Tuesday 18th December 2018

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

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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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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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