30 something Chemotherapy

The great thing about social media is it has these flash back posts where you can see all the wonderful things you’ve experienced in the past… sadly mine seems to flash back 6 years ago… I almost died of deposit due to my pic line becoming infected.

3 years ago I was just coming to an end of 12 chemotherapies…

Today I sat feeling rather deflated and tired awaiting to have bloods taken from my spanking new port….pic below…

Its a nifty little device saving nurses time playing about with my forever hiding veins in my feet, they can access this far easier to take bloods at the moment, but in the future no doubt it’ll see my chemo go in.

I’ve been an anxious tearful mess today, early evening I took myself to bed as I wasn’t coping with my feelings very well about people and life…

There’s so much I want to get done yet I’m completed whacked right now,

We started to tidy the garage after the hospital today… didn’t seem to get very far… I found all Stanley’s baby cards so came inside and started to hole punch them and thread them so they now resemble a little book he can keep far easier.

Then we’ve had a game of master mind, I remember playing this game fir hours with my sister when I was younger while our parents did up the flat they had bought to rent out..

I’m sure I was a quicker thinker back then as I on,y managed 1 round before loosing interest…but we played a game… it was nice, no tv, just playing and listening to music!.I’m now in bed awaiting side effects that are creeping in slowly… nausea is the pig… I kinda wish I’d just throw up and be done but nope I get this sea sicky feeling which I hate.

In another few hours I’ll take up residency in the bathroom and spend the next couple of days feeling unsafe from being to far from a toilet!.

Tomorrow we are picking up our rocking chair from the hospice we have been doing up..we never finished it so maybe a good project for tomorrow once home.

Already feeling this week is a right off as I’ve no more to give to it.

Over and out!

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Wanting to celebrate but feeling unable!

It’s an odd feeling wanting to feel happy and celebrate achievements… yet being in the thick of the forest in your Life…..

Friday I was invited after being nominated as an inspirational woman of Devon.. to Exeter Devon county hall.

The event was lush, no winner just a room full of brilliant woman who just want to empower others… I was a chosen one… felt pretty chuffed really… I always find awards closer to my home town the ones that I’m most proud if in all of setting up ChemoHero… because this is the area I do it for… I will never forget that lonely feeling I had after diagnosis and still today in my darkest days.

It was a great awards ceremony but again I’m struggling to share it…

I’m not really sure why… may be part of falling into a depressive state… it’s another added emotion I can’t place right now…. who knows.

I went with my mum and actually sat there listening to the speakers thinking just how brilliant a woman my mum is and how I’d not be who I am with out her by my side..

She helps me keep my shit together yet the one person I tend to loose my shit with..crazy really… guess that’s what you call love!

We had a lovely lunch after and shopping trip but I was utterly exhausted after two hours… I came home feeling incredibly tired and sleeping all night.I’m desperate now to get a scan under my belt, find out where I am in treatment… is it working?

Everyone is saying how well I look, if only they could see the semi empty bottle of concealer!

Inside I’m feeling rather empty in more ways than one… I’m feeling I need a good recharge and if I didn’t feel so daunted about being to far from home I’d go book a holiday! Oh and if the bank balance allowed! Ha ha!

Keep looking back at Disney photos to get a fix….I think it was the last time I felt truly happy….. guess that was the idea of that trip!

this photo has no relevance to anything right now, just perhaps to show how all over the place I am right now! .

Chemo Monday tomorrow.

Life is blinking hard…

So I’m finding things hard….

I’m evaluating naturally all areas of my life and want my blog to begin to get more honest on how ever you want to look at it…living with /dying of cancer is…

I’m struggling right now…please do not feel an instant need to help me, however lovely that is ofyou, I sadly can not be helped with my problems…I’m in the thick of them and can only hope in time I feel better…..

So problem…

I have metastatic cancer…I’m on chemotherapy for as long as I can no longer be…it’s hard feeling like your under parr in every minute of your day…craving BC… Before Cancer.

The repercussions of having cancer

  1. I won’t see my pride my joy my love of my life my reason for life Stanley grow up…it’s no secret I’ve struggled forming a normal mother son bond with him…I feel I’m cheating him every single day by having cancer and have spent since being diagnosed holding him away to attempt to save him the hurt when we have to say good bye…

2 my husband, Rob, every day I wonder why he sticks beside me.. I often believe he deserves better, A life…this is no life living cancer.

3 my family my mum my dad my brother this is heart wrenching as they too live this life with us.

4 robs family, preparing to pick rob up when the time comes…a daughter a daughter for life, a sons a son till he meets a wife… I’m not going to be here for his life…

6 my friends… I’ve a very close 3 bestest friends long term ones as well, we don’t live in each other’s pockets but they are my trusted forever friends who I love dearly…I’d do anything for them if I could and them for me, however our common factors…we are all incredibly independent.

7 work life…. I loved my job and this disease has stolen it from me….

My heads in complete denial that I’m not well enough to work but my body is screwed and I currently can not see how or if I’m capable of returning.

I’ve recently been given some early Ill health retirement information…hilariously sad to be honest but I know perhaps it’s time…

My condition in changing and I’m getting scared… my cancer spread, my chemotherapy quickly changed, we now await for further appointments of scans and up dates on how this one is going….do I think it’s working for me…no I don’t… or is this just because the last didn’t and I’m still recovering from that depressive blow.

I’ve developed an incredibly annoying cough which I’m worried about and naturally rob is panicking about… I keep going into little breathless moments then mini coughs into a full on on choking session.

The other night I woke up and I couldn’t feel the top part of my foot… incredibly scary..I’ve not had this before…it was numb like I’d been laid on it for hours so I git up, walked about and then had a bath at 2am in the morning… 2 days later I still can’t feel it.

Yet again my care from our chemo unit was wonderful… they immediately tested for neurological issues but I passed ok, so they now want to MRI my body and look at where the cancer is on my Ilium and check my spine…. rob joked saying it won’t be long until I’m in a wheel chair… it’d be funny if I didn’t feel this could be the case.

Talking of chairs, today we had our time at the hospice in a second session of making memories… we bought a rocking chair… we are painting it together for the garden…..and a little like my life it’s not going to plan.

We wanted it sage green and yellow but it didn’t look how we wanted so we’ve repainted…I’m unsure what to do now….. sound familiar.

Let the psychologists in you read into this piece of furniture… a lonely old rocking chair I can sit In and rock back wards and forwards in and get away with it without being admitted to hospital! X

When we started our hospice visits I was always worried about those who fell a sleep during sessions which may I add is totally ok and accepted at this beautiful sanctuary we are so lucky to have in North Devon.

They say it should be 1 place we can get out to visit what ever we feel….

But yes going back to those who sleep, during a session today this was me… I was continually offered a big comfy chair which I refused as this was like accepting I was ill…. yet there I was head on the table only waking when my body did an involuntary twitch….

I’m über scared…what’s happening to me…..this is not me… I’m the young lady who lays with one eye open so not to miss anything….

One chuckle this week… I entered the NDDH pharmacy and won a pack of steroids… told the pharmacist they really need to get better prizes!

Springing into another treatment

Well winter is nearing an end…, Thank goodness…that was a tough one!

7 chemotherapies with an end result of cancer progression truly sucked and something I’m still trying to get over.

I didn’t have tears when told the news the cancer had now appeared all the way down on my hip…we just got our green disability pass signed and headed off to Disney land…it was truly fantastic… my friends are truly awesome…. if it wasn’t for a few of them pulling together or setting themselves challenges we never could have dreamed of being able to go least if all taking my brother and mum with us!

We were free from disease well not really free but free from appointments..free from the new normal and into a magical world of big smiling funny characters and rides that energised your brains with blood as you spun around them.

We led our worries then picked them up on our route home.

Back to reality I started a new treatment only just recovering from the last ones side effects.

This one is called Navelbine, I have 140mg every single week after my bloods are said to be alright.

This is actually the 5th type of chemotherapy put into my body….it’s derived from the periwinkle plant so ohhhh very natural!

Who knew a pretty little plant could do sooooo much.

Actually I’m coping alright, think I’ve had some horrendous treatments that this so far appears the kindest.

I’m given high dose antisickness to take on the day, the day after and night after which is working well, first couple there was an initial rocking back and forth on all fours but thats calmed a lot, I’ve found high carb food is working in making me feel less sick.

However the stomach cramps and sudden urgency to find a toilet are pretty full on with this treatment.

I’m also finding although I’m not loosing my hair full on, it is definitely thinning.

So that’s treatment….in other news….the Hospice continue to be amazing to us, we are taking part in their making memories sessions, busy doing up a chair for the garden but as a joint activity both rob and I’m doing.

Feeling better mentally about treatment and cancer, a couple weeks ago I was thinking it may be time to stop it and seek only pain relief and live a life with out the side effects chemo brings the feelings for heading towards quality not quantity… it’s something we’ve been talking a lot about but I’ve decided after this next scan we will have another think and talk it through again…Chemotherapy is body destroying and certainly not an easy choice….nor is deciding to stop…. but I want stan to have more fun times with me and I don’t feel it’s happening while in weekly treatment.

I also feel I’m loosing who I am…. I can’t really work while on weekly treatment and in all honesty I was not ready to stop yet but I’ve had to as I just can’t cope with having to spend a day waiting around either for bloods etc then taking chemo which effects my body within two hours of taking it, getting side effects for 3 days then recovering from what those side effects have done to my body to then mastering up any energy which now needs to be used for Stanley and the rest of my family making memories …

Most 36 years old would be jumping for joy they are not at work….for me I crave it…the normality, the banter, the laughs till your tummy hurts some days…the learning ..

I miss my work colleagues…but I’ve learnt outside of work everyone has their own lives and that actually perhaps work friendships are only based around the work and nothing deeper like we are all led to believe as we enter the doors each day to earn a wage.

However saying the above I’m so saddened as it’s incredibly lonely most days.

Cancer truly sucks and is ruining my life literally, I want a day where I don’t feel so filled with sad emotions…where I don’t have to think I should feel lucky I’m still breathing….what’s that all about…a day I don’t have a dull aching pain in my bones.

I’ve been told I don’t show my anger enough and that I need to let it go and maybe start saying how I’m really feeling about things but I just can’t as I can’t see where it’ll get me… I hate anger it’s a wasted lot of energy, I hate nastiness it’s not necessary when the world is already so cruel.

I love smiles, laughter and kindness and my boys!

Realisation….

Funny you’d have thought I have experienced all emotions of a cancer diagnosis…but it appears to be a disease that just keeps giving in emotions.

I’ve been asked a couple of times today how I am…such a massive question that I often respond with..ahhh I’m doing alright…I’m still here.

There’s the odd person who I feel more able to be honest with but that’s when it hits me…as I speak of just what I’m going through.

Last week I ended up in hospital, so many colds around I’m bound to catch them but I’d underestimated how low my immunity was/is.

Maybe that’s when the realisation of being on palliative treatment hit me… it made me realise that actually it may not be the cancer that kills but something else from having a weakened immune system.

This time of year is generally hard, families coming together and seeing and feeling the love we all have for each other…it deeply hurts that one day their will be a massive void for all of us, not that I’ll feel it as I won’t be here but I’m feeling it RIGHT NOW in the here and now, everything is precious.

Today I’ve felt if not for a better word, really shit.

I’m Day 3 of cycle 3 which was delayed after last week, what this means now is I’ll be week 2 cycle 4 on Christmas Day….I’m going to prob feel yuk!

I’ve become quite anxious as this should be a manageable chemotherapy for long term use, don’t get me wrong it’s easier than ones in the past as I’m not throwing up but I get a very quick onset of a bad stomach.

My hands look like I’ve been in a bath for hours and are cracking on the skin, my nails and tips are painful yet numb in places with rings appearing in the nail so I know they will soon start to break.

My mouth is beginning to layer with a yuk taste putting me off all foods, and today I’m actually hurting, my lower back is so painful.

I currently laid in bed with a hot water bottle and dosed up and succumbed to a sleeping pill which isn’t working just yet!

It’s days like this I’m wondering if this is going to be possible…to live in a 3 week cycle of yuk for as long as this chemo works then the joys of harder stuff if it doesn’t.

Did I mention I can’t walk properly either as my feet are also beginning to turn red and sore.

It’s hard on a painful day to foresee the future of palliative chemotherapy, then I get a burst of Stanley’s smile or a gentle squeeze from Rob, a phone call from mum, a knock at the door from Matt and a little prep talk from dad and I remember that despite all the yuk, this is exactly what I’m doing it for and suddenly my weighing scales of chemotherapy tip heavily to my family and I keep going, keep smiling and keep saying ohh I’m doing alright!.

So today’s been painful and reflective.

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……

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!