The first day of summer......

Today was an especially good day, the sun was out yipeee!! and the garden looked wonderful, birds singing, bee's bimbling about, I managed to do some weeding obviously taking long breaks but feel great just for being outside and taking in the fresh air. Tis good to be alive.

Saw my GP today I usually don't manage to get my actual GP always seem to get one of the other Dr's but I specifically asked for him today and amazingly got an appointment with him, it was probably the best GP's appointment I've had in a very long time, he didn't rush me and sat patiently listening to all my aches and pains I also asked if he could find out when my next CT scan was as I was told they would be every 3 months initially its been nearly 5 months since the last one and I've had radiotherapy since then so really really want to know what the situation is with my lung mets and he agreed that of course I would be anxious to know considering the period of time and the treatments I've had, so he's going to write to my Onc. and ask him, he also gave me some Codeine for my cough and too help with sleeping, also some Clonidine to help with the terrible hot flushes and apparently it might help with the dreaded migraines, he even rubbed my rock hard shoulders and neck (probably due to anxiety) and told me to get some acupuncture. Can't tell you how much this means to me. RESULT.

Hymn for Her.....

I woke up this morning with this song in my head I think it is especially poignant because it is Mothers Day, I had to look it up and find the lyrics on-line its a song by Chrissie Hynde of The Pretenders (I'm sure she wont mind me posting this) in particular the words "She will always carry on, something is lost something is found" I've been waking up to music in my head now ever since I was dx and believe it is spirit talking to me or trying to convey a message. Anybody got any thoughts on this?

Let me inside you 

Into your room 

I've heard it's lined with the things you don't show 

Lay me beside you 

Down on the floor 

I've been your lover From the womb to the tomb 

I dress as your daughter 

When the moon becomes round 

You be my mother 

When everything's gone 

Chorus: 

And she will always carry on 

Something is lost 

But something is found 

They will keep on speaking her name 

Some things change 

Some stay the same 

Keep beckoning to me

From behind that closed door 

The maid and the mother 

And the crone that's grown old I hear your voice 

Coming out of that hole I listen to you 

And I want some more I listen to you 

And I want some more

CHORUS: 

And she will always carry on 

Something is lost 

But something is found

They will keep on speaking her name 

Some things change 

Some stay the same 

Let me inside you 

Into your room I've heard it's lined 

With the things you don't show Lay me beside you 

Down on the floor I've been your lover 

From the womb to the tomb I dress as your daughter 

When the moon becomes round 

You be my mother 

When everything's gone

And she will always carry on 

Something is lost 

But something is found 

They will keep on speaking her name 

Somethings change Some stay the same 

Keep beckoning to me 

From behind that closed door 

The maid and the mother 

And the crone that's grown old I hear your voice

Coming out of that hole I listen to you 

And I want some more I listen to you 

And I want some more 

And she will always carry on 

Something is lost 

But something is found 

They will keep on speaking her name

Some things change 

Some stay the same 

Happy Mothers Day to all 

Love and light Sarahxx

Refreshed but still worried

Been away visiting for a week up in Weston-super-Mare, saw all my old friends and stayed with my parents, feel quite refreshed now even though I was very naughty eating chocolates and drinking lots of tea and coffee all the things I'm supposed to of given up, now I'm back home and drinking the green juice, don't get me wrong its powerful stuff and I think really works, but it was so nice to feel normal going out and having lunches just being normal. Its certainly works wonders a trip away, unfortunately the trip was saddened by the sudden passing of my best friends dad, we'd travelled up together and now she's stuck there looking after her mother who has motor neurons disease, I asked her what I could do for her but really there is nothing I can do other than just be here for emotional support, due to this unforeseen circumstance I shall probably be going up to Weston more frequently.

Slightly worried cause I got a persistant itch on my mx site :0( the nurses at the hospital said they thought it was probably to do with the rads but I'm not so sure and really really need to have a ct scan last one was in Oct last year since then I've done 3 weeks of rads and been on tamoxifen and herceptin all of these could of had some impact on the stuff on my lungs. I have been to my GP and asked him to write to my Onc. about a ct scan but still no reply, so niggling in the back of my mind is the need for a ct scan and the constant worry this brings. Every ache or even slight pain is a source of worry, living with cancer is so hard not just physically but emotionally. Sorry this post ended up a bit negative but thats how I feel.

One Year on.....

Today it is exactly one year since I was dx with breast cancer , not sure how I feel, sort of very mixed feelings, trying to remember what my life was like before the dx, I was happier but stressed, oh and i had a lot more hair (although that is growing back now), it is wierd to think I've been dealing with this shit for a year and it has passed so quickly, not thinking about it nearly as much as in the beginning but still is not out of my mind totally don't suppose it ever will be but I do have a lot to be grateful for and I have learned a lot about myself and how I relate to others, still facing challenges daily and trying to workout what to do with the rest of my life, I really hope I get there and find what it is I'm to do.
Before all of this I was the stereotypical tortured artist trying to make a name for myself (with very little success) working very hard doing 'normal' job on night shifts to pay my way, drifting for what seemed like years, everything was so career focused, I had a plan to get my art career off the ground then to have children, part of that plan will never become a reality for me as I am now in early menopause all thanks to chemo/tamoxifen, so children are out of the question, this is a big regret, one of my friends suggested I adopt something I would dearly love to do but have BC secondaries and don't think I would be allowed to adopt also is it really 'right' or 'fair' given that my life expectancy might not be that long, of course no one knows how long anyone is going to live but its something that constantly crosses my mind.

Sorry for the way this post sounds a bit sad, but it is sad, very very sad, like I said I am truly grateful for everything I have and for the most precious gift of all my life, but that doesn't stop me from grieving for the life I might of had.

Love and congratulations to all survivors
xxxxx

Conflicting advice makes no sense!

Today I would like to talk about why we (meaning BC suffers) are advised differently about the same type of cancer ie: mainly my ache is about estrogen or ER+ cancers, mine is 4/8 so this means my cancer is fed only half the time by estrogen if it was very ER+ the numbers would of been 8/8, so because of the estrogen factor there are all these different conflicting pieces of advice about what to eat and drink because some foods and drinks contain estrogen or estrogen mimickers we (ER+ ladies) want to minimize the amount of estrogen in our systems this stands to reason especially when its estrogen thats feeding the tumors also if you are ER+ you are generally put on either Tamoxifen, or other AI hormonal tablets to stop or block the estrogen from feeding the cancer cells, (still with me its confusing!) so why are some ladies advised differently? for example after chatting to a lady that is with the same Onc as myself she was told that Sage was not safe to take for ER+ ladies, whilst the same Onc told me it was safe for me to take, this is the first point of conflict, my next big ache is about soya and estrogen some say its safe some say its not but no one will commit to saying its either or!!! this is because they have not been able to trial soya, so it ends up as being quite a contentious issue on the BCC forum where some women are warning against the use of anything with soya in including organic chickens that are fed on soya pellets making both the meat and eggs a no go for ER+ women then there are others saying that it can't be soya because the Asian communities of the world eat loads of soya and they have a lower risk of getting BC ughhhhh its exhausting trying to figure this one out and adds to the misery of going shopping especially at the supermarket, if you look on the back of most packets you will see many many substances that ER+ ladies are not supposed to eat for fear of either estrogen or glucose (cancer loves sugar). I have changed my diet so much, I don't eat red meat, I juice a pint of green stuff everyday, I take a load of supplements, and eat wholemeal or wholegrains including pasta, rice, bread, basically I cut out all the sugar, no tea or coffee, unless its green tea, minimal dairy, I think when you have overhauled your lifestyle as much as I have it becomes very annoying when information just does not add up especially when you are told conflicting information from your own Onc, don't get me wrong my Onc has been fantastic so far as chemo, rads etc but on this score not so great. For fucks sake all any of us BC sufferers want to do is to eat right and survive, we are only trying to help ourselves.

Great news for Her2+

Found this article on the forum today talking about two new drugs that are going to made available to all Her2+ patients in the near future it means instead of having Herceptin by IV every 3 weeks you could take it in pill form, here's the article:

Friday, 2 March, 2012 

PHARMAC is funding two new targeted cancer medicines following an agreement with GlaxoSmithKline.

From 1 April 2012 PHARMAC will begin funding lapatinib (Tykerb) and pazopanib (Votrient). These two new orally administered treatments are designed to specifically target cancer cells. Lapatinib is used in patients with advanced, HER2+ breast cancer, and pazopanib in advanced kidney cancer patients. Both will be funded as alternatives to the currently funded treatment options; trastuzumab (Herceptin) for advanced HER 2 + breast cancer patients and sunitinib (Sutent) for advanced kidney cancer patients.

PHARMAC medical director Dr Peter Moodie says that in addition to expanding the range of treatment options available, both new treatments are pills that patients can take at home.

"The funding of lapatinib in particular will make treatment more convenient for those breast cancer patients who choose to receive it instead of trastuzumab, because it avoids the need for them to go to hospital every 3 weeks for infusion treatments," says Dr Moodie. "It also means that if patients choose lapatinib rather than trastuzumab DHB hospitals will have additional capacity for treating cancer patients, which will help reduce waiting times for cancer treatment, one of the Government's key health targets."

As well as being taken in pill form, lapatinib is a smaller molecule than trastuzumab which means it can pass through the `blood/brain barrier' - which may be an important factor in deciding the best treatment option for patients with advanced disease.

"The features of lapatinib make it a useful addition to funded treatment options. We know from the studies that it has a similar mode of action to trastuzumab, and it is effective in delaying the progression of HER 2 + metastatic breast cancer, as is trastuzumab."

Dr Moodie says that although targeted treatments generally have fewer side effects than standard chemotherapy treatments they do have their own toxicity issues, some of which can be serious. The funding rules for these treatments mean that, if patients experience early side effects on their first choice treatment, then they can have access to funding for the alternative treatment.

Pazopanib is the second targeted oral cancer treatment funded for metastatic renal cell carcinoma, following the funding of sunitinib (Sutent) in 2010. While both drugs have similar modes of action and appear to have similar benefits for patients, Dr Moodie says having an alternative treatment is useful in patients who experience early toxicity.

PHARMAC estimates that up to 180 patients per year will receive pazopanib or lapatinib, and that spending on the two drugs will be in the region of $15 million over five years. However, because of the drugs' net cost compared with the currently funded treatment options for these patients overall the decision is cost-saving to DHBs.

Great news for all of us with HER2+ BC.

Love and light

xxx