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My mum passed away and still have a lots of doubts about her death

star68
Posts: 3
Joined: Apr 2017

My mum passed away from colorectal cancer almost a month ago. My mum was an independent 87 year old, she was diagnosed with stage III (cT3cN1M0) superior colorectal cancer in October. It was an invasive adenocarcinoma, with an enlargement of the rectum wall.

They did all the tests (including PET scan in December) and said there was no metastasis. Oncologist decided to treat it as palliative intention with low dose of radiotherapy treatment for four weeks. 

By the 7th session she started with low back pain which to begin with the radiotherapist said it was an isolated back ache not related to the radiotherapy, but the pain wasn't going away and medications were not strong enough to relieve the pain. After two weeks of no improvement the radiotherapist cancels the sessions because she had to be reassessed by the oncologist. We went to the oncologist appointment, my mum in a wheelchair (within two weeks from being totally independent she became totally dependent) begging the doctor to take her pain away.

The doctor refers her to palliative care, we asked all the questions whether radiotherapy treatment triggered the pain, he said no, and if it there was a possibility that she had metastasis, he said perhaps but they were not going to do any tests, his priority was to relieve the pain. So she was referred to palliative care team.

 The palliative care team started her on Palexia (tapentadol) two a day one in the morning and one in the evening. Withing a week she had her dose of Palexia increased to three in the morning and three in the evening, as well as a one corticosteroid, three metamizol (analgesic) three paracetamol 1 gr plus all her regular heart medication and diuretics. She was a little better but not a great deal we were positive that my mum would improve a little.

At the end of the week she started having neck ache and was agitated again with pain. I waited a couple of days and called palliative care to come to the house (until then they were giving the prescriptions over the phone) to assess her pain I wasn't sure if my mum was just having zero pain tolerance or she was getting worse. I explained everything to them, he touched her back and she was screaming with pain but if she didn't move there was no much pain. The nurse then put a pump which the doctor said it was the same medication she was taking but in the pump so they can adjust what is the best dose for her and give it in tablet form. That first night that she had the pump she asked for a tablet in the middle of the night and we gave her what the doctor told us in case she had pain again.

Next day the nurse came back, puts more medication and gave us an antiinflammatory just in case she needed pain relieve later on. That same day in the afternoon she seemed a bit confused and very sleepy which they put down to the medication, I though she was now resting because she had no pain after all she had a lots of sleepless nights and agitation her body and mind was exhausted. I decided to call palliative care and they told me to try and wake her up other wise she would not sleep at night but I couldn't, when I was calling her she was opening her eyes and closing them again, sometimes telling me off for trying to wake her up. She had a nutritional drink in the evening went to bed and after three hours sleep she woke up complaining of shortness of breath, emergency doctor was called. A couple of minutes after they arrived they were saying that these symptoms are normal because of the drugs, as they were saying that my mum drops her head and dies. They tried to reanimate her but couldn't and finally pronounced her dead, heart failure. 

 My doubts are if we didn't give radiotherapy perhaps she would still be alive, my sisters and I are so upset over this we feel betrayed by the doctors, we put all our trust in them and follow their advice and my mum started deteriorating since the radiotherapy. As well how comes she didn't have metastasis in December and the PET scan was done on the 28th of December 2016 and she has metastasis of the bones (not by test evidence but by symptoms) by the 10th of February as soon as she starts radiotherapy treatment?

Her oncologist didn't want to do any more tests so we never knew if she had metastasis, I think he was wrong not wanting to do an MRI, his priotity was to deal with the pain, but if we know what stage the cancer was we would have understood better the situation.

The doctors say it's nothing to do with the radiotherapy, but all I know is that my mum was well before treatment, has someone gone through the same or similar experience.

I would like to hear your opinions on the subject to put my mind at rest.

Thank you for reading my post.

Noellesmom
Posts: 1859
Joined: Aug 2010

I have no doubt that you did the best you could for your mother. You and your sisters were dealing with a lot all at once.

It sounds as though you grief is intensified because your mother had so much pain in spite of palliative care. Not sure why the drugs were not changed if she was still in pain. Someone should have suggested hospice for you.

Medicine, even oncology, is not an exact science. Did she have bone cancer or was her back pain caused by her lumbar spinal bones being softened by radiation causing pressure on the exquisitely sensitive nerves in the lower spine? It is a possibility since she indicated movement made it worse.

It is very early in the grieving process for you, star, but as time goes by and you begin to heal I hope you are able to realize your mom could feel your love through your actions for her and take comfort in that. I guess you won't ever really know exactly what was causing the pain she experienced but I hope you come to feel you did as much as you could and embrace peace that comes with that.  

Ladylacy
Posts: 769
Joined: Apr 2012

We all have questions when we lose our loved ones to cancer or any illness.  Could we have done more, could the doctors have done more, did this treatment cause this, and the list goes on and on.  My husband died from cancer and I have always wondered did we do everything, did the doctors.  I wonder if he had had surgery first instead of radiation and chemo would he have survived, did the radiation cause the second primary that spread and ended his life.   The treatment for cancer is just as dangerous as the cancer itself.  The drugs and radiation caused many side effects that last and do harmful things to the body.  Many people diagnosed with cancer refused all treatment except surgery due to the side effects of the radiation and chemo.  When you hear them advertise the new drugs on TV and when they list the side effects, you don't want to try the drugs. 

Many times the doctor doesn't tell the patient or family exactly how serious they are.  When my husband's cancer spread the doctors were upfront with us and told us the only treatment would be more chemo which would only prolong and possibly could hasten his time.  Radiation and chemo are hard and have lasting effects on a person.  My husband was on hospice and they were great.  From what was explained to us pallative care and hospice are basically the same, except under pallative care you can still receive treatment and go to the doctors, under hospice you can't.  My husband's pain was controlled by medication and he was at home the whole time.

As people tell me second quessing won't do you any good because we do our best and the majority of the time, the doctors and nurses do too.

Wishing you peace and comfort. 

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