Its been quite a few months (maybe as long as a year) since my mum first visited her GP with swallowing problems, rapid weight loss, hoarse voice and loss of appetite. She was referred for an endoscopy, but the specialist didnt think the procedure was necessary and instead sent her for an ultrasound scan looking for gallstones. Some weeks later a blood test revealed mum had the helicobacter bug which was treated with antibiotics and blamed for her gastric/throat problems. Time went on and her symptoms got worse. She revisited a GP - alarm bells ringing loudly he referred her to ENT who promptly investigated her, MRI & CT scanned her, found a mass, took biopsies and told her it was probably cancer. It was throught to be inoperable due to its size and chemo and radio would begin quickly but be warned "there are no guarantees" and if it doesnt work we will "take care of you"! That was at the beginning of December. She was put in touch with the Head and Neck Nurse Specialist and told not to worry, we are here to support you. Since then it turns out that the biopsy results were inconclusive and further investigation was needed - a further tumour had been seen lower down the Oesophagus which needed an ENDOSCOPY. An anxious wait continued over Christmas as everything stopped for the holidays. The endoscopy took place on New Years Eve. No more news, except that the Head and Neck team would not be looking after mum, she would now be under the Upper GI Team. After numerous phone calls to numerous people we were told the case would be discussed in the MDT this Wednesday and undoubtedly there would be an appointment quickly arranged. Still no news. The specialist nurse did not call back. Her answerphone told us she was away for a few days. Somebodys secretary thought there might be an appointment with somebody pencilled in for the end of January. (It seems that whoever that is is going on holiday)..... What the hell is going on. It feels as though the left hand doesnt know what the right is doing. My family and I do realise that tests and results/diagnosis/staging etc takes time, but the lack of information given to patients just adds insult to this illness. I am a nurse in the NHS and frankly I am embarrassed that my mother has been left with all this worry. She only knows she has cancer. She doesnt know how advanced it is, she thinks shes going to die. Its difficult for her to stay positive, particularly when she can barely swallow and is taking very little nutrition. Luckily I am in a position to advise her and obtain plenty of nutritional supplements (Fortisip Ensure Calogen etc), otherwise who knows what state she would be in. We are so frustrated!!!!
