Thursday 30th June 2022

Eating After My Gum Cancer Surgery. Part One. 2018.18.

Eating After My Gum Cancer Surgery. Part One. 2018.18.

I thought it may be of interest to readers if I outlined how I have been able to ‘feed and nourish myself’ since last year when my cancer was cut from my upper mouth, gums and jaw and I was left with…not much! Actually it was a miracle of science how my upper mouth was made from my leg and there is much to be read here for those who do not know my story.

In the months leading up to my eventual cancer diagnosis my upper gums made eating difficult as they were sore, and with a new denture it was hard work. I guess in some ways it was practice for what was to come. I could not really crunch or bite down on something like an apple or chips. I could have smaller cut up bread-rolls but not bite into one. Mmmm. I had forgotten this and now I am writing it I can see why I could not even eat steak or a cutlet. Foods I cannot eat now but am longing to have again!!

Happy Snap?: my 67th b’day: 30/11/16. Upper teeth seen are those made by a bridge/crown over 5 of my front teeth. My mouth was already irritated in the back of this area. Had been for at least 2 years.

 

I recall being quite concerned about how I would deal with feelings if I could not eat. Yes, I like to do that..and, over time, found that I still can but I am actually dealing with feelings better than I used to! Who knew!

After surgery on 6 July. I was told I would have a drip and a feeding tube inserted naso-gastrically and that I would not have any liquid until at least 7 days were up so that the area that had been added to my inside of my mouth was deemed to have sealed and be ready. OK. I did not argue but I did not like the feeling when the feeding tube would fire up and deliver the prescribed nourishment. In fact I used to think it might be regurgitated but it never did. After I left ICU and was in my own room, the amount I was fed ramped up and I had to change my attitude towards this feed. I decided I could deal with the amount of time – up to a few minutes it took to feed me because it was helping to heal me.

Feeding Me To Heal Me became quite the mantra which I used a lot at home too. My psychologist had told me that patients who have head and neck surgeries have a changed relationship with food and that it cannot always be enjoyable as it is like a medicine we need to heal.

I came home on the 10th day and my dear husband already had shopped with the list of what he knew I could eat and we thought: YES, we have got this! Not so. You see, as the patient who was still very much learning to eat again, I thought I could direct my husband to sort out the food I could eat. It did not work well as I was still highly emotional, on a very strong anti-biotic to ensure my leg wounds did not become further infected. In short, adjusting to eating when I couldn’t really eat (and was hungry) and found that my gut was rejecting everything via diarrheoa meant my early days (and nights at home) were a bit challenging. And I was wanting to do stuff for myself. My goodness. I know.

My hospital dietitian had sent me home with samples of high protein drinks, I was given sheets with lots of information about soft and pureed foods and I am a compliant person. I must do this. Right? Well, actually my body said NO. My GP told me just how much I needed to let my (IBS-centred) gut settle after being empty for over 8 days and it needed to come back to balance. His sensible approach saved me and whilst I appreciated the knowledge that was shared with me it was time to eat what I could and when I could.

I admit that with having my right leg encased in a boot and the stitches from surgery had only just been removed as well as two large flesh areas that needed healing I did my body no favours by deciding to make some chicken and vegetable soup one morning. You see, I have always been the cook and I found that if I had to instruct my husband our marriage might not last (OK, an exaggeration) and I needed some sense of independence.

Once I had that soup sorted and blended and in the freezer for future use, I agreed to stay out of the kitchen…and my darling husband became the best every toast maker and cutting it into teensy tiny pieces to see if I could eat it. He even made me vegemite toast just so I could lick the taste of it. I learned that yoghurt and honey go down easily and they helped me when I had to take oral medication as did jelly.

The early days and weeks were hard but I was also buoyed by the fact that in all likelihood my cancer had been completely removed. On a follow-up visit 3 weeks after surgery both the Professor and the Associate Professor agreed with no recommendation for follow-up radiotherapy as it has very brutal effects on the face and would change the view of cancer has gone from 95% to 97.5%. 

Part Two will be more on how I gradually learned more about the how and what I could eat…and how it is so vital that we both nourish ourselves with food as well as enjoy it.

If you have any questions, please ask in the comments. Happy to respond.

Denyse.

Joining in with Kylie Purtell here for I Blog On Tuesdays and with Sue here for her Wednesday link up & Leanne’s Lovin’Life Linky on Thursdays here.

 

 

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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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Cancer and Me Four Months On. 2017.108.

Cancer and Me Four Months On. 2017.108.

Really? It’s been four months since I found out that cancer was in my mouth….and by this Thursday coming, 11 weeks since it was removed. Oh. Then that has  gone both fast and slow!

I did say I wasn’t going to have cancer at the centre of my blogging but I cannot deny that it’s there/here/everywhere around us. My community nurse who visits each week to change and check on my leg wounds’ dressings has cancer. Hers is breast cancer. I know of on-line friends recently diagnosed too and one, very sadly, who has passed away. And the country was saddened to see the recent death to cancer of Connie Johnson from LoveYourSister.

CANCER.

I don’t use the ‘f’ word in front of it though. Many do with the #f…cancer. It’s just not me.

Today though  I am actually wanting to share the lessons having cancer has taught me. I am not going too ‘woo woo’ or having had a new experience from beyond. But it’s true.

Having cancer has taught me these 10 lessons:

  • I am not alone in getting a rare cancer and a most unusual one like mine …even if I did  know that someone else has had it might make a difference. The point I am making is I am not special”.
  • The surgeons know more about how to fix me than I do so I am better leaving things in their capable hands rather than trying to control where my cancer is taking me.
  • About kindness. Of strangers. Of friends. Of people I may only see a few times. So. Many. Kind. Words & Deeds. I am forever grateful.
  • When I need to be, I can be patient and wait. This is a huge life lesson for the previously still  impatient moi!
  • I have more inner strength and resilience than I have previously given myself credit for. It has made a psychological shift in me that has been noticed by those closest to me and the professionals I see more frequently such as my GP and psychologist. I am going well in so many ways, I can see & feel that now. 
  • To appreciate the little things in life. Sunshine on a day where I can go outside and soak up some vitamin D. A warm bed after an early shower (my husband still needs to help by sealing my right leg in a plastic bag. Time to talk. To my husband and to friends who call.
  • My creativity and independence give me great strength each day as I endeavour to feed myself for healing, wellness and enjoyment. It IS a challenge but now I am on my own two feet and fit to cook, I enjoy making meals for someone (moi!)  who has 8 teeth on the bottom jaw and a strong tongue. The rest…is attitude and being aware of how I can eat safely.
  • I can be calm about what is ahead because I am fortunate enough to be able to know (within a small likelihood) that my cancer is unlikely to metastasise.
  • What I face in the next 6-12 months is to get my mouth ‘fixed’ from the inside. I do trust my surgical and dental team 100% that their goal is for me to be cancer free (check!) and back to eating as I might have in the past (on the way) and to have my full smile back (it is half at the moment).
  • Every day is a gift and I need to be more in the present than I have ever been in my whole life. I am a work-in-progress in this as I often spent times in the past (regrets, sadness) and projecting into the future. I know that the only moment we have is NOW. 

What About You?

None of us have to have cancer to consider making life changes. Some of the last 2 years I had been on my way using daily meditation, creative arts and reading & doing on-line courses to better understand the various life transitions that were mine. Retirement. Ageing. Leaving Family. Selling Our House.

What do you do to help yourself?

Thank you to my readers here who have continued to be wonderful supporters and friends of mine as I continue to journey. I am buoyed by your care and words on-line whenever we connect!

Denyse.

Joining with Kylie Purtell (who is cruising along right now!) for I Blog on Tuesdays here and with Leanne here for Lovin’ Life Linky on Thursdays.

 

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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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