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.

Advertisements

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!

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.