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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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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