knows?

Many I know in the Head and Neck cancer support groups are in quite different stages of healing, acceptance of many aspects of their recovery and managing things well. I am buoyed by them, and already support for me and my update has helped. I also know as an Ambassador for Beyond Five, that those of us with Head and Neck cancers are affected by treatments long after the five years.

I am just over 19 months since diagnosis. I am also less patient than some! I am, always very grateful for my cancer treatments and follow-ups in an Australian setting here:

Chris O’Brien Lifehouse

The late Prof Chris O’Brien. In the hospital named after him.

Westmead Oral Restorative Sciences

Thank you for your support, friends from blogging land and readers!

Denyse.

 

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Comments

  1. I hope 2019 sees some positive steps in your healing journey! Merry Christmas to you and your family!

    • Thank you so much. I guess each step brings something different or new but I am glad I have such a good team caring for me.

      Have a wonderful first Christmas with your little one.

      Look forward to seeing you back here in 2019.

      Denyse x

  2. Hang in there Denyse you are doing so well and the perfect choice as an Ambassador. I can’t imagine the pain, discomfort and fear that this diagnosis brings but you have shown your strength and continue to do so. Have a wonderful week and sending love and hugs. xx

    • Oh thank you kindly Sue. It IS hard ‘hanging in there’ at times so I do give myself a break about that and then bounce back rather more rapidly than I ever used to.

      Having cancer is my big lesson in life it seems and I am very fortunate indeed to have so many friends and family caring and of course an amazing professional team.

      I hope your week ahead is a good one too!

      Denyse x

  3. I can’t believe all the little setbacks you’ve had Denyse – you cope with them all admirably and I’m sure you’ll weather this storm too. Cancer is such a miserable condition and it doesn’t always run as smoothly as we all hope. Wishing you all the best as you tackle this next stage of your recovery xx

    • Yes Leanne, there have been setbacks as my surgeries and recoveries are unique to me and the decisions made by the team at the time. In fact there is no-one else I can compare to in recovery which makes it a bit frustrating.

      However, I continue to remind myself “I have done this before and I can do it again.” I await my 19 February visit but before then I am back to the prosthondontist and he is removing the prosthesis for the first time since he screwed it in 5 months earlier. I sure hope everything looks healthy under it.

      It has been challenging cleaning it and living around the prosthesis – more so than I ever imagined.

      Onward…I have no choice unlike some I know… a lovely friend from social media has been given devastating news recently and I know how fortunate I am.

      Denyse x

  4. Oh Denyse, I really hope things work out for you soon, after all you’ve been through. You are so good at sharing your story and being so positive must take it’s toll sometimes! All the best for the year ahead. #lifethisweek

    • I appreciate your comment because you have sensed how it is for me. I am now in a state of “oh no, not again” combined with “you’ve done this before, let’s go”.

      However, I will await the next appointment with my surgeon in mid February before jumping to too many conclusions and I will have quite a yarn to my prosthodontist about it next Monday.

      You see I know of no other person who has gone through this because each of us has cancer in our mouths in different places & surgeries etc are depending on the professional team. It is not a service provided everywhere in Australia for what I have so I am very grateful for the innovations of my team.

      Denyse x

  5. The responsiveness of your team is so good. I’m sure you’d rather never have to talk to them, but in reality, they seem great.

    • Thanks Vanessa for helping me see it that way. I admit I am fortunate. What I was surprised about was my head and neck surgeon’s remark that it’s not cancer and me never even considering that. I think I may have buried that fact more deeply than I realised.

      Denyse x

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