I’m sorry to hear that Louise,
It’s a horrible experience in the small hours, I can’t remember when I had a decent nights sleep.
I’ve tried everything to relax during those episodes but nothing works.
Thanks for your good wishes, I wish you the same.
Anthony:rose:
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Louise I am so sorry to hear this, I can only imagine what a scary time it is for you and your family. I do hope they’re able to tweak your medication, I wish you all the best, we are here if you ever need to talk. Dawn
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Thanks everyone. My name means ‘famous woman warrior’. As those who have meant me it takes a lot to get this girl down. At least I had some good news from the tax man yesterday, as they have acknowledged that I should not be paying tax on my pittance of an income
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Dear all,
Had my Haematologist review today, all well👍🏻
I raised the subject of a DNR form to be put on my hospital file.
He is going to talk me through the form at my pre chemo on Thursday.
It sounds horribly final I know but a wise decision I reckon. I am very much aware that I will eventually develop Acute Myeloid Leukaemia when the chemotherapy ceases to be effective. I’ve seen 2 people in the last stages of that, one a good friend the day before he died.
He said my GP should also have a copy.
I’ve already had Pilgrims Hospice complete one.
Hopefully I’ve got a lot longer to go still, there may even be a trial I can get on?
To quote Dylan Thomas “ I shall not go gently into the good night”
Best wishes
Anthony
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Dear Anthony, i have a DNR as I would consider it futile treatment in my case and all my doctors agree. It’s not morbid or “giving up” a saying I find irritating, it just taking control of your treatment choices. As you say these are subjects which can openly be discussed at this stage of your treatment and may actually take a weight off your mind and reduce your anxiety somewhat.
Best wishes alfie
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Dear Alfie,
I completely agree with you.
I don’t think of it as giving up, it’s just being realistic.
I know it’s futile in my case too.
It was a great relief to discuss the matter openly.
I’ve talked at great length about this with my eldest daughter and she understands completely.
Another phrase that irritates me when I’ve told people about my prognosis is “ you must keep positive” or “we all have to die”
I rarely tell anyone now.
I emailed my Pilgrims councillor this morning and said can we just concentrate on helping me cope with the anxiety and stress I have.
She replied more or less immediately saying it’s sounds a good plan.
I have great admiration for you Alfie, you’ve had one setback after another and you still bounce back.
I wish I was as well balanced as you are.
Love and best wishes as always my friend:rose:
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Hi Blackhat, I think it is so important to be able to talk about issues like DNR’s openly and on this site and as you and @Alfie have said it is actually a taking of control and making a positive decision in your personal circumstances. I am also so glad that you can speak openly with your daughter and that you have her support. I am also impressed that you have emailed your Pilgrim councillor saying your needs and that she said that it sounded a good plan. I find actually taking back even small feelings of control really helps me. Take care and we await hearing about the remainder of this week for you.
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Hi everyone, hope you are all doing ok. I have managed to make it through the week without any drama, which is quite an achievement for me, 56 th birthday tomorrow so am going to relax ay voo.
Best wishes
Alfie
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I hope you can enjoy some mischief on your birthday. Best wishes, Louise 
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Oh, Alfie, a week without drama sounds good to me. I hope you have a brilliant, fun birthday and I await hearing all about it.
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Happy belated birthday @Alfie!
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Hi everyone, latest update. Went to clinic yesterday to have my drug therapy and my consultant gave me the results of biopsy on throat tumour, turns out it was made up of myeloma cells some live and some dead, but it means the treatment is not working, so I have been put on a different regime.im disappointed obviously but I suspected it might be the case so am not shocked. The good news is that it comes in pill form so-no more injections and I will only have to attend clinic once a week for bloods.
Best wishes
Alfie
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Sorry to hear this Alfie, good that you don’t need injections. Here’s hoping the pills do the job.
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Hi Alfie, emotionally it must have been more than disappointing to hear that your current treatment regime was not working. Let’s hope this pill does it’s job. Look after yourself and please do keep sharing your fears, thoughts and feelings because we are all here to support you as well as you support others.
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Sorry to hear that your treatment wasn’t working, but weekly visits to clinic and pills give you more time to enjoy other things. Did you do anything on your birthday? Best wishes xx
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Dear Louise, I had a lovely day, my husband got me a ibeanie as a present. When I took it out of the box I had no idea what it was, I thought he’d bought me a door stop. Infact it’s a bean bag you rest your iPad on when it’s on your knee. Managed a short walk and some retail therapy.
Best wishes alfie
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Hi Alfie, that sounds like a great birthday to me.
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That was a very thoughtful and useful present. I have seen them advertised and thought about getting one to rest my book on as I find my wrists hurt when holding a book for a long time. So glad that you had a lovely day, and managed a walk with retail therapy (the best sort of therapy) Best wishes Louise xx
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Hi friends, latest update! I have completed my first week of new treatment, no major side effects.
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Hi Alfie, thanks so much for the update, I have this vision of your Hubby in a camouflaged hard hat as the high visibility hard hats are not recommended at such times. So blood tests on Tuesdays and then an appointment with the Doc in charge of palliative care this Thursday to make sure your current needs are being met or you need any extra care, what a support to have. It sounds as if you won the medical postcode lottery that is talked about in a priceless way. Take lots of special care. xx
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