breakdown

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Hi everyone,

Hope you're all faring reasonably well under the circumstances.

I was doing okay but broke down today. I've become so listless that I'm incapable of working or doing anything that might be considered remotely productive. i have exams to set, papers to correct. I begin working, then just find myself going from one site to another and I accomplish Nothing or not much.

Today it dawned on me that my life has become one big sham. Since Gilles' death, I've put on a brave face, pretending to cope, smiling and trying to look "normal". During this confinement, we're being asked as teachers to pretend that new technology is the answer to everything, that courses and exams can go on as usual. As a foreign language teacher, I can tell you these exams are a joke. The students are either just copying over their courses or using Google Translate. And then, today, as I was drinking non-alcoholic beer, since the sale of alcohol has been banned here during the confinement, I thought that even that has because a sham.

It's alright when you choose to be alone but the word loneliness has taken on a whole new meaning. I had finally found a few people that I was comfortable with and enjoyed being with from time to time. The loneliness of the first few months has returned in full force and all I could do this afternoon was sob - for Gilles' suffering, for me, my loss, and for the life I will no longer have with him.

I feel really down and don't know in what state I'll wake up tomorrow. You can tell that people no longer know what to say when you say you've been crying. More pretence. Had a lovely day, thank you very much

Thanks for reading, for listening to me whimper and whine and feeling sorry for myself

Hugs to everyone

  • Ian I will be thinking of you these days. It’s not easy thinking back on things. Go back to one day at a time. 
    take care. 
    Mike

    Love you always Winnie xx
  •  Ian my friend you and your lovely wife went through a horrendous time. I just wish hospital doctors would stop giving false hope when they know its bullshit. Anne and I were given this same bullshit when she saw a Registrar. Her surgeon/specialist couldnt be bothered to see Anne on this occasion because Anne and I had already researched pancreatic cancer and had  been told by him all sorts of false rubbish. He just wanted to get his scalpel into her. A cold man who said after the proposed operation all Anne would need is injections and pills. What he didn't tell us - but we knew -Anne would have become totally diabetic with no means of digesting her food without pills. He also conveniently forget to tell us that only 5% of patients with pancreatic cancer survive after 5yrs. And the dreadful quality of life she would experience for the extra time given. Anne had told him she needed time to think about his proposed operation. So he passed her over. to the registrar. Anne refused all treatment and  passed over peacefully 14 months later. It seems you and your dear wife were similarly treated. I'm so sorry mate for all that happened and now you are left with your prostrate problems. Bless you my friend. I'm always here for you.

    Love and Light 

    Geoff x

    At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.

  • Thank you all for your kindness it helps a lot when your suddenly hit by this horrible grief thing again stay safe 

    Ian
  • Hi Ian and Geoff,

    It is hard enough to deal with your loved one passing but it makes me sad and sometimes ashamed as a nurse to hear these stories of poor care.

    Ric had poor care and misdiagnosis twice. I have no intention of letting it go but it is pointless writing to PALS at this time. It was my promise to him to get at least an apology and to make the staff think about with other patients. One of the things that has upset me caring for these cancer patients in the crisis is that it is still happening!!!! 

    I could never work for the NHS again the way I feel at present! 

    I hope you feel that you can express your complaints Ian and that you also did Geoff.

    Take care. Look after yourselves.

    Love and hugs Alison xxx

  • Hi Alison 

    I can't complain about the poor care it was the false hope, with held information plus the cold attitude of the surgeon/specialist that made us feel uncomfortable. My beef is that patients should be given all the facts and not gloss over the hardships or even the prognosis. Being positive should also be about stating the negatives. But I suppose in essence the surgeon/specialist was just following NHS guidelines? Who knows? 

    However Annes palliative care was given by Ealing Hospital Middx. Her care was brilliant.Full of love and compassion with 24hr attention. I can't thank them all enough from the refreshment ladies, Nurses, cleaners and Doctors. I gave them a glowing feedback on line. 

    Love and Light 

    Geoff x

    At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.

  • Hi Geoff,

    That comes down to poor communication! That is one of my main complaints, I found the oncologist always sounded irritated by us asking questions, like how dare we question her!!!

    Take care xxx

  • FormerMember
    FormerMember in reply to Geoff999

    Geoff, please can I ask what your wife’s symptoms were and how long did it take for the disease to be diagnosed.  Many thanks.

  • Dear Jo27

    Firstly Anne started to gradually lose weight. An MRI confirmed pancreatic cancer. Her weight loss had gone on for about 2 months. Then she started feeling sick and was put on a medication called Creon before each meal. This compensated for the pancreas no longer being able to process food.Then Anne gradually started to turn yellow. Eventually her urine looked like coca cola and that's when she was hospitalized. From start to finish Anne survived 15 months. 

    At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.

  • FormerMember
    FormerMember in reply to Geoff999

    Thanks you so much Geoff for taking the time to reply.  Did Ann not have chemo, 15 months from diagnosis seems a lot longer than many of the other stories I have read?  So sorry for your loss. 

  • Dear Jo27

    Anne was offered the Whipple procedure when it was first discovered. But she had researched the statistics and the fact that only about 5% of people who have surgery and chemo for pancreatic cancer survive more than 5yrs. Had she accepted the procedure Anne would have become a full diabetic with daily injections  plus taking Creon after every meal. Plus all the potential physical discomforts following the operation. She asked the Registrar  we saw  three questions along with these replies.

    Q:- If I have just the chemo how long will I live?  A:- 12 - to 18 months.

    Q:- How long will I have if I don't have any treatment? A:- 6 to 12 months.

    Q:- How long will I have if I had the op and chemo? A:- Maybe 5yrs with a chance of a complete cure. 

    At aged 70 along with Lupus ( an incurable immune system condition) Anne knew that there would be no chance of a complete cure. 

    Jo27. If you study the figures they are all very grim so my brave darling Anne said she would just let nature take its course. As I said earlier Anne survived 15 months.

    At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.