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The beginning of my Mum's story.

Catherine-OC
Posts: 9
Joined: Dec 2012

Hello,

I'm new here and like all of you I have found my way here under the most awful of circumstances. My beautiful angel of a mother has been suffering accutely with what she has been told was IBS for some months now. On Monday Nov 26th she was rushed into hospital where she had emergency surgery to deal with a blockage in her bowel which was only a matter of hours from a complete rupture. unfortunately whilst the emergency bowel surgeon was in there, they saw that the obstruction was most certainly being caused by a tumor on her ovary that had been slowly choking her large bowel for some time.

To further the bad news, the surgeon was unable to attach her stoma bag where he would usually, due to the fact that her intestines have been glued by cancerous adhesions and he could not access the area he needed. So she now has a cecostomy (a type of bag that should only be used as a temporary enema) permanently. We are still awaiting the full histology results but from what the emerg surgeon said she has a tumor on her left ovary, peritoneal lesions all over her abdominal wall and they also spotted a slight shadow on her liver in the CT scan. Of course without all results back I cannot yet give staging/grade but im anticipating stage 4 as the disease has spread.
Its such a sad story as she insisted many times to various drs and specialists that there was something wrong and even demanded a trans vaginal ultra sound back in January to count out ovarian problems. the test came back clear, but i think it was missed. Every time she was told IBS IBS IBS... regardless of how often she went back complaining of the pains and bowel problems she felt.

She is recovering well from her emergency surgery and has come off all IV's, is refusing pain killers unless desperate, catheter is out, and is getting up and about by herself, she is even doing gentle pilates-type exercises to keep everything supple...all this just 3 days after having her entire abdominal wall cut in half. Believe me when I say this woman is strong willed! Even her surgeon said it was remarkable to see her looking so well.

However, because of the positioning of her growths, debulking surgery is not an option at the moment. perhaps they might consider it after trying some chemo. But the main focus right now is to get her fit and healed from this unfortunate event, get her home and comfortable and to get her in the best health possible to fight this beast.

My mum is 61 years old but doesn't look a day over 45. She is extremely healthy apart from this cancer and has been an advocate for natural health and healing for a number of years. her entire life has been dedicated to helping others, from raising 2 daughters to practicing various methods of complimentary and alternative healing on many many people, even terminal cancer patients. She has received this terrible news with so much grace and understanding.

She truly is a saint and this world, my world, will be a much darker place without her. All I can do at this stage is help her get her health back up to scratch, and be there for her whenever I can during her treatment. I hope to find this forum helpful in terms of her support and my own. Some of you ladies have wonderful stories to tell to keep inspiring hope for the rest of us. Please send her love and send her light.

mopar
Posts: 1954
Joined: Apr 2003

So sorry that your Mom is going through this. And, you as well. Sometimes it's difficult to know what to do when someone we love is going through this. But it sounds as thought you are very supportive, and it also sounds like your Mom is so strong! I'm happy to hear she is keeping as active as possible, as it doesn't sound like she's going to let this get her down. Having led an active/healthy lifestyle as well, I know we sometimes ask 'how could this have happened'. Nonetheless, I truly believe that having been 'health conscious' (for lack of a better term) is what keeps us going, and gives us the much needed strength that we may otherwise not have had.

To you, your Mom and everyone in your family, sending (((HUGS))) and Prayers for her continued strength and perserverance!

Monika

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

Your mom sounds like a remarkable woman and you sound like a very caring and supportive daughter. I am sending lots of good thoughts and prayers her way that her doctors' game plan will result in her kicking her cancer's behind for good!

Please keep us posted on her progress. We are here for you both whenever you need support.

Hugs,

Kelly

kikz's picture
kikz
Posts: 1281
Joined: Jun 2010

for what you and your mom are going through but am so glad you found this site. The long and scary journey is made bearable for me by the wonderful ladies on this board. I can't imagine going through this without them.

I wish your mom the very best on her journey.

Karen

kimberly sue 63's picture
kimberly sue 63
Posts: 404
Joined: Apr 2012

So sorry to hear about your mom. My daughters, especially my oldest were such a comfort to me during my my diagnosis to presently when my fears over take my emotions. It is great to have them and I am sure you are also a comfort for your mom. Hang in there with your journey.It does get better. Kim

Unhappy
Posts: 88
Joined: Dec 2012

Hope and Prays are with you and your mother you both sound remarkable.

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I am sorry you have to be here. Prayers are with yo and your entire family

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Hugs, to you and your mom. Sucks to be here.

poopergirl14052's picture
poopergirl14052
Posts: 1179
Joined: Nov 2010

Sorry your mom has to go through this. Come here anytime you want...maybe soon your mom may come too. Stay strong. Val

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

So sorry to hear about your mother. My mother, too, was diagnosed with IBD until an intern in the ER ordered a CT scan,,,and voila, we began our new journey. You sound like you're doing remarkably well, and you also sound like you are doing all the right things also. This is a time of shock and recalibration, and learning. I can't stress enough that you make sure you have a gynecological oncologist handling your Mom's case....and I am hoping it was a gynecological oncological surgeon. Studies have shown that the surgeons who specialize in this have better outcomes than non oncological surgeons. Your mother will soon be on the chemo bandwagon, and that's when you can really be helpful with rides and soup, and colace, and many other things that the women here are experts at. Your mom is lucky to have you. This board is an amazing place full of support and love. I will pray for both you and your mother tonite!!

Cafewoman53's picture
Cafewoman53
Posts: 738
Joined: Jul 2010

Out of your whole post what stood out to me was that she is otherwise healthy and younger than her years. This will be very good for her.After she recovers from the surgery she will be able to fight to get rid of the rest of the cancer. I was left with too much cancer inside to remove without taking my whole colon but chemo has been very effective in getting rid of the left overs. it has been two and a half years since my diagnosis and I'm still going strong so there is hope. Good luck to her!

Colleen

Catherine-OC
Posts: 9
Joined: Dec 2012

Wow, what an incredible bunch of people you all are. Just to know that you are keeping us in your prayers is comforting.

My mum has been home since last Monday, less than 7 days after her emergency op! She is trying best to adjust to her stoma and this new way of life she faces, I've been off work and looking after her as much as I can if my step dad has to go away to work... I feel I need to try to keep her spirits up as the last thing that will help her is falling into a depression. We just have to get her recovered ready to fight the cancer. It has been all hands on deck trying to research alternative treatments (my mum is very naturalistic and will always choose alternative medicine where possible) which will compliment her chemo and make it easier to deal with. She is also looking at emotional help as dealing with a life changing op PLUS an advanced cancer diagnosis is such a hard thing to take on board. I am doing my best to engage her in pointless conversation to keep her mind off her ill health... It seems to work but there is such a sadness in her eyes all the time.

To comment on some of what you ladies have mentioned so far... The surgeon who did her emerg op is not a gyn-onc but is a colorectal surgeon who had to deal with the medical emergency he was presented with. It was upon opening her up that he saw what was going on and so performed a laparoscopy while he was in there. From what he tells us, the cancer has grown around her bowl and choked it. She can still pass wind since the op so it's not a complete obstruction from the sounds of it. She also has moderate ascites and what the surgeon said was ''speckles' of cancer all over her peritoneum. From what we understand, the liver lesion is superficial.

There was no mention of lymph node involvement... Would they have been able to see that through laparoscopy or will that come in the histology meeting? It looks like the metastases are via peritoneal fluid. She had a biopsy of the inside of her colon performed a few weeks back which came back clear so I assume that her bowel has not been affected internally and is otherwise healthy.

Have any of you had this experience with the bowel obstruction? I would love to know.

Histology meeting is Monday afternoon so I hope we know more then...i just hope they can find the primary and have a plan of action. My worst fear is that they will say they can only offer palliative treatment... I'm not sure how we will cope with that news.

Keep praying ladies!! She needs all the strength she can get
X

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

So glad you've been able to take off work to help your step dad take care of your mum, as she recovers from her surgery and deals physically and emotionally with the reality that she has cancer. I expect that her surgeon took samples of her lymph nodes to get tested, with results probably coming back to you at the histology meeting. My situation was different from your mum's. While my tumor had attached itself to my lower bowel, there was no bowel obstruction at that point. A little over a year after my surgery, however, I did start to experience episodes of partial small bowel obstruction caused by surgery adhesions (scarring) which is very common for people who have had abdominal surgery.

If your mum is told that the only game plan is palliative care, I would strongly encourage your mum to get a second opinion to see if another doctor recommends another approach. As long as your mum has hope and wants to fight this, then she should be allowed to do so, in my opinion. Nobody, not even doctors, have that magic crystal ball telling us how long we have to live. I never give up hope!

Sending lots of prayers to your mum, you and your step dad!

Hugs,

Kelly

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am sorry for your mom's diagnosis. I was over a year getting the correct diagnosis. Mine was spread over the peritoneum also. It has been 2 1/2 years and I have been on and off chemo. They often can treat it like a chronic illness now. When it shows up they beat it back with chemo. I have mostly had a good quality of liffe in spite of things. We have traveled and golfed and enjoyed things. Being healthy to begin
with is a big help.
There are lots of drugs out there and research being done.
Please keep us posted and feel free to ask questions or express feelings. We are all here for you and your mom.
Hugs!

Catherine-OC
Posts: 9
Joined: Dec 2012

What stage was your cancer at dx lulu? And did you have surgery?
The colorectal surgeon did suggest that at this stage, surgery is not an option, whether this is because of where the cancer has spread to or because she has just had a massive surgery I do not know.
Reading about the bowel obstruction stuff is very scary as it suggests it is symptomatic of end of life stage patients... I pray there are exceptions to this rule.

I feel so helpless and that all I can do is learn about this disease and be in the best place I can to look after her... Coming here helps tremendously as I can actually speak to people who are going through or have been through these things... And you do quickly realise that everybodies illness is unique.

I'm so scared about going with her on Monday as I do not know how I am going to hold it together... I just know that I have to no matter what they tell us, for her sake.

The surgeon said, as he visited us by her hospital bed last week, "I'll level with you here, this is pretty advanced and is going to be very tough to cure"
I hope he meant 'very tough' and not 'impossible'

C x

Catherine-OC
Posts: 9
Joined: Dec 2012

So my mum starts her chemo today and is doing carbo/taxol this week followed by 2 weeks low dose taxol. She is going for 4 rounds then hopefully they will be able to operate and also reverse her ostomy. She has been given a stage 3c diagnosis and they are treating her curatively. It doesn't make anything easier to deal with but we are relieved she is not stage 4 and that her gyn/onc feels that she is treatable.

All I can do is my best to make sure she is comfortable and does not suffer too much in terms of side effects.

I would love to hear from the 3c ladies here and of your chemo experiences.

With love,
Cx

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

I'm glad that your doctor feels she is treatable. Other ladies will probably chime in but I can tell you that one of my friends is a nine-year (and counting!) stage 3c survivor. While she has had her share of chemo over the last nine years, that has not stopped her from enjoying life with her family and friends. In the last couple of years alone, she and her husband have traveled to Alaska, Ireland, Italy and China and more, and she shows no signs of slowing down.

Your mum has every reason to be hopeful about the future!

Love and hugs,

Kelly

Alexandra's picture
Alexandra
Posts: 1263
Joined: Jul 2012

It's so good to hear that your mom is starting treatment and I hope she feels better soon.

I was diagnosed with OvCa stage 3C in May 2012 with ascites, 9cm tumor, mets to peritoneum and omentum. I had 4 rounds of Taxol/Carboplatin chemo every 3 weeks, then debulking surgery (optimal), then 3 more rounds of chemo. I am 45 y.o. otherwise healthy and tolerated chemo well. I had ascites tapped before starting chemo and it did not come back, tumor and mets shrunk after chemo #4 and were not visible during surgery, CA125 dropped from 1083 to 7.

I refused to sign consent to ileostomy / colostomy even though my GYN/ONC claimed that it was reversible. She was telling me that no one wants a stoma, but 99% agree to it to save their lives. I guess I was in the 1% minority, to me it was a quality of life issue. It was a pretty big gamble on my part as I was told that without my consent if there was bowel involvement, they will open and close and not proceed with the hysterectomy.
In my case tumor was not attached to the bowel, but I did not know that until after surgery.

Catherine-OC
Posts: 9
Joined: Dec 2012

Firstly happy new year to all the wonderful and inspirational people on these boards and may the support network continue to flourish in 2013.

I thought its been a while since i posted and thought that trackingmy mums progress here would be a good thing, so maybe others will read through this one day and find it informative and with any luck, hopeful.

She has just completed her first round of carbo/taxol and is doing incredibly well thus far.  She has he treatment on a Friday and the steroid injections tie her over for Saturday but come Sunday/ Monday she does feel some side effects.  Some nausea and vomiting, occasional headahces and bouts of fatigue, but these only seem to last a day or two before she returns to 'normal'. She is now in her 1st 'rest week' from treatment so its time to heal heal HEAL!!! 

It is my families misson in this battle to everything in our power to make her treatment more bearable and it seems sto be working well so far. She is taking lots of of supplements including:

Resveratrol, Salvesterol, co Q10, Hemp powder for protein, Zambroza, Maximol, bio bran,... the list goes on.

She is also having homeopathy treatments and Reiki for the emotional connetations of a diagnosis like this, which help relieve her anxiety, depression, stress etc... I feel this is key part in cancer treatment as I do believe that someones emotional 'chemistry' has a part to play in the fight. 

She is also seeing a naturopathic doctor who will be writing her nutritional plan and also treating her with vit C.  She also seems to be putting a bit of weight back on after everything she has just been through which is also fantastic to see.

We have a few other tricks up our sleeves as well ;)

 

We just feel that we must do everything in our power to kick this cancer in the ass.

We also found out that my great aunt (whom we regretfully see not nearly as much as we should) is also battling ovarian cancer.  It would certainly seem that my mother is a prime suspect for gene mutations and will be tested further ahead, which will pave the way for myself and my sister to get better, regular screening. So I guess at least some future good will come from this horrid scenario. 

My Mums onc has also said that he is reducing the number of chemo rounds before surgery from 4 to 3... that has to be a good thing, right?

She had he CA125 count before she began any chemo - it was 231.  After her 1st treatment (she is being treated weekly) her CA125 went down to 175. which is another little bit of good news.  They dont test every time, but will do before she starts round 2 in a couple of weeks. She still has all her hair and is using cold cap to try and keep it as long as possible!

We have also found out that the gynae onc she is being treated by is the best in Europe and is also world renowned for his research and trials.  All the nurses etc whom my mother has spoken to have all said that if it where them, they would want him to look after them... he's a very kind, good natures and understanding man and I am so happy that he is the one looking after my Mum.

She is also far more at peace with her ostomy and is now just looking forward to the prospect of its reversal in March.

So... here's hoping that the new year brings good news after good news for my mum, my family, to you all and all your families and supporters too!

All the best everybody

xxx

 

Catherine-OC
Posts: 9
Joined: Dec 2012

These were 2 words used to describe my mums condition yesterday. She has noticed river the past week or so that her ostomy is healing up. Given that it was fitted to alleviate a complete bowel obstruction, we should be concerned... However the miraculous side to this situation is that her obstruction appears to have self healed. She now goes to the loo normally. She said that she has not felt this well for at least 6 months.  The surgeon who did her emerg operation said that he was flummoxed and that in his book, from what he saw inside her, she should not be able to pass stool through the normal end. The stoma nurse called her an anomaly. Neither had seen anything like it before. He is happy to llave it to heal as long as everything is working properly. 

he said either the chemo is doing a fantastic job already (1 round so far) or her bowel has done something very rare and almost unbelievable and given itself a bypass which apparently has been known! 

so some bizarre but hopefully promising news. 

I remember about 20 years ago my mum had a brain haemorrhage... Whilst in hospital the decision was made not to operate as she was doing such an amazing job at self healing. her strength gives us all hope.

x

mopar
Posts: 1954
Joined: Apr 2003

May her wonderful progress continue.  And may her will and enduring spirit be an inspiration to everyone around her!

(((HUGS))) & PRAYERS

Monika

 

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