Cancer...? But I Wanna Live Forever!

Zoh

2012-01-16T23:58:00.000Z

Zoh was one special lady.

I met Zoh on the breastcancer.org website the day that EJ was born. She sent me a message of congrats and said it was funny we should “meet” on the day that my daughter was born because she had also given birth to her daughter at 32 weeks so that she could do treatment for breast cancer. I was intrigued straight away and asked her to tell me more.

So she told me the story of how she found a lump at 6 months pregnant, delivered her baby 30 days later and then had a bilateral mastectomy. She started chemo a month later. She was believed to be stage 2 but following a CT scan, a nodule on her lung showed up. They were unsure as to whether it was cancer or not so decided to keep an eye on it. It turned out that it was cancer so she was actually stage 4 from the start. She stayed stable for 2 years before “all hell broke loose” (her words) and it spread to her liver and bones.

“You can’t turn your back for a minute on this crazy old cancer” she told me.

Zoh also had an older son.

I gave her the short version of my own story and and she said “congrats, I don’t often (ever) get to hear a story as crappy as mine. Way to go!” I laughed.

After that we kept in contact. We talked about issues of bonding with our babies; we talked about how to do normal family things while having stage 4 cancer. We wondered would we be around if that elusive “cure” was ever found.

Zoh was funny. She was kind. She reached out to others all the time, offering advice or just support even though she was going through so much herself.

She was a brilliant writer. She was a brilliant Wife and Mom. She was an amazing friend. She called me Momma, and she never failed to make me laugh.

She was always positive, even in the darkest situations. Her children and her husband were her life.

Zoh tried to prepare her children for the worst. She told them that there is a golden thread that connects her heart to theirs. That thread can stretch as far as it needs and will never ever break or fray.

Zoh passed away last Tuesday 10^th Jan at 7am, holding her sisters hand. Her daughter was 4 and her son was 10. Her husband and her mum were also with her.

Zoh was loved by every single person on the bco website. She touched the hearts of so many that it is impossible to describe how much she will be missed by us. I’ve only “known” her for 4 months but I will miss her.

I hope her children, and everyone who loved her can find comfort when they think of that golden thread.

“Don’t postpone Joy” was Zoh’s mantra.

So I’m asking you all, please don’t.

The dark days are OVER

2012-01-10T01:15:00.000Z

My alarm went off yesterday morning at 6.30am and like many other people all over the country who were back to work/school yesterday I groaned inwardly, hit snooze and rolled over. I’d been dreading this day for a long time. I thought about the day ahead... hospital visit, a needle stuck into my hand, CT scan, chemo and worst of all a 2 day wait for results (while feeling dreadful from the chemo)and my heart nearly stopping every time the phone rang.

Then what if the results were bad? I had this really bad feeling that the cancer had already become resistant to the chemo and stopped working and basically I was a goner. And if that was the case how was I going to break more bad news to my family?

I couldn’t really think about if the results were good because I didn’t want to jinx myself. I know I’m supposed to be this positive, cancer-fighting “I can do this sh*t “person but deep down all I wanted was a break. A chance to live my life for a little while without dreading the next chemo session. I wanted to switch from cancer-fighting mode to just living mode for a little while. Maybe even grow some hair back? Yesterday morning that dream seemed so far away.

The thought of it was more than enough to make me want to pull the covers over my head and stay in bed. I wanted to scream from the rooftops “I don’t want to be brave, I actually CAN’T do this sh*t” but after hitting snooze 6 times I had to get up and face the music.

I drank the horrible contrast drink, had more contrast material injected into my vein and had the scan. I had steroids and Herceptin and chemo was to follow. My doctor came around and we had a chat. I told her that I wasn’t too confident about my scan and wondered what the next step in my treatment would be. I was convinced that the results would be bad. She said if that was the case then we would discuss it when we had the results. She is always really positive and tried to ease my worries. I thanked her and she then went around to see the rest of her patients.

Ten Minutes later (I think it was 10 minutes although it could have been an hour!) she came back to me.

“It’s all good” she said “there is almost nothing left “

It took me a few seconds to realise that she was talking about the cancer in my liver. I genuinely thought I wouldn’t know the results for 2 days.

Looking back I think I just sat there in shock for a few minutes. Needless to say I was delighted. Obviously I was thrilled and speechless with the result but even more so shocked that the agonising wait was over. There would be no 2 day wait for the dreaded phone call.

My day had gone from one of dread to one of delight with that single sentence.

While what I really wanted to do was hug everyone around me and do a “happy dance” up and down the chemo room singing one of Lady Gaga’s lines “I’m on the right track baby I was born to survive” but I just sat there smiling. I have this weird thing going on where I just sit there taking it all in, saying very little when doctors are giving me news, good or bad.

So there was no singing or dancing (even though I am sure the other patients would have been highly amused with the unexpected entertainment) instead we discussed the next steps.

There is still a very small amount of cancer in my liver but the hope is to keep it stable with Herceptin. I also have to start taking Tamoxifen, which is a daily hormone tablet which will shut down my ovaries and will basically put me into the menopause at the lovely old age of 31.

I will continue to have Herceptin every 3 weeks for the rest of my life. My cancer is not cured but it is under control and there are treatments that can keep it under control for a long time, as long as I respond to them. I am hoping Herceptin will be my wonder drug and work forever! I have my next scan in March and if there are any changes, I will have to go back on chemotherapy, but for now chemo is over. I didn’t even have to have any today in the end. I’m already imagining myself with a short crop!

There is still a small lump in my breast but in the words of the Wonder-Pets “ It’s not too big and it’s not too tough” (a cartoon song that has been going around my head since D got the toy for his 2^nd birthday on Friday) It’s not doing any harm for now so we don’t need to worry about it.

It’s the best news that I could have got at this time and it’s hard to believe that less than a year ago I had never heard of any of these drugs that are today keeping me alive.

I’d like to thank my Husband who held my hand through it all, reassured me when I thought I was going to crack up from the stress of it all, made me laugh when I wanted to cry, spends a lot of his nights going back and forth from C’s bed to D’s bed when they wake up so that I don’t have to get up and might get some sleep, refused to entertain me when I tried to give him a list of things to do for next Christmas because I probably wouldn’t be here... and for many other reasons.

I’d like to thank my Mother who never stops worrying for an iota of a second, gave up her own life to come and help me with the kids and the house, sleeps with EJ every night so I can get some sleep. Makes tea constantly, cleans the house all the time and generally never stops doing things for all of us.

I know lots of people out there are rooting for me and praying for me and I’d just like to say Thank you again. Every prayer, comment, thought, text e-mail, tweet is always very much appreciated

So there you have it my friends. I sound like I won an Oscar or something but my positivity is regained. The world is a better place, the dark days are over etc etc...

And you know what, whatever happens next, maybe I CAN do this Sh*t after all.

Happy Christmas x

2011-12-22T11:34:00.001Z

3 weeks ago I had my eighth chemotherapy session and it was by far the worst to date. The side effects hit me like a ton of bricks. I finally got it. I got what it means to be so sick that you actually wonder is it all worth it. I have felt nausea following chemo before, but this was a different kind of nausea.

Before I would be standing in the queue in Tesco and my stomach would do a little wobble and I would wonder if I should take an anti sickness tablet but by the time I had paid for my shopping I would be fine. Or I would wake up with a sick feeling in my stomach but by the time I was up dressed and half way to playschool with C, I would remember that I forgot to take the anti sickness tablet and the sick feeling was gone.

This time it was different. I had constant nausea for 3 days. I constantly felt like I was just seconds away from vomiting. I didn’t have to wonder if I needed to take anti-sickness tablets; I was popping them (with little effect) like there’s no tomorrow. This sick feeling was accompanied by a banging headache, aches and pains and 2 big mouth ulcers (yes I know I said before that I don’t get mouth ulcers-I obviously jinxed myself!) I had 3 nose bleeds, chills, runny eyes... need I go on? I felt like I was never going to be right again.

Thankfully it all passed and by day 7 I was relieved to be starting to feel normal.

I’m not sure why it hit me extra hard this time but I’m hoping it was a once off.

And the good news is that when I went into hospital for my treatment on Monday I didn’t have to have any chemo. My oncologist decided to give me a little break for Christmas, so my next chemo session is not until the 9^th January. I’m so grateful that I don’t have to go through all the crap side effects the week before Christmas. Of course the first thing that popped into my head when I was told that I am having a small chemo break for Christmas was – Why? Is it my last Christmas or something? Of course it’s not my last Christmas – I aint going anywhere, but sometimes when you have a cancer diagnosis, worst case scenarios just seem to come into your thoughts without you even realising it.

I read the other day that the former Miss Venezuela died from breast cancer at just 28 yrs old after a 2 year “fight”. Just 2 years.

The story is HERE if anyone is interested in reading it

Happy Christmas everybody xxx

Life Found A Way

2011-12-11T17:53:00.002Z

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Our 12 Days of Christmas!

2011-12-04T09:36:00.001Z

I read this blog post the other day through twitter and it made me laugh out loud. It inspired to me to write my own version.

http://hotcrossmum.blogspot.com/2011/12/twelve-days-of-parents-christmas.html

So here is our version:

On the first day of Christmas my children gave to me: a morning in speech therapy

On the second day of Christmas my children gave to me: 2 hours sleep and a morning in speech therapy

On the third day of Christmas my children gave to me: 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the fourth day of Christmas my children gave to me: 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the fifth day of Christmas my children gave to me: 5 dada drinks*, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the sixth day of Christmas my children gave to me: 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the seventh day of Christmas my children gave to me: 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the eighth day of Christmas my children gave to me: 8 lost soothers, 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the ninth day of Christmas my children gave to me: 9 trips to the chemist, 8 lost soothers, 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the tenth day of Christmas my children gave to me: 10 Why Mommy?”s, 9 trips to the chemist , 8 lost soothers, 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the eleventh day of Christmas my children gave to me: 11 playdoh animals, 10 “Why Mommy?’s, 9 trips to the chemist, 8 lost soothers, 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep and a morning in speech therapy

On the twelfth day of Christmas my children gave to me: 12 hours of wrapping, 11 playdoh animals, 10 “Why Mommy?’s, 9 trips to the chemist, 8 lost soothers , 7 notes from playgroup, 6 bottles for sterilising, 5 dada drinks, 4 dirty nappies, 3 cheeky faces, 2 hours sleep

...and a morning in speech therapy

And in case anyone is wondering a “dada drink” is what my kids call blackcurrant. I used to try to just give them water but they would always ask for a dada drink (my husband drinks blackcurrant nonstop). I’ve long given up on trying to get them to drink water but blackcurrant is still called dada drink!

#TwitterXmasSingle

2011-11-28T18:36:00.001Z

I am just home from a 5 hour Chemotherapy session followed by a quick dash around Smyths on the way home (where I managed to tick a few things off my ever expanding Christmas list wohoo!)

I am looking forward to a night in front of the telly with large amounts of ice cream and endless cups of tea, but I felt I should come on here first and tell you all about an amazing thing that happened in Dublin yesterday.

Yesterday, the first ever Twitter xmas single (#twitterxmassingle) took place at the Westin Hotel in Dublin.

It all started with an idea last Saturday night by Brenda Drumm, to record a single for charity and organise it entirely through Twitter

The idea took off and amazingly the single was recorded yesterday, 8 days after Brenda Drumm (@BrendaDrumm) came up with the idea.

And the best thing about #twitterxmassingle is that it is all in aid of a charity very close to my own heart – The Neonatal Unit in Holles Street hospital.

I can’t think of a better charity to do a Christmas single for. Christmas is all about the children after all!

I can’t say enough about the amazing work they do in Unit 8, so I am not even going to try. But the simple fact is they need more funds.

If you wish to support you can do so by downloading the single when available later in the week or by tweeting #twitterxmassingle. Let’s get #twitterxmassingle trending.

My 2nd Head Shave

2011-11-24T20:19:00.001Z

So I had been, quite stubbornly, trying to avoid shaving my head this time but it was getting harder and harder to ignore the hair all over the house and the little bald patches that were starting to appear on my head. One night last week, out of nowhere, I suddenly decided that my little bit of hair that had grown back had to go. I was being silly trying to avoid the inevitable.

Of course once I decided that I wanted my head shaved I wanted it done there and then. My mother was just about to make myself and my sister a cup of tea when I randomly said " I don’t want tea yet, I need to shave my head first"

So I sat in the kitchen and my sister shaved my head. My mother sat at the kitchen table on her laptop and my husband sat in the sitting room watching a match. Nobody batted an eyelid. It was as if it was the most natural thing in the world to be sitting in my kitchen having my head shaved. Then we all had tea!

The Tax-Truck

2011-11-16T22:38:00.003Z

The chemotherapy I am having at the moment is called Taxotere. On breast cancer discussion forums it has been given the very appropriate nick name Taxo-terrible. It is also known as “The Taxotere Truck”

Well it turns out that it is not called the Taxotere Truck for nothing.

I have my treatment on a Monday and on the Tuesday I am usually fine; flying around without a bother on me. I’m full of false energy, thanks the 8 steroids that I have taken.

On the Wednesday morning I usually wake up feeling slightly fuzzy-kind of like as if I had opened a bottle of wine the night before and didn’t manage to finish it but didn’t leave very much in it either. As the day wears on the fuzzy hangover feeling hangs around.

At some point the aches and pains start. It’s like when you have the flu and every bone aches. Though not all at the same time thank god! It feels like there are lots of tiny little knives inside, randomly stabbing at different parts of your body.

Strangely enough I didn’t experience these aches and pains when I was having Taxotere when pregnant. The only really bad side effect I can remember from when I was pregnant is extreme tiredness.

The first time I felt the aches and pains I actually thought there was something wrong with me. I didn’t realise they were a common side effect of the treatment because it was my 3^rd Taxotere (1^st after having the baby and 6^th chemo in total but who’s counting!!) and I hadn’t felt them before. I started to think mad thoughts like maybe the cancer has gone out of control and is invading my body.

A quick google put me straight and I was relieved, though not happy to read that aches and pains are a common side effect. I actually don’t have it too bad compared to some people who have to go to bed for 48 hrs and others who can’t climb the stairs because of the pain.

Other side effects I have felt are pins and needles, nausea, broken finger nails, occasional nose bleeds and the obvious one-hair loss.

Mouth ulcers are another common side effect. I avoid these by using the mouthwash like there’s no tomorrow. I have my pharmacists head wrecked because the mouth wash has to be ordered in especially and I go through a lot of it (well rather my mother has the pharmacists head wrecked since she is usually the one picking up my prescription).

So while I don’t really get mouth ulcers, sometimes I get a feeling in my mouth that feels like I am getting a wisdom tooth. Sounds weird but that’s the only way I can describe it. It’s like there is a tooth at the back of my mouth trying to push through. Obviously I know it’s not a wisdom tooth because I have had them all out, but that is what it feels like.

I’ve never really suffered from loss of appetite either, which can happen to some people. However sometimes I get a fuzzy (there’s that word again) feeling in my mouth, and a craving for something spicy.

It’s a 21 day cycle and by the middle of the second week most of the effects of the Tax-Truck have faded and I start to feel normal again.

Right now I am right in the middle of my cycle (day 10) and l am happy to see the back of that truck-for the next 11 days anyway!

Cancer makes you Lie

2011-11-08T00:41:00.001Z

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X

2011-11-02T13:29:00.003Z

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It's October

2011-10-18T01:01:00.000+01:00

So it’s breast cancer awareness month.

Everywhere I look I’m seeing pink.

Breast Cancer bloggers everywhere are writing about “Pinktober”

I have only been dealing with breast cancer for 6 months. I went from no breast cancer to stage 4 in 2 weeks. Previous to that, I did not know a thing about breast cancer (I'm 31-I didnt think I needed to) and I still don’t know a whole lot about this cruel, serious and complex disease, so here are some of my thoughts on breast cancer awareness month:

The only “cure” they have for breast cancer is early detection. If it is caught and treated at stage 0,1,2 or 3 there is a chance that it won’t come back, or spread to another part of your body. But it still could come back at any time so therefore early detection is not a complete cure.

For people diagnosed at stage 4, there is no cure. There are treatments to extend life but we will never be survivors, or people who once HAD cancer.

In general, breast cancer patients feel that:

A Too much money is being spent on awareness campaigns, and not enough on research. If stage 4 breast cancer could be cured, then all breast cancers could be cured. Yes awareness is very important but awareness does not cure. We need more money for research, so maybe one day a real cure can be found.

Someone once said “The only way you know you are cured from breast cancer is if you die of something else” Mmm interesting.I wonder how many people actually know that?

B Some companies are exploiting breast cancer for profit. You know those products where, if you buy it 1p or 1% goes to a breast cancer charity? Well where does the rest go? Profit for the company. They see October as an opportunity to slap a pink ribbon on their product to increase sales and make large profit. They are exploiting our Very Serious Disease

Speaking of our Very Serious Disease, brings me onto

C Facebook campaigns to turn our disease into a game. Before I had breast cancer, if I saw someone’s status that said “I’m 4 weeks and craving eggs”, I would think:

1. Why is she announcing to the world she is pregnant at 4 weeks?

2. Ah that’s great, a new baby on the way.

3. Oh it’s a game ha ha funny, she made us think she was pregnant

I would not at any point think I should really go and check my boobs after reading that incase i have breast cancer. I have no problem at all with facebook games, I have played enough of them in my time, just don’t say they are creating awareness for breast cancer when they are not!

And after saying all that, I am in no way offended by the game. If you sent it to me I did not take offence. In fact I found it funny when my sister was on fb and gasped “oh my god x is pregnant and she just announced it on facebook” I was able to smugly tell her that x was not pregnant. It was a game.

So yes it’s a good game. But it’s a game. It’s not a breast cancer awareness campaign J

So it Breast Cancer awareness month. I’m very much aware. Are you?

Check your breasts. Plain and simple. No games, no gimmicks, just check.

The Birth Story of E

2011-10-15T23:02:00.002+01:00

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Imaginary Scenarios

2011-10-06T13:24:00.000+01:00

I was delighted last Monday when I went to the hospital for my chemo and herceptin and my oncologist decided that, due to recent good scan results, I didn’t have to have chemo that week. I was given herceptin only, and told I didn’t have to come back for 3 weeks.

3 whole weeks to give my body a chance to recover from my section and to get my energy back before the chemo starts again. I can almost forget that I have cancer. Well, apart from the semi-bald head and dodgy eyebrows of course. Yes, semi-bald. I haven’t had any chemo in about 6 weeks and my hair is growing back already. If it was to continue growing at this rate I’d be nearly brave enough to venture out in public without my wig, very soon. However, I know when the chemo starts again in 2 weeks, the little bit that has grown back will fall out and I will be bald once again. My daughter is well impressed with the little bit of hair that has grown back. She asked me the other day if my hair still had a “bug” or was the bug gone now!

Normal life feels good. Too good. When I was in the middle of treatments and hospital visits and everything was hectic there was no time to think. It was a case of waking up in the morning and just going to whatever appointment we had that day. Don’t think about how weird life has suddenly become-just get on with it and do what needs to be done. The energy will come from somewhere and soon things will calm down. But now that things have calmed down, and we have had a taste of normal life again I don’t want to go back. I don’t want to do anymore chemo. I have lots of imaginary scenarios in my head....

Imaginary scenario number 1

I arrive at the day care oncology department on treatment day and give my name at reception.

The receptionist looks up my name and can’t find it on her computer.

She tells me I am not on the system, therefore I am not due for any more treatment.

I insist that there must be some mistake. I was told that I will be in treatment for life. I ask to see my doctor.

My doctor comes out to see me and tells me that she is really sorry but yes, she made a mistake. It was all a big mistake. I don’t have cancer and can I please go home and never come back.

Imaginary scenario number 2

I wake up. It was all a dream...

Imaginary scenario number 3

Somebody invents a cure for metastatic cancer

I could keep going with the imaginary scenarios but I think you get the drift!

13 Things Everyone Should Know About Metastatic Breast Cancer

2011-09-30T22:53:00.000+01:00

13th October is National Metastatic Breast Cancer Day

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org.

20 Weeks Later

2011-09-24T12:14:00.001+01:00

Yesterday it dawned on me that it has been 20 weeks since I was first diagnosed with breast cancer. So much has happened in 20 weeks.

· A diagnosis of breast cancer

· Lots of talk of it being found early and potentially “curable”

· A liver biopsy which confirmed that it was not caught early and is not curable

· 3 infusions of AC chemotherapy followed by an MRI which confirmed that it did not work!

· 2 rounds of Taxotere and Herceptin

· Countless blood tests and injections

· A week in Hospital

· Around 20 ultrasounds

· A c-section under general anaesthetic

· A beautiful baby girl

And lots of little ups and downs in between...

So on Monday, a week and a half since my section, I was back in my treatment chair. Ready to take on the big C, to “fight the good fight” etc etc.

And I wasn’t pregnant anymore. Which meant they could do what they wanted to me!

First I had to have a CT scan. I hadn’t had one before because they are unsafe in pregnancy. Up until now I have only had MRI scans without contrast, which don’t show up cancer as well as a CT scan.

I was handed a bottle with a litre of orange coloured liquid in it and told to drink it. It was some sort of dye that shows up things on a CT scan (ok I know that doesn’t sound very technical but I don’t actually know what it was; I just know I had to drink it before the scan!)

It tasted disgusting and the first thing I said to D is that they wouldn’t make me drink this crap if I was still pregnant! No more special treatment for me eh!

I drank the lovely dye, had my CT scan and then had my Herceptin. They decided not to give me Taxotere this week because I’m still healing after the section so there would be a high risk of infection. I think in an ideal world I would have to wait 6 weeks after a section to have chemo, but there is no way I am leaving cancer untreated in my liver for that long...

I wasn’t expecting good results from the scan. I had only had 2 rounds of the new chemo (Taxotere). The best I could hope for is that the tumours in my liver were stable. That they were still the same size and had not gotten bigger. The CT scan also meant that they could check my brain and lungs properly; to see had the cancer spread there yet.

On Thursday I got the results: Clear brain, Clear lungs and 30% reduction in size of liver tumours. Also a small reduction in the breast tumour.

I still have to have a bone scan, to check the bones.

So while I’m not cured and never will be, the chemo is working for now and let’s hope it continues to do so for a very long time...

Our New Little Girl

2011-09-13T11:49:00.003+01:00

Well what can I say.

Our precious little miracle is here and is doing fantastically well in ICU.

C and D are massively excited about their new little sister and can't wait to have her home.

A massive big thank you to everyone for their messages of support/congrats.

Thank you to everybody reading this blog who have left comments of support and good wishes.

A special thank you to Maggie in NSW Australia who sent us this gorgeous bunch of flowers to the hospital. They really brightened the place up!

To the Jennings family in Tamworth Australia - yes she should have been wrapped in a pink blankie! We were thinking the same thing. And a few people actually thought she was a boy because of the blue blanket! Kids eh! Thanks guys!

Photos removed

The baby

2011-09-07T15:01:00.001+01:00

E was born at 11.59am. Further details to follow x

Baby on the way!!

2011-09-05T21:57:00.001+01:00

Well this has to be the shortest blog post in history but I’d just like to let you all know that I am going into hospital tomorrow night, and will have the baby Wednesday evening by c-section. I've never had a c-section before so I'm kind of nervous! Thanks to everybody for all your support so far. I’ll update with news as soon as I can

The Lovely Land of Denial

2011-09-03T00:42:00.000+01:00

Myself And The Baby

I had another scan yesterday. I seriously must be the most scanned pregnant lady in the country at this stage.

Nothing to report I’m afraid. Nothing has changed. I still have the same levels of fluid as I had a few weeks ago when low levels of fluid were first noticed.

He/She is giving me loads of movement and kicks though, so that’s very re-assuring.

My next scan is Monday, and I will also meet with my doctor on Monday and discuss the ever changing plan.

I haven’t had any treatment this week and won’t be having any next week. After that, I honestly don’t know. It’s quite scary, knowing that there is cancer in my liver that is being left untreated, but most of time I live in the lovely land of denial and don’t think about it.

The Family

Caitlin is supposed to be starting playschool on Monday but we have decided to leave her for a month and let her start in October instead. She says she wants her Mommy to bring her and I have a scan on Monday so I won’t be able to bring her. I’ll also be going in to have the baby at some stage in the next few weeks so I’ll be in hospital for at least 5 days, and I won’t be able to bring her then either. So instead of confusing her with Mommy bringing her one day and Nanny/Daddy/Sinead bringing her the next day we have decided just to wait until October. Hopefully things will have settled down a bit by then and I will be able to bring her myself-for the first week or two, until she is settled in anyway.

Daniel just continues to follow Caitlin around and copy everything she does, but disagree with everything she says. (I really think he is trying to drive her mad on purpose!) If Caitlin says yes, Daniel says no...If Caitlin says black, Daniel will say white (well not really but you get the idea!)

The Thanks

The kindness of people continues to amaze me. I received a parcel during the week with some gorgeous tiny little baby clothes. Thank you Laura...

I’d also like to say a big thank-you to Erin who writes This very cool, honest and funny blog about her breast cancer journey.

Erin sent me a wig during the week and I love it. It’s slightly different to my usual hairstyle but it’s very glamorous and I love wearing it.

My own hair is acting very weird at the moment. It’s growing back in some parts but still falling out in other parts. I have about 6 eyelashes left (that’s between both eyes) and my eyebrows are practically non-existent. My face is also very bloated thanks to a combination of steroids and pregnancy. So all in all I look like a completely different person than I was 6 months ago... But right now that’s the least of my worries, so I avoid mirrors and continue to live in that lovely little land called Denial!

I'm home

2011-08-25T18:51:00.000+01:00

I’m home.

Tuesday morning my doctor did a scan and everything was stable, so she said I could go home. (Yes I know the original plan was to keep me in until the baby was born but that has changed!)

However I have to come off my treatment for a week, maybe 2, to see if it will help the fluid to come back up. I’ve to have scans every 2-3 days, to keep an eye on the baby.

So since Tuesday I’ve been busy doing lots of boring stuff like... making dinners, wiping noses, picking up toys, reading stories etc and LOVING IT.

There is a lot to be said for normal everyday life J

A week in hospital already...

2011-08-22T22:32:00.000+01:00

Look what I saw in the park yesterday

The kids came to visit me, so we went to McDonalds on Grafton Street and then to the park where we played and then had a picnic. Caitlin was really confused because we didn’t go to the Disney Store this time and we went there the last day that they visited.

Apparently Daniel was excitedly singing “Let’s all go see Mummy” the way up in the car.

I was told that while I have been gone sometimes he will randomly say “Where’s Mummy gone?” And Caitlin answers “She has to wait in her room for the new baby to come”

Caitlin also wanted to know could they come and see me in Mummy’s car (7 seater) so that there would be room for Mummy and the new baby just in case he/she arrived before they got to the hospital. We could all go home together in Mummy’s car. We wouldn’t all fit in Daddy’s car! If only it was that simple...

I’ve been having scans every morning and nothing has changed, so we just keep going until something happens.

I had some freedom from the maternity hospital today; I had to go to St. Vincent’s for my Herceptin. I also had to have an ECG and blood tests. I have had a chesty cough for a week so I had to cough into a container and they will also test that. (For what I have no idea...cancer maybe?)

So by 11am I have had:

o Ultrasound

o Blood tests

o ECG

o Cough test (or whatever the technical term is!)

When did my life suddenly become about tests?

My oncologist tells me that after the baby is born she is going to do the full range of tests again. Things they couldn’t do when I was pregnant like chest x-rays, bone scan, ct scan etc... Of course these tests have to be done but the waiting for results would drive you insane.

I’ve also just realised that I have had 4 ECGs since diagnosis. I wonder if that is normal?

When the Herceptin was finished we were supposed to go back to Holles Street but we sneakily went to Dundrum shopping centre. We had lunch and did some shopping. I treated myself to some lovely goodies in The Body Shop and we both picked up a few bargains in the sale in Fat Face.

I bought Daniel a t-shirt in Next that says “I’m the best little brother”. I wasn’t sure whether to get him a “little brother” or “big brother” t-shirt because he is about to become a big brother very soon! We got Caitlin some “Hello Kitty “stuff. I don’t get the attraction with “Hello Kitty” myself... I mean it’s just a big white cat, what does it actually do? It’s not like it’s a TV program or anything. Anyway Caitlin loves it (her?) so that’s the main thing.

Tomorrow I will be in hospital a week. I’ll have a scan at 8am, and then see the doctor at 9.30am. Then I will be free until 4.30pm. They will check the baby again between 4.30pm and 6pm and then I can go out until 8.30pm. That has been my routine every day for the past week.

I know I am lucky that I can go out and am not confined to bed all the time, but I really don’t want to be here anymore... I want to go home.

Maybe if I ask nicely they will let me home for a night or two?? Come to think of it though, Caitlin will kill me if I come home without a baby brother or sister for her so I really should stay put for now!

Oh sleep...

2011-08-20T20:57:00.000+01:00

So the fluid is unchanged. I’m still in hospital. I can’t stop sleeping.

Sleep is my new best friend.

I’d rather be asleep than awake.

It’s scary...

My mother phones me:

How are you today? Me: Tired...

My sister texts me:

How’s thing’s? Me (3 hours later): Sorry was asleep

My friend sends me an e-mail:

Are ya bored? Can I visit? Me: Well if u really want to, but I’ll probably be asleep

I’ve never slept so much in my life as the last 2 days.

Greetings from NMH

2011-08-17T20:14:00.001+01:00

Greetings from the National Maternity Hospital.
I arrived yesterday afternoon. I left my bags in the car because I didn’t want to look too anxious to stay. I kind of thought that maybe they would let me go home again and tell me to come back the next day.

First I had a scan. Everything was the same as the previous day. The fluid was still at the same level. It‘s low, but hadn’t changed in 24 hours. Good news I thought. Maybe there’s a chance of being let home?

Next I had a CTG (I think that’s what it’s called). It’s where they put a belt around your tummy and monitor the baby’s heartbeat for 20 mins. The midwife commented that the heartbeat was really good for 28 weeks. I was mentally planning stopping off somewhere nice for dinner on the way home. Everything was looking good. What reason did they have to keep me?

The doctor then arrived to see me. He asked me where my bags were. I told him in the car. “Great” he said, the nurse will show you to your bed and I will see you in the morning.

There wasn’t much point in arguing with that!

My first night in hospital was better than expected. I managed to get a fair bit of sleep.

Thanks for all the lovely comments on my last post. They are very much appreciated. Some of ye are asking if I would like 3 magpies for a girl or 4 for a boy...Well as long as there are at least 2 for joy I will be very happy!

Stupid Magpie

2011-08-15T20:30:00.000+01:00

As we drove out of our estate this morning at 7.45am, a magpie flew in front of our car. It didn’t just fly past us and go about its business like a normal magpie would. No it changed direction and continued to fly in front of the car in the same direction as us. Me and Derek laughed at the irony of it all. We were basically chasing a magpie. It sort of sums up our bad luck at the moment. Most people I know would go out of their way to avoid a single magpie at all costs, and here we were, totally tempting fate and being forced to follow one! It’s a good thing I’m not too superstitious.

We arrived at St. Vincent’s hospital at 8.50am ready for treatment. It was really busy in the waiting area and all the seats were taken, so we had to stand while waiting to be called by the nurse. I certainly didn’t mind standing for a few minutes but what really bugged me was the couple beside me had a seat each, and she had her handbag on a 3^rd seat. They never even offered to move the hand bag so one of us could sit down. Grrrr...!

The nurse called me and set me up. The worst part is getting the needle in your hand but thankfully this time it wasn’t a bother. The nurse told me my haemoglobin was low, which causes low energy levels, so they would keep an eye on it. Steroids first... That took almost an hour. Then Taxotere... an hour and a half. Then Herceptin... An hour and a half.

In the meantime my oncologist came to see me. We had a chat. Basically she has decided to change my herceptin to every week instead of every 3 weeks. As far as I know, it is still the same amount of Herceptin but just given in smaller doses. We all know there has been a slight problem with fluid around the baby, more than likely caused by Herceptin. By giving the smaller doses over 3 weeks instead of 1 big dose in one week, it is easier to pull out at any stage, should the Herceptin cause any more problems for the baby. (I hope that makes sense). So from now on I’ve to go up every Monday for Herceptin and still have my chemo with it on every 3^rd Monday.

We left the hospital at 2.30 and made it to Holles Street before 3. Again I was seen straight away which was great because I was hot, tired and fed up so I didn’t feel like waiting around!

I had the scan and the fluid levels have remained the same. However the doctor has decided that I need to be monitored more often. As in every day or twice a day. I said very quickly “Grand sure i’ll come up every day, and I can always go to wexford, sure it’s only down the road, ok thanks very much, bye”. I was aware I was talking very fast and waffling but I was trying to avoid him saying what I didn’t want to hear “sorry I need u to stay as an in-patient”. I asked him could I go home today and he said he would rather I stayed but he understood that I needed to go home to get organised so he said I could go home and come back tomorrow, prepared to stay.

I asked him when he thought the baby would be born. He said he honestly doesn’t know. If things improve it could be weeks. If things get worse it could be days. But the main thing is that I am in the hospital if anything goes wrong.

I don’t want to stay in the hospital. I asked him again could I not just come up every day. I explained that I have 2 other kids at home and I really wanted to be at home with them. But he wasn’t budging so I just accepted that that’s the way things are. It’s for the best and all that....

We got home, collected the kids from Sinead’s house, made them their favourite tea (fish fingers and peas J) gave them a bath, played with them for a while and put them to bed.

It’s probably my last night in my own house for a while so I think I’ll treat myself to a takeaway, followed by a tub of cookies and cream.

I wonder if things would have turned out different if we hadn’t chased that magpie ha ha!

Update on the baba!

2011-08-12T19:01:00.001+01:00

I went to the maternity hospital on Wednesday for my scan. They are so good to me up there it is unreal. There were a lot of people waiting for scans when I arrived, but luckily for me I didn’t have to wait more than 10 mins.

I’m 28 weeks pregnant now.

First the good news. The baby, who was weighing 1lb 4 oz 2 weeks ago, is now weighing 1lb 12 oz. So that’s 8 oz gained in 2 weeks. The baby is still small but still growing.

The not so good news is the level of fluid around the baby has dropped slightly. It is not at dangerously low levels yet, but it needs to be monitored closely. We know that low levels of fluid can be a side effect of herceptin in pregnancy, which is the reason I have needed weekly scans since starting on herceptin 3 weeks ago. I now need 2 scans a week, to keep a closer eye on the little baba!

They also decided that I needed 2 steroid injections, to build up the baby’s lungs in case it needs to be delivered before 34 weeks. I had the first one there and then in the hospital and the second one 24 hours later in my own doctors.

Next week I will have to go to to the hospital for treatment on Monday and straight to Holles Street after treatment for a scan. On Wednesday I have to go back up to Holles Street for another scan.

I think it’s time to pack my hospital bag; this baby may be coming sooner than we think!

My week

2011-08-06T12:32:00.001+01:00

Last Friday I wrote about how tired I was. The tiredness eased off over the weekend and by Tuesday I felt almost normal again. I had a scan Tuesday morning to check the level of fluid around the baby. Everything was fine. Then I decided I need to get things ready for this baby, so I went to Dundrum to pick up some things. Any excuse to go shopping, some might say!

I am 27 weeks pregnant now. We are expecting a small baby so I wanted to get some tiny baby grows and vests. I have tonnes of stuff in both neutral, pink and blue from the other 2 kids but I am worried they might be too big for the new baby. Both of them were big babies 8lb 2 and 9lb 9 so we are not used to tiny babies around here. And anyway I thought the baby deserved some new things!

I tried Next, H&M, Marks and Spencer and a few other places but the only place I could find anything small enough was Mamas and Papas. I ended up buying a 7 pack of vests and a 3 pack of babygrows in size “Petit newborn, up to 5lb 5” They cost €52. Expensive, and defiantly a one off purchase but they are so tiny and cute.

I put my iphone case beside them for the picture. To show how small they are.

.

Happy Birthday Mam...

2011-08-05T19:54:00.001+01:00

Post removed

The postman made my day

2011-07-31T22:27:00.001+01:00

Last Thursday morning I was sitting on the sofa feeling sorry for myself after a bad night when I saw the postman pull up outside my house. As he walked into the garden with the post I remember thinking I hope he doesn’t have anything that needs to be signed for or anything that involves me having to actually get off the sofa and open the front door and engage in conversation. I have bought quite a bit of stuff for the new baby online recently because it’s just easier than walking around the shops and normally I love the excitement of a parcel in the post. However, I was still in my night clothes, there was still specs of blood on my face from my earlier nosebleeds and I had no idea where my wig or even a hat to cover my bald head was. I thought to myself that if he has a parcel, I’ll leg it up the stairs and grab a hoodie. I’d put it on and pull up the hood and that way the postman might not even notice the state of me or my bald head. But even that seemed like too much hard work.

So I looked out the window and was relieved to see he didn’t appear to have a parcel. I didn’t have to run around the house in a panic looking for a hoodie. He did however have letters. A LOT of letters. He put them through the letter box and I managed to drag myself off the sofa to go out to the hall and see what all the letters were. There were the usual bills and junk mail but there was also many letters and cards for me. I was amazed and delighted. I sat down and read them all. They were cards and letters from people all over Ireland, who had read my story in the paper and wanted to wish me well. I couldn’t believe it. It really gave me a lift because as I said I had been feeling quite rough. I’m not sure why they all arrived together on Thursday but it was the perfect day for me to receive them. Most of them didn’t have a return address so I can’t reply, so all I can say is THANK YOU to anyone who might be reading this who sent me a letter or card. You made my day.

Oh so tired...

2011-07-29T22:30:00.001+01:00

I just tweeted “Taxotere sucks, the tiredness is killing me”

I wasn’t prepared for it. I’m just wrecked.

On Tuesday I had steroids to take, so I was ok.

Wednesday I was wrecked.
I went to bed early Wednesday night and fell asleep straight away which is so unusual. I woke up at 5.30am because my nose was annoying me. Then I realised my nose was bleeding. Well when I say bleeding I mean BLEEDING! There was blood everywhere. I’m still not sure if it is a side effect of the treatment or if the nose bleed is from the pregnancy (My guess is the pregnancy). Then I got sick. Twice. I thought, this is it... I’m gonna be sick all day. But by 11am I was fine again.

Herceptin and Taxotere. Round 1.

2011-07-26T11:43:00.000+01:00

Just a quick post today, to let you all know how I got on with my new treatment yesterday.

I got to the hospital for my 10am appointment, and the first step was to get the cannula in my hand. Sometimes it hurts and sometimes it doesn’t and thankfully it wasn’t painful yesterday. The worst is when they put the needle in and realise that it didn’t go in properly and they have to go again. But thankfully that doesn’t happen too often. They also checked my weight and I am pleased to say I have put on 2kg in 2 weeks. I was delighted because I haven’t put on much weight up until now so the baby is obviously thriving!

They took a blood sample, to make sure everything was ok for the treatment to start. I had to wait an hour for the results, so in the meantime they sent me for and echogram to check my heart hadn’t been damaged from the last round of treatment and was strong enough for Herceptin.
The result was 63 and I was told anything below 50 was bad, so they were happy enough with that.

The anti sickness and steroids were given to me in the drip first, and the Herceptin stared then. I was told if I felt anyway different that I was to ring the bell immediately. However it was pretty uneventful thank god. It is normally given over a half hour, but they give you your first one over 1.5 hours in case you get a bad reaction.

Next I was given the taxotere. I asked about my finger nails and I was told that some people have nail issues and the best way to avoid this is to wear dark nail polish. It’s something to do with a reaction to the light, that’s why dark nail polish is recommended.

I was told that some people can get bad reaction to Taxotere on either their first or second time having it. The reaction causes you to have shortness of breath, lower back pain and you become very flushed. I was asking loads of questions and the nurse just said that I would know straight away if I was getting the reaction so try not to panic. They had medication on standby, in case anything happened. Thankfully nothing unusual happened. Again this was given to me very slowly, over 1.5 hours instead of the usual half an hour.

It was a long day and we finally got out at about 4.30pm

My first, and only big side effect was a tingling and numbness in my cheeks. I kept thinking that I felt a loose hair on my face and kept going to brush it away, only to remember that it was highly unlikely to be a hair! I was also pretty tired.

I went to bed at 12, and even though I was wrecked I couldn’t sleep. The last time I looked at the clock was 2.30am, and I have been awake since 7am. It’s the steroids I am on keeping me awake but I am sure all this lost sleep will be made up for during the week.

I woke up feeling fairly groggy but I found it impossible to go back asleep, so I had some breakfast (in bed I might add!) and got up. The grogginess has since passed but I’m feeling a lot of stomach cramps. I’d be fine if I could go to the toilet!!

The baby is kicking away, which is great because he/she had a quiet week last week. I have an ante natal appointment in Holles Street on Wednesday, which I am really looking forward to.

The steroids really make you hungry so I am off to have my lunch, even though it’s only at 11.30am!

Tomorrow is plan B day

2011-07-24T21:57:00.001+01:00

Tomorrow is Plan B day... I start my new treatment. It’s a drug called Herceptin along with a chemotherapy called taxotere. All I know about Taxotere is that it makes your nails fall off. Sure who needs nails anyway? Herceptin is a monoclonal antibody that interferes with the Her2 receptors that are attached to my cancer cells.

This explains it better (from Cancernet.co.uk)

How does Herceptin work? Herceptin works in a different way than standard cancer therapy, such as chemotherapy or hormone therapies. Herceptin® (Trastuzumab) is believed to function in three main ways:

1) Blocking tumour cell growth: Herceptin binds to the HER2 (receptors) on the tumour cell surface and this stops the receptor signalling the cell to grow and divide.

2) Signalling of the immune system: Certain immune system cells, called natural killer (NK) cells, attach to Herceptin when it is bound to the tumour cells. The NK cells then detect an abnormality, and kill the tumour cell.

3) Working with chemotherapy: Herceptin and chemotherapy work in different ways, but when given together, the two drugs can form a partnership (synergy) so kill tumour cells more effectively than either Herceptin or chemotherapy when given alone.

Please let it work! I have no idea what plan C would be...

(I’m not saying there wouldn’t be a plan C I’ m just saying I don’t know what it would be)

Living not Dying!

2011-07-22T22:19:00.000+01:00

The first, and most important thing I want to say is a very big massive thank you to everybody who has contacted me today. I am in complete shock at the amount of people who have sent e-mails, texts, fb messages and left comments on this blog. I have read every one of them and I am honestly overwhelmed at how nice and supportive people are. I have just printed off all the lovely comments and e-mails for my mam to read.

I’m not really sure what to say next. The papers. When I saw the articles (I say saw not read because I could only bring myself to actually read one of them) I was slightly shocked. Obviously I agreed to do an interview so I’m not blaming anyone, but I didn’t think it would be so big and dramatic.
Here’s a brief outline of what happened.

A journalist read my blog. He contacted me and asked me to meet him. I thought about it and asked the opinion of family and friends who all said I might as well. I met him, we had a chat and I said I would do an interview for the local news website. I answered questions. I said positive stuff too. He wrote a story. He said it might make the paper. I had a picture in my head of a tiny little story on the corner of page 50 in the paper. I wasn’t prepared. I didn’t really think about it. I just sort of went with the flow and thought sure if it raises awareness what’s the harm...

Seeing myself described as “dying mum” was hard to read. I don’t remember ever saying I’m dying. Of course, I have a disease that is incurable. I’m not denying that one day I will die from breast cancer. However, when I hear “dying mum” I have a picture in my head of someone who will die in the very near future. Someone who is actively dying (does that even make sense?) Someone who can’t carry out their normal every day activities because they are dying. Well, let me tell you that is not the case with me. I’m very much living and plan on doing so for a very long time. You can look at it like A) you are dying from cancer or B) you are living with cancer and I much prefer B. I feel the need to reassure people that I have no intention of going anywhere anytime soon. I have hope. Lots of it.

I have not been given a prognosis. I have not asked how long I will live. Nobody can tell you when you are going to die and even if they could I’d rather not know. Yes I did say that I looked up the statistics online and they are not great, but they are improving all the time. It’s not 10 years ago. Its 2011. What do statistics mean anyway? Statistically I shouldn’t have got breast cancer. Statistically I shouldn’t have been diagnosed while pregnant. Statistically I shouldn’t have been stage 4 from the start (it usually spreads a few years after the original diagnosis) so statistics don’t mean a thing to me anymore.

Today myself and Sinead packed up the car and went to Bray seafront again. If anybody saw me on the carousel with Daniel they would not say I was dying! If anybody saw me racing after Caitlin to try and get her shoes back on after the bouncy castle they would not say I was dying!

So I’m off to bed with a positive attitude and high hopes for the future. Remember my title...I wanna live forever!!!

Staying alive

2011-07-19T22:16:00.000+01:00

I was talking to someone today who asked me what was the best case scenario for me? Apart from totally beating this thing (which would be a medical miracle), my answer was simple. To stay alive!
When I was diagnosed with metastatic breast cancer I was told that if this was 10 yrs ago I would be given 18 months to live. With new medicines that have been invented since then, I can expect to live longer than that (providing of course they work which isn’t looking too good right now) I think the official statistics say that 25% of people in my situation will make it to 5 years. Don’t quote me on that though! That is as it stands right now. But, new medicines are being invented all the time. So if I can make it to 5 years who knows what will be available? Who knows what the statistics will be then? If the treatments that are currently available can keep me alive till the next new treatments are invented, and the new treatments can keep me alive until the next treatments are invented, then before you know it I will be a 90yr old woman in my rocking chair with all the grandkids around me. I probably still won’t want to die knowing stubborn me but at least I can’t be bitter about it!

So right now my aim in life is this. To stay alive. Because my mother always says “where there is life there is hope” and let’s face it, a bit of hope wouldn’t go astray around here...

Just want to feel normal...

2011-07-17T20:32:00.001+01:00

Unfortunately I have not had a good weekend. The stomach cramps started Friday evening and as I sit here writing this on Sunday evening I feel like crap. I have a constant pain in my breast. I feel hungry all the time but can’t really enjoy anything. The pain in my liver is also constant now and combined with heartburn from the pregnancy it’s fairly uncomfortable. I’m also having fairly serious toilet issues but I won’t even go there. If I’m honest, I just want to crawl in to bed and stay there until these latest rounds of side effects pass. I really just want to feel normal.

But...I’m looking forward to starting my new treatment plan and hopefully start kicking some proper cancer ass in the very near future

Why I started this blog

2011-07-14T23:18:00.002+01:00

Removed

Crap crapity crap

2011-07-13T09:19:00.001+01:00

Well I went up Monday for my treatment as planned and after I got hooked up to the drip and the chemo had started my oncologist came to see me. I mentioned to her that I have been feeling some pain in my breast and liver area recently. The breast pain is exactly the same pain that felt before I was diagnosed but the liver pain was new.
She was concerned. She examined my breast and said my lump felt bigger. I agreed. I knew it was getting bigger. When my lump was first found you had to dig deep into my breast to find it. Now it is clearly visible when I look in a mirror. So it seemed that the chemo may not be working. But the main concern was my liver. I can live without my breast but as the liver is a vital organ we needed to get that checked asp.
So after my chemo I was sent for an MRI scan of my liver.
Tuesday evening I got the call. Bad news. One of my 2 liver tumours has doubled and the other has stayed the same. So basically 3 sessions of chemo have done nothing for me. I'm so disappointed it’s unbelievable. My oncologist is ringing me today or tomorrow with the new plan. But I can’t start any new treatment for 2 weeks until the latest chemo is out of my system. There is horrible chemo going through my veins right now and it’s doing nothing for me.........Ahhhhhhhhhhhhhh let me scream!!!
Ok that felt good...

A "Kick u when you're down" kind of a disease...

2011-06-27T15:27:00.001+01:00

I had my head shaved last Thursday. It wasn't too bad an experience. I thought it would be much worse. I didn't make a big deal out of it becasuse that would be too upsetting for everyone involved.
I came home wearing my wig and didn't want to take it off but it was irritating the hell out of me and I knew I had to take it off eventually. C was sitting watching telly. I told her I was taking my hair off. She watched me take the wig off and the look of shock on her face was priceless. She jumped down off the sofa and ran over."Oh Mommy you have no hair" "Let me feel your head Mommy" She was shocked and amazed at the same time "Why you have no hair Mommy, where is it?" So I explained the story about the bug again. "I dont know what it feels like, it feels strange" Then she got a bit upset and told me to put my hair or hat back on. So I did. The next morning when I got up she ran over to check my head under my hat to see had my hair came back. Sometimes she asks when is it coming back and other times she doesnt seem to notice.
Dan, who was in bed when I first came home with my head shaved hasnt batted an eyelid. He hasn't even noticed that Mummy is bald.
Loosing your hair has to be one of the most degrading things about cancer. Like there is not enough things going on without having to be bald too. Dont get me wrong, I know it doesnt matter in the grand scheme of things but at least if you werent bald you could pretend that things were ok and make an effort to get on with things, but the constant reminder that you have cancer stares back from the mirror all the time..
My sister summed it up the other day-Its a "kick u when your down" kind of a disease!

Red Devil part 2..

2011-06-21T13:57:00.001+01:00

Well my hair is falling out fast. Every morning since Sunday morning I have woken up with more hair on the pillow. To be honest I'm kind of relieved. I have been waiting for 3 weeks for it to start coming out, knowing it could happen any day soon, and it has finally started to happen. I was also starting to wonder how can the chemo be killing all those nasty Cancer cells floating around my body when it cant even kill a few hair cells!
But I'm still dreading being totally bald. Iwill probably shed a few tears but I'll be ok.

I was back in hospital yesterday for my second round of chemo. The chemo I am having is called AC and is also known as "Red Devil". The reason being that it is red in colour, and it turns your pee red for about 24 hours. I have to flush the toilet twice every time I use it for 24 hours and wipe the seat with disinfectant. It is one of the more aggressive forms of chemo. It can damage your veins going in and can also burn when it is going in. It is guaranteed to cause complete hair loss as well as loads of other side effects, including short term memory loss, nausea, loss of appetite, stomach pains, loss of sleep, sweats, mouth sores, watery eyes, neuropathy, low white blood cells, low platelets and on and on.... It can also be very hard on the heart.
So far I have been able to avoid most of these side effects with the anti-nausea tablets, but as the effect is cumalitive I am likely to feel more side effects as I get more into the treatment.

Short hair

2011-06-16T14:00:00.002+01:00

Crap. I'm starting to get used to my really short hair.
When my hair was long I got it cut up past my shoulders in preperation for going bald. I hated it at first but eventually got used to it and then I actually started to like it. Thats when I knew I had to go shorter. There was no point in liking my "new hair" when it was going to fall out eventually.
So last Friday I went to the hairdresser with my sister to get it cut up some more.
OMG.. It was horrendous! I haven't had short hair since I was in first class in school.

I have worn my hat or bandanna every day in public since then. But this morning I brushed my hair and messed around with it a bit and found a style I liked! And I actually thought about not wearing my hat today. Crap-I want expecting to like my hair this short. I was hoping to keep hating it so I wouldn't be too upset when it fell out. Maybe I should just shave it this weekend and get it over with. I still have most of my hair but my scalp is starting to hurt me. I'm just waiting to wake up with most of my hair on the pillow some morning.

Liver biopsy part 2 and there is no stage 5..

2011-06-11T21:09:00.002+01:00

Meanwhile a second attempt at a liver biopsy was scheduled for me for the following Wednesday to confirm the diagnosis.

This time they actually did the biopsy. It was the same doctor as the last time. He explained the procedure and the risks involved and asked me to sign a consent form. The procedure was slightly uncomfortable but not too bad. I expected it to be a lot worse than it was. I had a little snooze after it and when I woke up D was sitting beside my bed reading the paper. I wasn’t allowed to eat until 5pm so I was starving by then. I wasn’t allowed to get out of bed until 6pm. I was supposed to stay the night but at 9pm I begged to be let home. I felt fine and wanted my own bed. They agreed to let me home. I was delighted.

I had an appointment in the hospital the next day to meet an oncology nurse, but I phoned and cancelled it. I figured it wasn’t anything that couldn’t wait and I didn’t fancy the drive up to the hospital for the fourth day in a row. I went wig shopping instead. It was a strange experience. I sat there trying on loads of different wigs thinking “I don’t want to be here” I settled on one in the end, and couldn’t wait to get out of the place.

Friday morning I received a call to be up in the hospital at 2pm for my liver biopsy results. I went and got my hair cut up to shoulder length, in preparation for going bald!

We went up to the hospital and received the bad news. The breast cancer had spread to my liver. There were 2 tumours on my liver. I would be starting treatment Monday. The problem was what treatment to give me. With the pregnancy it was complicated. If I wasn’t pregnant I would be on a treatment called Herceptin. However there is an FDA warning in America not to give Herceptin to pregnant women. The reason being, that there is no statistics to know whether it is safe or not for pregnant women. It is more than likely just as safe as chemo, but they haven’t given it to enough pregnant women to prove it for sure. So while Herceptin would be the way to go if I wasn’t pregnant, we decided not to risk it and go for the next best thing. The next best thing was a chemo called AC. It’s a very aggressive chemo that has proven to be very effective in Her2+ breast cancer.

I started my AC chemotherapy on Monday 30^th May. Almost 4 weeks since I was diagnosed.

In 4 weeks I had gone from no breast cancer, to suspicious for early stage and curable breast cancer, to stage 4 metastatic breast cancer that had spread to my liver and is incurable.

And I was soon to learn that there is no stage 5.

Bad news..

2011-06-10T21:07:00.001+01:00

Monday 23^rd May, we headed back up to Vincent’s for our 2pm appointment. We jokingly were calling it “our 2^nd home”. It was the start of the 3^rd week since I was diagnosed with Breast Cancer. Our appointment was in the breast care office. We sat outside and waited to be called. We knew we were seeing the breast surgeon. She came out and told us that she was just waiting for the oncologist and she would call us then. Myself and D were wondering why the oncologist was going to be at the appointment. Was it because it was bad news? We decided that it couldn’t be more bad news and maybe she just needed to be there to discuss my treatment plan.

The Breast Surgeon called us in and said we could go ahead and start the appointment, and the oncologist would be here shortly. She said that the MRI was unable to identify my liver spots. She said they could not be classed as any of the known benign conditions. They were not cysts, they were not fatty tissue, and they were not any benign conditions that they knew of. I knew straight away what she was going to say. It was one of those moments where I had to strain my ears to listen because all I could hear was my own heartbeat. She went on to say that because they couldn’t identify my liver spots as benign, then they would have to assume that they are cancerous. They would have to assume that the breast cancer had spread to my liver. She told me that this changed everything. This was very very serious.

The oncologist arrived. She told us that “this changes our ability to cure this”. I didn’t understand. If breast cancer can be cured, why can’t this? Cancer is cancer! I’ll do the treatment, chemo radiotherapy etc and come out the other side like everyone else with breast cancer does. Apparently it wasn’t that simple. She tried to explain: What I have is the most advanced form of breast cancer. When cancer is in your breast it can be simply removed. It is taken out of your body. You don’t need your breast to survive.

Once cancer cells have left the primary tumour in the breast, and spread via the blood or nodes to distant sites in the body (lungs, liver bones etc) it is now considered to be systemic. It’s in your blood. Treatments can keep it at bay, but it will always come back. No treatment can kill every single cancer cell in your body. So even if we manage to shrink the tumours in my liver, and no evidence of disease can be found on a scan, there will still be cancer cells somewhere. They may be too small to pick up, but it can be assumed they are there. And when they come back and decide to grow again, they become resistant to treatment eventually. So we try a different treatment. That will probably work for a while but eventually it will fail. Eventually all treatments will fail. Or the side effects will be too difficult to handle and a decision will have to be made to stop treatment. I will eventually die from breast cancer. Unless of course I get hit by a bus in the meantime but that’s a different story!

And more tests..

2011-06-09T20:54:00.001+01:00

I got a call on the following Tuesday to come down to Wexford hospital for an antenatal check up. It was lovely to be going to the hospital for a good reason. I couldn’t wait to see the baby. We arrived at the hospital and we were seen straight away. We had a scan first, which was amazing. The baby was bouncing around on the screen oblivious to all that was going on in the outside world. She/he was measuring the correct size for dates and everything looked perfect. We were delighted. We were seen by a midwife next and then we were seen by the doctor straight away. We were treated so well down there and everyone was so nice to us.

We arrived at the hospital just after 7 am the following Wednesday morning. I was fasting since the night before. We went straight to the ward. We had to sit on the corridor and wait for a bed. That was grand, we were early. At 8.30 a nurse came and took a blood sample from me. I was still sitting on the corridor!

I got a bed and was brought to have my biopsy at about 10. I had to wait in the bed in the waiting area for ages because we were waiting for the doctor.

Dr. B came eventually and did the ultrasound. He was pointing out things on the screen to the other doctor and I was trying my best to remain calm and positive but I was a nervous wreck. Not because I thought there was something wrong with me, but because I didn’t want the biopsy. I was fairly positive that the cancer wouldn’t have spread to my liver that quickly. I was unlucky enough to get breast cancer at 31; it couldn’t have spread that quickly, could it?

The doctor told me that he didn’t think he should do the biopsy, and he felt that further imaging was needed. He said that they don’t normally jump straight to a biopsy when something shows up on the liver. Normally there are different scans they can do but because I am pregnant, and they can’t do most of the scans, they decided to do a biopsy. However he felt that my “spots” were in an awkward place, and an MRI scan should be done first, because it might be able to identify my “spots” as benign conditions. I had already had a full body MRI but he wanted me to have one that was focused specifically on my liver.

The testing begins..

2011-06-08T20:52:00.001+01:00

Monday morning we left the house at 6.50 for my 8am appointment. While we were on the way to the hospital I got a call to say that I had been given an appointmet for my MRI that day too

When I was called in for my ultrasound and asked to lie up on the bed I was physicaly shaking. I was convinced I was going to get more bad news. The ultrasound doctor saw how upset I was and she told me that just because I was having this test it didn’t mean that that there was anything wrong with my liver. It was just routine. I asked her would she know straight away if there was anything wrong. She said “yes, I will tell u if I see anything” She did the test and told me my liver was fine. All clear. She turned out to be totally wrong but the relief I felt was unbelievable. I told her it was the best news he way to the hospitaI’d heard in ages and couldn’t stop thanking her.

I walked out with the biggest smile on my face and told Derek that my liver was clear. We went and had a chocolate bun to celebrate!

Later we had the MRI and some blood tests and then we had a meeting with the breast care nurse. We told her that my liver was clear. She said that’s 1 out of 3, and hopefully my bones and lungs would be too. We went home. I was feeling a little bit positive that things would work out ok, while still being totally overwhelmed!

Wednesday I got a call to say that my blood test results were back. My liver function and kidney function were out of range and my tumour markers were high. I was worried sick about what this meant. The nurse explained that we really won’t know anything until we get the scan results and try not to worry.

Thursday we had our first meeting with my oncologist. We had a chat and she said that the best option for me is surgery asap, followed by chemo in a few weeks. She said it would give the baby a chance to develop before being exposed to chemo. I asked for the results of my MRI but she didn’t have them. I couldn’t really think straight until I got those results.

Following that meeting, we had a meeting with the breast surgeon. All I really cared about at this stage was the MRI results. She told us that the radiographer hadn’t officially written up the results but as far as she can tell my bones and lungs were also clear. Slight relief. She said that the MRI had shown something on my liver that looks like it may be fatty tissue but she needed to confirm it. Apart from that everything else was fine and we were ready to go ahead with the operation next Friday. We talked about the operation and the nurse said she would ring me the next day to confirm it.

We left the hospital and I won’t say I was happy to be having a mastectomy, but I was a bit relieved that there was a plan in place and I finally knew what was happening. It was less than a week since diagnosis but it felt like I had been in limbo forever.

The next day I got a call from the breast surgeon

She said that she had spoke to the radiographer who had read my MRI and he had found 2 spots on my liver. She said she would be surprised if it was related to the breast cancer but the radiographer felt they needed further investigation. My operation would have to be postponed, until they found out what was going on in my liver. She said it could be fatty tissue or other changes related to the pregnancy.

I was booked in for an ultrasound guided liver biopsy the following Wednesday. I was told I would have to stay overnight.

Diagnosis

2011-06-07T20:44:00.001+01:00

Then Friday 6^th May finally came. We had to be up in the hospital for 9.45, to meet with the Breast Surgeon for the result. We got there at 9.30 and we were finally called in by the breast care nurse at around 9.55. I looked straight at the Breast Surgeon who was waiting behind the desk. I tried to judge by her face if I could guess the results. Unfortunately she wasn’t smiling. Well she gave us a “hello” smile, but I got the feeling it was a sympathetic smile and not a “good news” smile.

BS: Hi, how have ye been?

Us: Ehh not too bad, nervous

BS: Ok well, I have your results.

Us: OK

BS: Unfortunately the breast tissue sample was malignant. It is a cancer

Me: OK

I was numb.

The Breast Surgeon went on to tell me about what type of cancer I have. It didn’t mean a thing to me at the time but now I understand. She said that my cancer has oestrogen and progesterone receptors. This meant that the hormones oestrogen and progesterone in my body were feeding my cancer and causing it to grow and spread.

She said it was a grade 3 tumour. I asked her what does that mean and she explained that tumours are graded 1-3 depending on how aggressive they are (or how different they are from a normal cell).

She also told me that my cancer was “Her2 positive” Her2 positive means that my cancer tested positive for a protein called Human Epidermal Growth Factor... Or Her2! It means that the cancer cells are making an excess of Her2, due to a gene mutation. About 1 in 5 breast cancers are Her2 positive. Her2 positive breast cancer is more aggressive than other types of breast cancer and tends to be less responsive to treatments. Great!

Then she discussed the treatment options. Basically I could have a mastectomy straight away, followed by a 2-4 week break and then start chemo. Or I could start chemo straight away and have surgery later. My head was spinning and I couldn’t think straight, let alone make a decision. She said if I wasn’t pregnant they would be recommending starting chemo straight away and surgery later, but it was up to me. Thankfully I didn’t have to decide there and then. I had to have more tests first.

The breast Surgeon explained to us that the next step was to make sure that the rest of my body was ok. That the cancer had not spread beyond my breast and nodes. They need to check my lungs, liver and bones. This is normally done with a liver ultrasound, bone scan and chest x-ray. Because I was pregnant I couldn’t have a chest x-ray or bone scan so I would have to have an MRI instead. I was given my appointment for Monday Morning at 8am for my liver ultrasound and I was told they were working hard to get me an appointment for an MRI.

Suspicion: March and April 2011

2011-06-06T16:19:00.002+01:00

May 2011 was undoubtedly the worst month of my life

I spent most of March and April worrying about how, come November, I was going to manage with 3 children under 3 and a half. At the same time I was delighted to be pregnant with baby no.3 and I knew we would be just fine. Sleep deprived-yes, but we are sleep deprived anyway so we can handle it! Looking back I had little to worry about....

It all started when we came home from holidays in March. I had been getting an odd pain in my right breast now and then but I hadn’t really thought much of it. I mean everyone gets breast pain every now and then-right? A couple of days after we came home from holidays and I remember being in bed with my daughter C, and I couldn’t lie on my right side with the pain in my breast. I couldn’t sleep that night with the pain. In the end I had to get up and take 2 paracetamol. I put it down to pregnancy. I mentioned it to my husband the next day. He said that I really should go and get it checked out. I wasn’t too worried about it but I said I would mention it to the doctor when I go for my first ante-natal check up. In the meantime I googled “breast pain” and I was reassured that cancer is not normally painful. I was genuinely not worried. I couldn’t feel any obvious lump so I was happy enough!

I went to the doctors on Wednesday 23^rd March to confirm my pregnancy and have my first ante-natal check. I was 7wks and 6days pregnant. We did all the pregnancy related stuff and I thought about mentioning the breast pain but actually decided not to. Then at the end of my appointment the nurse said "hop up on the bed and I will feel your tummy" I said “sure while you are there I have been having some pains in my breast, will you have a quick look”. I’ll admit I was morto! She started saying that pregnancy can cause a lot of changes and pains in your breast. I told her I didn’t think it was pregnancy related because I'm sure I was having pain before I was pregnant. She had a look.

She was feeling my breast and she said "sometimes these lumps turn out to be harmless but I will have to get the doctor to have a look" I said "oh is there a lump there?" She said "yes I can feel something but I will get the doctor to check too”

The doctor checked and said that there was defiantly something there but it’s most likely harmless. He said he will refer me to the breast clinic and he filled in the form there and then on the computer. I was chatting away to the nurse not imagining there was anything wrong at all. The doctor told me to try not to worry. I said that I am not worried, I know it’s nothing harmless. I had already googled breast pain and I know that cancer is not painful. He agreed with me. I felt a bit like a hypochondriac using the word cancer... The doctor told me that I would receive an appointment for the breast clinic.

I didn’t really think anymore about it. I was still feeling pain in my breast but it wasn’t as bad as it had been. But I did expect to receive an appointment within a week or 2.

2 weeks later I still hadn’t received my appointment. I had to ring the doctors to make an appointment for my son Dan to have his 13mth vaccinations. (He was actually 15 months at the time but he had been sick a few times so we had to keep putting it off) When I rang to make the appointment I mentioned to the receptionist that the doctor had referred me to the breast clinic and I hadn’t received my appointment yet. She said that she had received a letter saying I would get an appointment within 6 weeks. That was ok then!

I finally got a letter to say that my appointment was on 28^th April at 2pm

So on April 28^th, myself and D (my husband) headed to the hospital for our appointment. I was fully expecting to be sent home and told I was fine.

We sat in the waiting room of the breast clinic watching the build up to the Royal wedding.

I was called in just after 2. The Breast Surgeon asked me a few questions about myself and then she physically examined me. She said I did the right thing coming in, especially in pregnancy because a lot of women would have put the pain down to pregnancy and just ignored it. She said that the next step would normally be a mammogram but they don’t normally do mammograms in pregnancy so she is going to send me for an ultrasound. She also said that she would try and get me an appointment for today to save me having to come back up again. I didn’t know if she really meant that or if she thought I needed an urgent ultrasound but didn’t want to panic me.

So she made a phonecall and told me that they had agreed to fit me in today for the ultrasound. She asked a nurse to bring me over to the ultrasound department which I thought was a bit strange because it was only across the corridor.

There were about 5 people waiting in front of me for an ultrasound but for some reason I was called first. I was brought into a small cubicle and told to take all my clothes off from the waist up and to put them into a basket, and put a gown on. Then I had to wait in another waiting room where there were at least 4 other women waiting in gowns, with their clothes beside them in baskets. They were all older than me. I was called within 2 mins of sitting down. I had my ultrasound and the doctor said that she would need to do a biopsy, but first I would need to have a mammogram so that she would be able to get the full picture of what we are dealing with. She told me that they will put a metal apron around my bump to protect my baby.

The mammogram wasn’t the most pleasant thing I have ever had (in fact I found it a little painful even though it’s not supposed to be painful) but it was over in seconds.

I was brought back down to the ultrasound room where to have my biopsy. The doctor did another ultrasound before the biopsy and she told me that she had found another suspicious area in my breast and I would need another mammogram before I had my biopsy. Oh man, I so didn’t want another mammogram!

So I had my second mamo and was brought back down to the ultrasound room again.

While I was waiting for the doctor to come back I was trying to text D who was in the waiting room, to tell him what was going on because I had been gone ages. I couldn’t get through. I then tried to text my mother and it didn’t deliver. Next I tried my sister (who I knew was on the beach with C and D) and I was relieved to finally get through to someone!

The doctor came back and explained the biopsy procedure to me. I would need a biopsy of 3 places. Two from my breast, and one from a node under my arm. She was honest and told me that when there is an area in the breast suspicious for cancer that they always check the nodes under the arm because that is usually where the cancer will spread to first. And she had found a node that was suspicious so she would need to biopsy it.

This was all so new to me but it was at this stage I started to think maybe we weren’t just dealing with a cyst or pregnancy related changes in my breast.

The biopsy procedure involves first getting a local anaesthetic which stings a little going in (think dentist anaesthetic). Then the doctor inserts a needle (using the ultrasound to guide the needle) and takes a sample. There is a loud noise (which for some reason reminded me of the noise a stapler makes) when they are cutting off the sample.

Thankfully it wasn’t too bad a procedure. The thought of it is worse than actually having it done and it was over quickly. I was glad they hadn’t sent me home and told me to come back up for the biopsy the following week or something. It all happened so fast that I didn’t really have time to think about it.

I asked the doctor when I would have the results. She said it would be the following Friday (this was a Thursday) She said the reason I would have to wait until the Friday is because they have a “multi displinary meeting” every Friday morning where they discuss results and decide on a plan of action. I asked her what she thought the results would be. She said that she wasn’t too worried about the second lump she found but she was worried about the main lump. I didn’t push her for any more information but in the following week of waiting, I wished I had!

So off she went with the samples to the lab and the nurse put some paper stitches on and gave me instructions about when to take the plasters off etc. I got dressed and there was a breast care nurse waiting to bring me back to the breast surgeon to discuss what would happen next.

I went back out to D. He later told me that while he was waiting, a few women had came out and told their partners that they were fine and everything was alright. He thought I was going to come out saying the same. Unfortunately that wasn’t the case!

At this stage it was about half 4 or later and I was the only person in the breast clinic who wasn’t staff. This time D came in with me. The breast surgeon was so nice to us and she told us to come back next Friday for the results. She said I was not to come back on my own-to make sure I had someone with me. D assured her that he would be with me.

The next 8 days were so long.