Ran out of wishes

Ever think you wish for a lot…..8 years a go I started making mega big wishes….ones that every one else takes for granted….I wished to see next year and each time I got to that year I’d wish to see the next!

Each has been possible due to treatments I’ve had but I think I may have ran out of BIG wishes and need to start wishing smaller…

Sadly I have exhausted all the treatment I can have in my local hospital and my cancer has progressed….its progressed on my bones and that would be ok as thats very manageable….I’m still classed as lucky that the speckles on my lungs are stable and its on no other major organs but without a treatment to get control of what’s going on in my bones it will be a waiting game, so I’ve been referred to The Royal Marsden in London for a second a opinion…one that I’m not holding out much hope on as I have had so many treatments over the past 7 years that many of the drugs are the sister drugs of what I’ve already tried, so my oncologist hopes there will be a trial I fit the criteria for….and this is where I become mega stuck with my emotions and where I am in life.

Trials involve travelling up to London or a hospital a little further than my own…there’s potential it could happen in my own but trials are to poven …you are part of the research statistic.

I’m so incredibly tired of feeling crap and I’m unsure I want any more of the time feeling so poorly that I cant par take in activities with Stanley…which is who this all boils down to now…him..his memories of his mummy! .

Ive never felt angry about my situation before…I’ve just taken that I got cancer and ran with it ……but I’m feeling such a mix of emotions right now…so angry that its invaded my body….I cant make any sense of it.

I’m also in quite a lot of pain at the moment which is also a constant reminder that its inside me doing its thing to my bones.

I feel cross I cant get my hands on it…I feel cross I cant even have a drug infiltrate me to try show it I’m the boss of my body so it can do one….then I remember that its not a person but a disease and I need to get a grip and the best way I can do that is by getting on which I do manage daily but it’s there’s this horrible bomb of anger that concerns me!

So I’m currently on the route of pain management….I find it hard as the old me used to frown at a paracetamol and sit with my legs up in the air to try and combat the likes of period pains…yes that up until cancer was the only pain I really knew..apart from when I gave birth to Stanley…that hurt but was a good exciting hurt!.

I’m struggling with the pain so much that during he night when its at its worst my body is very stressed causing the most horrendous hot flushing… it wakes me up and i cant settle again. Ive just completed a couple rounds of radiotherapy over the past week…they blasted my mid back and my sacrum and then yesterday they did my pelvis…..I’m hoping its going to sort the pain issues out…they had to do a few areas as all areas i have said hurt have cancer on them and could all be the culprit for the deferred pain causing me problems when I walk.

Night time hot flushes!

I’m now very sore as it aggregates the area before itll start to get better. Today for the first time ever I gave in and I’ve rested all day remains in my PJs ……going to test if rest really is best…I’ve literally been in and out of sleep allllllll day….wide awake now tho at stupid O clock!. I’m trying to Tain my brain to automatically think to its self when ever I have a bad thought that this time will pass…the pain wont last forever and in the gaps where im good im going to do lots of fun stuff!

Right im ending this one here as im going on and have other things i want to blog!

In hiding….

Recently I’ve heard more and more people ask me how I am as I’ve suddenly stopped sharing on social media…I go to and become frightened…just as I will during this post and although your read it as one blog it’ll have taken me days as my brain shuts down….I’m safely jumping in and out of denial…yes 7 years on I’ve taken up being in denial and tricking myself I’ll be ok.

Obviously I’m not…I’ve got stage 4 cancer that as yet we’ve not got control of.

I’m struggling to put into words that at my last appointment I was told that the treatment I’m on in the last they can offer me in my local hospital…which was hard to hear as I’ve said since our last jaunt up to London that I’m not travelling to do trials…and it now looks like we are reaching that point….the point I use my time to solely make memories with and for my son Stanley my world.

Since finding out this news I also stopped seeing my counsellor, my home visits from my Dr and my hospice nurse as much, I can’t really say why it’s kinda just happened…do I no longer need the support…no not at all in fact the opposite but I’m frightened of where my emotions will go should I now see them to talk it all through.

I’ll be scanned in 2 weeks and then that’s it…I’ll know….I’ll know if I’m really reaching the end of the road…

If the treatment hasn’t worked then I’ve a chunk of time apparently… not sure what this chunk is but sounds like I’ll be able to fill it in with stuff.

If it’s worked then we continue as we are for a further 12 weeks of daily meds and monthly injections…then I’ve got a predicted 1 to 2 years which is incredible isn’t it…..1 to 2 years wow when did that become such an awesome amount of time?

So in all this I’m head down and sucking up the side effects not telling any one really how I’m feeling…infact most have stopped asking making me realise either everyone’s joined me in denial or they are not actually to bothered about my situation…easier not to know.

This is Chewie….Chewie cares…she hides under the cushions with me every day!

In sickness and in health

So here we are again after finding out chemo is no longer working for me just before Christmas to having my head back down the toilet because we are attempting what’s called Biological therapy.

I’m sure one day they will get there in making a treatment that makes cancer patients less ill but for now I’m making my self a statistic to get them closer while hoping this is all worth it to give me more time here.

Christ I feel ill….I’m actually wondering why am I do this….

I’m alone in the bathroom warding off what I can’t decipher is going to be major sickness as my salivate has gone insane in my mouth to if it could be diahorrea ….so I’ve gone to now sitting on the toilet as I feel rib would find cleaning up sick lesser of the two evils right now!

At what point did we honestly really think that’s what it mean at when we said the vows in sickness and In health….

My heads currently now collapsed in one hand as I type frantically with the other…playing mind games with my self to take my mind off feeling so incredibly sorry for myself…

So it hasn’t given me any form of relief all day apart from a little sleep.

I felt so lucky to have my mum race straight over today to help us out…stan had a bout of anxiety regarding a ball bearing he had swallowed…don’t ask long story and with me currently attached to our bathroom we needed help!

She ducked in and out between her cleaning jobs then my lovely friend Della camecsat with me while I slept so I knew stan was safe…never will she know what this meant to me.

By body has been placed on the sofa the majority of the afternoon as I’ve tried to figure out if I’m going to be able to do this drug feeling how I am.

I’ve taken another this eve with a few other counteracting drugs of the side effects so fingers crossed.

I’ve wanted and have cried a number of occasions today….you think you’d go through anything if it meant an extra few days or months with your child but today I’ve questions if I’ve actually got the strength physically or mentally any more…..

There’s More to life than looking at my feet but that’s truly been my capability today!

Weird and wonderful and wasted life of cancer…

Wow what a whirlwind of a couple of months I’ve had….those that know me better will know me and that I am Me and Chemohero is a ChemoHero….many. Any think we are the same like I am it or it is me….but I’ve tried so hard to keep us separate….it’s like a barrier I can put in front of my own crapness, something the people see but only see behind it where I am stood.

So your understand that with Pride of Britain, I got found and brought in front of the charity…which actually has been really nice….to see and hear what everyone thinks of it and the positive effects it’s had on those going through treatment.

Everything and more that I wanted when I had the idea.

We were treated to a trip to London and mixed among the stars but I really had a moment of realisation about the entire charity….I won as a regional winner for the south west of the west country and this is totally the people I do it for….I tired so easily at the awards much quicker than I thought I would sadly but as soon as a presenter said to me lisa people from your home town want to hear how you’ve enjoyed your evening….it filled me with energy and bounced up and talked and talked!,

Obviously after a mega high comes a low….it’s only natural but my low was because I was hurting….I’ve been really good recently learning a new slow of taking things easier…and POB took me way over that….not helping that the day after I got home I was straight in for chemotherapy!

The last week has been a struggle within my body….it’s like I can feel it go down a notch…I’m beginning to worry a little about what my scab in two weeks may show and if this chemo is positively acting on those naughty cells.

I’ve also had a real bump with recognising my own mortality, I sadly lost a cancer buddy last week….someone who I felt proper close to in regards to what I could share and the fact she had young children as well.

Although I’ve been told of how she looked to me for guidance I’m unsure she’ll ever realise what confidence she brought me by her constant praise and kind words….

I’m truly truly gutted that she didn’t get more time….I’d hoped we’d have been able to support each other more.

This has really frightened me as it all happened so so quickly, I know we area all different but it’s true this thing as well that’s spoken of in the cancer works…survivors guilt….I feel I’ve had this disease for 7 years now…..had so much support and time to come to terms with what my future holds….she didn’t….

It’s so bloody cruel and difficult all of it.

So in the circle of grieving I’m in disbelief and boarder line very very angry….in amongst realising life can change and I’ve got to try bloody go all out with doing what I want!

Right now I feel like I could go completely Barny around people fretting the small stuff….so I’m in hibernation again until I can safely go out and not be rude to someone!

Hair

So I’ve completed cycle 1 of the drug called Eribulin….I’ll share the name incase any one wants to google!.

I’m feeling pretty proud that I’ve managed to get through it and still feel mentally strong.

It’s made me feel queasy sick, ache a bit and caused stomach problems but for some reason all this still seems lighter than the previous treatment of tablets.

It’s a real quick infusion once it arrives on the chemo unit but last week took longer as my bloods were under parr.

My neutrophils were 0.9 and they wanted them at 1 for it to go a head….luckily I felt good and they agreed I could have it.

I felt less sick this week and my appetite has been better, although fully off sweet things I’m loving anything savoury…..literally 10am I could eat a jacket potato!.

This week I was really excited as I head into my week off treatment…even was going to get a sneaky day off school for stan as it’s flu vaccine time so as his school give the nasal spray stan can’t have it as it’s a live vaccine so has to have the injection…he couldn’t go in for the day.

We had lots planned but sadly the night before a rash I’d had a few days got worse so rob insisted I went to hospital.

Bloods immediately taken and came back that my neutrophil level was now 0.07….I have basically no reserve to fight anything….so I was kept in and given immediate antibiotics.

I don’t really care about staying in hospital…I just like to be prepared for it…which I wasn’t…so I’ve now got to make sure I’ve a hospital bag all prepped and with me….it’s like being pregnant again! However far less exciting….actually pretty crap!.

Hospital was ok…beef casserole sorted the whole savoury craving out…wouldn’t have got that at home!.

The most difficult thing was all this has timed with my hair falling out so my white hospital pillow was covered!

I felt depressed about being In hospital when I needed some self care time, like shower and try sort my hair.

Back home I was able to but it was masses of hair so I held out for the weekend and rob shaved it for a 3rd time in our lives.

It feels scary this time that I may never grow my hair back….I became almost vain a while back in not wanting treatment because I want to die looking myself with my hair… but now my mobility is at risk I know I’ve got to ditched the hair and go in head strong to chemotherapy.

Here again

I knew it’d only be a short break from chemotherapy…it was my choice to have a summer rest never the fact that we had the cancer under control…that never happened sadly.

Having done from October last year to April on fortnightly treatment my body was exhausted and I made the decision to rest.

I’ve had 4 months off and have gained some normality, although it was never far from my thoughts about what was going on inside if me.

For the past year I’ve not had 1 scan where my cancer hasn’t shown progression…I’m now at a point that if I don’t go back on treatment my oncologist can’t be sure what state my body will be in within the next 4 months so treatment it is….starting tomorrow.

This will be my 5th type of Chemotherapy…think I’d be fully used to it by now but I’m seriously not!

I’m very frightened about what side effects are going to happen and how I’m going to cope with everything alongside the side effects.

This will be the third type of IV chemo I’ve had as the last two were tablet form.

It won’t take long to administer which is a bonus but there’s something different about being in charge of swallowing a pill to being pumped full of toxins…maybe it’s about control.

The drug I’m going on is called Eribulin, it’s not been approved for that long in the uk from what I’ve read, and not many of 8the nurses seemed familiar with it..I guess like rob said, it’s my 5th line treatment…many people don’t get to this stage so in all my self pity I should feel lucky as well!

The side effects from what I’ve read are the norm or sickness, diahorrea, constipation, oh and hair loss!

I’m guessing I’m still in a denial as I’ve not bought any new hats or anything which I’m thinking I should have really as the mop will start to fall by the two week mark!.

I can’t explain how it feels to be going into such a debilitating treatment….I feel like I need to be doing a ritual house clean…last relaxing bath….last meal where I can taste the food!

Instead I’ve just wanted to start to with draw from the world and hibernate amongst my things!

When I tried tablet chemo, I wasn’t particularly in a great place, I had a friend over stepping the mark in my life generally and I was still attempting to think in my head I was going to be returning to work.

I was absolutely wiped out from the cancer and generally just not coping very well.

In my time off from treatment I’ve changed a few problem areas and I’m hoping it’ll give me the strength and mind set to manage it better.

I also feel more confident about the drug I am being put on, I hope these feelings proves me right and it slows the cancer.

Hot stuff

Wow where are the months going…odd I used to wish time away to get to summer…but when you know your on limited time you want everything to slooooooowwww down!.

Summer is nearly upon us but the sun isn’t the only thing to recently be heating up!

Yesterday I went for some radiotherapy.

I’ve been struggling more and more with my right hip…to the point I’m seeking out the closest seat where ever I go….never did I think I’d not want to go shopping but that was my wake up call….one hour walking around town and ending up exhausted because of this dull achy pain in my hip that travelled down my leg.

So I got offered some radiotherapy on my hip and around my pelvis area…so I’ve one hot arse right now ha ha!.

They’ve said the pain will get worse before it gets better…day 1 not to much change just feels a bit funny under deep within the cheek.

I probably should mention since my last blog, I’ve made the massive decision to not continue with my chemotherapy.

I was dipping in energy and just not feeling it…I think when you go into chemotherapy you really do have to go in full on with your mind body and soul…I just wasn’t there…I never thought I’d ever be some one to say I’ve had enough…but hand on heart I need to focus on the quality of my life which I must say we are 1 month off it and I’m feeling a lot better!.

I’m back being a mummy to stan and waking up in the morning to take him to school and still being awake to go and get him!

I’m back cooking tea and actually wanting to cook cake again…my fingers are getting less sore so won’t be long till I get the sewing machine back out!

I’m finding things funny and growing in confidence to head back out on my own again without robs trust worthy hand to support me….amazing how much treatment can take away your confidence in the world.

The only thing with stopping it apart from it being risky, is how easy it is to go into a sense of denial about the entire situation, so I’m making a conscious effort to keep getting support from the hospice and Ive also been referred to an Enhanced support care team in Exeter to make sure we are getting all the help in all areas of my life that we need.

Another big movement in my life is work….a couple of months ago I also made the decision that it was time to admit defeat and take Ill health retirement.

It was such a hard decision, 18.5 years working at petroc they are my family…but I couldn’t for-fill my hours with my health any more and I never did the job for the money so to drop hours wouldn’t have been financially viable.

Although I’ve not worked for many months there, I think knowing it’s officially ended will take some time to get used to, but I am looking forward to seeing what else floats my way in life and also having the time to just go with the flow and perhaps offer some help to other people in some way…who knows…I’ve learnt not to plan!

So that’s my news really…

30 something Chemotherapyo

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!

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!