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Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Did I miss something?

Boonsbabe
Posted by

Good morning

I have been sitting on the sidelines but now feel able to write although I have started this several times and deleted my words!  I am in the sitting room with my mum who at the beginning of May, as far as we were aware, was suffering from Barretts but was finding it difficult to swallow and couldn't eat solid foods due to excessive mucus.  All the reports from her previous endoscopies mentioned Barretts although for the last one she was referred to Norwich where she had ablation of some cells which were suspect but not described as cancer.  We assumed the extra pain and discomfort she was feeling was due to the procedures.  However, when she stopped drinking even water, I called our surgery and the practice paramedic called.  He appraised the situation and chatted and suggested that mum be put on palliative care and the Gold Sheet.  This was a bit of a shock but he was so kind and helpful and got Fresubin and Endure sorted for mum and the tablets which he felt she didn't require were stopped and she was given effervescent co-codamol.   The next week, the Dr called when I had a appointment and decided patches and liquid morphine would be more effective and when I went to collect the prescriptions, I asked to see him.  I asked if mum had cancer and he said yes - there was nothing more they could do for mum but make her comfortable.  He suggested she only had weeks to live.  So this is where we are now.  Mum has gone downhill rapidly but is no longer in pain.  I am torn between her having so much pain medication but my dad (who is a bowel cancer survivor  with stoma) doesnt want her suffering as she was with the pain.  She now cannot walk and we have to dress and toilet her which is not a hardship but distresses her. I got a wheeled seat/commode on Monday which makes everything easier.

I took early retirement in November as dad who as well as being a cancer survivor has had heart surgery and two knee replacements but these are wearing out.  Mum was getting depressed with her Barretts troubles and Menieres.  I was more than happy to help them both and ease them into their last years together and cover the day to day chores etc.  However, the summer I thought I would have with them both to begin the new chapter in their life has all gone 'Pete Tong' and I am confused.  Did I miss something? How did we get from Barretts to inoperable tumour?   It has all happened so quickly.

It is evident because of mum's rapid deterioration that we don't have long with her.  Although every day she is slipping further away I don't feel sad, as such.  I just want to make her comfortble and happy and help dad manage daily. 

Will the realisation hit me now or later - who knows?  Why do I feel that I missed something?  Did I miss something?

Granny Sue
Posted by

You havent missed anything she had regular endoscopes and sometimes cancer is so unpredictable that not even the experts can tell what will happen .Bill had oesphageal as his primary having suffered from acid reflux for years .He too started having really excessive mucus and unable to get food down .Thats when I insisted he got an endoscope .They couldnt get the scope into his stomach as the tumour was too big .Now its gone from there to his brain very unexpected but the specialist nurse said at the start it was a very difficult one to treat . I think that if she is pain free that is the most important thing and you are doing a wonderful job keep posting here we will help you and you in turn will help others take care get breaks when you can lots of hugs x

Granny Sue

Boonsbabe
Posted by

Thank you for your kind words which have helped so much. Have not encountered esophageal cancer before but hearing how it can effect someone else makes it more understandable. Don't feel so alone now.