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Could anything have been done differently?

Poppy2005
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Hi

I am hoping that the answer to the above question will be "no" but wonder if you can help me.

My 70 year old mum recently died of advanced bowel cancer, which had spread to her brain and liver.

She had an operation to remove the tumour from her bowel in March last year, together with many cancerous lymph nodes.

She did not start chemo until 3 months later due to the pandemic, as the consultant did not want her near the hospital.

We then found out it had spread to her liver.

She tried various forms of chemo (tablet and drip) and although it did not have much effect, the tumours remained stable until around July this year when she was taken off the drip and put on to tablets again (which she never tolerated as well as the drip).  Then in August we found it had spread to her brain.  Her consultant advised that she stop the chemo tablets, but then went on holiday and another consultant put her back on them.  She saw her usual consultant again at the beginning of October, who took her back off the tablets and told her they could give her no further treatment/surgery, but that in spite of this she could possibly live for some time.  She was reasonably ok until the end of October when she deteriorated rapidly and was taken into hospital for low sodium levels.  Whilst she was there they found further tumours in her liver, one of which was blocking her bile duct and they decided it was too risky to operate.  They gave her 3 months to live and she was transferred to a local care home.  She died a week later.  I now feel guilty that she was not at home, but due to our personal circumstances we felt we could not manage, as a care package could not be arranged and she was told she could not go into the hospice as she was not within 4 weeks of dying. She was not happy about this but later seemed to agree it was for the best.

I have so many unanswered questions - could it have made a difference if she have gone private from the start  - access to different drugs etc/starting chemo earlier/treating her for longer, as the NHS will only fund so many treatments for someone (she had the means to go private but decided not to as she did not think it would make a difference), did the delay in starting chemo not help, did taking her off the drip (which had previously kept her liver tumours stable) lead to the brain tumour and further liver tumours, did putting her back on the chemo tablets at the end cause her rapid decline?  Also, why did she only last a week after the hospital said 3 months?  We could have managed at home for this short time.  Did she lose the will to live because she was unhappy in the care home?  I have no reason to think she was being neglected as the home is well regarded, but I had visited her only 2 days before she died and she was talking ok, although in some discomfort and not eating much, but she didn't seem to like what she was being given to eat.  She had also been asking for paracetamol, but was told she had to wait until next day when the doctor would be there.  The day after that she did not answer her mobile and late that night we got a call to say she had deteriorated.  My dad and I were with her when she died, but she never regained consciousness.

Sorry for all the questions, which I know will be difficult for you to answer, but I don't know any medical people in real life and I need to know for my own peace of mind even though it will not change anything now.

Thank you for your time.

x

 

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    Not sure about the hospital side of it.  But do not go beating yourselves up over the "what ifs" surrounding the decisions you as a family made. No one asks for cancer and it's all sheer bad luck. Had you gone private, it may never have made an iota of difference to her outcome. You will never be able to go back and answer that question.

    Again, I have no idea if your mum received the level of care she deserved, as no one can answer that other than the hospital and the people who treated her.  But that isn't on you or your mother. We just tend to do what the doctors tell us and there's nothing wrong with that.

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    Hi and thanks for your post  

    I'm so sorry to hear about your mum - you went through a very tough time very quickly and it's not surprising that you are now processing everything that your mum went through, and wondering if anything could have been done differently.

    It's not unusual to think like this but as ProfBaw says, although it's difficult to look back , please don't feel guilty or keep yourself in the past.

    You say that your mum was initially diagnosed with spread already to the lymph glands, which means that there may have always been a chance that microscopic cells could have already seeded in other parts of the body early on. Some people's cancers are very aggressive and despite treatment,  won't always respond - it really does vary very widely and comparisons can't be made.

    Sadly, your mum was diagnosed during a pandemic when many clinicians were having to make  decisions about the risk of getting covid in hospitals against waiting for their treatment. Your mum was in the older age group where she would have been at a higher risk of getting covid.

    Its very difficult giving a prognosis, as again, you cannot tell how people will ultimately respond to their cancer and treatment . Things can sometimes move very quickly once many organs in the body have been affected, though for some people this doesn't seem to happen - it's very hard to predict.

    You ask if going privately would have changed things - for many people this would not make a difference, though it's impossible to say. The NHS don't actually fund only so many treatments - if needed and the patients are continuing to  respond to treatments that have shown to be of benefit after being well researched, they will be offered this.

    It sounds like you still have many questions , so as it's sometimes easier talking things through on the phone,  please do give us a ring on Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    I hope that as time passes and you manage to get some questions answered, although  it won't be possible to get answers to all of them, that you will feel more at peace with what happened, though this can take some time to process. It's been a troubling few years with the pandemic and you have also had to cope with your mum's diagnosis, so it's not surprising that things feel very unsettled. Please don't feel guilty - you sound very loving and supportive and I'm sure your mum knew this, especially as you and your dad were able to be with her at the end.

    All the very best to you and your family

    Wanda

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