feeling lost and its feeling real.

The past month or so has been a real tough one. I have been unwell again with my heart filling up with fluid again. This time I left it as long as I  could without getting it drained off.

In the end I felt that breathless I called for an ambulance, I have never felt that breathless in my life. It was a frightening experience, one I hope to never experience that bad again.
I was ambulanced to our nearest hospital and was looked after very well. I was very lucky I didn’t have to wait too long before my treatment started. Chest x-ray, bloods taken. The following day the pericardial effusion was drained, 1.5 ltr was removed. I felt much better, I was on total bed rest, every time I sat up my heart rate would jump from 88bpm to 105bpm. my blood pressure was fine, most of the time. Over a period of nearly a week my heart started to recover and settle down. I was in the high dependency unit for some days and as I became better I was then put in the ‘step-down’ unit, I had my own room with a view and en-suite, I felt very privileged. I came home after 5 days in hospital.

I have since found out from seeing my heart surgeon that if I was transferred over to another local hospital which does the ‘window’ heart procedure whilst my heart was full of fluid the window could have been put in then. As this hospital was only told after my heart was drained, I now have to wait until it fills up again before this can be done.

After I saw my surgeon, I then had a pre-op done, so when the time comes to get it drained again this process had already been done. One of the questions I was asked was: ‘where do you have cancer?’ I took a deep breath and replied ‘my chest, lymph’s, ribs, heart, lungs, spine, pelvis…. I think that’s it’
I then realised how much this disease is eating away at me, I am becoming weaker and needing more sleep. I don’t feel motivated to do anything.

last night (thurs) I had my 1:1 time with Vince. we had a lovely time Christmas shopping for other children, went out for dinner, the time we spent together was great. whilst he was getting ready for bed he sat and cried, we spoke about lots of things, his biggest fear is me dying. He wants to be with me all the time, when he isn’t with me and his mind is distracted when he is playing with Noah and Daniel, he seems ok.
This isn’t and its not going to be easy for any of the five children or the two parents that will need masses of support, weather its professional support, family or friends.

I talk about my death and dying very openly. I compare how well I was last year to this year, what about next year? will there be one for me?

I am going to give myself a slap and shake myself out of this self-pity.

chow for now.

No comments
adminfeeling lost and its feeling real.
read more

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.

3 comments
adminThe Emotional Pain and The Physical Pain of Cancer
read more

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

 

No comments
adminLetting Go
read more

Living Two Lives

For me I’m living two lives. 12-06-2016

(I am truly sorry if I am repeating myself, this is where I am at)

Last Fri (09-06-16) I had bloods taken from me, my right arm is now allowed to be used for taking bloods only as it so far has shown no signs of having Lymphedema (fluid filling the whole arm as lymph nodes have been removed). After having my bloods taken to check my Cancer markers, Calcium levels, etc. I went and treated myself to a hair cut, to then be told my hair is thinning, due to the chemotherapy. Note: This is a rare side effect of this drug

Later that day I went for my 12 weekly CT scan. Thankfully I had already drunk 1ltr before getting to the unit, this brought my scan earlier, I just needed to drink another half a litre and then I could be scanned. Little did I know at this point that the A&E CT scanner had broken and wasn’t going to be fixed for a number of days. I was very lucky to be scanned as quickly as I was. It was bedlam, rhesus teams, RTA accidents, it was something out of casualty. All the staff were amazing and coped extraordinarily well considering the pressure they were under to get everyone through 2 CT scanners. Anyway, I was then canullated in the right arm (same place as earlier in the day). I was gowned and canullated and all ready to go. I layed down on the CT scanner bed head first, I was hooked up to a machine which pumped this contrast into me, the bed slid through this huge polo. I was injected with this contrast…. in all honesty it makes you feel warm and tingly all over and makes you feel like you’ve wet yourself. I then had to do this again as they wanted to scan my head. more of this contrast pumped into me.

All the while this was happening, I was missing the school celebrations of our Queens 90th birthday party. I really didn’t want to leave them, watching them play with their friends and having fun. I absolutely hate it when my two lives clash!
My hospital life interfering with my home life, it not only impacts my time with the children, they don’t like me leaving them to go to hospital. It has been our lives for nearly 3 years now.

I am Tired, I get tired quite quickly now. I’m not sure what makes me so shattered. The emotional side of everything or the concoction of the hundreds of tablets I take a week. I sure need a nap in the middle of the day, I feel like an old granny 🙂

The Children are great, they let me sleep in later at the weekend, I seem to spring to life around 3pm. which is absolutely ridiculous.

Tomorrow (13-06-16) is results day, results from my bloods and results from the CT scan. I know the results wouldn’t have been ‘written up’ but they will be on my file to be seen. I’m really hoping my pericardial effusion is ok (my heart problem) no fluid around my heart. That the nodules in my hillier (right and left) tumours (the branches that go to the lungs) have stopped growing, the nodules in my lungs are still that. my bones are still strong. Even though I have ground cavities into my teeth in which I now need fillings on Tuesday, the first fillings ever! I am now very prone to bones breaking. I have an injection every 4 weeks to strengthen my bones, as I now have no hormones rattling around inside of me anymore. It is the same treatment that ladies have that have osteoporosis.

The good thing is that I am not short of breath, which is a good sign that my heart hasn’t filled with fluid again.

This part is the horrid part. The Waiting. The What Next…… Am I responding? Do I carry on with the Chemo? so many questions and so many cant be answered.

I am getting used to this waiting game and it is my new ‘normal’ my life revolves around my gorgeous trio and the hospital. I am trying to get to see my friends more, when I can and when I have the energy.
We are eternally grateful for our meals we have a few days a week and our amazing helpers, without those id struggle even more.

Chow for now xx

 

 

No comments
adminLiving Two Lives
read more

Just a Quick Update

Just a Quick Update (25-04-2016)

Hi all,

Today I had a midday appointment, not realising I would be waiting nearly 3 hours to see my Oncologist. She must have had an emergency earlier on in her clinic. The waiting for your 3 digit code to be called is emotionally tough, to pass the first hour I sat and partially got through a puzzle which someone had previously started. As I say that passed the first hour….. then chatted to a few people…
Dr A. my Oncologist is very happy that I am responding to the Chemotherapy which I am currently on.
Comparing my last two CT scans, the latest one shows that my first Cycle of Chemotherapy I am responding to. My markers have dropped by two to 30.

I informed her that I have recently been suffering from shortness of breath so I need to go back in a couple of days to have another Echocardiogram to check all is well with m heart. In the recent CT scan it showed I had a happy heart.

My bloods can now be taken from my right arm 🙂 As I have now gone past a two year period and I have been lucky enough not to have had lymphedema, she is happy for me to take the risk and have bloods taken from my right arm as the veins in my left arm have ‘had enough’.
The start days of my chemo will be changed from a Friday to Monday, as when my bloods are due to be taken, I am close to being neutrapeinic, by having blood taken on the day I finish a  two week session of chemo doesn’t give my body time to recover to give a true reading to see if I am well enough for my next lot of chemo.

The children are really happy of my good news, especially Vince as he is that much older and understands more than Skye and Blake…

That’s it for now…. I am aiming to defy science

No comments
adminJust a Quick Update
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

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

A Second Opinion…

The second opinion which has been rattling around at the back of my mind for a while now. A second opinion which a great friend of mine ‘pushed me into a corner’ to get one, massive thank you Kirsty.

Today I visited the Royal Marsden Hospital in Surrey, I saw a Professor in the breast cancer department. He made us feel like we mattered, He is more than happy with the treatment plan that I am on, they are the most up to date drugs available. There are no trials that are open for me to go on. Thankfully, although the cancer in the bones is far more extensive than in my organs, this gives me time.
He wants a tight structured plan ahead for me which will be carried out at my local hospital, if I feel the need I have been assured by him that I can get in contact with him again.
Time to share, time to laugh, time to have fun.
My trio have been reassured that I have time, they took it well, with laughs and tears.

1 comment
adminA Second Opinion…
read more

Oncology Called…

 

Three days post operative and I received a all from my Oncologist secretary for an appointment for 3 hours later. All sorts were running through my head as to why, what, what has happened?
I managed to get a lift from a great friend who took me to the appointment, it transpires that I was called to sign a consent form for my next lot of treatment. I need bone strengthening injections every 4 weeks to help keep them strong but also to help slow down the spread of cancer in my bones. All signed, all dated… I was then asked I there were any questions? I had asked to see the Nuclear bone scan and CT scan results, not expecting to see them. I was showed them, in all honesty seeing the ones of my pelvis blew me away. Its bad, worse than I thought! worse than I could ever imagine.

pelvis

The picture above is a CT scan which takes pictures in slices through my body. the white area of the picture is a section of my pelvis, the dark area within the red circle is cancer within my pelvis.
Below is another CT scan picture of my ribs, again within the red circle is the mass of cancer in and around my rib, if you look on the opposite rib, you can see the difference.
ribs
Above, you can see two black pockets by my ribs, these are my lungs, the white dots are cancer tumours.
Below is the scan picture of the Nuclear bone scan I had performed, I have circled all the areas effected by cancer.
bone scan

 

 

No comments
adminOncology Called…
read more