A Year later…

I am a year on from my terminal diagnosis, it is nearly three years from my primary diagnosis.

I really don’t know how to feel about it all at the moment if I’m honest. The year has flown by, we have recently got into a new routine where the children stay with Paul and Becca two days per week. This is a great amount of time for me to recharge and relax knowing they are in safe hands. this then gives me a lot more energy to get through the weekend without feeling exhausted. All five of the children seem to be settling well with the new routine.

I have started writing down all the important information in a little book for when I’m no longer here. I am hoping this blog will continue with all the great things the children will do and become, so they can read it, so it can all be shared with everyone. The children then can show their children.

The GSO (Guardianship Order) has started, the children have been interviewed. Vince especially fund this painful and cried as he wants to live with me always. He knows this cant happen. They all have amazing times making a family of four to seven. I get sent lovely updates and sometimes pictures of what they are doing. I will post some on here soon. The GSO will enable Paul and Becca to make decisions about the children if needed, for example. in an emergency situation  I give them permission to make a decision on my behalf. The GSO order is a very complex order. lots of professional bodies are involved and this isn’t cheap, its approx. over £1000.  Nothing is simple in the process of dying young. when the GSO order is complete I will then focus some of my time on organising my funeral.

As you can probably tell by this jumbled blog that I have so much stuff in my head that I need to ‘file’ it soon.

I would like to thank Claire Searle, a mum at our school who is running the Great South Run at the end of the month and trying to raise money for us. It is really appreciated Claire. Thank you.

My ‘nerve ending pain relief’ I am taking is on maximum dose. My Rowans/Macmillan nurse is letting my Oncologist know this. I am having pain in my pelvis and pains going down my legs. It is likely I will need Radiotherapy again, this will hopefully help with the pain, its just a ‘wait and see’ for me with that one at the moment.

That’s all for now folks,

Please can I ask you: if you wish to ‘make a comment’ please can you do this on the blog and not on social media, this gets ‘lost’. I would like the children to be able to read them at a later date. Thank you 🙂

 

 

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The Emotional Pain and The Physical Pain of Cancer

Upon reflection of the past 3 years, from finding the lump in the shower on my right breast, to having it totally removed with my lymph nodes too. Two months later I started six months worth of Chemotherapy which then followed 3 weeks (daily visits) of radiotherapy to the inoperable areas around my right breast, collar bone, ribs etc. From there nine months later I had breast reconstruction, basically a tummy tuck. The skin, fat and blood vessels from my tummy reshaped to make a breast. Six months later (Oct 2015) I was diagnosed with secondary breast cancer, basically the cancer has spread to other areas of my body. more radiotherapy. Two weeks later I had a total Hysterectomy. Four months later I had 1.7ltrs of fluid in my pericardium (the sack in which my heart sits) this was an emergency removal of the fluid. I then had 5 rounds of chemotherapy as cancer cells were shown in the fluid, which means cancer has spread further.
So, basically that is what has happened to me in the past three years.

The emotional pain of all that has happened is such a big load, thankfully I have seen a therapist the past 18 months to off load to. It is all starting to sink in and its starting to feel real. I think now that I am unable to do as much as I used too. I do push myself at the weekends when the children are home with me as I cant have a snooze to recharge these worn out batteries.

I have in the past few days been listening in on the children chatting and playing (on the whole) and how lovely it is. I stopped and listened to them, such precious moments.
It breaks my heart to think I am nearly a year later from my second diagnosis, how much longer do I have? how many more conversations am I able to listen in on?  Is this emotional pain I feel comparable to the physical pain I am in? Yes, I think sometimes it actually is.

I am mourning for my death before I have even died, how can I miss the future that I wont experience.

Before I was told I had cancer the second time, I always had a ‘niggle/fear/worry’ at the back of my mind that it would return. Any ache, or pain, any headache… was it back? for anyone who is in that situation, my heart totally is with you.

I know there wont be a day in my life where I am not thinking about cancer or the destruction its causing/ it will cause amongst my family.

When I see/hear how much fun the children have when they are with Paul and Becca it reminds me how inadequate I am now to them. I am truly grateful I can give them the kisses, cuddles and story times. Its a different kind of fun. I will never be able to thank the amazing new family who look after us, even now.

The physical pain I have is in my knees, spine, chest, feet and sometimes in my hands and ribs, I am on a good cocktail of drugs to keep me mobile, since the children have returned to school I am trying to walk everyday. it does exhaust me but the exercise does me good. I cant cram activities continually/consistently in the six hours that the children are at school anymore. I know that and have accepted that I cant and I only do one activity in the day to enable me to rest or I pay for it.

I try my best everyday to see the positives in everything,
I try my best to think positively about myself and that I have woken into another day. One of my biggest fears is not waking one morning and the children finding me. I really cant think about that for too long.
I do find waking in the morning very, very difficult. Waking/being woken before my body is ready is something I find increasingly difficult. I have to motivate myself, I really do try and I do get there in the end. I am much slower in the mornings and find things, taking a shower and doing the school packed lunches too time consuming now, so they are done the night before.

If I think too much about what the future holds for us I will crumble, then I’m no use to anyone. so that part of it is locked away in a box somewhere in my head.

sleep well and thank you so much for reading.

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Letting Go

I have really found letting go of the children such a painful experience. Physically and emotionally hard letting them go. knowing at some point (maybe soon) I wont be able to care for them full time any more. I know in  my heart that I have made the right decision for my three children. It still doesn’t feel real. How can this be? I should be looking forward to a great future, I’m 36 and shouldn’t be sorting out my funeral.

I now struggle to have the children all the time without a break, I struggle to ‘parent’ them in the way they need. two days in the week the children will stay with Paul and Becca, except on the Thursday in which one of the children will have 1:1 time with me after school and overnight.
This week I have had Skye 1:1, Skye chose to go out for dinner to her favourite restaurant, she invited her Aunty Kirstie and her cousin Shannon. Where the restaurant is situated it makes us feel like we are on holiday. Sitting by the water, watching the boats moored up in the marina, lovely warm evening. It was such a treat to just have some girly time.

My body is getting weaker, I get worn out quicker, I need much more sleep, my memory is awful, I need help cleaning around the house, gosh reading this I sound like a right lazy thing. In a few weeks time it will be the first anniversary of my terminal diagnosis. I feel very lucky that I have got this far, I wonder how much more quality time I have left. that is a question no one knows the answer to, I am determined to make the most of every day I have left. Even if it means I sleep/rest more.

One thing I really do miss, is girly time with the mums from school/any of my friends. cancer is so isolating and a lonely  place. Its been 3 years now and I fell as if I have missed so much. – Sorry for the moan –

I hope the children remember the things we did together. That all 3 have a close relationship, I hope they talk about the fun times with each other. I would love to be remembered as a mummy that tried her hardest. I hope that the children tell their children about all we did when they were children. I wonder what the children will grow up to be. As long as they are true to themselves and are honourable and true. I don’t mind what they will be.

Next week I am really looking forward to going into my friends jewellery shop and she is teaching me how to make some jewellery for each of the children. I took Skye in there this afternoon. She looked in every cabinet and chose one of the most expensive rings in there. She tried one of them on, Nikki educated Skye about diamonds and what size is acceptable to receive. (it wasn’t a serious chat)

Take a day at a time peeps.

that’s all for now. Thanks for reading

 

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Honestly… Life Is Crazy

Thanks for reading this, my latest Blog (16-08-2016)

I apologise for not writing for sometime. Firstly because I have not been well, physically or mentally. Lots has happened so I apologise if I jump about from one thing to another, ill try and keep it together.

Firstly id like to start with my recent hospital visit to Dr A. my recent brain scan showed no evidence of disease, The Mri scan on my spine showed cancer in/around my 8th vertebrate. Lastly the CT scan showed no further advance of the disease spreading. My Pericardial effusion is clear (the cancer cells in the cavity around my heart). The Bone treatment which I have injected every 4 weeks is working, its hardening/strengthening my bones and slowing the spread of the disease.
Before I went to see Dr A. I had decided that if she wanted me to have another cycle of Chemotherapy (which would have made it 6 cycles) I would refuse as it would be the summer holiday and I want to feel well. I had explained to her how much the chemo was effecting me. I struggled cognitively, I would go into a shop and not be able to think or remember what was needed. My brain was literally blank. I wasn’t able to cook a meal, putting the ingredients together was a real task, I didn’t know how to do the simple tasks of cooking a meal.
The Drugs that I am on make it harder for me to wake early in the morning, so the school run is a real challenge.
Anyway, back to Dr A. I had explained all this to her and she wanted me to stop the chemo and start on steroids, to help bring me back to ‘normal’ I think I was on these for 5 weeks.
After I had finished the steroids I was very sick for a couple of days, hot and cold. 3 days sofa/bed bound. A huge thanks to Nise for coming over to the rescue and sorting the children to friends for me whilst I recovered. Thank you so much Emma and Kirsty for having Skye and Blake. Thank you to Jan for helping me with the housework. Thanks to those of you who have brought a delicious meal round to us.

I really wasn’t well, I felt so cold but I was sweating so bad. I had shortness of breath, umoungst all of that I was having really dark thoughts. To end all this, to take all the drugs, it was all too much for me, the being weak and ill. The thoughts of having terminal cancer. The impact my death will have on the children. At that point I realised it would be them who would find me if I had gone through with ending my life. That was the point that I realised they need me to carry on fighting. Fighting the pain daily, taking the drugs, being absolutely shattered and the demands on my body that being a lone parent of 3 very lively children bring. Thankfully those thoughts come round very few and far between. My children really do ‘get me up and keep me going’.

So, currently I have cancer in: My Clavicle, lymph nodes in my chest, my heart, rib no.8 on the left side, my pelvis, nodules in my lungs and tumours in the tubes to my lungs. I think that’s it.

The days are getting better, I am feeling stronger, not just physically but mentally happier too. I am starting to get the feeling of wanting to get my sewing machine back out, to use it, to be creative, to feel ‘normal’. I am enjoying being able to do the housework, so is Skye, she has helped mop the floors.

On the up side. We had a photoshoot done very recently and I would love to share one of my favourite photos:

A massive thank you to James Anderson who took these pictures, we had a great time.

That’s it for now, thanks for reading
IMG_9731 IMG_9749

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The Legalities

IMG_2154

Wow, there it is. My Will is now a legal document as has the Guardianship for my children became a legal document this morning (13-04-2016) I can’t thank Paul and Becca enough for offering to love, care and nurture my children into adulthood and beyond. That is truly a selfless and a massive thing to offer. I would like to also thank those of you who have contemplated about finding a way to do what Paul and Becca are. I am sure there have been lots of conversations amongst you who want to but cant for your own family commitments, I thank those of you, with the deepest of thanks.

I would like to thank Lynn, Lynn you are a very special lady to me. We have been through some tough times together, we have had many laughs, lots of tears along the way. This morning was an emotional one. Sorting out my Will with you sat by myside, sorting this out is something that I have been putting off for sometime now. With thanks to you, I did it. I have not wanted to face the reality that this piece of paper will be need to be used at some point, possibly soon.

Today we shared some more tears, tears of all of this “rubbish”, tears of all of this being unfair. Tears of fear whilst I lay in a black bag in a morgue, cold and on my own. I know I will be dead then but its still a horrid thought I have.

The past couple of weeks I’ve felt overwhelmed by the sheer volume of thoughts I’ve got in my head. Every single element in my life needs sorting. I am feeling exhausted and yet I forget I am on a good dose of chemotherapy everyday – twice a day in fact, 2 weeks on the drugs and one week off for my body to recover, then back on it again. The drugs seem to be zapping my energy levels a lot. I have recently stopped taking one of my night time painkillers which made me very drowsy, even through to the next day. I am feeling much more alert and less “drugged”. I have started to notice my mouth is changing again from being a healthy and normal mouth to one that is starting to loose the skin in the inside and starting to grow ulcers. I have noticed a tingly feeling in my feet but not noticed anything yet in my hands. All of my insides are starting to change (I’ll spare you the gory stuff).

I had the optitions today for a contact lens check up. He remembered me from last year and commented on how much more hair I have, he asked how my health is now doing. So I explained the progression.
Much to his delight, considering the drugs I’m on, my eyes are coping remarkably well. They are tolerating the contact lenses very well, although the further along the course of treatment of Chemo I am on the worse my eyes get and feel like my eyes are full of sand this then stops me from wearing the lenses and to give my eyes a rest for a day or so.

I suppose the next thing for me to organise is my funeral….

Thank you all so much for all your love and support x

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More Bloods, More Scans, More Results.

More Bloods, More Scans, More Results.

So, I have finished my first Chemotherapy (by tablet form) 2 week session. One week off from chemo, then two weeks on etc.

Yesterday (04-04-2016) myself and a great friend Carole, went to the Hospital to get the blood results which I had, had done a few days previously. The day I had my bloods taken (which took 3 attempts, my veins have had enough) was the morning in which I had only just finished taking my last chemo tablets. Not realising/remembering the results from the blood test may show that I am neutropenic (not enough white blood cells to fight infection). I was borderline neautropenic, so I was asked to have my bloods retaken in a few days time to give my body time to get the levels back to normal.

Within that blood test the levels of my CA15:3 (cancer markers) have dropped further. Initially the started back in October 2015 at 127, now they are at 32.1. The markers are continuing to drop, this indicates that the treatment I am continuing to have for my bones are working!!!!

A couple of days before seeing my oncologists senior registrar, I had a CT scan performed, this needed for me to have a cannula in my arm (this took 2 attempts in the same arm, as the day before) so in my hand it went.

I was scanned from my eye brows, down past my pelvis. The results of these hadn’t been ‘written up’ so I’ll get those at my next appointment.

 

 

 

 

 

 

 

 

 

 

 

 

 

above is my heart now              above is my heart a month ago
with no fluid present                  with 1.7ltrs of fluid

 

When I get the results of the Ct scan I will let you know.

 

Thank you so much for all your support, a big thanks to my parents whom have had my trio the past few days to give me a rest.
Another massive thank you to a dear friend of mine who suddenly and very sadly lost her daddy, he fell asleep and didn’t wake up. Thank you Carole of giving us all the freedom of your daddy’s mobility scooter that happily fits in my boot. Rest Well Peter, you were an amazing dad, a great English teacher, a brilliant taxi driver to hockey matches. I have many fond memories of you Peter, We will have fun and freedom with your scooter.

Thank you for reading my blog x

#HHH

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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

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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

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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.

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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

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