IBC Ladies

Hi IBC ladies,

We’ve all been very quiet recently. How are you all?

Jackie; any update on the approach to treating your skin mets?

Dee Dee; how goes your treatment? do you have a date for your surgery?

Haxted; how goes your rads?

Pash; have you gotten over your wobble? I got the impression you are trying to struggle on working without getting any benefits. I work for Jobcentre Plus and might be able to help with advice about benefits you can get while you still work. If you think it would be useful please send a PM.

I’m cooking nicely now. Medium rare and pink in the middle. 7 more treatments to go. I’m hoping my skin will hold up so that I can dress up for a Hogmanay Ball. So far so good. My poor joints are feeling the cold but I invested in an electric blanket and it makes a huge difference. Sleep is better which makes me brighter all round. Got the builders in next week to refurbish my bathroom. Must be mad but it had to be done. At least I’ll have access to a toilet at the hospital.

Hope you are all doing well. Jan xxx

Rads nearly done! Like you - have been “lucky” so far in that the naughty seroma has behaved itself throughout and I have not burned really - even with the bolus thingy on for the last 7 sessions. Finish next week though they’ve said the cooking will continue for 7-14 days after last treatment and to carry on with the aqueous cream regime (I’m washing with it as well as slicking up!)

It’s the tiredness that has caught up with me - not surprising I suppose with 8 months of chemo/surgery/rads/bisphosphonate & hormone drugs coupled with having to get up at 5.30 & 5.45 the last 3 weeks to do my bisphosphonate “happy hour” (!) before I can get up & get on for 8.10 & 8.30 rad appointments…Lucky for me, I don’t live too far away from Poole Hospital- some people have very long distances to cover. If I remember - you were one of them? Hope your appointment times have been reasonable?

I’m apparently to have a consultant appointment in 6 weeks when rads have settled down where they will discuss the “way forward” to manage/monitor the secondaries in lung & bones. Roll on 2010! Need a holiday!Also need to be free to get back to the arm/chest mobility exercises as stopping them to discourage the seroma filling up has led to stiffness - but hardly a problem in the over all scheme of things!

Good to hear from you Haxted.

I do have a 70 mile round trip to hospital but appointment time is 12.30 so I don’t need to get up too early. Wouldn’t want to be in your shoes getting up at 5.30. No wonder you’re tired.

Like you I’m looking forward to the end of the rads and exercising more. My arm has gone stiff too despite doing the recommended exercises. I think I need something a bit more challenging to keep it mobile. It’s quite difficult getting the balance right between doing enough and making it worse. I found out the hard way that housework isn’t the right kind of exercise. Ended up with my neck and shoulder muscles in spasm. Had to sleep sitting up for a week and fill up on painkillers. As you say though, a minor hiccup in the scheme of things. I feel very lucky that I’ve avoided any secondaries so far.

I hope you get that holiday soon.

Jan xx

Bless you, Jan, for checking up. I thought after the last kerfuffle I caused, I’d let someone else own the forum for a bit :wink:

My wobble has truly disappeared and I am back on form. My boob has grown A LOT which is disappointing, but I was warned it might. It’s all fluid (I assume) but they didn’t want to drain it as they said that increases the risk of infection. And best of all, it doesn’t hurt - still just a little uncomfortable - most annoying is the tender skin on my arm - not sure if it’s an aftermath of chemo or the op, but it gets on my pip! I am due for a check up Tuesday, and did call last week, but they said unless I am in pain, don’t worry. So I’m not!

Rads don’t start til Jan, not got a date yet, and I will tell them Tuesday it has to be in the morning as I have been booking work related appointmentd for the afternoon - I need to get back on it!

Apart from that, I seem to be getting flashing lights in my eyes (like migraine, but no pain). Had them about 5 times since chemo finished. Only had them about 3 times in my life before and always with pain/nausea in the past, so gonna ask about that Tuesday.

I also get a pretty bad back some nights but I guess that’s cos I am fairly limited to how many ways I can lie to sleep.

Thanks for the offer re benefits. I did see a CAB advisor, but because I have my own business, it’s not straightforward as I need to appoint a new accountant as I sacked mine in June, just before all this kicked off! Just found a lovely one, so hopefully should be ok, but thanks for the offer, I will shout if I need to.

Hope the bathroom goes well this week, and you can continue to look forward to Hogmanay. Everything crossed for you xxx

Hi Pash,

Good to hear you are back on form. The pain in your arm will probably be the nerve endings coming back to life after the op. I had the same and it lasted for about a month. Sometimes get pins and needles in the hand too. I still have limited positions I can sleep in due to fluid gathering in my shoulder. A lot of the ladies have said the same about not draining fluid due to the risk of infection. Hopefully it will sort itself out in time. I borrowed one of those inverted V shaped pillows and find that helps support my back if I use it along with my usual pillow.

It must take tremendous willpower sometimes to keep working. I’ve found my energy levels getting lower and lower as the rads go on. I suppose it’s the combination of all the other stuff too finally catching up with me. I hope you manage to get enough rest to get you through it. I’ve often cursed my sh**y salary in the past but counting my blessings now that I’ve got half pay to rely on.

Good luck with the rads.

Jan xxx

Hi Pash - just to let you know that after my stint in B5 for mastectomy, I too had arm pain that kicked in after about 2 weeks. No painkiller made the slightest difference which apparently meant it was nerve-related; like Jan B suggests. A lot of nerves have to be cut/disturbed when removing lymph nodes. It was resolved by a month on Amitriptaline (which also did wonders for sleep!) or it may just have resolved itself.

The way I looked at it was that since it didn’t start till a couple of weeks after the op., it must be down to the cut nerves starting to heal so was a Good Thing!

Hope your appointment goes well on Tuesday.

Hi ladies
Glad to hear that you are all coping well following operations and treatment, like most of you I still have arm problems, difficulty with some positions and the stabbing nerve pains, and I am a year post MX, 10 months post rads.

I find it difficult to sleep, most of the time I prop up on a pillow and lay on my back which I don’t like, I prefer to lay on my side.

Housework is difficult, pushing the hoover round hurts, can’t clean windows, can just about manage to do some dusting.

Take it easy all of you and good luck with future treatments


HI Dee Dee here

Good to catch up on all of you who are in front of me treatment wise but as always good to get the info to manage expectations - yet to find out what the happy hour ! intails -

Being an IFA I can only rest and make a decission after collecting all the info possible so with you girls, and would you believe 4 opinions later, my onc agreed with me to continue to 6 cycles of FEC instead of stopping at 4 before surgery.

We as IBC ladies are according to the Roy Mar 1% of all breast cancers now and those of us that are HER2 negative only 1 in 3 of that and no trials have been done due to insufficent of us to do them with although the oncs convention in Texas a few weeks ago may alter all opinions again maybe.

For me now Last chemo 23rd Dec but at least it should be all over for Chemo in this 2009 year now, as it truly makes me so ill for a few weeks. Surgery I decided on at Harbour Hospital in Poole tentative 27th Jan should be the date. tests and everthing there next Tuesday. Found out lots at the Royal Mar but to travel there for appointments when sick from chemo left me deciding on Poole now and boob job later at Roy Mar when I am strong enough to travel that far in the future to Chelsea.

Still managing to work around 12 days in every 21 which has been pressure on my own business somewhat like you Pash, but have super support at home and work now. I have listened to how tired rads make you guys of instead of having them at Taunton my nearest just over an hours drive I will probably opt to have them at Poole or Bournmouth where I can stay and set up shop with my brother who lives there and come home weekends. Will be watching for your commnets Pash when you start in Jan, as I am currenlty with JanB and Haxted.

Wishing you all the very best Xmas possible to you and your beloved and heres to 2010 a few more struggles to go but by the end of it lets hope we can all enjoy next Xmas in a different light and peace.

Thanks for your support girls

Dee Dee

As another IBC lady I would like you wish you the very best for Christmas and the New Year.(Excuse the clown picture-we were fund raising for the local hospice and the photo makes me smile)

I am at the end of active treatment now, and although I struggled for a while getting my head around the fact that although I was still in the system, I was actually on my own and responsible for reporting any further problems,dare I say that I feel good.

My hair, eyebrows, eyelashes and finger nails have all grown back, and even my energy levels are somewhere near where they used to be.I have finished my year of Herceptin and just have the Femara for the next 5 years.

Now I want to make the most of what I have and take nothing for granted.

Sending loads of cyber hugs to those of you still going through treatment and those of you like me keeping everything crossed that life can remain normal

Take Care


Hello ladies, lovely to hear from you all :slight_smile:

My appt at the Marsden went very well, kind of!!

They have agreed to reducing my ‘good’ boob but they also want to revise my mastectomy scar to cut away the skin mets…scary!

They think it’s a good idea to do this while I am asleep anyway. The mets are bleeding fairly regularly, so it will stop this, though they have not progressed in any other way since February.

I’ve seen both the surgeon (lovely) and the oncs, the surgeon suggested the scar revision, so everyone agrees this is the best course of action. Eventually the herceptin/aromasin will stop working and further treatment would be required.
The oncs have not suggested surgery to date due to the pain of recovery but as said above they feel it’s a good idea while I am having other surgery.

Now I’ve got my head ropund it all I feel for once we are being proactive rather than reactive and if it works it will be lovely not to have to see the mets every day.

So I have an appt with the BCN to discuss recovery etc on 29th, pre admission appt on 18th Jan and surgery is booked (Marsden) for 26th Jan. Phew!

Wow, that was a lot about me.

You all seem to be doing really well both post surgery and rads wise.
Here’s to a happy and healthy Christmas and New Year,

Jackie xxx

Hi Ladies,

Good to hear you are all doing quite well considering. I’m having my last rads treatment tomorrow and my skin is holding up quite well. It is looking very sunburned but no broken skin. I keep slapping on the cream in the hope it’s doing some good.

Jackie, I hope everything goes to plan.

Just wanted to wish you all a happy, pain free Christmas and that 2010 will be a better year for all of us.

Love and best wishes, Jan xxx

HI IBC ladies

Have my last chemo Weds this week and tests at Poole for surgery Tommorrow - have put tinsel round the bucket for the last of the side effects but at least I dont have to work over Xmas - PsshI eventually caught up with your blog whilst waiting for the ice to melt to drive to work - awesome and inspiring - I will try to keep up the PMA as a new years resolution as it seems to have worked for all who practice it.

You all have a super Xmas now and may all your wishes come true in 2010.

Love Dee Dee

Hi Dee Dee,

I hope your last session goes well and you’re well enough to enjoy a fab Christmas and New Year.

Jan xxx

Wishing you all a fab Christmas and all of us a healthier New Year too.

Glads the rads are done and dusted Jan and wishing you all the best with your surgery Dee,
Jackie x

Merry Christmas everyone…:smiley:

Here’s to a happy and healthy 2010 for us all…:smiley:

Theresa x

Hi ladies,

Just a quick update.
I have my surgery tomorrow so won’t be around for about a week.
Getting a little nervous now, just need it to be over and done with, I know you all understand :slight_smile:
Take Care,
Jackie x

Jackie - good luck for tomorrow…:smiley: Hope you are soon home again…:smiley:

Theresa x {{{hugs}}}

Good luck Jackie. I’m sure it will all go well.

Big hug, Jan xxx

Nearly missed this!

Good luck tomorrow Jackie and hope your recovery is good without any snags or hitches.

We’ll be looking forward to hearing all about it soon, just as soon as you are able to post.

Take care

Love P x

Good luck Jackie, we will all be thinking of you. Let us know how you get on