Monday 18th December 2017

My Cancer & Surgery #2. 2017.128.

My Cancer & Surgery #2. 2017.128.

I know I have written about the cancer I was diagnosed with on quite a few occasions. It still mystifies me, as it does the medical and surgical teams, how I got cancer at all. However, through the reading I have done – little via Dr Google – mostly from this site as recommended by my team from the Head and Neck Clinic at Chris O’Brien Lifehouse it appears that I have a rare cancer or at least it is most unusual one for me to get. I like don’t like that I am that special. 

The condition I was diagnosed with was squamous cell carcinoma in the upper gingiva. I have also seen it on the operation report as verrucous carcinoma upper alveolus. Whatever is the difference..and they are all contained within my upper part of my mouth it has meant a long surgery written about here and even longer recovery in hospital here and at home here.

WHY IS HEAD AND NECK CANCER DIFFERENT?
Head and neck cancer is incredibly complex and diverse. It includes more than 10 different cancers that can affect a person’s mouth, tongue, salivary glands, skin or voice box.

In the past, smoking was the most common cause of head and neck cancer typically affecting areas like the mouth, throat and voice box. However, today in Australia, many head and neck cancers are due to other causes. For example, the human papilloma virus is the most common cause of tonsil cancer, which is rapidly increasing in incidence.

Skin cancers on the face are mainly due to sun exposure and may extend to the eyes, ears, nose and salivary glands. For many other head and neck cancers, such as thyroid cancer, the cause is unknown. Source: Beyond Five.

I had been told following my first surgery that there would be two more surgeries to come. I was not happy about that but needed to accept that to get a ‘working mouth’ back it would be necessary.

I had a check up with Professor Jonathan Clark at Chris O’Brien Lifehouse on 10 October 2017 where he found all my recovery going well and no new issues with lymph glands  – there never had been any cancer found there but this was my first 3 month post-op cancer check. He said my next appointment would be to have a CT scan of my mouth to see how the bone (from the leg) with the added implant bases were settling, to see the specialist dentist at Westmead and then to wait to see when the second surgery might be.

The CT scan went well. The visit back to Westmead was fine now I knew the dentist so well and he is extremely kind and comforting. He explained how my future 2nd surgery would go and what would be achieved. OK. Done.

But when would it be? Before I had a chance to even think about getting mentally prepared for surgery in the coming days a phone call came from the Prof’s practice manager that it was to be DAY ONLY (what?!) surgery on Wednesday 15 November. So, that was something different. To go home on the same day!

We (ok, I) had a nervous drive to Sydney that morning, in peak hour traffic, leaving here at 6.00 am and arriving in time for the pre-admission of 9.00 am. Then my prep was fine and I was wheeled to surgery (same theatre as last time as it is where the Prof prefers to work) ready for 10.30 and there was a delay. I am not good with waiting. However, a trip to the loo, a chat to the anaesthetist and then to Prof and I was wheeled in at 11.30. I do not remember waking in recovery but I know I went OK and was back in the day surgery area feeling well (as you can after 2 hours surgery!) and by 3.50 pm ready to leave with my husband for the drive home. I was a good recoverer.

It might seem strange but for me the surgery in my mouth has never been well-understood by me. I say it is because I am spatially challenged AND that the changes are within me. So I have some troubles feeling what is going on in my mouth because using the tongue is always something that tends to magnify. I have also been in MUCH more pain than I recalled from my first surgery. So, on Day 5 post surgery the Prof wanted to see me and down to St George Private Hospital we went. It was a longer drive and on a not great day but I dealt with it pretty well and hardly did any front seat driving. My husband is a saint putting up with me.

A ten minute consultation (on time!) and we were back on our way home. 5 hours driving in one day. However, the Prof did not seem perturbed by my levels of pain and discomfort most of the time. I also cannot eat as well as I could (and that was limited then too!) after my first surgery some weeks down the track. So, I have been a relatively unhappy recoverer this time. Parts of the stitches on one side have come away, and some of the places where he put stitches feel strange. The purpose of this surgery was to open up part of the flap (the roof of my mouth taken from my leg) and inspect the condition of the 5 implants…which are WELL- EMBEDDED! Good news.

Then he and the specialist dentist put the abutments (screws) on the implants and added some skin from my right thigh to help the implants become adapted to my mouth. I am not explaining it well. Sorry. However, the added pain including nerve shooting types through my lip are driving me cray cray. I was so concerned I even sent the Prof a photo of the inside of my mouth. Can you imagine how hard that was for my poor hub to take?

I am sparing you these photos.

As I write this I have not heard back from him (yet) but I have sent more recent pictures today after his practice manager rang me. The thing I am finding (and have found since I first found out about the cancer in May) is that things are not well-explained AND unless I am ready with questions I get a very short appointment. We have been around surgeons a few times and know they tend to go in, do what they do, and go out again. I am hoping what I am feeling is normal. But it remains somewhat stressful for me. I see him again on 5 December and then the third surgery (I am not sure of its details) is scheduled for early February. But that could change I suppose.

UPDATE  1: The Prof sent me a brief email late Monday saying the photos of inside my mouth looked OK but to keep an eye on things and he will see me next Tuesday. My husband, who ‘gets what is going on in my mouth more than me’ is reassured that it is OK. Sigh.

I was feeling pretty low about it all on Saturday and it is hard. However as I write it is Sunday and I have managed to have a better day thanks to a regular intake of some food and medication for pain. I am somewhat better mentally now, Monday and have managed to eat something at meal times.

UPDATE 2: The nerve pain is likely to be coming from one of the implants my GP tells me and should settle. It is already somewhat (phew!) and yesterday I soaked in a bath for 20 minutes to allow the top covering of my donor site wound to come off and for the skin underneath to continue to re-generate and so far that is going well!

 

Have you had surgery?

Have you had cancer?

It can be so hard once you are home and there is no-one to ask. At least that’s what it is like for me.

Thanks for reading. It has been a LONG post.

Denyse.

Joining with Kylie for I Blog on Tuesdays and with Leanne for Lovin’ Life Linky on Thursdays.

 

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Comments

  1. OMG I’m so glad I didn’t know tonsil cancer was a thing before I had mine out otherwise I probably would have thought I had it seeing as mine were in such a bad way before the snip!

    I’m a terrible person at painkillers. I have still barely learned that you are told to take them for a reason (especially post surgery) and pain makes me a cranky (insert chosen “adjective” here). I did ok post-surgery in taking them but for headaches or other random normalish stuff in life I leave it too long and get cranky.

    One thing I did learn in a brief (neverrrrr to be repeated stint as a medical receptionist – the things we do for cash haha) is that most doctors are actually pretty good with emergencies so if you don’t hear, it’s because you’re not critical. And if the GPs as the not always great clinic I worked at were like that, then I’m sure a top notch team like you have would be onto you if they thought there was a problem.

    They used to send registered letters to people who (for example) hadn’t come back for test results so people would get them, freak out (understandably) and call the clinic expecting to be told bad news. I’d explain it’s just the doctor doing a duty of care thing, and that you’d get a call to come in ASAP if there was an issue.

    • Thank you Vanessa for your detailed and most helpful responses. I did hear from the Prof and he did not seem as concerned as me (that would not take much!) so I am Ok to wait till this time next week. Like Sammie has suggested and my husband too I am taking a list of questions to ask next week. I know the appointment will be short (they always are!) but with my hub having a better way of understanding what has already been done inside my mouth and what is yet to come I will rely on his memory too.
      They are good in the practice in that I can send an email and some photos. I just don’t like the fact that I get so concerned. It has been quite a jolt to my system getting cancer in the first place and the way in which my mouth is being reconstructed is a whole new thing for me to handle!!
      D xx

      • It is always a LOT to take in. That’s why I go with Ben to any big appointment (even with GPs) and take notes and lists of questions and copies of tests and all that. It’s too much in too short of a time for one person to manage. And it allows us to debrief together afterwards.

        It sounds totally reasonable to be concerned! I wonder if it’s a bit like papercuts – the fleshiness makes it hurt so much more than you think a small wound would:)

        I have no scientific basis for thinking this but sometimes I think bodies cope with larger things better because of the enforced rest that accompanies it – whereas when we can basically do what we did before after something minor the “but it’s not back to normal” feeling makes it feel worse. To a degree 🙂

        • Good thoughts there about the pain and how we perceive it. I was telling my GP last week of my surprise at this level of pain and he said “last time you were in ICU and hospital ward for 10 days before coming home” “This time, you were home to same day”.

          I guess I have a high expectation of myself too. I tend to take few painkillers as I dislike the effects and whilst I am no hero, self-care can be a challenge when you are still a bit unwell.

          I plan to have my list this time for B and me to ask the Prof. It’s just that we know it’s a very short appointment …they always are, except for the first which went for 2.5 hours…so we will need to cram it in.

          Thanks Vanessa, I really appreciate your insights from experience too. D x

  2. Sending you a huge virtual hug Denyse! It is so hard experiencing symptoms and pain and not knowing if it is ‘normal’ or not. All the best for your appointment on December 5.

    Ingrid

  3. Every time I read a story from you I am more and more amazed at your strength and ability to bounce back. Massive husg lovely lady

    • Thanks Nat. Very kind. I do have little meltdowns but they are far fewer in frequency these days. I sometimes feel down about the fact I have had cancer as the fear of recurrence in common in all cancer patients.
      I am learning lots about myself during this process and all the work I did adjusting to the major life transitions in 2015 and 2016 and earlier this year have enabled me to be a stronger and more accepting person..most days!! D xx

  4. Argh! I really feel for you, Denyse and although your surgery was so much more complicated than mine, I can empathise. I’m pleased you’re asking questions and that your doctor messaged you back. I get how anxious you can feel when you get home and also that I sometimes think surgeons forget about how much surgery hurts! I remember waking up from my second surgery barely able to move my neck or swallow and telling the prof, and he just said it was to be expected like business as usual! Have you been writing your questions down for each appointment? That always helps and if you don’t get the answers in person, then send your doctors a list of your questions, if you have written answers you can refer back to them. I’m sorry you’re in pain, because surgery is awful enough without feeling uncomfortable. I think it’s ok to give yourself permission to feel all the feels. You’re healing physically and emotionally. Big hugs for you xx PS Just remember that winter always turns to spring, it’s the law of the universe!

    • Thank you Sammie, if anyone is understanding this it is you. Had you any idea how much Head and Neck Cancers affect people..I don’t necessarily mean from the treatment but as I have read from the fact it is your appearance, your ability to communicate and your ability to nourish yourself. You have been through this too.
      Our appointments with the Prof are very short (!) but I do already have the list of questions. I can feel that areas of the bone and more have been shifted around inside and I wonder if this is where the nerve pain is emanating.
      Only a week to wait now. I can do this!! Lots of distraction happening to get me through. The outfits every day and going out for a coffee are highlights!!
      D xx

  5. Denyse, I cannot imagine how difficult this must be without plenty of information, it all seems so quick from where I am sitting. I would be struggling with that too. I do hope that you heal quickly from this round of surgery, and the pain is far less or even gone today. Much love xxx

    • Thank you dear Nicole. I know what you mean about time passing…it probably seems like that for me about when your house went on the market yet you are the one there day by day wondering.
      I do have some questions when we go to see the Prof next week as it will be 2 months from then until anything else happens. However, I am still in some pain but using distraction therapy like my outfits a day and going out for a coffee by myself to help. Thank you again for your loving wishes.. D xx

  6. I can imagine it must feel terribly isolating, Denyse, and I think doctors can sometimes forget that. Keep asking those questions and attending the appointments prepared, so you can get the info you need to get through. What a massive day that must have been with the driving and surgery. You must be completely and utterly exhausted. My husband’s friend recently battled cancer. He had his tonsils removed, part of his tongue and roof of his mouth. After intense sessions of chemo, he is now in remission.

    • Thanks Renee. It does and I get a bit worried and a bit frustrated and tend to want my husband to have all the answers…he gets a bit annoyed too when I overdo that so I have a lovely GP who helps a bit with my worries.
      I tend to think we put specialist in a special place and think they dont have time to answer this questions but this time around I will be getting some answers. Before my first surgery I had a lot of questions and the Associate Prof who assisted at my surgery answered them in a really helpful way. The head honcho – the prof doesnt have time for that as he is head of this cancer treatment clinic in 2 hospitals and operates at least twice a week.
      I am so sorry to hear about your friend’s husband but at the same time now happy to hear he is well. Such a BIG deal for that person and his family. Cancer happens far too often for my liking. D xx

  7. Having read through all of this, I can’t organise my thoughts enough to respond to everything I wanted to. So forgive me if this is a weird comment.

    I totally agree with you about questions and not getting much information unless you ask a lot of them. In my last pre-surgery appointment, I wrote a whole list of questions and so did Mr M’s mum (who took me and has been an absolute Godsend). I felt bad about firing all these questions off but they brought up lots of issues that I wouldn’t have thought about otherwise. The problem is knowing the kinds of questions to ask.

    How is your mouth now? I’m sorry that this round of surgery has been so tough on you. Being in constant pain is just the absolute pits. And those descriptions don’t sound like little things at all.

    • Thank you..it is not a weird comment at all. I am glad you have Mike’s mum to support you. I am annoyed with myself in some ways for NOT being as pro-active as I am normally with this Prof of mine. I sense it is because of pressure of time. He sees a LOT of patients and even if we do not have to wait it is a quick in and out. Next Tuesday I will ask one or two of the questions – because I seriously do not understand what is happening inside my mouth …I hear it but I do not ‘get it’. B will ask the rest and he is more understanding of the procedures. So, I hope I will feel more reassured.

      There is still a long way to go, I reckon I am only at the half-way point of reconstruction because when you take all of December and January out (like you know, Australia stops!) then it will be February before anything else. I just want NO complications nor reasons for more surgeries even though I know I have one to go.

      The mouth is better pain-wise when I do less talking (yep, me quiet. I know!) and only open it a little to eat from a teaspoon. It may improve over time..I have found this post first surgery. With a very patient and helpful,GP when I need him for a professional opinion I feel I am fortunate.

      I do hope whatever is next for you…if indeed there is…is something manageable budget wise and work wise but I do not hold out a lot of hope or joy on the first one. Sorry!!

      Thanks for taking this time for respond. I know you have your own health issues too. D xx

  8. I’m really feeling for you Denyse. That sounds like such an exhausting day, what with the surgery and the many hours of driving. I hope you are resting well at home now and you get the answers you are seeking at your appointment next week. #teamIBOT

    • Thanks Erika, it was my GP who said ‘last time you stayed in hospital to slowly recover’…this time you were back home on the same day. When we are at home we tend to do the normal things more and whilst this is a good thing we may not rest as much. After a couple of days I gave myself permission to do this (after enjoying my previous independence) and it helped. Today the pain is reduced and I am hoping it stays that way. Thanks again. D xx

  9. It must feel very scary and I’m so glad it’s already settling. It’s HUGE what your body is going thru, so time must really be drawn out, waiting for change (recovery). I’m glad it’s all going well so far!

    • It is for me as someone who tends to be ‘default negative’ anyway. Luckily I have my husband on side to even me out. I admit to being ‘less scared’ now about some things but as I have read once you have been diagnosed with cancer, even if it is totally gone, you “live with the fear” of its return. Nevertheless I have complete faith in my surgeons but I need to be better informed about what is next and my hub will be armed with the questions and hopefully I will feel more secure about ‘what’s next’. Thank you so much Lydia for your kind words and support through this, it means a lot. D x

  10. What an incredible journey you’ve been on Denyse. I can’t being to imagine what this all would be like. The interesting thing is that the doctors are somewhat apathetic when it comes to the post-op pain. I recently had two dental implants put in my mouth and I was in a world of pain so I feel for you. I’m still not eating properly after 10 days and the swelling is still evident. But this is only small compared to what you’ve been through. Keep strong and make sure you take your pain meds. #TeamLovinLife

    • Thank you Kathy. It was interesting for me after the first op that the pain was not huge and I could manage with panadol only. The ICU ‘pain’ team asked why I wasn’t pressing the button & I just said because it is not that bad. I am pretty good with pain generally as long as I know why and what to expect but of course, surgeons don’t specify other the anti-biotics so my GP was my advisor. He has been the best!
      Interesting to read about your implants. Ouch. I do have some pain, as I said, but hopefully by the time the implant teeth are ready, the bone with the implant bases and now the abutments will have settled more.
      I do hope you feel better soon. Mouth pain and not being able to eat properly is something I am too familiar with. It was like this before the surgery too. Sigh.
      Denyse x

  11. You have certainly had a huge year Denyse but have maintained your strength and dignity throughout. Keep strong and know how you are teaching us all to realise that life can be tough but then we can be tough as well. Take care. x

    • Thank you Sue. I just did what I had to do but I did it with lots of moral support too. Without knowing what was ahead all my self-development and understanding about the transitions I had gone through helped me well as did my husband, local GP and the psychologist I went to this year and last. In the end though we do it alone and I was glad for the resilience I did not know I had!
      Denyse xx

  12. I never knew that HPV was responsible for cancers other than of the cervix. The things you find out. I must say I think I’d find it exceedingly frustrating to not have things explained to me. I know some people don’t want to know, but I find it impossible to get my head around things unless the questions are answered. Happy Birthday!

    • Interesting about HPV isnt it? I am now realising why they want both boys and girls in HS to have the vaccine. In my ignorance (until this diagnosis) my dentist would say “oh let’s hope it’s not HPV” I thought..sure, what did he mean? Knowing it is something virtually incurable and the nastiness it does to bodies inside and out I WAS immensely fortunate for it NOT to be part of my diagnosis. Phew. D xx

  13. You still amaze me Denyse. I know you get anxious and scared but you are incredibly brave with such a positive mindset, despite your harder moments. I’m so sorry the second surgery has caused you some pain and discomfort. I am hopeful that once all surgeries are over, it will all be worth it to be cancer free and to have your mouth and smile restored so that you can feel yourself again and carry on enjoying life. And … HAPPY BIRTHDAY!! xo #TeamLovinLife

    • Thank you so much Min. It’s lovely of you to notice and tell me what you observe. My husband thinks I bounce back much better than I used to so it all helps. I too hope that next year (sometime!) I will have a mouth I can chew with, smile with and of course TALK!! Hope your dad is going as well as he can. What a time it has been for you. Denyse x

  14. You’re doing SO well Denyse, I have a dental background and I can understand most of what you have going on, but it’s still a huge undertaking and quite a rare occurance. I hope you continue to heal well and you’ll be so glad to have those implants down the track – they make things so much more stable than a bridge or a denture (they tend to wobble or feel loose at times). Your updates are really helpful because they tell it as it is and that’s a good thing for people who may end up in hospital down the track.

    • Of course you would have the understanding. I know I am ‘rare’ and that is not fun. I have been saying to dentists for over a year “I think this might be cancer”. No, they said because cancer presents like this and this…So really from my last birthday I reckon cancer was present. I had a biopsy on a white patch in my mouth mid 2015 and it came back as ‘candida’. My now dentist says he always thought that was a bit ‘suss’. I am going to ask him more next time. I know I cannot undo what happened but I like to know the whole story!! Thanks again for your unwaivering support. Denyse x

  15. You’ve had such a tough time, and it’s only natural that you think the worst, especially when there’s pain involved. I think you’ve being unbelievably strong and teaching us all so much about being open, but gracious and courageous when facing uncertainty about health issues. When I was diagnosed with a melanoma I can remember crying into my pillow so hard becuase this was the first real time in my life when I was faced with the notion that perhaps a long and healthy life are not ‘givens’. Since the day it was removed, I’ve lived every day as hard and fast as I know how. Any kind of cancer diagnosis is scary, but you’ve been through such a lot. Stay strong. You are by the way, looking lovely 🙂 from all your fashion Instagram pics!

    • Oh Jo, I did not know about that diagnosis. Very scary! The way I described hearing (on the phone from the kindly oral surgeon who did the biopsy) about my cancer being present was being shocked but not surprised. That was because the gums had been bothering me for at least a year. Sigh. Oh yes, the first days are horrid but then, isnt it amazing, the scary times kind of melt into your life and you get on with it.

      I don’t know that treatment you had but I felt almost ‘guilty’ that mine was ONLY surgery…(mmm) and no radiotherapy or chemo and that it was highly likely the cancer would be contained within the gums..it was but there was some spread to the jaw bone. All were taken out with the usual margins and no lymph glands affected. I have been fortunate even though my recovery is likely to go on well into next year.

      Still, once diagnosed you never forget that cancer has been part of your life now. Thank you for sharing your story too. D x

  16. I’ve had chronic nerve pain on other parts of my body & found it more painful than any other pain i’ve felt before, and taking into account how sensitive your mouth is, you must be going through hell right now. Having a much shorter surgery and being allowed to go home the same day, i;m not surprised that you were not prepared for the volume of pain that you have. I found magnesium was brilliant for helping with nerve pain, maybe it’s an alternative option for you? Like you, I cant stand not understanding what is happening to me and am like a dog with a bone until I do. It might be helpful to send your specialist a copy of the questions you want to ask so that he can come prepared and have a better understanding of how you are feeling. You are doing amazingly well Denyse.xxx

    • Nerve pain is the worst, I agree! I had some in one arm in 2015 and couldnt settle myself anywhere comfy. It stopped my art and my blogging and no medication could help it literally was a matter of time passing and it went.
      My mouth is more settled as I write so thank goodness for that.

      I have taken magnesium before but I am OK. The panadol and ibubrufen (one each) after food 3x a day is keeping me comfy now.

      Your story sounds the worst. My husband has neuropathy of no known origin although he is convinced it is emanating from the spine where he had surgery many years ago. He cannot feel parts of his body yet they appear, for him to be very hot. He is on Lyrica x day and that helps.

      Thank you for your helpful comments and support. D x

  17. Do you remember that William Hurt movie, The Doctor I think it was called? He was a specialist who got cancer and was confronted with how badly he was treated and it made him realise he’d been like that as well.

    I think it’s really hard to comprehend what you’re being told and having the opportunity to ask questions later / have contact details for follow up questions is vitally important.

    Also, I keep forgetting to mention that I realise this must be doubly hard for you having to constantly travel. I know my folks had to do that and I used to meet a lot of rural and regional people during my dad’s heart treatments and cancer treatments. It made me realise how much ‘city’ people take for granted in that respect. xx

    • I do remember that movie! It was so interesting that you remind me of it too. Yes, if most medicos dealt with what their patients go through then the world of health might be a more caring one.

      I have listened to When Breath Becomes Air, the memoir that Dr Paul Kalanithi wrote (but did not finish, his widow completed it) and it was one of those where the dr becomes the patient.

      The whole reason for Chris O’Brien Lifehouse coming to fruition was the fact that the head of RPA Head and Neck Team, Prof Chris O’Brien got brain cancer in the early 2000s and it frustrated both him and his wife that there was no “one stop” place for cancer patients that could ease their burden. He put it to then PM Kevin Rudd that this should happen and it did. There is another one similarly in Melbourne.

      Yes the drive to Sydney is a full day out…we would rather not have!! However, B is happy to drive me and I like that support then and at the appointments etc. If we still lived where we did in Sydney it would still mean an hour’s drive in. We did stay that one time near the hospital for my early admission and hated it. I also found it very hard getting up at 5.15 am to leave by 6 am to travel on the very busy and often delayed freeway to Sydney and then peak hour in Sydney to be at the hospital by 9.00 for surgery at 10.30. It made me more stressed about the drive than the surgery. Next time, because we know there will be one, we are staying in a one bed apartment down from the hospital the night before.

      Something I never knew about till this cancer situation is that as residents of a regional area more than 100kms from my treatment centre we get a car allowance and an accommodation allowance. We had our first claim met so that helps.

      Thanks Deb always for your kindness and support. Denyse xx

  18. You’re doing so well Denyse. Continuing to cheer for you from the sidelines. #teamlovinlife

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