Thank you for sharing this Erin, it does help to know what may be in store for us. Also a reminder of how quickly things can deteriorate and therefore the importance of getting on with things now!
I hope your happy memories sustain you.
I am glad there was no pain, regret of fear and am sure she had enough bravery for the two of you. Celebrate her life and don't mourn death.
Thank you for your lovely post. As has been said, your love just shines out of every sentence and I feel sure that your lovely lady passed over knowing how much she was loved.
I wish you lots of love and good things for the future
Hi everyone, thank you all so much for your replies.
I'm glad to hear that this story has touched some of you and made some of you realize (if you hadn't already) that it is important to get as much info as possible through every stage of your BC. Even when you think you're writing the same thing down over and over and over again, just do it. Because it's what helps you understand the thing that may
OR MAY NOT take your beloved away from you.
I really do connect to each and every one of you and wish now more than ever that there was something I could do to help.
I truly love you all.
Big kisses and tons of hope and positivity
Thank you for your bravery in sharing Jo and yours story with us. You both sound like remarkable and very loving people and the world has been lessened by the loss of your lovely lady. My thoughts and prayers are with you and all your family and friends who now have to deal with your loss.
Look after yourself, I know if I go through it and have to leave my wonderful partner behind I would want him to live life to the fullest and with all my love
Thank you so much for sharing Jo's story with us. Your love and devotion to her really shines though all of this.
Jo sounds like a lovely woman and I am so sorry that she had to endure so much, and that you had to watch her go through it all. She was lucky to have you by her side.
Thinking of you both!
My heart goes out to you Erin, it sounds like Jo had to endure more than most people with this retched BC.
Just look after yourself in these months/years to come, it sounds like you will have some lovely memories to reflect on.
Erin thank you so much for being brave enough to share your experience with Jo with the rest of us. My heart goes out to you at this time of your loss...hugs.....and I hope that what you shared with us will help others to know to push for information when things just don't seem right. It's sad that we have to battle for information at such a time but it seems to happen so much, especially when you move between departments/hospitals.
Thank you again Erin.
Twinky x x x
Thank you Erin.
Your love for Jo shines through in your post. My heart goes out to you for now and the weeks and years to come.
You know you are always welcome to post on the forums and call the helpline if you need to, to talk to other partners who have been through the same as the helpline can put you in one-to-one contact if that's something you would find helpful.
Very best wishes to you
I'm so sorry that Jo has gone from your life. Your concern, support and love for her shines through in your post and illustrates what a strong and remarkable woman she was.
The one thing that is key to all of us with BC (and our supporters) is knowledge. Making sure we know what we have, what the treatment options are based on the best evidence available and being involved with and happy with the treatment plan.
I know things are raw for you right now but I hope you can find peace in the coming times, buoyed by your wonderful memories of Jo.
thank you for this beautiful and informative post, through which your love for Jo shines so strongly. I am so sorry she had been snatched from you, and know your from what you've said elsewhere your memories are precious and wonderful. I really hope those memories will prove a comfort now and in the future.
Go well, and may life from now on be kind to you.
Erin, I’ve just read your post and my heart goes out to you. Thank you so much for sharing Jo’s story with such clarity and love. It is heart warming to know that you were with her when she finally fell asleep and that you had some warning as to what to expect. Though the time frames were incredibly speedy and I imagine since then and for some while there are going to be many adjustments for you.
You are absolutely right when you say that information is key, and whilst you acknowledge that every woman’s story is different, I am sure that we can all take something from this. I certainly have and I thank you for it.
I hope you have loved ones around to support you and be there for you. May you know peace for yourself over the coming days, weeks, months....
Much love to you, Grace x
My wife, Joanne (known on the forums here as jominks) sadly lost her battle to secondary IBC on Jan. 11th at 1:50am. I wanted to post a brief outline of her experience with cancer in hopes that it might shed light on things other women may experience. That by no means insinuates that you or your loved one will go through these things as every woman's battle is very much her own unique one.
But Jo would have wanted the world to know what she went through in hopes that her battle can help in making a change to this awful disease that takes so many lives daily.
Back in March of 2011 Jo began experiencing severe back pain on her left side. Throughout various doctor and chiropractor appointments, no one could really tell the source of the pain. But Jo being such a formidable woman carried on as normal. In June we noticed two parallel streaks (almost like puffy veins) under Jo's left arm and I became slightly concerned. However, at that time there was no visual evidence of any change in her breast. Suddenly in July Jo's left breast swelled to twice it's size and her nipple began to 'suck in.' I wouldn't have described it as 'inverting' as it didn't look inside out. The skin became quite red and very hot to the touch. Our GP gave her antibiotics for mastitis and recommended her to a breast specialist. But the appointment wasn't for another 3 weeks. On August 10th, she had an ultrasound, mammogram, 2 punch biopsies and a core biopsy and it was confirmed that she had inflammatory breast cancer. (Which she suspected after much googling.)
August 23rd was our first appointment with the oncologist who confirmed that she had IBC in her left breast with mets to her sternum, liver, lymphs and lungs and he started her on tamoxifen and injections of zolodex. A week later she started zometa and this treatment carried on for 3 months.
During this course of time Jo's left breast had reduced in size to less than half of what it originally was with all of the nodules becoming visual. Her breast remained quite red and had a very bumpy texture. I wouldn't have described it as being like an orange peel.
Suddenly Jo developed many blisters on the skin of her breast which began to burst and smell terribly. After a quick check up with the oncologist it was confirmed that tamoxifen had not been working and she was put on FEC chemo straight away.
After beginning chemo Jo started suffering with severe pleural effusion. And from November 30th until the time of her death in January she was in and out of hospital having her lungs drained of liters of fluid at a time. In the beginning of December Jo was admitted for an infection of the blisters on her breast and was kept in for a week while she was given IV antibiotics. Merely a week after she came out she was re-admitted for severe breathlessness due to the Pleural Effusion. At this point she was permanently put on Oxygen and a blood clot in her lung was found.
The doctors on the ward new that Jo's condition was severe but no one was really telling us full information. It was like they were leaving us to ask the questions, which I found to be the only downfall throughout the course of Jo's treatment.
I believe the doctors should have told us things like, 'Jo's Pleural effusion is malignant.'
Just before Christmas while Jo was still in the hospital we had a meeting with one of the doctors on the ward, who after prompting from me told us that she believed Jo had 'months rather than years' due to the fact that her pleural effusion had caused her lungs to harden slightly and they wouldn't re-expand to their usual shape, leaving Jo with intrinsically one lung.
That was on Dec. 23rd.
On Jan. 1st Ward doctors re-affirmed the same information and Jo had become more and more exhausted. She did not believe the ward doctors as we hadn't heard anything similar from Oncology. So I took it upon myself on Jan. 10th to march into oncology in hopes to speak to our doctor. Because of our brilliant breast care nurse, Lynn, she arranged a quick chat with the doctor who had said that based on what he's heard and read about Jo's experience, he would think that 'months is optimistic.'I asked him what he thought would be the thing that would take Jo's life and he said that she would become more and more exhausted until she went to sleep.
The very next day I happened to meet him in the hall way outside Jo's room with another breast care nurse. We popped into the room together and he asked Jo who at this point was nearly non compus mentis, 'How are you doing?' She said, 'I'm alright. Just very tired.' But after that she didn't acknowledge his questions.
He turned to me and said, 'Do you remember what I said to you last night?' and I nodded.
Outside the room we spoke to another ward doctor who said that it was just a matter of time. Our oncologist concurred.
That night I was called in by the staff nurse who had said Jo had become increasingly agitated and was moved into her bed. He thought it was a good idea for me to get there.
After a few hours of talking to Jo and telling her she was alright and how much I love her, she looked at me one last time and went to sleep.
She didn't really feel any pain and I know that she died without a single regret or a single ounce of fear.
She was the most beautiful, strong-willed, reliable and brave woman I have ever (and probably will ever have) known.
She faced this disease head on thinking the whole time that it was beatable, even when it really looked like there was no hope.
In the end she faced her death the same way she faced her cancer, bravely and full of hope.
After seeing the effects that the various treatments had on Jo and watching how this VERY healthy, fit woman quickly deteriorated before me, I'm 100% confident when I say I'm overjoyed with happiness at the fact that Jo no longer has to endure that hell and can finally sleep and rest in peace.
I truly truly hope that you all can take something from this. I'm so sorry that Jo's story was not a more positive one, but information really is key. And the more you know the more hopeful you can be about your own experiences with cancer. With all the love and hope in my heart I yearn for a cure. For each and every one of you and your loved ones who really do endure this long road every step of the way.
I love you all and wish you a speedy recovery!!!