Wednesday 18th July 2018

Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Are you a planner?

Are you someone who is pretty well organised ahead of time for: birthday cards to be sent, lists for shopping to be made, appointments made and kept…and attended…should I go on?

Well, I am.

It is part of my DNA I reckon!

Yet, as I wrote here only last week, there I was saying I was becoming used to uncertainty.

That was Tuesday.

On Wednesday  28 March 2018 I got an inkling things with my cancer recovery were not going according to MY* plan. That is, what I reasonably anticipated given the information I had prior to each surgery and after it. OK, I admit it: once I hear a time frame I tend to believe it and stick to it.

Do Read on.

What Plan Did I Have?

Not for the year I mention..but you get what I mean!

A linear, calendar one of course! That’s how I have been used to life moseying along. I know, I am supposed to have embraced uncertainty but I admit, like 99% of us humans, I am digging the certain …the plan….the ‘being sure’.

  • 17 May 2017: Cancer Diagnosis Received by a telephone call from the Oral Surgeon who took the biopsy the previous week.
  • 18 May 2017: Meet With Head & Neck Surgeons at Chris O’Brien Lifehouse* Camperdown in Sydney for Overall Diagnosis and Plan For Radical Surgery.
  • 24 May 2017: Meet with Prosthodontist at Westmead Oral Services who will oversee and make all to do with my ‘newly reconstructed mouth’ during and post surgery.
  • 30 May 2017: Second Visit to Prosthodontist and CT scans readying my Professional team to make decisions about parts of my leg to be used for reconstructive surgery in my mouth.
  • 6 July 2017: Big Surgery: #1. 11 hours.
  • 6 July-15 July 2017: Recovery in Chris O’Brien Lifehouse.
  • 15 July – 27 July 2017: Recovery at Home, Treatment of Leg Wounds by Community Nurse, Visit to Surgical Team, A/Prof Ebrahimi and Justine Oates – Head & Neck Cancer Nurse Specialist.
  • 28 July 2017 – 21 September 2017: Recovery at home, visits by Community Nurse decreasing and in mid August I began driving again as ‘boot’ on leg was off. Independence increased.
  • 21 September 2017 – 9 October 2017: Continued wellness returning, eating always a challenge but doing what I can to prepare meals for me, seeing our GP for support (from July actually!) for any concerns I had inside my mouth. If he had any concerns, I could contact Prof Clark.
  • 10 October 2017: Visit to Chris O’Brien Lifehouse to see Prof Clark. Told 2nd Surgery would likely be before Christmas.
  • 11 October 2017 – 5 November 2017: continued independence and back into life as best I could. Started my Outfit of the Day pics!
  • 6 November 2017: Visit to Westmead for planning for next surgery. I admit, I often do not exactly understand the ins and outs of my surgeries… even though it is well-explained. I sometimes have to ask my husband about it. I blame being spatially-challenged and that it is all happening inside my mouth! 
  • 8 November 2017: Phone call from Prof Clark’s Practice Manager, Julie who is awesomely patient with ME that my 2nd surgery is next week! OKayyyy. And it is a day surgery only.
  • 15 November 2017. Leave the Central Coast at 6.00 a.m. to get to COBLH* by 9.00 a.m. We made it. But I confess my anxiety was high and tears on the Harbour Bridge in peak hour traffic were evidence of that. Surgery around 2 hours at 11.30 and we were on our way home by 3.
  • 15 November 2017 – 20 November 2017: Recovery at home. More stitches and re-arrangements in my upper mouth was OK. Pretty painful as nerves seem to have been affected by it did recede. But, a skin graft was taken from my right thigh to add extra skin inside my flap to grow to help my upper lip reconstruction. Visited Prof Clark at St George Hospital. I was going OK but one side of the opened then stitched ‘flap’ was showing some silicon (should not have) so “keep an eye on it”. We did.
  • 29 November 2017: weird but wonderful event. I could have a LONG bath…previously I could not get my leg wet…and over time in that bath, undo the bandage and let the wound covering get wet. It did, and I did this over the next few nights. Until, it eventually came away leaving pink new skin.
  • 5 December 2017: To Prof Clark at COBLH. The flap area did keep retreating somewhat and the silicone was showing. Prof Clark cut a bit off. Then he asked my husband to take pics inside my mouth and send them to him from time to time.
  • 6 December 2017 – end of December 2017. I admit I was worried about the flap and what that might mean but Prof Clark eventually said, things are OK and you can stop sending the pics. Phew. It is VERY hard to get pics inside the upper mouth!
  • January 2018: Just the usual at home activities and going out for a coffee & buying clothes (shh).I knew a 3rd surgery was ahead but unsure when. However, it was to my surprise that I found it would be on 7 February 2018.
  • 6 February – 7 February 2018: No drive down on the day of surgery this time, meant after an overnight stay in the same street as COBLH I could walk with my husband up to Day Surgery admissions by 6.30 a.m. and was in theatre by 7.30 a.m. having said hello to Dr Deshpande (my Prosthodontist) and being blown a sweet kiss from Cate Froggatt who is the Chief Nurse working alongside Prof Clark.
  • 7 February 2018: Back in Day surgery by mid morning and got dressed to go home. Was sporting two foam pieces with stitches attached out of my nose, above my lip…that WAS a surprise. Mouth was its usual uncomfy place but with added hardware. More abutments had been added to my ‘new jaw’ and a stent (mouth guard) covered it all. OK. Hard to get used to. It was uncomfy and eating even more of a challenge.
  • 14 February 2018: a hot and long drive to see Prof Clark, and the helpful Priscilla looking after my IPTAAS forms, and then chatting with Cate about my blog. She had read it and was recommending Nadia at Beyond Five check it out. My foam pieces and stitches came out. Yay. Sent home knowing then I would not see Prof Clark again till a cancer check on 22 May 2018 but would see a LOT of Dr Deshpande.
  • 23 February 2018: to Westmead where Dr Deshpande’s colleague (who had also attended my surgeries) Dr McLachlan removed the very stinky stent. Dr D had a broken hand so my mouth was observed by him and anything that needed to be done was by Dr McL. They were so pleased with the health of the gums, they said I could have the stent off. Cue smiling and hallelujah!
  • 26 February 2018. Disappointment but Prof Clark deemed that the stent go back on. For the reasons of keeping the gums in check. I needed to remember this is about getting my mouth right!
  • 1 March 2018. To Westmead and both Dr D and Dr McL observed and cleaned the area and put the stent back with gel only. NO gauze.
  • 1 March – 6 March 2018. In pain. A lot. Where the stent met my inner cheeks. I rang Dr D and he told me to return the next day.
  • 7 March 2018. Dr D reduced the edge of the stent and it was back on and I was in much less pain. Phew.
  • 15 March 2018. To Westmead where stent was removed for impressions to be made for the ‘false teeth’ to be made in wax to get an idea of how my smile and position of upper teeth will appear. At this visit, Dr D reiterated his concern that my mouth is too tight to take the implants.
  • 28 March 2018. To Westmead where the fruits of Dr D’s labours in the time since last visit had me happy (after some initial reservation) to see my smile again.

So what has happened since last week is that on Thursday before Easter, I was told by Dr D (after my phone call from Prof Clark’s Priscilla booking me in to see him early May) that in consultation with Prof C, the fact that my mouth was too tight would mean a 4th Surgery on 16 May.

I was sad. I was a bit over it all but I also knew deep down this was probably going to happen.

What now?

12 April 2018. To Westmead to have my upper false teeth fitted to the abutments for me to get used to the teeth in my mouth for the next month. I am unsure that they will help me with eating but we shall see. I am certainly pleased that Dr D wants me to try these teeth as he believes there is a social benefit too.

1 May 2018.  To COBLH to see Prof Clark, wearing my ‘new but temporary teeth” and for him to check out the area ready for vestibulplasty #3 and surgery #4.

16 May 2018. Planned Day surgery. We will come down and stay the night before. From what I am told by Dr D the plan will be for me to recover for 10 days at home (with the potentially stinky gauze under the new stent. Sigh.

22 May 2018. Post- op Check up at COBLH with Prof Clark. Hopefully all is well and any stitches that need removing are. Unsure if I will be wearing the foam blocks again.

Late May 2018: Westmead for stent to be removed, gauze taken out, area cleaned and impressions made for …the implants. Eventually I will have the implants but it will depend on the healing.

May into June 2018: Keeping the stent in all the time with visits at intervals to Westmead.

June into July 2018. As above, with a view to impressions and so on for implants.

What have I learned about planning and cancer?

  • That each person’s body heals at its own pace and it may not always be what the optimum is.
  • When I learned about the surgery I would be having, in May 2017, it was set out that from surgery (it ended up being in early July) to implanted teeth, is usually around 8-9 months.
  • What is my forecast now that a 4th surgery is planned?
  • It is close to 12 months from the first surgery.
  • In fact, this 4th surgery will be one day short of the anniversary of the day I was diagnosed.
  • I accept that I have the best people caring for me who have my best interests at heart.
  • I accept too, that despite my planning and the fact “I do all I can to heal well” sometimes bodies do what they do.

Last Wednesday was a highlight of HOPE. I think every cancer patient wants HOPE.

Mine came unexpectedly when I saw myself SMILE again. It was better than I ever imagined.

In light of my selfies and all the record-keeping I have been doing in processing who is this Denyse now…I made a small video of my face…and smiles and more from my 65th Birthday to last Wednesday. It is good for me to see the progress. I hope you can check it out too.

I know this was a long post and if you read all the way, thank you!

It was helpful for me to write it and to make the little vid.

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays here.

Joining with the linky called Midlife Share the Love with Sue and Leanne here on Wednesday.

And lastly but never least is Leanne’s Lovin’ Life link up on Thursdays here.

 

 

 

 

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Comments

  1. After reading this post, I am in awe of you and how far you have come and watching that video, I can still see your smile at the end (albeit a little less toothy – although that’s a situation that will be rectified soon!) – it’s the essence of you! I’m so pleased you’re in such good hands and hope healing is as fast and painless as possible.

    • Thank you Sammie. It was a post I HAD to write as it helped me understand how far I have come..and even with more to go than I expected, it will be OK. I am glad you looked at the little vid too. Meant a lot.

      Denyse x

  2. I hope it all goes well and you get the best result possible.

    • Thanks Trish, I felt a bit “oh what have I got to complain about” before I wrote this but then it is a valid thing and I did need to write. The blog is proving to be most helpful for this!

  3. I like to think I am organised but I book things into my diary and do not think about them until the week before it is about to happen… and that includes overseas trips. That’s where I fall a little short

    • Ah that is interesting to know about you Natalie. I am an over-planner and preparer from a LONG way back. When I did my first (and only to date) OS trip I had my bag partially packed for ages and even did a practice airport run!! Denyse x

  4. I can feel the roller coaster you’re feeling in this post. It sounds both a mix of amazing and frustrating what they are able to do these days. It’s true that healing is just so person by person …

    • Thank you for understanding it so well Vanessa. I was disappointed hearing about the 4th surgery but as my prosthodontist said ‘it has to be perfect’ for the implants. Sigh. I know!!

      Denyse x

  5. I hope your upcoming surgery goes well Denyse. I can totally relate to being a planner and having a specific way I want everything to go. This journey must be so hard not being able to control the outcome, but I think you’re handling everything so well and I’m sure sharing your story here on the blog will not only help you see how far you’ve come, but will also inspire others on their own cancer journeys. #teamIBOT

    • Thanks so much Toni! You have learned a lot in the past year or so too with your new baby girl.
      I have been going pretty well with some of the uncertainty but the ‘low blow’ was knowing a 4th surgery was happening.

      It actually isn’t the surgery itself that bothers me, but it is the recovery as I found that tedious and a bit painful…and then of course, hoping the skin inside my mouth behaves so the longed-for implants can happen.

      I guess, as a planner, I did not see this taking a YEAR!!

      Great to see you back commenting too! I hope both the girls are well.

      Denyse x

  6. You’ve come a long way, baby! I hope the surgery goes well and I am in awe of how well you are handling everything!

  7. You have come so far haven’t you Denyse and I am always inspired by your attitude and the way you have been coping with all the ops and visits to the Doctors and Specialists. Thanks for sharing your story of HOPE with us at #MLSTL. We can all do with hope even if we aren’t ill. Have a beautiful day xx

    • Thank you Sue for your on-going and caring support since my cancer diagnosis. My on-line community is a such a part of my healing and this space is proving to be most helpful to me.

      I have been approached by the two organisations in Sydney who are part of my care and health: Chris O’Brien Lifehouse and Beyond Five, to have my story profiled on their sites.

      Having my posts in one spot at the top of my banner helps anyone who wants to know more about the story of “this” cancer which I had never heard of till 17 May 2017. I have not seen nor read of anyone else’s experience similar to mine.

      Thank you for the linky too.
      Denyse x

  8. Oh Denyse, that sucks that you have to have another surgery, but I’m so glad you have such good doctors who are making sure that everything is absolutely right before proceeding to each next step xx
    #teamIBOT

    • You summed it up well. I was getting hints it was going to happen but even when I got the news I was a bit teary.

      Mostly because I “was” hoping I would be getting back to my life via “my forecast timeline”.

      It is very tiring driving back and forth to Sydney and spending up to 3 hours in the dentist chair. However, I accept that I am fortunate to be able to drive myself now and I have some of the best professionals caring for me. And they do care! It is nice. The last photo in my vid was taken by my prosthodontist and he sent it to me and it helps me “see” a future. Should see the camera they use!!

      Denyse x

  9. I’m a planner too Denyse (so much so that I realized I’d missed your Monday link up and was devastated!) Things rarely go exactly to plan, but that doesn’t stop people like us lining up our ducks and trying to herd them along in the right direction. I’m sorry you have another op to plan for – it would suck when you thought there was light at the end of your tunnel. I might have another op to look forward to before the end of the year – that will be three for me in 2018 – not in my plan at all!

    Thanks for linking up with us at #MLSTL and I’ve shared this on my SM xx

    • Oh we cannot get our bodies to behave based on our will and wishes can we?

      I knew, deep down, as the appointments with the prosthodonist continued that I would likely be in for 4th surgery.

      Essentially it is a repeat of what I had done in Feb and the skin has tightened so much in healing, no implants can be even considered. But I am still getting false teeth to wear for a month – they will be attached to the abutments next Thu.

      Thought you would like to know, that thanks a comment I left on a person’s social media site, a dentist got in touch with me after reading the blog and she told me she does a ‘cancer’ check for every patient now and it bothers her she might miss something.

      Denyse x

  10. You have been through so much, your video was revealing of the pain and discomfort that you have had. Such a beautiful smile, I was glad that the last photo showed your smile back in place.
    All the best to you as you continue to recover.

    • Thanks so much Kathleen, that last photo was taken by the prosthedontist who worked hard for my ‘smile’ to return, albeit temporarily, and he was thrilled too that he ‘got it right’.

      After telling me I would need the 4th surgery, he kindly sent me this photo taken as one of many on his professional camera.

      It fills me with HOPE!

      Denyse x

  11. I read the entire post Denyse and felt your pain and your indomitable spirit. You are so amazing. That last smile on March 29th, in the video was a triumph and I was delighted to see it.

    • Thank you so much Kalpanaa, your comment is both encouraging and kind.

      I so appreciate you viewing the little vid to the end!

      I did not realise how much I would miss my smile until I saw it again on 29 March!!

      Denyse x

  12. It’s been a long road that you’ve travelled. Bumpy and not at all comfortable. But you are in sight of a smile and hopefully a clean bill of health. Keep going. Keep being strong. You are an inspiration to so many of us.

    • Thanks Jo, that is most kind. I am almost sure that the cancer was taken as the team told me at the first surgery back in July. All that I have been having since is the internal re-construction to release certain areas, add some more skin to fashion a lip and make the space implant-ready.

      It was my mouth which has healed very tightly that is the ‘problem’ and why the team need to repeat the surgery they did in Feb. For me, I “know” what is ahead recovery-wise and it is not great or pleasant but I know what to expect.

      Appreciate your lovely comment.
      Denyse x

  13. Wow!! You have been through so much and come SO FAR!!! Love that smile!!

  14. Oh Denyse what an inspiration you are! You have a lovely smile and I wish you well in your next stage to come. Although it might not be what you wanted please know you are very brave and I feel for you as you go through this. Take care and stay organised 🙂

    • Thanks so much Debbie. I never really feel like I am an inspiration but it is so lovely when people tell me this. I was thinking tonight that even though I might not ‘want’ this next surgery, I sure am going to need it to achieve my eating, smiling and talking goals, so I need to trust my professional team because they know best and get on with it!

      Denyse x

  15. You sure have come a long way. Loving the smile & trusting that food won’t be too far away 🙂

    • Thanks Jo, hiccups of the emotional and physical kind during the house move which raised my fear level for the next surgery…coming on the day before I was diagnosed with cancer in 2017 I am ‘feeling all the feels’ and need to settle my emotions (somehow!). Now that we are in the new rental I hope to have more time to get over the move and prepare mentally for what is next.
      Denyse x

  16. I am in the medical system for a number of family members, and what I’ve learnt it you can plan beyond the immediate thing (ie pretty much day to day). You can only deal with ‘one thing at a time’ even though there are a lot of things pending, so if that means you only look as far ahead as the next hour or that afternoon, so be it. You will be too overwhelmed and whatever plan you made for the week ahead may be totally altered by the next conversation you have so don’t waste the energy. On the positive, once you’re in it, it’s okay. Your anticipation is always worse than the actual, even if the actual is horrendeous. Good luck to you as always lovely lady. You’ve been kicking arse so keep that chin up!!!!

    • opps, you CAN’T plan ahead. That was freudian!

    • Yes Lydia I “know” that intellectually but when my feelings get knowledge of it all, things can go a bit pear shaped.
      I was ‘ready’ for this house move we have just done. It is our 3rd in 4 years and one thing I KNOW I need is security of tenure and that won’t return until we can buy something for us up here. Sigh. Not yet.
      On the day of the move, I overdid things physically as I had been racing back and forward between the two houses (only 6 mins away) with loads and off-loading. Then BOOM. IBS struck and I went nowhere except downhill emotionally and today I cried on and off for most of the day.
      I am my own worst critic and try to be kind to myself but I need to allow myself to be ‘off the hook’ from the shoulds and this is taking TIME\.
      Your kind and understanding words are much appreciated…and good on you being the carer/helper for your family members.
      Denyse x

  17. Have been thinking about you. Sounds like you are in the best hands and they aren’t prepared to cut corners. I had to ‘sack’ my health team earlier this year. It means new specialists and new doctors and all the stress that comes with that. I’m usually one to plan. My attempt at trying to control the uncontrollable. This time though I’m too exhausted for my usual keeping busy approach.

    • Oh Raych I do feel for you as your journey has been long, intense and very challenging. I thought my surgery was done and dusted and admit I feel like some kind of failure even though this is so not my ‘fault’. Anyway, finding my 3rd house move in 4 years more challenging over the past 2 days thanks to IBS and the impending surgery. But, I am feeling slightly better 48 hours since we left the ‘old house’. Renting will always be something I do not relish and one day will be pleased when we do have some more money to actually purchase something. Probably not here now the Sydney market is slowing, the Central Coast is booming! Denyse x

  18. You have had quite a journey and more to go ahead. God bless you and help you get it all fixed.

  19. Oh Denyse, I can understand your disappointment that you now need another surgery after having the excitement of trying the new ‘false’ but fabulous teeth. You will have those teeth and a wonderful smile and be able to eat properly again before too long I am sure. Meanwhile, you are incredibly resilient and brave and inspire me every day. xo #TeamLovinLife

    • Yes Min, I am disappointed and a lot of my courage has gone by the wayside about my recovery knowing I have to face basically a repeat of two surgeries in one. Another skin graft and cutting open the ‘flap’ which is the area between my ‘new jaw’ and the skin which is too tight. I am less concerned about the smile and the food right now as my IBS decided to return yesterday in time for the house move so I am hoping that emotional side can settle a bit more. I won’t lie, it is hard facing the surgical recovery again. Thanks for your kind and understanding wishes. Denyse x

  20. My goodness Denyse what a long and arduous journey you’ve been on. Hopefully the new plan of attack will be successful and before you know it you will have some teeth to eat with. I can imagine your frustration with the entire process. Keep going – you’re doing a great job. #TeamLovinLife

    • Thank you so much Kathy. I have had a difficult time over the past two days with the house move as I had no inkling just how my emotional health would impact me when I ‘over-did’ things! Who knew! Anyway, I am being as kind as I can to myself and after a day or so of some tears I am sure it is the emotions tumbling out…as they need to! Denyse x

  21. Denyse, I’m glad you wrote it all out, it helps me to understand what’s going on. You have a beautiful smile, before and after, and I can see in your eyes that you are happy with the results so far. I pray the rest of the ‘stuff’ you need done goes smoothly.

Denyse values & reads every comment written, thank you. There is always a reply.

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