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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Comments

  1. It’s not an over reaction at all. It’s appropriate for the context of pushing a new & somewhat uncomfortable boundary with on the fly adapting to both your ongoing recovery and the new roles you are in. Compounded with the lack of art to be mindful and process, it all sounds very reasonable to me.

    We don’t eat out usually, as food is not suitable. The part three months we’ve been unable to eat out at all because we can barely make suitable food at home, eating out is no hope.

    I find the food industry in Australia is not adaptable enough to people’s needs. It’s far too focused on pre set meals and the attitude that you have to be grateful they deign to serve you. But others may have a less cynical view 🙂

    • Thank you Vanessa for ‘getting it’. Yes, I know you have been doing such a change to help B with fodmap. Honestly, it is a chore and if cooking isn’t your thing but eating is…then you just HAVE to do it.

      I admit that this was my very first time out for a meal since way before cancer as it was anxiety & IBS that stopped me back then after a few unpleasant episodes.

      How I am viewing this event of yesterday now is that “I” perhaps am not quite as ready as I thought to tackle meals when I am out. However, I do not want to stop what for me is a big hurdle that I am overcoming. So, it will be more time taken to consider what might be best for me at the time.

      I also agree about the ill-preparedness of restaurants and the like to vary a meal design. Maybe it was the time of day and being a weekend as the lady told me they do half serves during the week!

      I was also ‘shocked’ at the prices. It HAS been a long time. A baked dinner was over $20!!

      I wish you and B well as you continue to do what helps him most.

      Denyse x

  2. I’m sure you didn’t over-react Denyse there is so much for you to process now and to adapt to. Just concentrate on how far you have come and what a wonderful inspiration you are to others. BTW what happened to the $5 Roast of the Day????

    • Thank you Sue, I agree that on the day I think I did ok. But it brought home to me the huge learning curve I am on. Yes, what about those specials??! We were there at peak time for celebrations and there were no specials at all.

      Denyse x

  3. I don’t think you over reacted, you’re just overcoming another learning curve. It’s also worth remembering that eating out won’t always be like this and that not all places will be like this – I’m sure there are lots of places that would be happy to meet your needs. It’s such a shame that you had to face such inflexibility on your first eating out outing. That said, this still can’t take anything away from how far you’ve come and how you continue to inspire others, Mrs Ambassador!

    • Thanks for your wise words Sammie.

      It was a lesson for me and I have ideas of how we might consider getting restaurants and cafes to cater more flexibly. Something maybe from working with Beyond Five.

      Right now though I am in need of a rest from all things relating to HNC and am looking to wind down before Christmas and after which is why there are no blog posts for me scheduled in that time.

      Denyse x

  4. It’s a long road – you’ve been doing this for 2 years now so it’s understandable to want to be able to move forward and eat out like everyone else. This is a learning experience and you’ll be better prepared next time. It’s not too much to ask for a small meal and not everywhere will be like this place. Take it slow, adjust your expectations (I know I’ve had to with my own dietary needs) and remember to take along a container next time. Just don’t give up!

    • Oh no, never give up! But I have learned from this that I can no longer even contemplate eating the quantity of food that restaurants want to serve.

      I was telling my Dad about the experience and he said at Dee Why RSL which is next door to where he lives will no longer let people take home leftovers. Something about fodod contamination if it is not consumed in optimum time and then if a person became unwell then …you know the rest.

      I hope you can get a chance to catch up one day before Term 1 madness begins.

      Happy end of a really, really challenging year for you and your family. I know Christmas will be hard…
      sending love,

      Denyse x

  5. Firstly I don’t think it was an overreaction & secondly, I think you underrate just how far you’ve come. Yes, it is more like 5 steps forward and one back – which still leaves you 4 steps ahead. We were only talking at lunch the other day just how inflexible many cafes and clubs are in regards to choice.

    • Interesting you say that because I have realised this…come further than I think. I look back and realise the year itself has been much bigger too. Maybe that is part of the human condition not to dwell. Or it is for me and that helps.

      My late Mum would always want a small meal or entree size and I can see how this would have been hard in some restaurants too. The fact that clubs seem to be flexible on weekdays but not weekends must be revenue linked.

      Thanks for your kind words!

      Denyse x

  6. I read this last weekend when you published it and could very much relate. I’d just been out to breakfast and – of course – had to leave half of the food on the plate.

    I’m supposedly still only able to eat about a cup of food at any one time. I’m worried my tummy has stretched a little and I’ve gained a couple of kilos since coming back from my holiday and part of it is that I’m eating more. Particularly when out… I get full but sit there and it feels wasteful so after a while I eat a bit more.

    It kills me when I have to leave half of a good meal on the plate. Luckily on my holiday I was able to take my leftovers away most meals and as I ate out at lunch it gave me dinner at night. I’d have to explain why I’d wait between finishing my drink and starting to eat (the food would get cold if it came too quickly and I didn’t have the language to ask them to delay serving though I’d try to order my drink and pretend to take time to decide what I was eating). I’m supposed to wait 30mins between eating and drinking and it’s probably one of the hardest things post-surgery to do.

    Of course… my dining out issues are all self-inflicted unlike yours, so that would make it far harder! xx

    • We do have parallel experiences.

      I am not wanting to re-gain weight over and above what I have now and the scary scales began to push me back to old thinking me. As you know when eating for reasons other than nourishment food takes on different meanings.

      But, I am now more cognisant of why I ate like that way before cancer. In fact, I am doing my best to see my photos of pre 2015 with compassion as I know that was how I dealt with many aspects of my life.

      Interestingly too, as I have aged, I do not want to eat anything in great serving sizes and like you it would pain me to leave the food which was why I did not have the full baked dinner.

      Oh, taking time to eat and it getting cold. Snap. I have always been a fast eater, not any more. I have to chew very well and it is a bit painful to ensure foods go down ok.

      I did not realise your restriction with timing of food and drink. I hope you continue to be kind to yourself and not think that you are ‘bad’ for eating a bit more. You have a lot to be thinking about now and time in which to ponder and that, for me, can be a triigger to eat less mindfully!

      Thanks for telling me more about your eating issues. Interesting and good to know.

      Denyse x

  7. No you’re not overreacting Denyse. Since my surgery in 2017 what I can eat has changed somewhat (some things don’t agree with me anymore) and I can’t eat as much. It took me a long time before I felt comfortable to try eating out again, so I do understand how you’re feeling. I may need to ask some questions when out and I’ve often made requests that are denied. I would like to see much more flexibility and diversity in what is offered on menus. Portion size options would be good for one thing! More carb free, protein rich options is another and the list goes on (eg gluten free & so on). I’ve also come across many places that will no longer allow you to pack up leftover food to take home. I think they are afraid of being sued in the event the food goes off and causes food poisoning or something.
    Some places are better than others with their flexibility but it’d good to see more places be mindful of the varying needs of the public and reflect that in their menu’s! #TeamLovinLife

    • Oh thank you Min for your open tale of what’s been happening to you. Yes, quantity is an issue for me and was before cancer because of anxiety and IBS. I learned the hard way about not eating much.

      It is a matter for further discussion in the community isn’t it? My late Mum was a very small eater and often took remains home. Yes they won’t let you do that now (in most cases) due to food poisoning possibilties.

      I want to give this matter more thought too. We are a part of a community that doesn’t want large portions. I also felt last weekend that I was not going to spend $20 on a meal I would only eat about 1/4 of.

      Thank you for sharing your story and I think we are not done with this!!

      Denyse x

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