Me Time

Last week we started the supportive sessions at our local Hospice.

When I was first diagnosed although deemed curable due to being young they allowed me the use of counselling and their complimentary therapy session, meaning they gave me some space to go up and talk to some one about my feelings, as well as have reflexology the day before a chemotherapy…truly amazing and something that made a huge difference to how a treatment went the following day… an added bonus was my sister law also a reflexologist would see me a few days after treatment to help me as well.

The second time I was diagnosed again under a very hazy diagnosis of uncertainty and only time would tell, I felt I’d talked all I could and put to bed a lot of cancer related stuff so I didn’t feel the need to visit the hospice however went through occupational health where I was offered bereavement counselling….strange hey…that’s how I felt to start with but it was explained to me I was grieving the life I thought I was going to have, the energy I once had and relationship changes I’d had with people around me…. so 5 sessions in a little room on an industrial estate proved the best hours spent in many years!.

There I was talking to a man I’d never met, getting through boxes of tissues getting angry, crying, laughing, putting together Plans, ideas, working through probably the past 20 years of muddled thoughts and coming out each week noticeably calmer as if my brain had been in for a massage! .

So my needs this time after my diagnosis that my cancers back and its not budging only growing… Everything feels very different…. I have no time for people around me who cause me troubles nor do I have time to spend with those people making amends…luckily there’s not a long list of those any more really now a-days.

we just have need to be around our immediate family.

So both Rob and I are visiting the hospice together this time and working together on how we are going to manage what’s going to come our way.

We have started with a how to talk to your children session, we’ve only gone to one so far and we came out feeling pretty good that over the last 5 years from the start of all this we’ve done pretty good with no guidance on the matter…. the big thing they spoke of is how we complicate matters as adults and basically honesty is best… I’m not saying we’ve blurted out mummy’s going to die of cancer as we don’t know when that will be and time is a funny thing for a child…I don’t want Stanley a few years down the line to have had this on his soldiers but also don’t want it creeping up on him that he felt he didn’t know what was going on so we need to judge as parents when the time is right, but for now he does need to know mummy is poorly again and that this time they can’t get rid of the cancer and that’s why mummy is sleeping a bit more than usual and daddy may be sad sometimes or nanny may be here more to help if mummy and daddy have a hospital appointment….why our lovely friends keep dropping around to visit us with gifts and food etc etc…

We also attended a mindfulness session but both unsure at this point if this is for us or not… that’s the great thing about the hospice, you can pick up these sessions as and when you feel they are right for you.

Today we went for a memory making session, something we were both keen todo… and together… it felt incredibly productive and therapeutic.

I was concerned as we were sat around a large table with others something I know rob may have struggled with, but once told what we were going to be doing rob blurted out how he was ready to crack on and really loved doing stuff like this, we then even got told to rejoin the room as we quickly discussed what we thought we would both like to do….ooooooopps but felt great to be back in conversation with each other so freely and excitedly about something we were going to be doing! .

So what was it I hear you ask… Our finger prints…

We printed one of our fingers, we decided to both use our wedding finger as that finger means a lot to us both, we made vows over that finger to look after each other until the end!

This then got enlarged and we could decorate how we wished.

I went on to do some writing I wanted to put on mine.

Then decided I needed to become familiar with my lines on my print so used all the colours from my favourite film “The little mermaid”.

I then got this printed again and was able to write over it easier with the words I wanted to use…..

I started with thinking of my first childhood memory and working through all the happy thoughts and people who popped into my head that made an impact in my life, it really made me smile….Rob had a sneaky peek at my work and decided he’d do the same…we chatted about how lovely and funny it is all the little one words you find to cover a huge memory.

I’m yet to make this finger print as I decided I wanted to start with putting our wedding song on my engagement finger print first.

It was lovely to read the words from it and after repeating it 6 or so times around my print certain words began to stand out and I felt so calm and lost in the activity.

Coming back into the room from the zone I entered we listened to what others had done and for the first time in 3 months I heard other people’s sadness apart from my own…I found an ounce of myself return!

We came out excited for next week…another first for a while!

Pain…

Pain….

For the last year I’ve known I’m not right physically.

This time last year I was training up for the Bideford 10k…I had a goal but towards the last 2 months of training something changed in me, every session felt hard.

I let myself believe that it was down to working hard but my parents who I’d been up with at training suddenly went up a notch in their level of fitness where I felt I was spiralling down.

I was working hard at work and running the charity in my spare time as well as being a mum and wife, so I quietened the charity down as much as I could , and slowed up the running after meeting the goal of the 10k.

I’d started to get monthly pain in-and around my sternum but I put that down to when I was due an injection I do myself to pop my ovaries to sleep so I don’t produce the oestrogen that feeds my cancer incase there was any chance of me still having had cancer!!.

I related it to perhaps being breast tissue that reacted to the need for the injection as everything tries to wake up being the young lady that I am.

I’d visited the drs a few times about the pain and was diagnosed with it being costochondritis so inflammation of the soft tissue as it attaches to the sternum…after the third visit I decided I’d had enough of antibiotics and steroids and said that after 6 continues months of pain I’m sure we should be digging into the cause of it.

I don’t need to repeat the story of being referred to the hospital for bloods and my chemo nurse recognising my symptoms for bone mets, but I was asked by the oncology dr to rate my pain out of 10….

Something I now find incredibly hard to do after having had 20 chemotherapies…causing an inside sickness pain and aches like I’ve been run over a bus 3 times….to Radiotherapy where my skin got so burnt on my breast it blistered….to surgery where I had scares running across my chest and under my armpit with stitches and bodily tissues removed..

Needless to say I found it hard to rate my pain out of 10.

So three weeks ago when I fell in my garden and ended up going to hospital after an hour and a half at home debating if needed to as I didn’t want to be taking up the time of a real emergency, we realised I now couldn’t move either arm without increased pain and swelling was getting worse so we headed up to be checked out.

It turned out I’d broken the radial bone in both my arms up by the elbow…. again the question I was asked… rate it out if 10 for each arm…

so I gave it an 8 for my right as I could handle it and wasn’t screaming and a 6 for the left as I could move it slightly but it didn’t hurt as much as the right but I wanted it above a 5 so they’d take it seriously!!

2weeks on From my accident I wanted to continue with my phased return to work as mentally I need to get on even if my body isn’t feeling it… I’m finding I’m having to separate the needs of body and mind as they are not working very well together.

So I returned… only for 2.5 days on slightly lighter duties… but it appears my body has won as my arms screwed and over the weekend the pain has gotten worse and on looking at the arms I appear to have the shakes and misaligned arms… so back to X-rays I head.

Not sure how to score the pain this time….

You may think also what the heck am I doing even returning to work with two broken arms…well they said to keep them mobile…well when your given a secondary cancer diagnoses and have the medical history I do….nothing stops you…what’s broken bones to loosing days of your life…so I got myself back… now recognising that perhaps I’m not well enough to be back physically even if I am mentally….

Blogging to help process

Blog 1 done and ready to post and share when I am… please chances are Ive written this a week or two or three before posting so don’t be alarmed by what you read… my reason for waiting before posting any blog is so that I know I’m ok and you can read knowing If it’s any thing slightly more deep in emotion I’ve worked through it and come out the other side.

It also gives me a bit of personal space to be able to feel I can be honest as it’s been quite an emotional time for both Rob, Stanley and our close family and friends.

1 March 2018

As the weeks are now turning into a few months of processing my cancer is here to stay and I’m the best im going to be right now…I guess now is good time to attempt to take charge…

I’ve always hated the expression bucket list as I’m avoiding the whole kick the bucket process….however I’m wondering if by putting a Live IT list down in words it may actually help us as a family and friends group to start to live with this news that I’m not going to be here for as long as we had all hoped…

Medical discussions lead me to believe that I’ve hopefully got a few years, however they’ve also made me very aware there are no grey areas now with my cancer… it’s very much on my sternum and a little larger than first thought…. we are waiting for it to move on to its next place where they will go in aggressively with more chemotherapy as I only finished my last lot 2 years ago at the beginning of April… a treatment looking back knowing what we do now they probably would have held off… you see they can’t keep plying you with these drugs and some drugs are best used for certain areas and you kind of move up levels to put it simply….there has to come a point where they say actually this is now causing your body more stress then good and it’s time to stop…. this is called palliative treatment… they are pro longing life but attempting to weigh it up so you’ve good quality as well.

It’s very black and white for me now…. my 3 month scans will either show its spread or not…. how do you learn to live with this anxiety…

if it’s spread then life gets thrown into treatment until we can see signs it’s slowed..but what damage goes on in my body in that time is unpredictable…something many forget when you are having chemotherapy,

The major focus being on the cancer not the damage that the treatment is putting on your body to function as it get wiped out of good and bad cells.

So in hope to get my head on the living more I’m attempting to compile a list of things we hope to achieve and do….. I’ve never been one to really splash out on lavish holidays or things…. I’m such a Devon girl…. even since school I remember friends desperate to get away from North Devon ( may I add now they are all desperate to get here back by the sea!!)

I’m incredibly family orientated….to the point I keep my close circle small in a time of crisis….we close in.

So on getting news that it’s probably going to be cancer that takes me from this world….unless the famous bus knocks me down first ( not the stanley Walter ChemoHero bus tho!!).

I feel I should have the most amazing list of things I want to achieve and do…however all that’s happened is it’s made me want to stay nearer my family and friends.

On talking to my hospice nurse I felt a bit of saddo listening to myself talk about some of the things I want….

1: I want to live!!!

What else can possibly top this….. how can I possibly add any more….

The response was that I’m hunting for someone to answer this wish with an answer that I’m sadly not going to get now….have fought the disease twice under the curable bracket it’s been explained to me that it’s probably making it harder to except the non curable diagnosis now.

2: See Stanley grow up!

The feelings make me feel dizzy…I thought I was going to pass out in my living room voicing this one…I’m not going to see Stanley grow up to be a young man, meet his future children, know what job or career path he’s going to take…know him.

3…Grow old with Rob… you enter a marriage with the vows till death do us part… did we know deep down at the time as we refused this vow and said to promise to love each other till the end… words from the film ps I love you!!

Because nobody REALLY knows when the end is do they do it could be forever!.

Trying to get my head around that I’m not going to be with rob for longer than I’ve been with him…..the idea I hope he meets somebody so lovely to care for him and Stanley and know I’m no fret but will forever be with them and wishing them nothing but fun love and happiness…. yet it breaks my heart.

4…Not being there for my brother as he sees my parents age, one relief…. I won’t have to sort my dads garage out!!!

I feel lucky to be able to have seen him grow as a baby into the young man he is and know he’s succeeding in all his does….but there’s still so much I want to see him achieve.

5… Leaving my mum and Dad behind…. big lump in throat typing this one..can add no more to this just yet.

So these are the mega 5 feelings right now… (5 is my lucky number!) ones I can’t change and only hope I can keep going for as long as I can.

So the Live it list I can have some control over….

Lay a road in the early hours of the morning that’s driven over by 100s of people a day!

Ride a white stallion into the sunset.

Work at a hair salon one morning brushing the hair on the floor in 1 swift move and make cups of tea for people.

Take Stanley to Butlins, Legoland, Disneyland Paris and somewhere for some sunshine as he wants to drink a fizzy drink in a swimming pool….yes it appears he’s my strange ways!!

Go to centre parcs with all my family.

Watch John Williams orchestra play star wars music with Rob…watch his child like face watching it.

Take Stanley to watch Lion King in London and watch him watching it!!

Go away for a spa weekend with rob and actually be able to afford the spa treatments rather than just the use of the swimming pool and free sauna!!

Have a pottery day with my family.

Stay in a holiday cottage and cook a good home cooked meal and drink prossecco with my nearest and dearest for a weekend.

Sort my Garden out with a back boarder, decking area with table and chairs that look out on to the field , some veg trugs, to watch things grow. Lights in the trees and lots of pretty things.

Go to Italy and sit on one of those boat thingys that they row you along on….Gondola.

Cook sausages down on instow beach one sunny evening….. yes Westaways!!!! 56 for £10 from the Devon county show!!

Take a picnic basket, French stick, cheeses and a bottle of wine down to fremington quay and also again at landache bridge and watch the sunset.

Plan my funeral down to the last minute so I know what’s going to happen and that it’s all sorted just how I wish it to be.

Sort what’s going to happen to me after my funeral , I know a hard one….maybe something I’ll blog another day. Once done it can be put a side and I won’t need to think about it again.

So as you can see… I’m a pretty simple person….I want nothing that whisks me away for a second from my little family or friends…. all I want is to be surrounded by them.

It feels scary when you feel apart from needing to sleep a lot and getting tired very quickly that Your able to function so well and yet all it takes is 1 scan to say things have changed and suddenly your ability to do things can change as well as your time scales in life…