Wednesday 23rd August 2017

Reality Bites. Part Two. 2017.100.

Reality Bites. Part Two. 2017.100.

So a few weeks back I wrote here about ‘reality biting’ from the emotional health perspective as it started to over shadow my physical recovery. It is true that as I said back then our feelings can take longer to catch up with us. In some ways a more gentle and regular pattern of life has taken place since then and life is pretty good!

However, there have been some more moments and events where reality has bitten and I outline them here:

  • I am finding it  a challenge most days to ‘like’ the face…i.e. the mouth I see which is shrunken and ‘old lady with no teeth in’ look. Oh wait. That IS me. Old(ish!) lady with no teeth ..at the top. However, I saw myself in a photo and it’s not pretty. I am vain! I guess we all like to think we present a reasonable face to anyone. It will happen! You know it will…just going to be a few months yet.
  • I am feeling luckier as time goes on that my cancer does appear to have been isolated in that one place in my mouth but IF I let my imaginative thoughts take over I anticipate more cancer in my future. Note to self: remember mindfulness and living for today
  • I am hungry and wanting to eat from a nutrition and enjoyable perspective but I am very limited by foods which require virtually no chewing and can be swallowed with no chance of choking. Oops: I remember this well when I ‘try’ to eat some small pieces of cooked chicken within a soup I have blended and I manage not to choke but to remember that I cannot chew. Note well…OK? Sigh.
  • I have a great desire to have the rest of this year on fast forward to the days when I can eat well and without much restriction but that’s not going to happen. I was reminded of this limitation again when I did my first mini supermarket shop last week and had to say to myself: can’t have chips, can’t have meat, can’t have ANY thing that is hard, crunchy or needs chewing. In 2018 this will be different. Be patient ..LOL.

I posted this photo recently and had so many positive comments about my appearance. For a while though I wondered why I felt defensive about my loss of weight because it has not been intentional. I feel I have to justify my weight loss (over 3+years) because it did come at a ‘cost’ thanks to anxiety and IBS. But..I reflected on this too because for the many years I was very overweight I was using food as a comfort. My slow and gradual weight loss has made me realise that in many ways it has also helped me to feel more content at this size and I am certainly more physically comfortable and I think my recovery was assisted by me being this size.

But you know what I do actually say to myself now?

  • I am so fortunate to have recovered well from a MOST major and complex surgery where part of my leg was made to fit into my upper part of my mouth to give me, over time, teeth and gums and a S M I L E to be proud of.
  • I have the best support person in the world…who is also incredibly patient with this ex-patient…and that of course is my husband who I paid tribute to here.
  • I have my 100% independence back now. I can look after myself in terms of hygiene…oh I do need some help with covering my leg to have a shower…and dressing. I still need the nurses to visit to dress my leg wounds but they are going well too. I can walk well with no boot and I can drive. This has all come about in the past week to 10 days.
  • I am, as they say, #blessed!

Some photos showing my progress. This post is published just under 7 weeks since my surgery on 6 July 2017.

This will be the last of the posts about my cancer diagnosis and surgery for a while. As I recover more over the next few months I will be back into other topics and those of interest each week. I appreciate that the number of commenters and the amount of support I have had since I announced I had cancer has buoyed me through much of this time. Big thanks to you all.

How have you managed when being ill or post surgery?

Are you someone who has little patience or are you someone who can wait?

Have you ever cared for someone post-surgery or who has a major illness?

Denyse.

Joining with Kylie Purtell here for I Blog On Tuesdays and with Leanne here for her Linky called Lovin’ Life on Thursdays.

 

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I Am Grateful Today. Part 3. 2017.98.

I Am Grateful Today. Part 3. 2017.98.

For those of you who have been following my story of having cancer, the surgery for cancer and the recovery, this post is bringing you up to date with my first month at home.

Going home! Are there any better words when you have been in hospital? I do not think so! I spent the whole of the journey back home being very grateful for my discharge from Chris O’Brien Lifehouse and being entrusted into my loving husband’s care. I think I talked all the way home as it had been some time (ok, 10 days!) since I had been outside the walls of the hospital.

The following photos will tell part of my story of gratitude.

However, throughout all of this ‘cancer journey’ the one person I am most grateful to is my husband:

the yin to my yang, the calm to my panic, the voice of reason to the voice of worry, the patient man for the patient who is often less than patient….I dedicate this post to him.

And even though he dislikes the attention, I have told him often enough that without his care, love, compassion, practical skills and commonsense my time becoming accustomed to have cancer and facing the serious surgery would have been much, much harder.

I am very grateful to B:

 

Here I am …within one month even I can see the differences and I know I feel different inside and much more ‘like me’ so I am incredibly grateful for healing time, a good body, great medical and surgical support and my outlook!

Taken on 12 August 2017, 4 weeks after my arrival home from hospital.

I am most grateful for YOUR support and care via your comments, your Facebook updates and those on Instagram. Thank you all!

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays and Leanne for her link up called Lovin Life on Thursdays.

The gratitude post in photos!

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Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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I Am Grateful Today. Part Two. 2017.94.

I Am Grateful Today. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. 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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I Am Grateful Today. Part One. 2017.91.

I Am Grateful Today. Part One. 2017.91.

Hello again!
Today I am listing many reasons I am grateful and am delighted to be back blogging and linking up with dear friends here with Leanne for Lovin’ Life Linky!

Day Before Surgery

Oh, and in case you did not know… I have returned home after my major cancer surgery which removed the inside top of my mouth, gums and teeth (ha! there were only 3 left…and bummer…no tooth fairy coin left either!). When I was in hospital I had PLENTY of thinking and reflecting time so a post about gratitude seems to fit my return to Lovin’ Life today!

This post is live two weeks after my 11 hour surgery on Thursday 6 July. The selected  photos and words are just a part of my grateful list.

I am doing my best to have them sequentially …enjoy!

Wednesday 5 July. Pre-Admission Day.

It was a well-planned departure (I am so that anyway) but I did have a tiny sense of ‘what if I don’t come back’ and sensibly did quite the paperwork tidy-up, prepared official documents so husband and daughter knew where they were, and left my bedroom and art room clean and tidy. The trip to Sydney (by now I had done 3 since diagnosis) so I am grateful that I built up my confidence through challenging my beliefs based on fear of driving on the M1 and ‘getting caught short’.

We arrived in plenty of time at Chris O’Brien Lifehouse (pictured)  for a myriad of health checks (all fine and dandy!) at pre-admission and handed over my life in forms…about 10 pages. There was no money to pay as our Teachers Health covered every.single.item*. Always very grateful we were both in it as young teachers then continued as a family always with top cover. The amount paid by them was in excess of  $21K.*not all doctors’ fees but that is ok.

We had booked overnight accommodation (cheap and cheerful as recommended by the hospital) as it was within 10 mins walking distance of Lifehouse. We were not impressed by the spartan set up however kindly the people were who supplied the accommodation so after our LAST night together for a while, B decided to bunk in with the grandkids and our daughter who live an hour away from Lifehouse. In retrospect I was incredibly grateful he did because as he said ‘it was great to see loving family faces!’.

Thursday 6 July. Day of Surgery.

I have no pictures! Fancy that! But I was grateful for a laugh when I got my phone back from B the next day and there was over 3 hours video of the inside of the phone cover which must have started when I handed it to him in Surgical area at 6.30 a.m.

Friday 7 July – Sunday 9 July. Intensive Care Unit.

After 11 hours of surgery I remember one fact about waking in what possibly was recovery but might have been ICU and it was nighttime. I asked ‘no tracheostomy?’ Of course, my brain tells me now I would not have been able to ask the question if I had, but I was intensely grateful that my surgery did not require this as I had been told it was possible.

In intensive care I was grateful each room was private and I could shut out sounds and light as I mostly needed to rest my eyes, not sleep. I liked that I could talk (a bit) to whoever came to check my obs. Loads of obs checks, especially my ‘mouth flap’. This was checked via a doppler ( a mini ultra-sound scanner) and each time I heard the reassuring beats I did thumbs up as I was incredibly grateful it was alive in me. The catheter came out on the second day and it was good to go to the loo (with help of course, as my leg was in a back slab). I am grateful I stopped caring about modesty. Let’s just get better is my motto!

By Sunday I was stir-crazy and when I heard they were waiting for a room to be ready on the ward I sure was pleased. It took a bit of time to do the transfer but I was grateful to say ‘bye bye’ and ‘thank you’ to ICU.

The Rest of My Stay Until Discharge on Saturday 15 July.

To be continued next Tuesday week where I will link up on I Blog on Tuesdays and the next Thursday when I will link up here again too.

I decided to do it this way as I am tiring and I have a lot to say! Who knew? Ok. I did.

Denyse.

Next Monday I re-start my #lifethisweek Link Up: Here are the prompts: They are also on the Home Page.

Mon 24 July: 28/52. Can’t Live Without.

Mon 31 July: 29/52. Winter.

Mon 7 Aug: 30/52. Birth Order.

Mon 14 Aug: 31/52. Ideal Meal.

Mon 21 Aug: 32/52. Selfie Time.

Mon 28 Aug 33/52. Mindfulness.

Mon 4 Sept 34/52. First Car/Bike.

Mon 11 Sept 35/52. Beach or Bush.

Mon 18 Sept 36/52. Taking Stock.

 

 

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Winter, Whales & Waves. 2017.86.

Winter, Whales & Waves. 2017.86.

It’s no secret how much I love living near the ocean. Winter, in particular, has an attraction for those of us living on the east coast of Australia. It is the time of the migrating whales who are headed north from the cold Southern Ocean to mate and bring offspring into the world in the warmer waters. So, winter is whale watching time. It is somewhat challenging to see the whales without binoculars from where I stood for these pictures but rest assured I saw the large spouting fountain from a whale in the distance looking east. From October onwards, the whales will return heading back home to the south.

My photos are from a Friday afternoon in June. I am savouring these scenes as I will soon be away from seeing them live thanks to my hospitalisation for cancer and then the recovery period at home where I will have one leg in plaster/walking boot.

Here’s my winter collection for now:

Wonderful cloud formation at Soldiers Beach!

 

Whale spotted out ‘there’

Have you ever seen a whale?

Where was this?

Do you surf in Winter?

Thanks for enjoying the scenes!

Denyse.

P.S. I decided that as Leanne was whale watching recently it would be timely to link this post up for Lovin’ Life. I was going to publish tomorrow, then I thought..no! Do it on Thursday instead. Here is the link to Leanne’s Blog.

P.P.S. See below for my news about next Monday’s link up!

My Link Up on Mondays: 

The last #LifeThisWeek linky is Taking Stock…. until further notice…i.e. when I am able to blog again after surgery and recovery in hospital in Sydney… and here for your convenience if you are following the prompt for 27/52 is the list from Pip Lincoln’s Blog: meetmeatmikes.

Making :
Cooking :
Drinking :
Reading:
Wanting:
Looking:
Playing:
Wasting:
Sewing:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving: 
Hoping:
Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Bookmarking:
Opening:
Giggling:
Feeling:

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Winter in the Garden. 2017.85.

Winter in the Garden. 2017.85.

In June the garden here took on a different look.

Whilst there are some blooms happening, much more is about the ‘sleeping’ side of the plants which need to time to renew.

There is none more apparent than the frangipani.

Last winter was my first experience with a large frangipani shedding its leaves and I had no idea of whether I had ‘killed it’ or it was part of its normal cycle.

Checking various frangipanis around the local area I was relieved to see it was perfectly fine.

In late spring everything began the wonderful renewal of the leaves and the blooms!

That’s winter in this garden.

 

 

 

 

 

 

 

 

 

Which one is your favourite?

What about yours?

What do you see coming up and what is going away, so to speak?

Denyse.

Joining here with Kylie Purtell for I Blog On Tuesdays.

 

 

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

Joining Kylie Purtell here for I Blog On Tuesdays link up.

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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