Secondary Breast Cancer - After care

Hello to those that follow me or to anyone thats interested. This blog post is on a subject that is extremely important to me and anyone else who is currently dealing with secondary breast cancer dx. Its about after care, so far my team at the hospital have been amazing BUT I still don't have a dedicated Breast Cancer Nurse who specialises in a secondary dx. The general Breast Care Nurse only works on a Wednesday and Friday.

This disease as we all know affects all of us differently with 10 sub-groups and various levels to those groups, I think we would all agree that a new approach is needed if we are to move forward with our lives and living with such a dx. The disease affects everyone so differently and what might work for one doesn't necessarily work for another. Fundamentally we need help, specialised help from a dedicated secondary nurse who is at the other end of the phone (not just on a Wednesday and Friday). At the moment we have the wonderful Breast Cancer Care Charity who have a hot line to ring if you need it and I do ring it, to discuss all sorts of problems from treatments to side effects as well as personal emotional issues, but it would be a lot better if I had someone I had grown to trust and know, who understands me and my dx, who can offer real educated advice on all sorts of matters not just medical but also on an emotional level.

Here's al link to Breast Cancer Cares campaign 'Secondary, not Second Rate' https://www.breastcancercare.org.uk/sites/default/files/secondary-nursing-report.pdf this outlines my feelings on this subject and offers an insight into how we can help others live there lives with care and compassion.

2nd Mastectomy

Some people will know that I have always wanted the left hand breast removed. From the very beginning when I was first dx I wanted to have both off but the surgeon wouldn't perform it saying and I quote "I never remove a healthy breast" however I argued that with secondaries as well I wasn't living with a healthy breast but rather a ticking time bomb. Not only was it a cancer bomb waiting to erupt but also it had grown from a size 32 to 42 in a very short time making it stupidly large, also I can't wear a bra as when they took the bad boob they also took a lot of lymph nodes out down the side of my body where your bra strap sits this causes a lot of pain when I wear a bra hence not being able to wear a bra making me feel out of balance, looking out of balance, carrying extra weight on that side and a boob that is feeling the force of gravity altogether a right pain in the tit! Seriously though, I have been suffering with the odd weird pain in that breast and of course worry like mad that its something more sinister.

So finally after a lot of pushing on my part the powers that be have agreed that to remove it wouldn't be such a strange idea and are now offering me surgery dates of the 12th of September, I only got informed of this on Friday 31st August, so got this weekend to discuss and go over everything with my long suffering partner. Who agrees it should go.

Weekend over and decision is made. Pre-op this Thursday and operation next Wednesday.

Feeling a little anxious but I know it makes sense and thank god for the NHS I can have the operation and with any luck will live a little longer.

Wish me luck.

I'll Find My Way Home.....

Yesterday was a mixed bag of conflicting emotions on the one hand I was boosted by feeling enlightened with the Wounded Healer stuff and then I dove head long into a deep depression the only explanation for this is probably my hormones and the overall helplessness of my situation. I really want to stop having Herceptin and Zoladex but I know it would be the end. However, I am not afraid to die after all we are all heading in the same direction and no one can cheat death BUT I suppose I've still got something to accomplish on this planet and the survival instinct kicks in and you carry on taking the drugs plodding along on a knifes edge waiting for the next twist in the road or rather knowing there will be another twist in the road. I actually told my partner he would be better off without me and that I wanted to "stop the world from spinning cause I wanna get off." This all happened yesterday afternoon so I went to bed feeling suicidal and very low I woke up this morning at 5am not feeling any better but as I've experienced in the past a song running over and over again in my head and its not a song I've ever bought or even liked so I assume its another message from spirit as 'they' must know how bad I am feeling todays song was I'll Find My Way Home by Jon and Vangelis. If I wake up that early I have to get up otherwise it will develop into a migraine so I got up and looked the song up on my phone the lyrics shocked me, I didn't realise it was actually a prayer dressed up as an 80's pop song which is very deep with multi layered meanings. Here's the lyrics and the song on youtube https://www.youtube.com/watch?v=T9Y3m7fisOU

You ask me where to begin
Am I so lost in my sin
You ask me where did I fall
I'll say I can't tell you when
But if my spirit is lost
How will I find what is near
Don't question I'm not alone
Somehow I'll find my way home

My sun shall rise in the east
So shall my heart be at peace
And if you're asking me when
I'll say it starts at the end
You know your will to be free
Is matched with love secretly
And talk will alter your prayer
Somehow you'll find you are there.

Your friend is close by your side
And speaks in far ancient tongue
A seasons wish will come true
All seasons begin with you
One world we all come from
One world we melt into one

Just hold my hand and we're there
Somehow we're going somewhere
Somehow we're going somewhere

You ask me where to begin
Am I so lost in my sin
You ask me where did I fall
I'll say I can't tell you when
But if my spirit is strong
I know it can't be long
No questions I'm not alone
Somehow I'll find my way home
Somehow I'll find my way home
Somehow I'll find my way home
Somehow I'll find my way home

Songwriters: Papathanassiou, Evangelos / Anderson, Jon
I'll Find My Way Home lyrics © Sony/ATV Music Publishing LLC, Warner/Chappell Music, Inc.

Liar liar pants on fire....

It's been a couple of weeks since d-day where Onc told me of 'something' on my liver.... I had another CT scan just on my liver last week although they couldn't use the contrast dye as my veins were playing up so not sure how good the scan image will come out, got everything crossed it goes ok and they can see what they want to see and that it turns out to be nothing other than scar or fatty tissue. Feeling like a fraud because I told everyone the first scan came back ok, why did I do this because nobody seems to understand me well I say no one what I actually mean is everyone other than the poor women who also are afflicted with this shit. My best friend, my mum and dad, my auntie and cousins and my friends they just don't understand the hell I am going through. Its partly because they believe what they have been subjected to in the press about breast cancer no one ever discuss's metastatic breast cancer or secondaries, I have too explain to people what it is I've got. One of my good friends was of the opinion that I had primary lung cancer I had too explain that its breast cancer that has spread not primary lung cancer what makes it all the more harder is that this is such a complicated and individual disease. Another friend can't understand why I'm putting on weight I've told her its the Tamoxifen but she knows someone else who had primary breast cancer and who stopped taking the Tamoxifen after 2 years and in her words "she's not fat" I feel exasperated by this blinkered way of looking at what is a massively complicated subject. There is no hard and fast rule with this shit, if we could anticipate what was going to happen to everyone subjected to this disease we would be well on our way to a cure. This time I've lied, told a big fat porker so instead of having to reiterate the bad news to all I have kept it too myself and will continue to do so unless I absolutely have to. I'd rather tell a white lie than tell them the truth, this is my body, my bloody cancer, my shit and I'm in charge.

CT Scan Results........not good....

Hello everyone,

As the title of this post would suggest my latest yearly CT scan results are in and not good. The lung mets are still currently the same and classified as in a stable condition BUT 'something' is showing up on my liver at the moment and they (the docs) don't know what it is, so have requested that I have another CT scan asap to take a closer look. Onc. said "we did see it on your last scan" (which was a year ago!!!) and I suppose they were taking a watch and see approach, would of been nice if they'd of told me that was what they were doing!!! Anyway the upshot is we don't know what 'it' is on my liver just that something is showing up on the CT so in the next 2 weeks I should of had a another scan and d-day is the 1st of November.

Urghhhhhhhhh Obviously with a a stage IV dx of breast cancer anyway you always assume the worst, but I am trying to keep myself positive and upbeat, its like someone has tele-ported me back to that first day of being told "you have cancer" such a knock back feel dazed and confused about the whole thing and certainly was not expecting it, especially after all the juicing, supplement taking, and spiritual healing I've been doing, everyone say's I look really healthy, although my answer to that is "I looked really friggin healthy before I got cancer" thats the scary thing about this vile disease. I've decided not to tell my mum and dad yet I think I'll wait until we know what we are dealing with, I don't want to unduly upset them. I've told a couple of friends and treatment practitioners about it and found it helped to share the news and get it off my chest, also some of them needed to know as they don't seem to understand why I might seem distant or withdrawn at times by sharing this with them they get to understand why. Sometimes its harder to hide the truth and I don't need anymore crap at the moment. Feeling like I need to digest what has happened and meditate on healing, so going to spend the rest of the weekend with my brother Andy and partner Lee. Lee was with me at the appointment and as usual was my rock.

During the consultation we also discussed my hormonal status to which I've learned that I'm not through the blasted menopause not by a long shot so it seems I have to continue taking the bloody Tamoxifen, the onc. said with head tilted to one side "why so disappointed at not being through the menopause your so young" yeah true I'm 45 (42 when dx) but whats the point in going back to having periods when your bodies fucked with the drugs, chemo and menopause its not like I'm ever going to be able to have children is it? and as I'm plagued with major side effects from the Tamoxifen and the menopause I'd rather be through with it and move onto another drug that might be a bit more user friendly, honestly these docs say the most stupid things sometimes!

Got the scan in the next 2 weeks and appointment on the 1st so will keep you all posted as too the outcome.
Love and light to all
Sarah xxxx

Light a candle, say a prayer...

It is with a heavy heart like a ton weight bearing down on me that I bring you the sad sad news about BCC forum poster Karen aka SCACO (staycalmandcarryon) who has passed away. I don't know the full details all I could find was comments on an 'in memory' thread on the forum, it would appear that she had developed secondaries, apparently whilst on holiday and was taken from us very very quickly. SCACO was a great friend to me when I was first dx she was always so positive and upbeat, she was a clever lady with a great sense of humour. Taken way too soon (I think she was late 30's). It seems that it was a very quick exit and I hope she did not suffer in pain for long.

SCACO is now the tenth woman I have become friends with over the past 18 months that has passed away from breast cancer. I hate this fucking disease its so warped and twisted there is no rhyme or reason to it. I pray every day that they find the cause for this absolute nightmare of a disease, at least then we might have a cure.

"God, it's so hard to stay positive when all around you is the utter chaos of cancer and its associated outcomes, please give me strength and courage to carry on and in the process to support and help others. Amen".