Early in Remission

Hi Eleanor82love,I find birdsong will make me cry.I was in the garden this morning and heard a robin singing and the tears started flowing.I am still getting used to the up & downs emotionally.It is good to be able to talk on these boards.Love Jane xx

Hi Jane,

I know it's so odd but so true. I remember one time coming round from a stint of chemotherapy and those days you finally start to feel a bit more human again, the birds were making such a lovely song. It lifted my spirits like I've never known. So now i look out for them all the time, hehe. It's like natures form of healing.

Yes these boards are great, I'm glad you are on here too. I didnt think to look sooner.  X

Hi Eleanor82love,

Yes you are right, for me i am dealing with the fallout from the last two years and trying to find my feet and direction again.  Small steps at the moment.  Sharing thoughts and feelings with others who tread this path and who understand is definately part of the healing process.  

Everyday stuff and external issues overwhelm me which i would have taken in my stride before my diagnosis.  My coping abilities are not as effective as they used to be .  This is really one day and one step at a time and learning on a daily basis what is and isn't manageable for that day.  I think my emotions have had to be channelled a certain way during diagnosis,  surgery and treatment and now it has stopped they have found their way out and behaving like an out of tune orchestra and now bit by bit they need retuning from all the random directions they are going in at the moment.  This is work in progress and talking definately helps.

X

Hi Mike - Thehighlander

I hope your weekend was good and that you managed to build plenty of snowmen on Saturday with your granddaughter.  Also, congratulations on Scotland's 17-0 win

i too have met people who travel alot of miles for their hospital appointments and treatment to get the help and support they need and witnessed their courage and determination to keep doing so even when feeling very poorly.  It can be incredible what inner strength is found when we dig deep. 

Our recent conversations combined with the Paper and your blog have given me plenty to think about over the last few days.  Firstly, it has helped to ground me somewhat and refocus by piercing through the jumbled thoughts racing around in my head by helping me to contextualise and gain some clarity.  I have been able to reflect and re-evaluate the path so far, where  i am now and be able to visualise the terrain with the many cairns infront of me still to climb.  I also realise i have already made a start, which is easy to miss amongst the ups and downs early recovery brings - i am already doing some exercise with walking and eating healthily.  

Your friend is spot on regarding "the battle between the ears".  This is my job and all the anxiety in the world isn't going to change my diagnosis but i also know this is easier said than done.  This is where proactivity needs to overcome procrastination.  As you so rightly point out, using the paper's framework as a vehicle for change and life improvement is crucial as nothing changes without action.

I now feel i can start working on the HOW part of this and it is time for me to sit down with pen and paper as you suggest.  I realise goals need to be realistic and achievable and gradually built upon  - breaking things down into manageable pieces rather than running into every thing full pelt which wouldn't achieve anything but overwhelming frustration. So, now i have a place to start from.

I have also given some thought to my desire to move on and with engaging at this point in time with the Community.  My original stand point to help myself  has grown even stronger and i feel a shift within myself to need, as well as to want,  to move forwards - engaging with the Community has helped to fuel my motivation to do this.  I also want this movement to mean something from my experiences of the last two years - it's vital to me that i get this right so i actually live my life and i am not defined by cancer nor controlled by it.  Also, i strongly believe in the power of shared experience and want my lived experience of cancer to help others treading this path as those i have engaged with so far are helping me by reducing the fears, confusion, isolation, lack of understanding from those who have not been through the illness and even stigma that stll exists today.

I am always humbled by those i meet along the way and extremely for the help and support i receive.

Hi Ourgirlinthenorth, yes the weekend was great as you can see below and yes - Scotland won.

The first words that jumped out to me were.....

"It has helped to ground me somewhat and refocus by piercing through the jumbled thoughts racing around in my head by helping me to contextualise and gain some clarity"

....and

"I have been able to reflect and re-evaluate the path so far, where i am now and be able to visualise the terrain with the many cairns in front of me still to climb"

....and

"where proactivity needs to overcome procrastination"

You have made great progress as It does take some time and much longer than we would first imagine to get to a point where we can see much clearer and be able to pigeonhole the 'stuff' that needs to be unpacked and dealt with.... some stuff go on a high shelf out of reach but some will take time to deal with and will stay on a low shelf for some time.

I also agree in " the power of shared experience" and this is the main reason I help out on the Community but also on other local Macmillan projects.

It encourages me to hear how you have been encouraged to look for the way forward and start to move on with life.

Do keep us up to date with how things are going and do look to support others who you can identify with and support them as you have been supported.

((hugs))

Hi Mike - Thehighlander 

Fabulous pictures, it looks like a good time was had by all.  My goodness what alot of snow, although forecast last night here it didn't materialise but still cold enough.

I  want to thank you for your guidance and sharing your experience.  I have now reached a position where i can work from and begin the path to move forward.  I shall keep you up to date with how things are going and endeavour to support others along the way as receiving and giving support and sharing experience is truly Community in action, and this helps everyone.

With huge gratitude 

Good morning Ourgirl.

Restless night last so as you do, the brain goes down all these rabbit trails.

The one thing I was reflecting on was the pictures of the snow last weekend..... as you know I do like to put pictures to stuff as it helps to visualise things in a constructive way.

The snow could be a loose analogy of areas of the post cancer life..... stick with me

We use the snow to cover all the bad stuff and for family and friends - on the surface - it all looks good but under the snow the challenges still remain.

What could the snow be?..... I am sure that you can add some words but I thought stuff like..... keeping emotions under control when surrounded by people..........”I am fine..... don’t worry”....... just not being honest.....

I am not specifically saying this is you but in a more general view as others will be reading our conversation.

But the snow will melt and the challenges can start to show their face....... but l like snow and you can see, little Ellie loves it....... so what is this saying?

She built a snowman, an image of a life!...... she is little and has her life to live and I just thought that she did not complicate the snow.... she was not worried about how we would get home or would we slip and hurt ourselves.

She made life out of the snow...... she grabbed the opportunity and made something out of frozen water...... she made life from what other would think to be challenging, limiting...... then a few days later the snowman and the snow would be gone...... but life does not stop - it just reveals the next opportunity to her.

Make of that what you want but I just had to put it down as I would have been thinking about it all day and I have so much ‘life’ to do today

I do hope you treat yourself this weekend, a simple thing that makes life feel that bit lighter...... it’s Ellie’s dad’s birthday on Sunday so she is planning a rather ‘fun’ party we have been told....... should get a good sleep on Sunday night then.

Have a great weekend ((hugs))

Good afternoon Mike

I find being able to use pictures very helpful at the moment because they cut through the mental jumble and gives me something visual i can work with.

I find your analogy of snow a very interesting one.

Here are my thoughts....

Thinking of my own experience and where i am at now, the snow acts as a protective blanket shielding all my emotions from the outside world.  A barrier if you like, between me and everyone else. It's easier to say "i'm fine" when asked as i have been in the receiving end of too many opinions during the last couple of years from some telling me how i am, how i should feel, what is happening to me, and how i should deal with cancer or dismissing me and the subject entirely which leaves me with more negative emotions than i know what to do with.  The last couple of weeks i have actually used the word "mask" to my husband, a similar analogy, as in "the mask is off. I cannot wear it any more and i am not going to, just to make others feel comfortable."  

This is where the challenge comes in, when the snow melts or the mask comes off - for me, coping and learning how to deal with my own emotions at the moment is difficult enough without hiding underneath the blanket or behind the mask and pretending they don't exist just to appease others' emotional responses.  I cannot invest in others' emotions - they are not my responsibility, but how do do i manage this as these emotions do not go away without doing something about them.

The proactive step to take here  is shown by your lovely granddaughter  Ellie who built the snowman without distraction and by being completely focused  - two key words here - by focusing on what i need to deal with and how i move forwards  and improve my lifein manageable pieces without these external distractions is represented by building a new snowman for each piece/issue.

 The snowman is life, my issues are life because i am life - living and breathing.  As the snowman melts it is representative of an issue being resolved.  The melting snowman creates space for a fresh opportunity to build a new snowman and work on resolving another issue.

Everyday, every step taken is a new opportunity to overcome our issues in dealing with the challenges cancer recovery brings as life is lived everyday.  I learnt from an early age that no matter how difficult there is always opportunity to be found and that sometimes we need help from others to shine a light on it.

I hope you have a lovely weekend and have lots of fun at Ellie's dad's birthday party she is organising.  I am going shopping tomorrow and will slip a treat in the trolly as i go round the supermarket

Have a good weekend 

Good morning Ourgirl,

I left this till the morning to let it sink in and my first thought was ‘great’ a great big step in the healing and rebuilding journey has been made.

“...... by focusing on what i need to deal with and how i move forwards  and improve my life in manageable pieces without these external distractions...” this is a good and positive foundation to move forward and build on.

When I was discharged from the care of my Transplant team back in June 2018 it was like someone had taken my ‘comforter’ away from me - my cozy duvet. I was told while on a video conference with my Glasgow Specialist....... both my Specialist Cancer Nurse and myself started to cry and for me, not the man thing to do..... but it was such an emotional point in the journey we had walked together for many years.

My SCN actually did not know how to discharge me as she had never discharged a blood cancer patient in her many years.

This ‘new’ beginning did take some getting used to and she would often text me to ask how I was getting on and she even asked me to join a new Macmillan Support project to be the patient’s eyes....... and keep an eye on me - bless her.

Working on the project helped me unravel that ball of wool that had got all mixed up over the years...... and I suppose I am now creating something new from the strands... but I can’t knit

It’s these milestones....... these cairns that define our journey and mark our move to freedom, freedom from the anxiety, the “what if’s” having to put on our ‘happy’ face ‘mask’...... not showing what people want to see but just live an honest and open life warts and all and at the same time allowing the various wounds to heal day by day.

We are going to have lunch at our favourite little restaurant in a coastal village called Cromarty where we can sit and eat some great seafood at the same time watch the dolphins play in the firth....... now we could definitely use dolphins as a good picture for unpacking 

Have a great day and yes do pick out that treat as you go round the shops..... now what would I take?..... 

((hugs))

I got married in Cromarty!