JulesB Posted September 22, 2011 Report Share Posted September 22, 2011 Please can I ask for some Reiki and positive thoughts for my lovely mum, Margaret. She was diagnosed with lung cancer four weeks ago. It's not curable and it's already spread to her heart and other areas, but her docs say they can try and slow it down with chemo and radiotherapy. She still hasn't started treatment, the NHS has been pretty rubbish so far. She was told in hospital, on her own, by a ward doctor on the Friday, then left until the following Tuesday before anyone apart from the general nursing staff came to talk to her about it. I had to track down the Macmillan nurses ourselves and ask for them to be involved as none of the departments/teams who should have been talking to each other seemed to be communicating properly, or with any speed. And they certainly don't believe in telling the patient what's going on. She has been back and forth for tests to establish the best way forward and she's constantly kept in the dark. Last week, after I threw my teddy out of the pram at a case conference and gave the consultant and his team a piece of my mind about the delays and the way mum had been treated, he said he would order a lung biopsy and then treatment could possibly start in a week. When she turned up the nurse said that had been cancelled and they were doing a biopsy from a lump in her neck instead (and then tried to take it from the wrong side). She lives alone in a caravan and I'm a three hour drive away from her, and my sister is five hours away. When I'm not driving up and down or ringing doctors to find out what's going on I seem to spend most of my time in tears, but I'm trying to be strong for mum She's a very positive person and I've never heard her complain about all the disabilities she has, but this has floored her. She was very depressed at first and had stopped eating so was very weak and just sleeping all day, but she's on steroids now and is getting a little bit of her spark back. And the Macmillan nurses have been wonderful with her. I'm sorry to rabbit on, but if anyone has any good thoughts to spare for her, they would be very much appreciated. Link to comment Share on other sites More sharing options...
suzeanna Posted September 22, 2011 Report Share Posted September 22, 2011 I'm so sorry Jules, and absolutely disgusted about the way your mum has been treated and ignored. I send all possible good wishes, and will try to send distant Reiki for her. I'm not a religious person, don't know if you or she is, but I'm sure most local vicars would be happy to have their congregation include her in their prayers...you can never have too much goodwill coming your way. Link to comment Share on other sites More sharing options...
kittycat Posted September 22, 2011 Report Share Posted September 22, 2011 It's terrible the way your mother has been treated. Is there a PALS operating at the hospital your Mother is receiving her treatment? We had communication problems and delays when my father was treated for cancer and they stepped in and got things moving, they was really helpful. Sending lots of good thoughts to your Mother and you Link to comment Share on other sites More sharing options...
merledogs Posted September 22, 2011 Report Share Posted September 22, 2011 Jules I'm so sorry I am sending absolutely zillions of positive thoughts and hugs and if you feel like ranting and raving, just remember we're all your friends on here :GroupHug: Link to comment Share on other sites More sharing options...
snow Posted September 22, 2011 Report Share Posted September 22, 2011 Jules I am so very sorry - I can quite understand your anger and frustration, my mother too was told on her own and then left without any further information, I'm still very annoyed about it. I am finding this place a real haven to off load some of how I feel and there are loads of really supportive and helpful people here who really do care I have no advice - I'm just taking things a few moments at a time but I am thinking of you and your family and wishing you all the very best Link to comment Share on other sites More sharing options...
griff Posted September 22, 2011 Report Share Posted September 22, 2011 Jules :GroupHug: for you and :GroupHug: :GroupHug: for your mum. i do hope when you feel strong enough you will be able to write a letter to the hospital and outline your disgust at your mum being given such devestating news on her own, you too snow my mums mum had the same done to her a little bit of compassion and common sense is not much to ask for! my other nan now has terminal cancer and has had no treatment and is here longer than she should have been, we have had a totally different experience altogether, we were left to contact macmillan but we were given the number by the hospital, i think it is disgusting the way people are treated when they are dealt such a terrible hand. it is probably not high on your list of priorities but get in touch with the benefits helpline and make sure your mum is getting all she should be getting and also if you can contact her energy supplier (if she is on mains) and ask if she is entitled to a reduction in her energy bills.... sometimes they say yes and sometimes no but worth asking. Link to comment Share on other sites More sharing options...
collies r best Posted September 22, 2011 Report Share Posted September 22, 2011 How awful, both the illness and the way shes been treated. Loads of good thoughts sent Link to comment Share on other sites More sharing options...
murtle Posted September 22, 2011 Report Share Posted September 22, 2011 What a dreadful mess, I hope your Mom starts getting the treatment she needs. Will send positive thoughts and Reiki for your Mom and you Jules. xxx Link to comment Share on other sites More sharing options...
owl Posted September 22, 2011 Report Share Posted September 22, 2011 Will ask for healing from everyone I know who does it. Where does your mum live? I'm wondering if there is any local support group apart from MacMillan. Link to comment Share on other sites More sharing options...
blackmagic Posted September 22, 2011 Report Share Posted September 22, 2011 to you all. It is many years ago now that my aunt had a similar horrible experience. I thought things had improved. It was afternoon visiting so there were many visitors in the ward. As the hospital was a distance away my aunt had no visitors as she had only gone to the main hospital for an exploratory xray. We expected her to be returned to her local hospital to await the result. The doctor came and stood at the bottom of her bed, with his entourage of underlings, and told her from there. 'Mrs X , you have lung cancer and there is nothing can be done.' He then walked off with his entourage following. She was left alone, in a crowded ward, to digest that information. Roll on a few years and my mother had a suspicious shadow on her lung but was not conclusive. She had the same consultant as my aunt had had ( but didn't realise it) and my sister was determined that my mother would not be told the same way as my aunt. My sister bullied him into agreeing not to tell my mother. We knew she would not want to know. She hid from things she didn't like and as a retired nurse she was well aware of her symptoms, but would not admit it. He finally agreed not to tell her unless she asked, when he would tell her the truth. We were happy with that as we knew she would never ask as she did not want to know. What happened to compassion? Link to comment Share on other sites More sharing options...
scotslass Posted September 22, 2011 Report Share Posted September 22, 2011 I'm so sorry you and your mum are facing this. Can I suggest that you interrogate the doctors about any proposed treatment before they start? When my mother had cancer, and it had spread to her liver, we were told she'd have "about 6 months on average". A week or two later, we had a letter from the hospital suggesting "treatment", so off we went, all the way to Glasgow, two hours' drive away. We sat around for hours "surrounded by poor sick people" as Mum said, until I finally collared a passing doctor and asked what was going on. To cut a long story short, he told me that "a new treatment was having some success". I asked him what exactly he meant by "success" - he was extremely reluctant to give me stats, but finally muttered "some people have survived for up to nine months". So, if my poor Mum had been prepared to make herself a guinea pig for their treatment, she'd have spent the last months of her life feeling sick, possibly losing her hair and probably spending much of the time in hospital - all for a potential extra 3 months. Instead, we took her home where her pain was well controlled by our excellent GPs and community nurses, and she lived out her time - almost 6 months - in peace. My heart goes out to you both. Wishing you strength. Link to comment Share on other sites More sharing options...
Clare Posted September 22, 2011 Report Share Posted September 22, 2011 Sending tons of good thoughts for your mum :GroupHug: My dad has been treated the same way in his cancer battle and I know how frustrating and upsetting it is to see your parents treated that way on top of everything else they are having to come to terms with Link to comment Share on other sites More sharing options...
Jazz Posted September 22, 2011 Report Share Posted September 22, 2011 im so sorry your mum is going through this. the macmillan nurses were fantastic. they sorted out benefits, and liased with the doctors. Link to comment Share on other sites More sharing options...
gooster Posted September 22, 2011 Report Share Posted September 22, 2011 :GroupHug: to you and your mum. I can second Steph's advice to contact PALS, I have had a friend who was having problems with her local hospital. She got PALS involved and it was sorted pretty quickly Link to comment Share on other sites More sharing options...
Ian Posted September 22, 2011 Report Share Posted September 22, 2011 Jules, Snow my thoughts are with you & yours. Please do push for treatment to begin asap. In January 2011 my Uncle was diagnosed with lung cancer, he too initially had delays in treatment commencing. In May he was admitted to a local hospice for a couple of weeks or so we believed. In fact he went down hill far faster than I had expected and died in there on July 21st. As you can see the earlier treatment starts the better! Some are of course less severe & I hope this proves so for you but if there is a hospice available I'd suggest you contact them for advice - the care he had in there was fantastic 1 nurse to ever 2 patients (I think they said its about 4 nurses to 30 or 34 in hospital) Best of luck with your Mums fight Link to comment Share on other sites More sharing options...
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