Tuesday 25th June 2019

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

I recently wrote Part One of the Anniversary of my cancer diagnosis here.

The second part is actually a bit harder to write.

I am grateful of course for my cancer being taken via surgery but I seriously had no idea that to recover and be implant-ready would be up to and well over a 12 month period. This is because, as I understand it, bodies heal in different ways and react like that too. I also know that this mouth reconstruction of mine necessitates a lot of work by the multi-disciplinary team of medical, allied health and dental experts.

I am ever-grateful for this team.

With Prof Clark & Cate Froggatt, Clinical Nurse Consultant & Surgical Assistant

I know that my Professor Jonathan Clark  leads the Head & Neck team and he is also working with the training of other doctors just as he learned as a resident with the late Professor Chris O’Brien at Royal Prince Alfred (RPA) Hospital. From the Westmead Oral Sciences comes  my Prosthodonist, Dr Suhas Deshpande and his colleagues including Dr David LeinkramDr Matthew McLachlan. Dr Deshpande’s Nurse, Ofelia has seen me through some emotional times and is a very kind person. Norma at the reception desk at Westmead Oral Sciences always has a smile for me and a welcome that’s bright.

Associate Professor Ardalan Ebrahimi was the first person I saw on May 18 2017 and who examined me and put together, along with Professor Clark what would be my BIG surgery in July 2017. A/Prof Ebrahimi was kind enough to respond to my 2 detailed emails pre-surgery and saw me post-surgery in 2017 along with  Justine Oates Head and Neck  Nurse Practitioner who re-dressed my wounds and ensured continuity of care once we were back home on the Central Coast.

In my 10 days post Surgery #1, I was cared for by a number of professional nursing staff firstly in ICU with Dr Tim  then on Level 9 North of Chris O’Brien Lifehouse where Jason was the NUM. I will single out registered nurse Roan as he cared for me most early mornings and made sure I got out of bed to get some sunrise shots!

From the Head and Neck team who were part of my first surgery was a team of doctors including Dr Laura Wang & Dr Rahaul Jayaram who saw me most days in hospital.  Allied professional staff  at Chris O’Brien Lifehouse were physiotherapist Leah ensured I could walk post July surgery after fitting my right leg with the boot, dietitian Jacqueline gave me lots of guidance for eating post mouth surgery and the speech therapist Emma made me drink a cup of water (ahh!) and speak ( not a hard task given my propensity to talking!) to ensure I was going well before leaving Chris O’Brien Lifehouse last July.

I thank the wonderful anaesthetists and anaesthetic nurses who ensured not only that I went to sleep  but that I woke up with no dramas. One was Dr Murray Stoken and another is Dr Paul Goonan. On 16 May I was cared for by Dr Stephanie McInnes. 

Of course I have the excellent and fabulous Cate Froggat, my Clinical Nurse Consultant & Surgical Assistant who is the gentle and smiling person looking out for me in the operating theatre and in post-op consultations.

How could I not mention Julie and Priscilla…a hug and smile each time I see them, those who keep all of us seeing Professor Clark organised with compassion and care.

Once I was home, as I have outlined before, I was also in the care of the Central Coast Public Health Community Nursing Team for around 2 months and Eileen was amazing with her knowledge and advice.

My dentist Dr Alistair Brown saw me for a mouth check last October and to clean the remaining ((and oh so important to me) 8 bottom teeth. He was the person who initially referred me to Dr Stef Calladine, oral surgeon,  who did the biopsy last May and broke the news to me over the phone that I had squamous cell carcinoma. I will always be grateful for her caring manner and more importantly for referring me to a place I had heard of called Chris O’Brien Lifehouse and to a specialist I had not, Prof Clark.

My GP. Dr Owen Greene. What a caring and understanding man he is. I saw him sometimes up to 4 times in a week when I was recovering from BIG surgery #1. He reassured, he checked on me and he continues to do so, letting me know you are doing really well. His office staff and pathology people ask how I am going tooIf I pop into the chemist next door, Tim the pharmacist is always asking how I am going too.

There are those that I cannot mention all by name but have been integral to my diagnosis, surgeries and recovery times:

  • staff at the various Imaging places in Sydney and on the Central Coast
  • staff at the Admissions Desk and Pre-Surgery Desk at Chris O’Brien Lifehouse
  • the nursing staff pre- and post-op in the recovery areas
  • my psychologist from the READ clinic in Erina saw me a couple of times and was most kind in her assertion that I was doing well without any more need for her services.
  • the social media account for Chris O’Brien Lifehouse @chris_obrien_lifehouse & the art programs at COBLH @arterieatlifehouse (Instagram)
  • those lovely people who welcome me to their coffee shops like Randa at Fibonacci Wyong  and ask after me, along with my fabulous hairdresser Tiffany, our great podiatrist Sean who came to the house to treat me when it was easier for me, and our Property Manager, Naomi, who was delighted to see me recently. Kyla who makes the most delicious cupcakes always asks how I am going when we catch up. In fact, I won a generous voucher recently and as cupcakes are something I CAN eat, this is just the best!
  • the Beyond Five Organisation: Nadia for her reaching out for me to help with publication of my story written by Kirsty. Check my photos here to see the fundraising ribbons. World Head and Neck Cancer Day in July 27. I wear my ribbon and blog about Head and Neck cancer because not many people know about this cancer. I do now!

Then definitely NOT last nor least are my friends and family. Those who connect on-line too. My blogging friends, my instagram friends and those from Facebook and Twitter. I love connecting!  To know of so much love, concern and care being out there for me after the diagnosis and through recovery in the year it’s been is marvellous. Thank you for reading my posts, checking out my Instagram pics and ‘liking’ the blog Facebook page.

Each day in 2018 I made a commitment to myself to do at least these three each day:

  • get dressed in an #outfitoftheday and go out – for a coffee, a browse, a shop or just to look at a view
  • go into nature or observe nature and then capture this in a photo
  • make something creative, be it a mandala or a pattern or just so art fun.

I cannot single any one person out from family and friends….other than this person:

My husband. There for everything for me. Always. Love IS what keeps us together…and has done for over 47 years.

Sending everyone my love and gratitude.

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Now where was I?

Oh yes, about my eating after cancer surgery. Part One is here.

Let me tell you this eating with only 8 teeth on the lower jaw and one tongue has called for:

  • imagination – what might that food feel like in my mouth and will it be able to break down to enable swallowing
  • care of my mouth. Yes, this mouth needs even more oral care now. So it is brushing of my teeth and rinsing with a particular mouth wash after morning and evening meals
  • shopping lists for foods I had not previously considered eating but do because of nourishment and ease of eating
  • trying to remain creative with meal choices for me while I am very restricted. It is hard and I do get frustrated but I try to remember it is not forever
  • nothing that is pre-made or take-away (boo to having to make everything from scratch) unless it is a plain cake, a scone or yoghurt.

My mouth: at least the lips seal but it remains a challenge to get any drink into it. I use a ‘squirt’ water bottle and when having a cuppa – tea of coffee – I have a serviette under my mouth. Messy Me.

As the initial months changed from me being dependent on my husband for meal-prep and shopping to me doing this for myself it did give me freer rein for creativity and independence but in some ways in was harder. My husband eats very simply but from a different meal-base to me (and it has been like that even before my cancer) so there have been few shared meals….except for that one time, before I had surgery #2 and he made a Baked Lamb Dinner…which was so soft and delicious and easy-t0-swallow the memories are fresh!

MEALS & SNACKS.

BREAKFAST.

Once I learned that tiny slivers of toast do not equate with a satisfying breakfast, this long-time cereal avoider embraced weetbix and I am a two weetbix, sugar and milk girl every day.

MORNING TEA.

This is mostly Morning Coffee as I go out each morning around 10.30-11 for my daily outing. See more about that here. More often than not it is just a coffee but on some occasions I can add a treat. It takes me a long time to eat some of these and I often bring part of it home.

LUNCH.

If I have had a snack as above I will not have anything for lunch…because I will still be full and I cannot find the energy to try to decide what I will take ages to make and then ages to eat. It is true! However, I know the value of nutrition and need to give myself more credit for knowing actually what to select and eat it. The last few weeks I have found it harder as I have a 3rd surgery which has left me in some discomfort and even less room inside the mouth as a stent is in there where the implants will eventually go.

On the way home from Sydney when I saw the Professor recently my husband ate the cheese sandwich we took for him and I had a little kids’ yoghurt with the squirty-top.

AFTERNOON TEA.
Depending on how much I have eaten at lunch, this may not be anything or it might be a cup of tea with biscuits that can be dunked. Yes. Only those. I have tried a few but only these work for me: Malt biscuits, Scotch Fingers, Orange Creams. Even gave Tim Tams a go but the biscuit part was too hard for my mouth.

DINNER.

I have always cooked in bulk for me and for my Dad. I often made spag bol variations and beef casseroles and chicken ones too. However, I am someone who craves variety and I was O.V.E.R. anything with chicken once all of the chicken soup with vegies were done and even those with added noodles. I had low iron after surgery so determined to eat myself better (along with the iron tablets) I used red meat meals.

I made and still have in the freezer in small meal sizes for me: Beef Casserole and Veggies  along with smoothly blended mash potato & sweet potato frozen in small meal sizes to add on top. Spaghetti Bolognaise and Pasta Bake. For a change of taste, some Salmon. Cheese and Rice meals which are a comfort meal I invented ages ago. I have also cooked chicken mince with sweet and sour sauce to add to rice.

OTHER SNACKS AND TREATS A.K.A. BEATING THE BOREDOM.

Firstly what you need to know:

I cannot bite anything.

I cannot, at the moment, completely seal my lips.

I cannot use a straw because of how my mouth has been changed.

I can put very small bite-sized pieces of suitable food into my mouth, allow them to move against my lower teeth along with some encouragement from the tongue and then when I believed they are small enough and soft enough I swallow.

I have not choked (yet) but I will always have water bottle next to me when I eat.

I use a teaspoon for eating my meals & some snacks unless it is bite-sized as above and I can use my hands.

The softer and wetter a food is, the easier it will go down.

 

PUTTING IT INTO PERSPECTIVE.

I miss the many textures and tastes of so many foods  but I am also grateful to be able to eat after this surgery as not all of those having surgery like mine get to do that. Some have to eat permanently through their stomach or via a feeding tube. I do try to keep my whingeing to a minimum as a result.

I am so very grateful to the team who has brought me to this point. From Friday 23 February my trips to Sydney will be to Westmead Oral Restorative Services where my upper jaw implants are being planned. Currently the most recent surgery saw a large stent/mouthguard put over the area where the implants will go and it has made my mouth quite painful. Eating has been even harder.

I am over 9 months into my cancer journey and am hopeful that all that needs to be done will have occurred by the time May comes…my first year anniversary. We shall see! Meanwhile, I will be doing some more ‘out for coffee’ visits and eating as safely and nutritiously as I can.

Sunday Night Dinner: my invention…taco in a bowl!

And me on Sunday 18 February. Check out my top lip! My mouth above is swollen because of recent surgery to add more skin to my top lip (thank you) and added in there is the stent pushing the top jaw forward. Uncomfy, yes. Worth it. Hell Yes.

I hope that you have found reading both parts of my story of Eating After Gum Cancer Surgery of interest. My operations took place here at Chris O’Brien Lifehouse and the Team headed by Professor Jonathan Clark performed all three of my surgeries. I follow Head and Neck Cancer Support Australia on Facebook and Beyond Five

On Friday 23 February I visited Westmead Oral Health Services and the two men who are part of my surgical team as well, determined that I could do without the stent for the next 4 weeks and so this was good news. My photo updating the one above is here:

UPDATE: 

Unfortunately my relief was short-lived as when my surgeon saw the pictures of my gums on Monday 26 Feb he wanted the stent returned on my  visit on Thursday 1 March. At the time of publishing this post I will be two days away from having the uncomfortable hard plastic stent removed and first impressions made…..which mean teeth will take months from then but my prosthodontist says “we have to get it perfect, Denyse.” Sigh.

Denyse.

Linking with Kylie Purtell for I Blog on Tuesdays here, with Leanne here for Lovin’ Life Link up for Thursday’s Lovin Life Linky  and on Wednesday, with Sue here for her link up.

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I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. Cancer Surgery #1 Part One. Here is the link as it is the ‘back story’ to this post.

Where did those two weeks go? I did say I would write Part Two last week for I Blog on Tuesdays and Loving’ Linky on Thursday but a hiccup called anti-biotic reaction in my gut  s l o w e d  me down!  Add to that a  ‘foggy post-anaesthetic’ brain and needing to rest more, time got away!

Here I go, outlining some of the features I was grateful for during my stay on Level 9 North Room 16 at Chris O’Brien Lifehouse. I arrived on the ward late Sunday afternoon from ICU and the delight at seeing the V.I.E.W. from my bed made the wait worth it!

I was in my private  room from Sunday 9 July until Saturday 15 July – day of discharge.

Warning: I have added a few photos of myself as I was recovering. In some ways this was very helpful for me to see progress. Scroll on by if you would prefer not to look. 

The arrival in a room of my own brought me some independence even though I still needed some initial assistance to get up for the ‘loo. I was grateful, oh so grateful for my relative independence.

I was still on nil by mouth – liquid food via a naso-gastric tube  ( I tolerated it and guess I was grateful because the nutrition, along with the drip feed of fluid was keeping me alive (LOL) …just disliked the feeling on the fluid  tube feed inside me. 

I stayed in a hospital gown because..I was messy…no details but a fair bit of me in the head/neck area was cut into and then stitched back so there were… messy fluids. I was grateful for a warm quick wash in bed and a change of gown daily. It also meant my nice Sussan nighties stayed in the bag until later in the week.

I have mentioned elsewhere that I had some amazing nurses caring for me and I struck up conversations with them all. Often my chats were to ask them about their career choice and how they liked their working lives, and with only one exception all agreed (from young ones to older ones) that this is a vocation for them. I am incredibly grateful to those who choose nursing and who remain dedicated to it as I saw first-hand how rushed off their feet they could be. I often said to them “I hope you have had a meal and a bit of a break today/tonight”.

The night nurse I had 4 nights in a row who clicked with me was Roan and I know I featured him in a post recently  about how we shared a passion for  photography. He was the one who invited me to get up and onto the balcony for sunrise pics. I am so grateful for his genuine care.

As the week progressed I was grateful to see some of the surgeons’ team arrive each day to check on me (and the flap inside my mouth to see it was still ‘lub dubbing’. I was ALWAYS grateful to hear that sound from the doppler! 

I had excellent care from three allied professionals and I am oh so grateful for their advice and help.: the physio who got me into my boot and walking with some trepidation but I eventually could walk unaided. The speech therapist whose job it was on Day 6 post surgery to see if I could speak well (derrr. who was ever going to stop me!) and to drink my first glass of water…as sips! It was GOOD. So grateful for that drink for sure. The dietitian had lots of advice and seemed well-versed in IBS issues and I was grateful for my first day of clear fluids on the 7th day post surgery. But I never wanted to try the soup again after the third time! I tolerated the jelly and the apple juice well. On the last day in hospital I was on smooth soft foods but there was little for me to choose from (that I liked!) but I was grateful to have some mashed potato and some baked tomato – which I had to smash up for it to ‘go down.

Each day brought me something to be grateful for. I was told by every medical professional just how amazingly well I was progressing. I had no measure for this but they obviously did and when I asked the Professor quite cheekily did he think I could go home on the weekend (I hoped Saturday) he said words to the effect ” keeping on going the way you are and I see no reason why not”. How grateful I was that I would be discharged in the minimum time (I was told initially 10-14 days and I went home on day 10!) And check me out with NO more tubes down the nose or up the nose..oh so grateful for that day! 

The person I am also incredibly grateful to is the anaesthetist who put drips and cannulas in 3 different places ( he said to ensure that if one stopped working in the marathon 11 hour surgery, he has a spare to use!). I might bruise easily, and now 3 weeks post-surgery my bruises have gone. They did not hurt me much. I was grateful for relatively little pain in the mouth and just a bit from the leg’s various sites where flesh and bone were harvested. From day two I only ever needed panadol – drip version first, then  liquid version as swallowing too challenging with the swelling inside my mouth.

There are many quiet and lonely times in hospital once evening comes and I was so grateful for my iphone for messages, texts and emails (as well as IG, twitter and FB) and my new Ipad for games, music and more. I also took my art things but the one I did enjoy the most was making mandalas each evening. The meditative effect for me was so for helpful in mitigating missing my husband and home.

I was grateful for the kindness of friends who understood my request for no visitors other than my husband and my daughter. Our son could not make it in. I had many, many well-wishes and some surprises dropped into my room for me. I did feel grateful for this. It is a distraction and a way in which to reinforce how we need to connect with our fellow humans!

 

On Saturday 15 July, after the minor (which led to some not great complications for my gut later at home) infection  was noted in an area of my leg & treated,  my husband arrived…I was already dressed (keen much?) then he had to pack up the bag and more. It was done with ease and I was grateful to leave my room of shelter, health recovery and protection  to be put in a wheelchair and taken to our car.

I am grateful if you have read to the end. It was interesting trying to recall events chronologically and without the photos to help me I would have struggled. This weekend ( as I write) I am feeling less and less foggy-brained and the gut is settling from the nasty antibiotics.

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

3 weeks post-surgery. On our way home from post-op check up.

 

Joining Kylie Purtell for I Blog on Tuesdays here and Leanne at Deep Fried Fruit for Loving’ Life here on Thursday.

 

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