More Chemotherapy. More Drugs

More Chemotherapy. More drugs

The past month has been a real strain on my whole body, not just physically but emotionally too. When I sit and think about my pericardial effusion (the fluid around my heart) that alone could have suffocated my heart and stopped it from beating.
To then have a ‘full on’ week away at center parcs has exhausted me more than I could have imagined.
The following week I was told at my recent oncology appointment that the test results are back from the fluid around by heart. Under the microscope it showed cancer cells which is what we thought would be the case. I was then told to have a ‘baseline’ ECG and a chest x-ray and to have another CT Scan (another one, another needle on my arm, another load of fluid they pump into me while I go through the large polo which makes me feel like I’ve wet myself).
On the Friday of that week I was to collect my new chemotherapy drugs and start taking them that evening.
I was expecting them to make me feel absolutely awful, don’t get me wrong they do, but just not quite as bad as last time. my mouth is just starting to feel like its on fire and I’m sleeping more hours in the day than I am awake. Now that I have finished taking my two weeks of Chemotherapy, I have a mouth full of ulcers and it really hurts, the local anaesthetic I spray into my mouth helps with the swallowing.

What breaks me is when my babies go to school and they are worried about me at home, especially my princess who verbalised today that she is worried that I will die while she is at school :'(

I feel like my insides have been ripped out of me. I’m now just a shell, no pain is comparable to the pain I feel knowing I’m not going to be here in their future. All I’ve ever want

No comments
adminMore Chemotherapy. More Drugs
read more

Ups and Downs

Ups and Downs,

The past week or so has been extremely testing on every emotion possible. The children are struggling, I am exhausted and our mini break last week was great but also overwhelming for my trio, (another blog about that)

Yesterday I collected our new car from our local dealer. I’m feeling very lucky, due to my decline in health my benefit level has changed and I was awarded Motability. It makes driving a whole lot easier on my pelvic and knee joints.

Today myself and my mum, went to our local hospital as I needed to have another Echocardiogram (an ultrasound on my heart). To their and our surprise there was no fluid around my heart what so ever. I felt such a relief, I had previously had thoughts about the cavity of my heart filling up again and then having to go to another specialist hospital in which I was told I made need heart surgery to correct this if the fluid had reoccurred. A massive sigh of relief from us both. I was then discharged and no further Echocardiogram needed unless I feel unwell again.

So, after leaving the cardiology department we then ventured to the Haematology and Oncology unit to see my oncologist for my results of yesterdays blood results (to check if I’m well enough for my next bone strengthening injections) which I am well enough. I also needed to get the results from the fluid that was tested at the laboratory from when the fluid from my heart was drained.
Well, the lady at the desk told us the appointment had been cancelled and changed to tomorrow (16.03.16), I calmly explained that my mother had driven from wales for this appointment and please could we be seen today…. eventually we were seen by my Oncologists registrar. Dr P. he asked how I am and how I have been (medically) I’d explained over the past 5 days or so, I have this strange wheezing sound, after examination, he and my oncologist agreed that I have a pocket of air (not in my lungs, rather strange) we were then told my bloods were fine and my markers had dropped again!!!! I wasn’t told what they are, it feels irrelevant really.

The test results had come back and it had shown under the microscope cancer cells were present in the cavity surrounding my heart! Cancer cells are travelling around my blood stream. which means one thing.
More Chemotherapy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The good thing is, I can now stop taking the drug Anastrozol, which in one of its side effects gives bone and joint pain. which I get a lot in my pelvis, hands, feet and knees (elbows are ok, no pain there) now that I don’t need to take that drug I should hopefully not need to take so much morphine. That in itself is wonderful, its very painful typing this blog.

The new Chemotherapy drug, I will take orally in tablet form, twice a day after food for 21 days, then have a week off, then start again. It will have the normal chemo possible side effects: sickness, diarrhoea, mouth ulcers, loss of appetite, fatigue, red hands and feet, nail lifting, possible hair loss. there are that many I have forgotten. so, I signed the consent form for the chemotherapy. I am so thankful I can take this in tablet form and not have to have the drug intravenously. I am so so so so grateful, it can be this way. it means less impact on the children, less visits to hospital.

As cancer is spreading, lets face it, I have it in my: Lungs, broncals, pericardial (heart cavity),  2 ribs, clavicle, pelvis and lymph nodes in my chest, also previously had cancer in my right breast and 5/19 lymph nodes were cancerous. I am lucky its not in my liver, kidneys, pancreas or brain

I asked the tough question——————————- PROGNOSIS———————————–

if I respond to the chemo and I can tolerate it I could have a few years, if this chemo isn’t working there is another one I can go on. If it doesn’t work, I could have less than a year….. I’m thinking… a few years….

So after feeling ‘happy’ about that, there were a few ‘base-line’ tests needed before chemotherapy commences…..
Another E.C.G, another chest X-Ray (which I did both today) and I need to have a ‘base-line’ CT scan (which I’m awaiting a date for that).

We came away from that consultation feeling relieved and proactive that hopefully the next treatment will actually work and keep this evil disease ‘at bay’ as the previous treatment for my organs are not working.

I thank you all for your love and continued support, it truly is helping.

the practical support is very much appreciated, with a massive thanks from us all 🙂

#HHH

No comments
adminUps and Downs
read more

….Lapland….

Lapland, WOW what can I say, it was amazing.

The holiday of a lifetime. We would love to give everyone a MASSIVE THANKS to you for supporting us and all the fundraising made my dream possible to go to Lapland with the children. The bonus was that my mummy came with us too.

I surprised everyone with a stretched limo to Stansted Airport, their faces when the Limo arrived was a picture!
We travelled in style, we enjoyed the quality time.
Our first stay in a hotel together was the night before we flew to Hetta in Finland.

IMG_3845 IMG_3847IMG_3849

 

When we arrived, it was amazing, truly magical. Stepping off from the plane down the steps onto the beautiful white snow. Breathing in the freezing air, it was a dry air, a dry crisp air.

I would like to share a few pictures of our amazing trip:

482815_10205697897950159_4300151974522745786_n 734661_10205697889469947_7537287527712718409_n 983689_10205697869389445_1950831052823810041_n 999758_10205697909190440_1960415102661827176_n 1456759_10205697874309568_5528662775881827124_n 1888668_10205697905030336_4421551082058694346_n 1900126_10205697888269917_3928057333685241897_n 10152592_10205697906150364_4423236954642752408_n 10403156_10205697909350444_8137336502324520604_n 12347827_10153897575058474_1082507089557782230_n 12359899_10205697890589975_8365858240990226862_n 12366425_10205697895590100_1159230268024542709_n 12373286_10205697907870407_1808077171168319660_n 12376113_10205697907070387_5038183990426795187_n 12376524_10205697900270217_8442836930624055302_n

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We met Father Christmas

 

 

 

 

 

 

 

Thank you all so much for making this possible. we loved it!!!

3 comments
admin….Lapland….
read more

Running so fast my feet don’t touch the ground

Life is and has been fast passed for sometime
I’m trying to live in the now, but also plan for the future, my future being next month, the next few months. At the minute I am not thinking much further than May.

Life in my head is crazy, the past week, I was feeling really sorry for myself. After the amazing trip to Lapland (which I will blog about soon) then spending Christmas with my family in Wales and then entertaining at home, then having treatment. This was over a 3 week period, I was exhausted. I then needed to catch-up and sleep for nearly 5 days and nights to recover.

The recent thoughts that I have been having has really been upsetting me, I’m at peace about dying, the transition I feel ok about. the bit that bothers me is when I’m not here, when I’m put in a body bag, alone and cold in a morgue then to be in a coffin (what’s it like?) closed shut tight then to be burnt. I know I wont feel it but its still something I think about.

Death happens to us all, I know that, but not yet, I want to live, I want to live to an old age. I know that’s a dream that will never become reality.

My medication has been changed which has improved the excruciating aches and pains in my joints, it means taking more drugs, I can now move my fingers and stand up on my feet without being in to much pain. My lungs remind me that I’m not well, every breath they crackle, they now need a puffer, a puffer that lasts/works for 12 hours.

I intend to fight this battle, that I, we are in.

No comments
adminRunning so fast my feet don’t touch the ground
read more

Just a little Poem,

Just a little poem, that one day they’ll read.

Why me, how can it be,
I am meant to be here with my three,
To see them grow,
Now how will I show,
Them what they need to know.

I love them all so much,
I can’t bare to see or touch them

I’ll entrust them to and amazing two,
I will watch but can not touch,
I know they’ll miss me ever so much.

Your mummy loves you all ever so much

No comments
adminJust a little Poem,
read more

Therapy and Christmas…?

Today is the first day I have blogged in daylight hours,
This morning I went for my monthly Therapy sessions. I have been having these sessions for a little over a year now, the hour session never last an hour. This time enables me to unlock the cupboard that I lock myself into. Its something I’ve had to do for many years now, even more so in the past two years since I was first diagnosed with primary Breast Cancer. In these sessions I feel very comfortable to openly talk about anything and everything in my life, its very therapeutic and I would really recommend it to anyone with any kind of struggle.

I have very recently learnt to put any/every aspect of my life into boxes.
Here are a few of those boxes or things I’m having to think about:
Getting ready for Lapland, Buy for Christmas, organise the children for hospital visits right before Christmas, sort children for my treatment for after Christmas, change oncologists, make sure I have enough drugs for over the Christmas period, buy gifts for the children for when I’m not here, organise my funeral. Just to name a few…
Try and rest, mental rest is needed more than the physical at the moment.

HOT FUSHES are driving me nuts as is the weight gain.

while I’m typing this I am listening to Adele, he new album: 25, its lovely.

Last night I was sat wrapping the presents, listening to the radio. The realisation that there is a big possibility that this could be my last. Yes I know I could have years, but I know my rapid decline since early September this year. I am being realistic with myself. I also keep forgetting I am only 5 weeks and 6 days post operative from a radical hysterectomy and taking a massive concoction of drugs.

when I am driving in the car on my own, I have the time to think. think about the things I don’t want to think about, don’t want to think about them because it breaks my heart even more than it already does if that is possible.

today the sun is shining and that I am thankful for, it means I can jump on my scooter and pick my trio up from school.
Be blessed and stop and smell the flowers.

No comments
adminTherapy and Christmas…?
read more

Feeling Robbed

Its Sunday night which means ‘blog night’ I feel.

I really feel robbed of many different things, even now, with girly get together’s, future holidays away, falling in love and fun times. the list goes on.

My children are amazing, today (06-12-2015) Has been a chilled out PJ day for them, relaxed time and chilling out with each other mixed in with putting up the Christmas decorations.
I find that it doesn’t matter in which combination I take my 4 hourly medication it always knocks me out or makes me extremely tired for a short while. with that I’ve had a couple of short naps today to recharge.

How has by body been today:
My left leg which is numb for most of it has been painful behind my knee, which general stiffness in my legs. My Pelvis and sciatic nerves have been manageable unlike my back pain, that’s been painful. Up until now (22:35) I’ve forgotten I can take oramorph, which I liquid morphine. my rib on my left side has been tolerable.

Last night just before I fell asleep, I thought of the moment that the coffin lid would close on me for the final time, (I have only one fear and that is being buried alive). I will no longer breathe, smile, laugh, hug my babies.
I am dyeing and there is no amount of money in the world or prayers that will change our out-come, but it makes what we have left a much better quality of life. we thank those who help us x

No comments
adminFeeling Robbed
read more

Night time fears

I originally wrote this on the 11th October 2015 in the middle of the night, I wanted to put this on my blog to share with you.

2 hours sleep.
How can it all be real.
I’m 35 and should be living my life, enjoying it, planning fun stuff for our future. I should be Guiding them. Cuddling them. Seeing them at their prom. Being their taxi driver after parties, hearing they have fallen in love, hearing about adventures they want to do. Weddings. Babies. Driving lessons.
Not trying to work out how I can cram a life times worth of love and advice into a bloody book. Or trying to work out where they will live when I’m gone.
Our lives are broken into a million pieces and there is not enough glue to put it all back together.
Keeping life ‘normal’ in front of them is heartbreaking, i can’t cry.  When it’s quiet and they are asleep it’s time to think. I hug them that little bit tighter. That one extra hug. That one extra kiss. That one extra ‘I love you’.
I can’t even begin to imagine how they will cope with reality, they’ll have each other. I see My big boy as a warrior just like russell Crowe in the gladiator with the roar of a lion in his belly, skye a gorgeous princess who helps everyone, who enjoys a party, Blake like Robin hood, quiet but when he finds what he is aiming for he hits the target.
They all carry this special something. Those who know them know they love their cuddles just like their mummy.
I hope they live their lives to the full and show love, compassion and understanding to others.
My friends, I ask this of you where ever they will be let them know that they are the best thing that ever happened to me.
I am not frightened of dieing it’s my trio who I leave behind. Their little lives, why us

No comments
adminNight time fears
read more

From The Heart

I’m not sure how to start this post:
Its been a very crazy 8 weeks and a day, lots has happened good and bad. I am sat nice and cosy in my lounge snuggled under a blanket in my pjs, lights down low, candles lit and listening to Adele’s new album.

Today, for me has been a big day, not only did I eat yummy cake but I sobbed, my first proper cry. Life has been far too fast recently, today I managed to grab am hour of two on my own. To stop. To be still. To listen to music.

Yesterday was a super manic day, I saw my Oncologist (who deals with my treatment) He was happy my cancer markers are stable and at this point I don’t need chemotherapy. This in itself is worth celebrating.
I saw my chest X-ray in which I had earlier this week. This was a ‘base-line’ X-ray. noticed a bend in my spine and he confirmed that I have scoliosis, which would explain the upper back pain I often get.

Previously I have voice recorded the letter I had written for my children, but I hadn’t done any visual recording until yesterday. I hadn’t thought much about how I feel about the questions that where going to be asked. If I’m honest, I try and not to think that much at all, because if I think my heart will break even more than it already has.

Every song I hear, I listen to the words intently. To listen to the words, just in case its appropriate to play at my funeral… That is something I quiet often think about. What I will wear, what type of coffin, what songs I want playing, what movie clips I want playing… You see, this is why I try not to think. I AM JUST 36 NOT 86!
Do I think this Christmas is my last, there is a great possibility it will be, I am real, my mobility is deteriorating, my lungs crackle, I get short of breath easier than I did a few months ago, I ware out quicker…

I have already started buying the children gifts for when I am not here. I’m not just buying them Christmas gift for this year, I’m buying for their future milestones, passing their driving test, their wedding day, their babies in which I will never get to cuddle, to kiss, to see them being born. To love, help and support my babies with their babies.

Life is so precious, so fragile. I don’t understand, why.

I am mentally shattered from having to think of so many things at the same time. I am looking forward to next week I will be seeing my mummy.

Happy weekend everyone x

1 comment
adminFrom The Heart
read more

The Fun in Fundraising

Wow, is what I would like to start with…

I struggle to put into words how much I (we) appreciate all the hard work that it takes to fundraise any type of event even without the emotional side of this journey.
so far (event wise) there has been the chocolate run

These amazing ladies and little ladies raised money and I truly hoped they enjoyed the day, it was a wet and windy one for them all. An amazing medal and hot chocolate at the end….

 

No comments
adminThe Fun in Fundraising
read more