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Lost mum 2 weeks ago to secondary breast cancer in the liver - My Story.

s3z
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I am 25, I lost my 54 yr old mum to secondary breast cancer in the liver 2 weeks ago. I found that reading other peoples stories helped me, and still is helping me now, so I am sharing my story too.
18 months ago my mum was diagnosed with breast cancer, it was caught soon enough to have the lump removed. She had chemo after and radiotherapy as precautions to stop the cancer coming back. Over all, it went as well as it could and my mum was given the all clear just before Christmas, 23rd December 2013. We were all over the moon with happiness, the only thing that was putting a bit of a downer on things was the fact my mum had been complaining of an ache at the back of her shoulder. After several trips to the doctors and shooting star they were adamant that it was nothing to worry about and it was nerve damage from the radiotherapy. She was sent for physiotherapy and given painkillers. When my mum came back form the physiotherapy she told me and my dad how painful it was but that it must be doing her good.
At the beginning of January the pain was becoming unbearable and she was signed off work on the sick. The doctor continued giving her strong painkillers and paracetamol, things went down hill very quickly and my mum couldn't stop being sick. My dad followed all the instructions the doctor gave and kept taking mum back and to looking for answers. After 3 weeks of mum being sick she was loosing weight and couldn't even get out of bed, my dad was at the end of his tether and broke down to me a few times (I still live with parents) The last time they went to the doctors my dad insisted they do a blood test.
A week later we got a phone call around 9pm on Tuesday 28th Jan 2014. The results came back showing alarming abnormalities in her blood levels. I'm not really sure what but they said that they were similar to results to someone suffering pneumonia. She was told to go straight to the doctor in the morning who then told her to go to A&E.
Wednesday 29th Jan we were told she had a gall stone...very painful but fixable.
Thursday 30th Jan we were told she had a gallstone and also secondary breast cancer in the liver. As a result of the amount of painkillers she had been prescribed by the doctor the amount of paracetamol in my mums liver was dangerous and her liver was failing.
Friday 31st Jan we were told the cancer is also in the lung.
Saturday 1st Feb we are told it is also in the brain, there is no point in more tests as it is most probably everywhere in the body. Nothing they can do, time for palliative care. Weeks left.
Wednesday 5th Feb we moved mum to nightingale house.
Over the next 3 weeks we watched mum deteriorate, and she passed away Tuesday 25th February 2014.
We are all left feeling completely lost and in shock about what has happened the past few weeks. For me it hasn't sank in properly yet, I feel completely numb except for the odd time every couple of days I break down crying. My dad isn't coping very well, we are there for each other and my younger brother and sister but ultimately we all just want mum back, and its never going to happen. I feel angry and that she was failed by the health service, I can't understand how someone can be given the all clear of cancer when in actual fact they are riddled with it. She was treated with paracetamol for liver cancer and physiotherapy for the lung cancer, the pain was the cancer pushing pressure on her ribs. I have thought about this all so much it is beginning to drive me mad. I know now it won't bring any good by dwelling on what ifs but things will be followed up when we are stronger. If we had had more tests and aftercare my mum would still be here today.
If anyone reading this has had, has or knows someone who is suffering or suffered cancer then all I ask that is if you don't feel that something is right then ask for more tests...bloods tests/ CT scans etc. If we had known what we know now then we would of pestered the doctors and I think things would be different today. I may sound dramatic and I don't want to scare anyone but if someone listens to this advice and it helps then at least a little bit of good has come out of this ordeal. Better to be safe than sorry eh?!
Shortly after mum was taken to nightingale house I felt like we were the only family this was happening to, our whole world was crumbling around us. That's when I started coming on here reading similar stories, it made me realise that we weren't alone. I cried along with peoples losses, realised I shared a lot of the same feelings and emotions and used advice.
We were all with her when she passed, I wish I had been more prepared for what it would be like when she passed, but in reality I don't think you can ever really be prepared. I told her I was proud of her, proud of how she fought to the end and how we were all with her and loved her so much.
A quote I found from reading these forums was, "As long as you have hope the cancer hasn't won". I said it to my mum a few days before she died, and her reply was..." Too right! This little jasper isn't beating me! I've got too much left to see and do!" Right up to the end we all held on to hope.
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    I'm so sorry to read your story.  This is absolutely dreadful and cruel, and I feel for you and your family.

    Yes, you are right.  We have to remain vigilant and ensure that assurances given in relation to 'no evidence of disease' are based on facts.  I'm amazed at how that conclusion could have been reached! No wonder your mum had hope, and must have thought she was well and truly through the worst.  The timeline of her going downhill after that 'all clear' is dramatic.

    In terms of asking for more tests, I have a concern that these sometimes might not be commissioned because of the need to follow NICE guidelines.  Even something as basic as a cholesterol / blood sugar test is subject to guidelines as my GP found out - he had requested a re-run of these tests for sound reasons, but because I had already had the same test within the previous 3 months, the tests were not carried out.  It is because of this latter experience I have become a tad wary about these things so I am also getting printouts of the results of each test even though I'm having to use a medical dictionary to find out what some of it means.

    As for the mis-diagnosis on repeat occasions, my cousin's wife recently lost her brother in similar circumstances - he hawked himself round several doctors including paying for a private consultation. He was unable to get a diagnosis of anything other than gallstones until it was too late.

    I gather it won't be too long before a simple blood test will be available which will enable cancer markers to be picked up, and this will reduce the need for biopses and make it far easier to identify the presence of cancer.  At least it will reduce the chances of mis-diagnoses, though not necessarily incompetence.

    Unfortunately none of the emotion about this can bring your mum back and that is simply terrible. Thank you though for posting, as it could well make a difference to someone here (including myself) when there is a need to be stronger to ensure tests are done.

  • Offline in reply to Boatgirl

    Hi

    So sorry to hear your story and my heart goes out to you and your family.

    I know it will hot lep you but an uncle of mine living in Canada underwnet bypass surgery in September.  He was not recovering as well as hoped and was also having problems breathing.  In the November his doctor referred him to the hospital for further tests.  They found lung cancer and he died only three weeks later.  It was hard to understand how they could operate on his heart (right next to his lungs) and not reliase there was a problem.   

    I have heard of cases where it has taken  long time for a diagnosis because of the symptoms could be many things most of which are not serious.

    With me the only indication I had a problem was that the lymph nodes in my neck swelled up.  I had had a bit of weight loss but this was not particularly surprising as we had to change our diet when my husband was diagnosed with angina.  Without my neck swelling I would not have gone to the doctor and been referred to hospital and got my diagnosis.

    My sister was given the all clear from breast cancer about 18 months ago.  Thankfully she has been fine since but on a couple of occassions she went to the doctor as she was not feeling well and in once case had some pain in her arm.  Doctor was great and carried out blood tests which were fine.  With her arm he offered to refer her back to hospital but did say it was probably soemthing residual from the removal of lymph nodes.  Instead my sister contacted her consultant direct and she confirmed this was most likely the case but she did say if the pain did not go away within a few days to call again and they would get her back.  Thankfully it did go and she has been fine since but it has made all of us more aware.

    You and your family do have my sympathies and I think all you can do is be there for each other as much as possible and feel free to post here as much as you need or want to.  Even it is just to have a moan - we all do from time to time.

    Gill

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    Hi There,

    I just wanted to say hello. I'm so sorry to read your family's story, sounds like you have had a horrible time. I lost my Mum to Cancer in January. I completely understand your feelings of frustration, anger and upset.

    Please take care of yourself.

    Much Love Helen xx

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    Hi s3z, I just read your post and decided I must subscribe to this discussion. I am 28, my mom is 54 and reading your story is almost like living my own life right now. My mom is still with us but for how long who knows. She too was let down so badly by hospitals aftercare and would probably not be in this devastating situation we are all faced with now if the after care had been as attentive as you would expect it to be ! 4yrs ago she was diagnosed with breast cancer, she found a lump in her breast, consulted a doctor and was sent for a mammogram. Which came back as clear. So she waited a while feeling a bit more relaxed and eventually after a month or so went private which was then found to be stage 3 breast cancer. Had operation first to remove tumour, then chemo and then radio. Then for I think the last 12 months he stomach has been hurting, swollen like a balloon, collapsing regularly, horrendous pain in her body and bones. Every time she went to a doctor they just put it down to something else by which point my mom felt so down thinking how can she just carry on like this all the time. 54 years old but feeling like she is 90! Anyway, another collapse and hallelujah finally did some bloods and a scan which revealed she had secondary cancer in her lungs, liver and bones. She’s almost coming to the end of the chemo now and looking to start meds afterwards to slow down it’s growth. But seriously how can the aftercare let people down like this. Yes ok we all will die eventually and yes we could go at anytime and anyhow, but it’s not atall the point. I feel so young to loose my mother who I love dearly. I have 3 hound children who adore her also, age 1,4&5. It feels so unfair and everything is so uncertain as to what her time frame will be and I just can shake the dread of what will life be like without her, she’s my best friend, my confident and it hurts my heart when I read your story as I can feel the hurt already inside me like I can’t even imagine how I will deal with that time when it comes. The first person you want is your mom, but obviously you can’t go to them because they probably feel guilty for upsetting us. My mom is always apologising for putting us all through it again. But reading your story, although I don’t wish it upon anybody, is actually a comfort to know I’m not the only person with these feelings. Not that I am glad you have them too but I hope you understand what I mean. It’s all quite surreal which kind of helps a little bit. Thankyou for sharing your story and I hope mine brings a tiny bit of comfort to you too. Holly x

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