My wife's breast cancer ordeal.

JohnnieK · 23-12-2011 4:11pm #1

On the advice of tbh I have decided to start this thread on my wifes ordeal with her recently discovered breast cancer.

I originally posted this in the "worried about lump" thread and I think if would be unfair to continue on that thread because not all lumps are cancerous.

We were in the hospital yesterday for two scans, a bone scan and a CAT scan. We also seen the social worker asigned to her and to be honest I was glad we talked with her.

We got the bone scan results yesterday and it was all clear

. They did not have the CAT scan results and sent us home.

After an anxious night they called her this morning with the best Christmas present that we could hope for under the circumstances ALL CLEAR on the CAT scan. We hugged and cryed for about an hour after the call and told all our family. At least we can enjoy Christmas with our babies who for the first time this year are very much into Santa.

The road ahead is very much clear now and we know what's ahead. She will get her surgery on the 5th of Jan and 5 months (at least) of Chemo 3 weeks later. Followed by radiation theropy and hormone treatment thrown in there aswel.

I would like to thank all the posters from the "worried about lump" thread for all there kind words.

I will post udates as time goes by on her condition and ordeal, It has been the longest and most stressfull 2 weeks in my life so far and I encourage others in the same situation to come on and let us know your ordeal.

Merry Christmas to one and all.

skippy2 · 23-12-2011 7:47pm

Great to hear your wifes good news hope you have a lovely christmas

cynder · 24-12-2011 4:44pm

Great news, hope you have a good christmas.

Carpenter · 24-12-2011 5:43pm

Have a read of my wife's blog (Man I know how you feel) I thought the worst but after you read it all will be explained also get your wife to read it after yourself if you feel it might help.
Best of luck and a happy Christmas to you all

JohnnieK · 24-12-2011 6:47pm

Carpenter wrote: »

Have a read of my wife's blog (Man I know how you feel) I thought the worst but after you read it all will be explained also get your wife to read it after yourself if you feel it might help.
Best of luck and a happy Christmas to you all

Hi Carpenter

Where will I find your wifes blog?

Merry Christmas to you and yours too.

Carpenter · 24-12-2011 6:52pm

JohnnieK wrote: »

Hi Carpenter

Where will I find your wifes blog?

Merry Christmas to you and yours too.

http://thestoryofmybreast.blogspot.com/

Here you go chap

CathyMoran · 24-12-2011 11:49pm

As the 5 year survivor of another cancer (oesophageal) I know how scary it is - am delighted that you got good results

jimmydec · 26-12-2011 7:26pm

Courage,strength and believe or not a sense of humour are important- sound like you have a strong relationship which gives you a great base to start with

The Princess Bride · 05-01-2012 1:53pm

Hope all goes well for you both today,Johnnie.
My thoughts and prayers are with you.

JohnnieK · 05-01-2012 3:01pm

Thanks msthe80s.
Brought her in at 7am this morning. She was very upset this morning, I think it has finally sunk in with her that she has what she has and the fact she will be loosing 1 of her breasts. I have just rang the hospital and she has not come back up to ward yet so I'm paceing my mothers living room.

As jimmydec said we also need a sens of humor and we definatly have that, it's regarded within the close family circles as the bold boob and it always gets a laugh.

My wife has always found it hard to express her inner feelings. Her mother walked out when she was only 12 years old and it has adversley affected her and it's this i'm worried about. She would always bottle it up and would be strong for her two sisters and never think about her self. She will definatly need some councelling after this.

She reared her little sister since she was 12 and for this to happen to her is so unfair in light of what she has been through in her life.

I'll keep you posted.

JohnnieK · 06-01-2012 12:02am

Post op and my wife is doing great. I am so proud of her. After I left her in the morning she was still crying and upset. In theatre prep the consultant sat with her and reassured her that everything was going to be ok. He said "when you wake up the desies will be gone" I think this was a lovely thing to say to her.

Have to admit the TLC we have got from Beaumont has been second to none so far.

jimmydec · 06-01-2012 12:06am

Hang in there. Your doing great so far in a difficult situation.

07-01-2012 6:32pm

Hi, just came across your post. Delighted all seems to be going well. Best of luck to your wife, and indeed yourself. She is very lucky to have you with her

have a great New year.

Kevster · 08-01-2012 12:59am

Hi Johnnie, lovely to hear about your successful story. I'm in the UK (originally from Kildare) just finishing my PhD on breast cancer, and will be starting a 5-year postdoctoral scientist role on March 1st. Research in breast cancer moves so quickly - and is so well-funded - that if you miss even a single day you are already out of date.

Good luck to you, your wife, and family.
Kevin

purrrfect1 · 08-01-2012 6:20pm

Glad to hear all going well after surgery.
I had mastectomy on the 5th Dec last - so I know exactly all the emotions that your wife is experiencing.
Everyday is am improvement. Chin up and find something to chuckle at everyday!!

JohnnieK · 10-01-2012 12:39am

Her recovery is going well so far. There was nothing in the drain on Sunday morning and it worried us a bit so we went back into the hospital. They said there was nothing in the drain because there was nothing to drain so they removed it.

That lifted her spirit a bit and it's been lifted even more since the kiddies came back home. It's great to have them here with us. Our oldest who is nearly 4 is even helping her with her pysio it's comical.

She has no pain and her arm is not that stiff. The next step will be the chemo.

@ purrfect1
I hope your recovery is going well and fast. Are you due to start chemo soon?

purrrfect1 · 10-01-2012 4:32pm

JohnnieK wrote: »

Her recovery is going well so far. There was nothing in the drain on Sunday morning and it worried us a bit so we went back into the hospital. They said there was nothing in the drain because there was nothing to drain so they removed it.

That lifted her spirit a bit and it's been lifted even more since the kiddies came back home. It's great to have them here with us. Our oldest who is nearly 4 is even helping her with her pysio it's comical.

She has no pain and her arm is not that stiff. The next step will be the chemo.

@ purrfect1
I hope your recovery is going well and fast. Are you due to start chemo soon?

Thanks
Will find out tomorrow what is next. I get results of FiSH test.............fingers crossed

Carpenter · 10-01-2012 5:24pm

JohnnieK wrote: »

Her recovery is going well so far. There was nothing in the drain on Sunday morning and it worried us a bit so we went back into the hospital. They said there was nothing in the drain because there was nothing to drain so they removed it.

That lifted her spirit a bit and it's been lifted even more since the kiddies came back home. It's great to have them here with us. Our oldest who is nearly 4 is even helping her with her pysio it's comical.

She has no pain and her arm is not that stiff. The next step will be the chemo.

@ purrfect1
I hope your recovery is going well and fast. Are you due to start chemo soon?

We are watching this so you 2 are not alone tell her when it comes to reconstruction she can have a belly tuck and a boob job all in 1 my wife found that funny and a laugh is worth a lot

Carpenter · 12-01-2012 9:45pm

How are things over the last few day,s

JohnnieK · 12-01-2012 11:52pm

purrrfect1 wrote: »

Thanks
Will find out tomorrow what is next. I get results of FiSH test.............fingers crossed

I hope everything went well for you yesterday.

JohnnieK · 13-01-2012 12:01am

Everything is going well so far. On Wednesday there was some fluid there so they drained it with a syringe and the colour was right and she appears to be healing well. She is going back tomorrow to get results of the tissue tests to see what the next step will be.

I'm a bit anxious because I cant be there with her as I have a job I'm committed to and cant get out of it. Her little sister is going in with her and she knows the medical jargon as she works in Crumlin Hospital.

I suppose I will just have to keep the head down and wait for the call.

To make matters worse our 2 year old got a tummy bug today and she was unable to cuddle her which peed her off.

Thanks for all your comments by the way. This thread is giving me a good avenue for getting it all of my chest:)

Carpenter · 13-01-2012 4:59pm

Listen there will be low & high times that I can tell you so you may get used to it as soon as you can I don't want to sound bad but that's the way it is.
Try staying positive I know its hard but if you can it will do wonders for her & yourself and please god she will be fine.
It,s a long road but there is light at the end

JohnnieK · 13-01-2012 5:10pm

JohnnieK wrote: »

Everything is going well so far. On Wednesday there was some fluid there so they drained it with a syringe and the colour was right and she appears to be healing well. She is going back tomorrow to get results of the tissue tests to see what the next step will be.

I'm a bit anxious because I cant be there with her as I have a job I'm committed to and cant get out of it. Her little sister is going in with her and she knows the medical jargon as she works in Crumlin Hospital.

I suppose I will just have to keep the head down and wait for the call.

To make matters worse our 2 year old got a tummy bug today and she was unable to cuddle her which peed her off.

Thanks for all your comments by the way. This thread is giving me a good avenue for getting it all of my chest:)

She seen the surgeon today. There was 17 lymph nodes taken out 6 of which were infected. The 3rd smaller lump was pre cancerous. The liver will be investigated further but we knew that before Christmas from the cat scan. We were told that it is probably a bit of fatty tissue and 90% of us have it.

Im worried about this now although the surgeon said he is quite confident the liver is fine.

Anyway back in in 2 weeks to discuss the chemotherapy.

Carpenter · 13-01-2012 5:19pm

JohnnieK wrote: »

She seen the surgeon today. There was 17 lymph nodes taken out 6 of which were infected. The 3rd smaller lump was pre cancerous. The liver will be investigated further but we knew that before Christmas from the cat scan. We were told that it is probably a bit of fatty tissue and 90% of us have it.

Im worried about this now although the surgeon said he is quite confident the liver is fine.

Anyway back in in 2 weeks to discuss the chemotherapy.

If it,s any help my wife's count was a lot higher on the lymph nodes front a lot higher

JohnnieK · 13-01-2012 11:29pm

We had a bad day emotionally today. She is overwhelmed with all the text messages of support and wishes people would leave her alone. I was upset because I feel helpless to help her.

I suppose we are going to have up's and downs and this was just one of the downs.

@Carpenter. The fear I had about the liver has subsided some what since you said your wife's count was higher. Thanks for that.

Now I'm feeling why us:(

Dizzyblonde · 14-01-2012 6:18pm

I'm sorry to hear yesterday was tough, I suppose your wife just wants to be treated normally by people. Don't be afraid to ask people to back off if necessary.
As her husband of course you're frustrated at not being able to help her, but just being there and giving her your love and support as you are, is enough. When someone is ill it's often the little mundane things that matter the most.

I hope today is better for you both.

JohnnieK · 16-01-2012 2:09am

The rest of the weekend has been fine thank God. She finally opened up to me this evening and showed me the scarring. I think it has made her feel better that I have seen and accepted it and it is another page in the book turned over.

Carpenter · 20-01-2012 3:33pm

JohnnieK wrote: »

The rest of the weekend has been fine thank God. She finally opened up to me this evening and showed me the scarring. I think it has made her feel better that I have seen and accepted it and it is another page in the book turned over.

Well how are things going now

JohnnieK · 21-01-2012 5:46pm

Everything was going great up till about 20 mins ago. She got the medical report of the consultant on Friday for a serious illness policy we have. I read it an I'm feeling afraid at the moment, is this normal? A lot of it I dont under stand full of big words and stuff. She still has not received an appointment for the MRI for the liver and no word from the oncology which was supposed to be Wednesday.

I suppose I'm just feeling the longer things take the less of a chance she will have of making a full recovery.

Am I being silly??

purrrfect1 · 21-01-2012 6:00pm

Never silly. Its just one of the many emotions that we go through.
These documents are always baffling to read. Just the jargon thats used. Hopefully it will be Ok. Oncology just phoned me on Tues for an appointment the next day - they wont contact you till they have all results ready., which is all good.
Dont get down now...you have been doing so good

JohnnieK · 23-01-2012 11:40pm

O.K. My wife seen the surgeon last Friday week, he told her that the liver will be looked at again which we knew before Christmas. (fatty tissue we all have it, just want to take it out of the equation) We were told she will see the oncologist this Wednesday, now this might not happen because the oncologist will want to have all findings in front of him before he determines a treatment plan (which makes sense).

Absolutely no word from the hospital as of yet. My wife got a missed call from breast care on Friday when she rang back no answer so left a message.

No word today so she rang twice, no answer. Left a message the first time and then got them to page the bleep number the second.

I am livid to say the least. Is it normal for this to happen.

My worry is if this cursed cancer managed to move to the liver, with this delay it might become well established.

I'm so angry right now.

CathyMoran · 24-01-2012 10:39am

You do not know yet what the thing on the liver is. 18 months after my total oesophagectomy they found something there but it was nothing. The waiting is terrible I know.

JohnnieK · 24-01-2012 11:55pm

She got a call today and we are off to the Oncologist tomorrow. They said she will probably be waiting a while for the MRI so nothing we can do about that right now.

Sorry if I came across a bit aggressive on the other post but was just a bit worried.

_AVALANCHE_ · 25-01-2012 12:45am

http://www.euromedic.ie/home.aspx

Carpenter · 27-01-2012 4:36pm

Sorry was away any chance of an update on herself

JohnnieK · 28-01-2012 11:04pm

She is doing great at the moment. We were in with the Oncologist on Wednesday last. She will be starting Chemo on the 6th, 4 cycles of AC Chemotherapy then 12 cycles of some other Chemo the name I cant think of at the moment. That will bring her up to 6 months. Then radiation therapy and then hormone treatment for 5 years after that.

I have to admit the Oncologist was mad and had us in stitches. We were really relaxed with him.

We are going private for the MRI because Baeumont cant even give us a date for it at the moment.

The Princess Bride · 28-01-2012 11:14pm

JohnnieK wrote: »

She is doing great at the moment. We were in with the Oncologist on Wednesday last. She will be starting Chemo on the 6th, 4 cycles of AC Chemotherapy then 12 cycles of some other Chemo the name I cant think of at the moment. That will bring her up to 6 months. Then radiation therapy and then hormone treatment for 5 years after that.

I have to admit the Oncologist was mad and had us in stitches. We were really relaxed with him.

We are going private for the MRI because Baeumont cant even give us a date for it at the moment.

Continued best wishes to you both,Johnnie- it's good to hear that she's keeping well. It's been a rollercoaster ride for the 2 of ye,
life is strange what it throws at a young mother-she'd lucky to have your support.
Remember to look after yourself too!!

_AVALANCHE_ · 28-01-2012 11:42pm

JohnnieK wrote: »

We are going private for the MRI because Baeumont cant even give us a date for it at the moment.

Where?

JohnnieK · 29-01-2012 12:08am

_AVALANCHE_ wrote: »

Where?

Going to the Hermitage in Lucan hopefully next week.

Carpenter · 29-01-2012 12:32pm

John
As I said there will be up,s and down,s all you can do is try and relax take it 1 day @ a time and as time goes on it will get easier

Dizzyblonde · 29-01-2012 1:41pm

That's great news Johnnie, continued best wishes to you both.

JohnnieK · 30-01-2012 12:34am

Oh I forgot to mention. We were accepted for the medical card to on Friday so that will lift some of the burden:). Forms were faxed from the hospital by the social worker on Friday morning and we were accepted after lunch. She said it was the fastest case she has ever had accepted. My Dad must be looking down on her, God rest him.

purrrfect1 · 30-01-2012 11:15am

JohnnieK wrote: »

Oh I forgot to mention. We were accepted for the medical card to on Friday so that will lift some of the burden:). Forms were faxed from the hospital by the social worker on Friday morning and we were accepted after lunch. She said it was the fastest case she has ever had accepted. My Dad must be looking down on her, God rest him.

Things seem to be going Ok for ye and will continue to do so. There are so many things happening at the one time its difficult to keep track of them all, but you are very strong - both of you are- which is just as well, as its just what is needed to keep up..and yes, those up above certainly do look down on us and seem to ease things through for us. God rest them all.
Good luck to your wife for the treatment - keep us all posted.

JohnnieK · 31-01-2012 11:39pm

Just a quick one.

My wife is starting Chemo on Monday. I'm feeling a bit afraid about the whole thing for the main reason I dont know what to expect, and how I will react to it all. I'm strong for her but deep down I'm feeling this. I suppose I just want to know if this is normal.
It was explained well to us but If you have not experienced anything like this it'd hard to imagine.

I hope I'm not being a pain posting all this.

_AVALANCHE_ · 01-02-2012 2:52am

^^^Don't expect it to be what you've seen on TV or what I'm assuming you have in the back of your mind as to what it's going to be like. It won't be that bad.

Hopefully she'll be lucky and will have little to no sickness from it, not everyone gets the Nausea and their's good drugs to lessen it now if she does get it.

She'll be quiet alot and looking off in to space alot, their will be out of the blue breakdowns and as it goes on she'll get abit more tired and lose some of her strength.

Expect to not get your questions answered and expect bluntness when you do get an answer.

The nurse has gone through "the sheets" on what to expect depending on the type of Chemo, the biggest early one of these in my experience shows up about 2ish weeks in, the Hair, if she has long hair then try and get her to cut it tighter before then so as not to wake up one morning to alot of hair loss on the pillow. It's tough to see it on the pillow but not to bad when you cut it by choice.

It may not be an option and may not be relevant but if it's doable then don't leave her on her own unless she asks to be left alone. People will go out of their way to help if you ask, so do. If someone around her is a "cryer" (and their's always one) politely tell them to F-OFF and do it somewhere else. Sick people--->F-OFF, her immune system will be weakened so don't risk her getting a bug out of politness.

You mentioned that it's 5 months of chemo, not everyone can/will finish the course, the more she can take the better but don't let her play the strong card on Chemo days when she's really not, near the end of the course talk to/tell the nurses if she doesn't feel up to it on a particular day or she could end up in Hospital for the 2 weeks after.

The 5 months will fly and I'm not just saying that. It's a month and a halfish since you started this Thread. The long evenings are coming aswell which will be a help.

You won't be able to be a Rock all the way through and that's alright.

Stock up on the Bovril, if she doesn't like it now she'll probably get a taste for it.:)

CathyMoran · 01-02-2012 10:27am

Not every chemo is the same and not everyone gets the same side effects. For me I was hugely worried about my fertility as I was 32 and was getting married shortly afterwards so I asked about ways of saving my fertility (I have an 8 month old and an almost 22 month old so what they did worked!)

Find out if she will have hair loss, I thought that I would not mind but when it fell out I was very upset and was glad that my brother and then fiance (sp) had got me to get a wig. My then fiance(sp) was hiding the hair loss from my pillow but one day it fell out in huge clumps. Remember the hair loss is a sign that the chemo is doing something and if your wife feels bad then just think of what it is doing to to it.

I was in hospital for one week in 4 and had chemo 4 days and one day to recover. I was very ill with mine but 2 weeks after my first chemo I was able to eat strawberries again (I had been not been able to swallow anything (am an oesophageal cancer survivor).

My brother bought me a portable dvd player and I watched most of Star Trek Voyager on it.

The week before the next chemo was the best for me and I did nice things that week. I was lucky that I had my wedding to look forward to but have something nice to look forward to at the end.

For me I was not allowed to travel until 6 weeks after the chemo was over and for me that was a pre-surgery holiday (I still do not consider that I got a honeymoon from my husband - we have 2 babies now so travelling is out for the short to medium term!)

Best wishes to you and your wife. If it is any consolation I do not remember most of it but my husband does.

JohnnieK · 07-02-2012 12:57am

Chemo started today. First cycle of A/C chemotherapy. We were only 1hr and a half in the hospital so not too bad (she got bloods done on Friday) About 7:30 this evening she lay down on the couch and fell asleep. I was just about able to wake her at 9 to get her to bed.
God love her.

tbh · 07-02-2012 5:09pm

Hi Johnnie - sorry I missed this thread, I've been thinking about ye over Christmas! Seems like everything is as well as can be expected. Thanks for the updates and continued strength and good luck to the both of you.

Carpenter · 07-02-2012 5:55pm

JohnnieK wrote: »

Chemo started today. First cycle of A/C chemotherapy. We were only 1hr and a half in the hospital so not too bad (she got bloods done on Friday) About 7:30 this evening she lay down on the couch and fell asleep. I was just about able to wake her at 9 to get her to bed.
God love her.

It was the same with my wife I bet if I had hit her with a hammer she would have stayed asleep but I found as time went on the need for sleep after Chemo got less I hope it will be the same for your wife.

_AVALANCHE_ · 08-02-2012 2:20am

AC chemotherapy

Risk of developing a blood clot

Cancer can increase the risk of developing a blood clot (thrombosis), and chemotherapy may increase this risk further.
A blood clot may cause symptoms such as pain, redness and swelling in a leg, or breathlessness and chest pain. Blood clots can be very serious so it’s important to tell your doctor straight away if you notice any of these symptoms. Most clots can be treated with drugs that thin the blood. The doctor or nurse can give you more information.

Ask your Docs how common Clots are in your circumstances and if it would be suitable to go on a thinner now as a preventative. Complication best avoided if possible.

A good source of Fibre is....

cheaper in Dunnes and Healthshops unless it went up lately. Helps to keep things moving.

The Princess Bride · 08-02-2012 9:44am

Glad to hear things are going to plan,Johnnie.

My friend started her chemo last week- she's is a fantastic person.
Not one word of a moan since her diagnosis and mastectomy.

My daughters are in awe of her- they can't get over how so many people moan and groan about a sniffle or flu,yet she's holding her head up high and so upbeat about cancer!!!

The chemo can be so much worse than the disease- so as I keep saying--look after both of you Johnnie !

My wife's breast cancer ordeal.

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