Did you know the word Ok is in BrOKen….

I’ve not typed much recently….last night I read a little saying a fellow cancer friend put and I suddenly related it to exactly where I am at the moment.. I’m just piecing bits of me back together…..except my pieces don’t slot quite back how they were so I’m adjusting!

It’s odd, back in February I was told my cancer was on my sternum and I took some time, had some palliative radiotherapy then got back up and got on…summer came and went….we hibernated it was lovely then we had to rejoin the world along side my next lot of check ups and scans where I was told my cancer was changing a bit meaning it was active again…I took the news and ran with it for a week and then it hit me……like mega hit me….

This is what my life is going to be like….I’m going to have these appointments where I’m told the disease has progressed, I’ll have to wait for decisions on treatments to be made and get through each emotion that it brings along side watching those I love so dearly put on brace faces but knowing they are crumbling beside me.

Taking all this in has never been easy….my counsellor says she thinks it’s amazing I’ve got so far along for the finality of cancer to only hit me properly now…

I ask if I’ve got 20 years I ask if they will find a cure in my time… I’m told I’m searching for someone to say yes but sadly this isn’t going to happen…this is REAL for me.

I take time out….try to pull out why I’m lucky….I’m lucky my pain is still manageable with drugs….I’m lucky I have treatments I don’t currently need to finance and plenty a head of me…I’m lucky I’ve years not months not days….

But like always I’m greedy and want more….

I asked rob how many years he thinks they mean when they say a few….he replied with 3 years…I told him I felt they meant 10…. he said that it’d be flipping amazing if I had 10…..the car fell silent as we thought about what point 10 years became amazing….

Then I asked my care team….do you think I’ve got 10 years….her lips tighten and her head shakes…. followed by the sentence…this is very real for you and is happening.

Shit….fuck….how….why….. my head is left thinking of all I’ve got to do, what I want to do but my brain hits a depressive state and body fails to move me into action…..

I’m heavy with emotions of sadness but pure love for my family…I don’t want to die not in 3 years not in 10.

I loose weeks in this state, in a time I should be doing I’m loosing time caught in a thickness of foggy thoughts.

I’ve no interest in activities or people because I’m busy working out how I can get out this situation but I’m left exhausted as I can’t find a way.

I distance myself from the world, struggling to manage my own pain I couldn’t possibly take on any one else’s.

Realising I’m hitting the floor as mum and Rob attempt to pull me back up and into the world, I’m heavy I pull them down as well.

Attempting to reach out for friends wanting them to advise me what I should be doing, what I should be feeling how I should be coping but then reality hits again…they can’t because they’ve lost me on this horrid journey as well, and they too are struggling to reach me through the fog and to know what to do or what to say…

The world seems lonely, unsafe almost….you begin to question that although you know deep in your heart cancer doesn’t pick people…you still wonder why it’s landed in your life.

You question what’s the point of moving forward and doing when you know that your future isn’t the length you so want it to be….I know… I know none of us know when our time is up but there’s certainly something to be said when cancer dollops into your life and you know if nothing else gets you before than the cancers sitting smirking at you.

Even when you seek out support it’s difficult…even the most trained of people can’t take cancer away from your mind…they too know what a nightmare your living and so can only listen and agree with you that they also wish they could help you Unknow what you know about your future.

If you could unknow what you know when you have cancer it would release so much fear…dying of cancer when your living with it is a long painful road, before you take to your death bed it’s already eaten away at your life…it starts with taking your time by making you attend appointments, it then plays with your mind removes you from your family and friends…even when you get lost in a special moment or memory your soon brought back to the hurt of the loss before you’ve lost it…not growing old with your husband, seeing your son grow up helping your parents as they grow old seeing your brother marry and have children, aging alongside your friends…

It zaps your energy so even when your mind is having a good day your body can’t keep up.

It’s truly soul destroying.

If it were a person we’d lock it up and throw away the key……

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When we are up we are up but when we are down we are down!

It’s been a while since I last Blogged…I’d like to say it’s because everything has been feeling good but actually I think it’s the opposite…I’ve internalised ALOT of emotions again and today they have literally poured out while I was at the hospice…probably the best place for it to have happened but I have to say it shocked me!!.

Finishing work for summer and heading straight away for a few special days with my boys was truly amazing but unfortunately the long days were a struggle and my pain hit an all time high.

I’m lucky in that my Dr had requested to see me so I’ve been able to have a long chat with her and just what I should be doing really and how i really do need to start to prioritise my life a little better than I have been….these talks are good in getting to remind myself that although I’ve caught the sun and look healthy, inside I’m not and I’m not going to get better.

She’s given me lots of food for thoughts and I think this is why I’ve had a little more emotion inside of me as I have BIG decisions to make.

Family wise has been hard as well….I thought after 6 months of having this news that it’d be getting easier by now it’s not.

It’s no secret that Rob has developed Alopecia, the Drs told us it’s more than likely to return and no surprise he’s got it but the emotion on top of what he’s already experiencing is very high…he’s fond of his hair…it also fills me with such guilt I’m putting him through this for a third time in 5 years.

Stan has been showing understanding that I’m not going to be around forever as he’s not been settling at night, we try not to get frustrated with him as we know just like us we are sure his head is a wobble of thoughts.

He’s also incredibly creative late at night so it’s also hard to stop him when he comes down stairs for the 10th time to show us a Lego model he’s made, or a drawing of us all or an Army story he’s written which then leads into conversation about dying…clever things children are!!

So the household is balancing all these emotions amongst attempting to try keep normal….

Sometimes I’m in complete disbelief we are going through this as a family, I look at others and think how do they constantly land on their feet and we keep being thrown this.

It feels like it’s been going on for ages…years…five and a half in fact, in typing this my head is saying I should feel lucky I’ve had this time when many don’t but it’s so so hard sometimes….I’m so frightened of what’s to come, the more pain I may experience and the true heart ache that it’s causing around me…

It’s a massive ball of hurt I carry around most days that at times makes me feel physically sick with worry.

I want to keep normal, I smile through the days and relieved when I close my eyes that I’ve made another day safely…..but I’m truly exhausted from the emotions it’s taking from me.

Finger prints on my heart

It’s been a funny old time recently….The Rollercoaster has somewhat calmed down…the major drops have lowered their height…appointments have lessened and I guess we are adapting to cancer again.

I never thought I’d heel click out of an oncology appointment after being told my cancer is on my sternum….but it’s not changed…celebrating still having cancer but knowing it’s stayed put was good news to our ears.

I’ve made the decision to come off my steroids…I was put on them to help with my dwindling energy levels that I’ve been struggling with for a year now….to the outside world I was functioning busy busy but when I got home and at weekends I was sleeping so much…like crazy amounts.

After a few months of taking them although they give me energy I don’t sleep at night on them, eating loads and Id feel fuzzy headed and unconnected with the world which I hate….I’ve also probably put on about two stone through the constant thoughts of food and physical eating I’ve done!!

My neighbour likened it to a toddler, picking a snooze time and only having half an hour but making sure it’s not to near bed time! Also having good sleep hygiene…going to bed at a reasonable time and waking up the same time each morning….so I’m going to try this…if it fails then a fuzzy headed blob I shall be…but I’ll be awake!!!

I didn’t sleep to well last night and we had our Art hospice session again today… I don’t think I could have looked my best as they asked if I’d had a bad night…ohhh Deary…

So I dreamt Rob no longer loved me and at that he had feelings for a friend of mine…

I woke up so upset… as I tried to pull apart how my brain had made such a dream.

Rob gave me a massive hug and reassured me he did love me and it was just a dream, I asked him to tell me something nice and he reminisced about our wedding day while cuddling me….

The dream stuck with me all day and I’ve been left feeling heavy from it.

At the hospice we continued our finger print art…. very unlike me I reached for the Thick black felt tip pen and block coloured my prints and filled it in with a dark pink|purple colour….it felt angry the picture….

my next print I zig zagged Red heart monitor lines finishing with a straight one….Dead…

I really don’t know what got into me this morning… I felt very deep anger and felt tearful…I’ve not been over tearful this time round but this dream has pulled inner emotions out of me.

We stayed for lunch and I focused my thoughts on Stanley…he seems to be my go to calming thought at the moment…my reason.

I wrote out my favourite book to read to him since he was little… A squash and a Squeeze… I love this book because I think it’s got an adult story hidden In it….basically telling us to appreciate what we have!!

I’m still struggling to shrug this nightmare….any one who knows Rob knows my dream is so far from reality and that’s not what’s troubling me… I think it’s my fear of dying and loosing him and although knowing in my heart I want him to be happy again… I kind of want to know who that will be with….

I’m trying to see all these emotions as positives as in my body and brain is processing to be able to move on, then I’ll be able to focus more on the here and now.

Why’s everyone being so kind mummy?

Why’s everyone being so kind to us mummy?

The question Stanley recently asked me… we’ve been honest and open about me having cancer and that they can’t cure it any more, however we’ve held back the fact mummy is going to die of cancer…unless something gets me sooner… years is what I hope I have , however as medicines progress who’s to say we can’t squeeze out a few more…or sadly as we don’t know how or when the cancer will progress or how I will respond to treatments , us all being so different you just don’t know what will work for you so I don’t have a definite answer, this in mind we’ve not mentioned to Stanley that I’m not going to be here as he enters his adult life…. he needs to know that when years becomes months as just 24 little hours is a long time for an 8 year old.

On this fact I can understand his confusion on why everyone is being so kind to us…

When I started my blog I never dreamed that those reading it would set out to start helping me for fill my Live it list…but you all have!

At first I felt embarrassed and not sure if I should be saying yes to the offers of help, but then after a bad day I realised I need to be doing these things and making these memories and some we do need help with, if not through physical actions but by financial ones as we just don’t have the money to be able to do some of them and I refuse to go credit card mad and leave Rob in debt!

So my Thanks goes to everyone who donated to a secret Just giving page raising us an incredible amount of money to spend as we wish…we are not sure just yet where or when or what we are going to pick to do with it.

Thank you to Hayley and Jodie for setting this up…I know you say you did nothing but you instigated it and although I ended up finding out about it, I Thank you for doing it secretly as I’d probably have told you not to and would be missing out on being able to make these extra memories with added financial help.

My next Thank you is to Hayley Raistrick – Episkopos who organised us a coffee morning to raise money for us to go away, truly so so kind I got home and I felt incredibly humbled that so many went. Xxx

Then another surprise, our amazing trustee of ChemoHero and now very dear friend… like…if you could pick extra grandparents… ken and Chris would be mine… in fact I’ve now adopted them.. they don’t know it but I’ve fallen In Love with them both.

Well they secretly planned a couple of fundraisers with an amazing group of friends of theirs to raise money to start doing up our garden…. Stanley now is wondering around saying…”I can’t believe they’ve done our garden.”

It’s like we are in an episode of ground force at the moment as we watch our garden develop.

When we moved to fremington I was so excited to have a garden with grass so when we got a larger piece then expected I couldn’t wait to get going on it..unfortunately with struggling with fatigue over the last two years, I’d start then get so tired and give up…what this group have done for us is given us a garden We can now up keep with the hard manual part all done.

Today I got home, the sun was beaming and I got the hose pipe out and watered the flowers, feeling a sense of peace within and excitement to see all the plants grow…yes for a few seconds I felt the future and not the doom of cancer!

So never underestimate the power of gardening!!! .

I know when I question all these people they respond with what We have done for others etc and now they all want to help us…but we do ChemoHero because it helps us.

It gives me a place I can be around people and products who understand what I’ve gone through and what I’m currently going through… it’s pulled me through dark days and given me a reason behind all this nasty stuff!!

But I am incredibly greatful for all these people who have thought to make things a little easier for my family as we go through this disastrous life ruining disease.

My mum and dad are workers and this is how both my brother and I have been brought up…they’ve always told us to smile and be kind and that will get us far in life… I’m guessing this is why people are being so kind to us Stanley…so please smile and be kind as you grow up. Xxx

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…