Hello, I have recently joined this group to hopefully find some like minded souls who want to care, share and lift the spirits of those of us who fall in a periodic heap due to this awful disease in it's various forms. I have been undergoing tests for about 6 months now. Firstly diagnosed with a solitary plasma cytoma on the base of my tongue. I have had 5 weeks of radiotherapy on that but dont know if it's been completely successful yet, appt on 2oth August. Meanwhile I've had para-proteins increasing in my blood which is an indication of myeloma, so I've had two bone marrow biopsies in the last 4 months, both of them were clear. I had a few lumps appear on my arms which the doctors seemed disinterested in. I had a PET scan this week to see if I had cancers elsewhere in my body and the only things that came up were my arms! It appears the lumps that the haemotologist told me were blood clots are possibly more plasma cytomas.....so more biopsies to see what's going. The doctors are perplexed, soft tissue myeloma is very uncommon apparently and by her own admission my haemotologist has no experience of it at all. I have looked on the internet and myeloma is always described as in the bone. Anyway, whilst the medical team scratch their heads I am slowly but surely going off mine, I am grief stricken at the loss of my life as I knew it. The inability to plan anything more than a few days in advance because of doctors appointments and more potential tests. I live in Karratha and my medical appointments are all in Perth so any visit to the doctor involves a 2hour flight each way and having to stay overnight. I know I am lucky in so many many ways and feel that some may read this and perceive me as a whinging princess but I'm not. I hope I'm not. I just am tired, so tired of the uncertainty, tired of trying to remain calm, optimistic, strong, unafraid. Tired of it all but yet knowing that I am only at the beginning of my battle with this diabolical condition. I can't talk like this to anyone. I am grateful for the opportunity to write down exactly how I feel without the fear of my family finding my journal and reading it. Living in a small town is not the friendly close knit community one would think, Karratha is a very transient population and I don't work so am out of the social loop and spend most of my days alone. I go to as many craft groups as I can to keep my mind from burying me alive. I normally have a great sense of humour but it's buried under a layer of shattered hopes and dreams at the moment. I really must try to dig it out soon. Well that's it for tonight. I hope I haven't put too many of you off by my ramblings, hopefully I'll get better at this blogging, the more I do it. Good night my friends my sleeping pill is claiming me. Sleep tight, mind the bed bugs don't bite
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Super Contributor
I certaimly don't see you as a whinging princess. We all have things to say but cannot say to others in our lives . Before I found online support ,I felt that the first opportunity to express myself fully was talking to someone from the Cancer Council on the phone ,prior to arranging counselling through them . The lady I spoke to listened for over an hour and responded in such a way that I felt huge relief. That was about 8 months after my diagnosis. I had said bits and pieces to different people but this was like getting it all off my chest at one time . It was overwhelmingly emotional too. I hope that the confusion regarding your arms is sorted out soon so that may be dealt with too. You have a lot going on at the same time . I'm sure you'll get what you need from this site . There are so many caring people here .
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Super Contributor
You certainly don't sound like a whinging princess to me. Just the logistics of what you have to do is exhausting, let alone anything else! The diagnostic process is really really hard and exhausting. It took 3 months for my husband to be diagnosed with NHL. During his chemo, I remember looking back and not being able to say which was worse. Hopefully, this will be some sort of screwed up encouragement for you? I absolutely understand about crafting as therapy, too. I've been a cross stitcher for years, and owe my current level of sanity to my stitching. Embrace it! There are many forms of craft that are particularly portable and practical for hosptial journeys/tests/admissions etc. www.stitchlinks.com is a website started by a British nurse who has researched the therepeutic benefits of stitching and knitting in particular. She has mainly looked at chronic illnesses such as depression, arthritis and fibromyalgia, but you might find it an encouraging read, anyway. I'm wishing you much better times in the future. love Emily
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New Contributor
I dont think you are a whinging princess, you just need to be able to say whatever you want to someone and not feel like you have to sugar coat everything you say so you wont offend people that is why I came here because you can do just that. I dont sew or do as much craft these days but I love my garden, and I have just added a veggie patch so I can eat a little better and it also keeps me sane. I hope all goes well for you on the 20th and as Silly says there are many caring people on this site so I hope you can get something from it. All the best.
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