It's on the move!

You’ve all been so good to me that I thought I’d better update you with todays news! The CT scan from neck to pelvis was not totally clear.
I’m showing more of the shit stuff in my lung and liver. Tiny amounts apparently. Good news is it doesn’t really affect prognosis. It does, however, mean I whizz off into chemo land again in a few weeks time when I have recovered from the intense radio I’ve just had for the brain stuff. Enough already!!! Good news is that it should all be tablets from home with only a visit to the hopasulk every 2-3 weeks!
So that’s my news…how are you guys…and Dee Dee, where are ya, missy…waiting to hear from you…hope all ok xxxxxxxx

Oh Pash - enough already definately! You are certainly having far more than your fair share - total bum**r.

You take care - glad it can be done at home without too many trips to hopsical,

Lizzie xx

So very sorry to hear your news. I am Dee Dee’s colleague so I will give her another nudge tomorrow lol, she did mention she owed you a reply earlier!

Keep plugging on Pash, make sure you do all those things you always wanted to do.

Ali xx

Pash - as i’ve already said on your blog so sorry to hear about the extra spread…:frowning: i really hope that the new chemo is kind to you…

No news here - just plodding along as ever…

Take care and hope that you are working on that list of things to do…

Theresa x

Pash, very sorry to hear about the spread - what a complete bummer.
wish I had some thing wise and profound to say to you, but all I have is…
sending love
monica xx

Hi Pash (sarah) -

What the Hell !!! - Were these buggers hiding all the time? Is that usual with this dam IBC ? - I have been following your blogs and praying for better results for you - This is just not fair - I am so sorry for you Pash I have never experienced being so dam angry at the same time as tears rolling down my cheeks, and scared for both of us, as it proves you are out of control of this journey, and its obvious neither of us realised that a few months ago.

Your news certainly sorted me out of feeling sorry for myself, after beign a blushing bride a few months ago to now looking like a silver backed gorilla - short grey fuzz, 21 lbs heavier and filled with water retention from the after chemo steriods and sod it difficulty getting the 4 inch heels on - I’m on Arimidex now for 5 years as its the only drug I can have being HER2 negative (one of the 0.30% of the 1% of IBC victims) which again I am just waiting for the side effects to show up

I’ts about time I took a reality check and realised its not my appearance that is at stake here - but perhaps I did’nt really want to go there either.

After the last Chemo ( if there is such a thing) on 30th Dec I have been so relieved at eventually getting my brain back after it seems like so many months of it being in a fuzz (its a joke now that It took me a good 15 minutes to work out how many 30p stamps make up 90p to post a letter off) - I have had a good week of trying to arrange for surgery in both my personal and business world. Trying I suppose to count the tasks left rather than the days left.

My surgeon on 27th is Abigail Evans at the Poole Harbour Hospital and she has arranged an appointment for me to see YOUR Chakkers afterwards to sort out rads I think she said 4 weeks later - I will stay in Charmouth with my brother for the expected three weeks of rads and travel to Poole General which is better than being at home and travelling to Taunton more than an hour away as I have been made aware of the tiredness they can create, and you are currently experiencing. Which for us go getting ladies is such a drag and gilt trip.

MY Scans and tests they did before New Year were clear except they could not find a vein to get the contrast dye in, so they did a ultra sound on the liver instead when I saw them last Monday - they said it was all clear - but perhaps its temporary and they can invade at any time - as I feel sure they must have done the same tests on you before surgery too?

Pash did you have chance to talk to Chakkers about “Avistan” - its available for breast cancer only if it spreads and supposed to give a high chance of arresting the blighters - its not available here on the NHS despite it being developed in UK, and available in every other EU state - but I know a few people that swear by it, and it can be given if paid for - its around £1,800 a pop and I understand min 6 lots needed and administered at the same time as post operative chemo - That is expensive I realsie and it may not be appropriate for everyone, but you raised tons of money for breast cancer already and I am happy to start raising funds for you to have this too if Chakkers your onc thinks it could in any way better your chances for a while …

I will be in hospital for around 3 days as you know, but I have said I want to stay until the drains are detached as I dont think I handle that myslef so may be longer over the weekend too - Really Happy to meet up sometime if you feel able to Pash and will try to work out how to PM haxted who was very supportive about a visit to me - Is she is Poole Hospital too ? - again a tragidy if she is ?

Great Big Hug for YOU and those who care for you. (Group Hug then)…

Dee Dee X

Hi Pash,

So sorry to hear your latest news. There’s no rhyme or reason to this s**t is there? IBC is so so aggressive and we all need a huge amount of luck in addition to the drastic treatment. You have had more than your fair share of the bad stuff so far. We all hope that changes soon and you hold the b****rs back.

I know you won’t grudge anyone their own share of good luck. So far I have escaped any signs of spread and count my blessings every day.

Wishing you good days and hoping you keep finding the energy to do all the things you desire.

Dee Dee, I hope your surgery goes well and the Arimidex side effects fail to appear.

love Jan xxx

Hi Dee Dee - i remember soon after i was diagnosed with IBC reading on forums then saying to friends that it seemed as if everyone went on to have secondaries… That’s not true of course but it is the feeling you come away with at the time…

I guess all any of us can do is take it all one step at a time and see what happens… I was diagnosed in May 2008 and have had several scans about “concerns” all okay so far and i think you will find that they do tend to scan us quite quickly once we have had IBC…

I’m so sorry that we have now had several of the more recent IBC patients diagnosed with secondaries recently and hope that the various treatments you are on work well and are kind to you…

Take care - all of us…

Theresa x

Hi Jan - just crossed posts with you then…:smiley:

I have noticed with our section that we sometimes have people who post a few times but then vanish and hope that is because they are getting on with their lives and have not come onto the forum so much… Must admit getting to the stage where i probably wouldn’t come on as much if it wasn’t for my friends on the storm rider thread…


Pash,I am so sad that things are so sh*tty for you.You deserve a break!
I hope the next chemo sends the b*ggers packing!
Love n hugs

Hi Pash, im so sorry to hear your latest news, i believe you do a blog and i tried to find it but couldnt. This disease is so sh***y, im hoping things start to get easier for you.
take care

It’s hard to believe what’s going on for you, you obviously weren’t standing at the front of the queue when “whoever” was dishing out the luck! I hope that your tablet form of chemo will be easier for you to with less side effects and also hope they work wonders. It’s difficult to say anything else really, just keep on plodding.

Hi to all our other IBC ladies too, hope that you are all doing well.

Thinking of you Pash, lots of cyber hugs and will keep checking how you are