Hi @Fullofbeans and @Sassy12345, @Fullofbeans what an absolutely brilliant response to @Sassy12345
I also have itchy little shingles blighters.
I contracted shingles when we moved home in 2003, I blamed it on what personally stresses me. It now pops up somewhere on my body if I get personally stressed or overdo it emotionally, medically practically or physically.
Fear of relapse is a part of my life and really pops up before and during medical tests and appointments. Music helps me.
Look after yourselves both of you and be kind to yourselves.
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Hi Erica
Oh I’m sorry to hear you have shingles too - I hope they clear up quickly. It’s horrible isn’t it? I was half-expecting to have this outbreak, because I came off the Aciclovir, which suppresses it, last month. But it’s nastier than I was expecting. I will bear in mind that stress of various sorts can trigger an episode- thank you.
Here’s to hoping our itchy little blighters only make a fleeting visit!
Fullofbeans X
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I suppose I was lucky as I was vaccinated against shingles last year but I don’t envy anyone that’s had them. Hope it clears up soon.
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I’m very newly diagnosed and have escaped to Greece because I need some me time before treatment starts (next Monday). I have 3 daughters and am trying to be mega strong for them all of them are reacting in different ways. My mum is not talking to me as if it’s been a conscious decision but my sister has been fab. My partner has run for the hills which I don’t necessarily blame him. I decided to post because I saw the comment about bucket lists . I’m very grateful that my girls want to ensure that I have done the things that make me happy but at this moment I just want to be a positive pants I’m still not sure what the road ahead looks like but surely it’s got to be one step at a time
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Hi @Lou1 Sometimes you have to do what you need to do and Greece seems good to me.
You describe so clearly how each person in your life reacts and I think that is echoed on this forum, It is life changing news for you and all around you and everyone is floundering.
I am also a positive great big ‘Bridget Jones’ mask and pants person but my experience is that the elastic breaks when I least expect it. It is OK to feel fearful, anxious etc, you must be in shock and in my experience that takes a long to start to comes to terms with.
I think you have a very good philosophy of one step at a time.
We are here for you, The Blood Cancer UK website has lots of reliable information and if you would like to talk to someone the Support Line number is at the top of each page.
Look after yourself and please let us know how your treatment appointment goes.
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Hi @Lou1 We’re sorry to hear about your diagnosis. Sounds like it was such a shock for you and your family. As the wonderful forum members have stated everyone reacts different to their diagnosis and they is no right way. Take each day at a time. We are always here for you if you want to talk to someone impartial about how you are feeling and what you are going through or just to be put things in perspective, here are all the ways you can reach us: Blood cancer information and support by phone and email | Blood Cancer UK.
Look after yourself. Lauran
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Hi @Lou1. I echo everything @Erica says. I’m really glad you posted so we can support and share experiences.
One day at a time is all you can do. Take the time away to look after yourself but remember, you don’t have to be strong all off the time X
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Hi…I have recently been diagnosed with ‘blood cancer’…Myeloma…It came as a complete shock to me…being fit and healthy etc…My physio found a lump in my shoulder treatment when giving me treatment…I went to my GP and a scan revealed a tumour and other blood count irregularities…As yet waiting on a treatment plan…
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Hi @Mike1welcome to the forum and what a complete shock as you say ,I can imagine you are all over
the place waiting for a treatment plan.Meantime BCUK support line can listen and advise and there are downloads with info on Myeloma ,and recently been diagnosed ,also
Myeloma UK has a support line and downloads .I am so sorry to hear of your diagnosis but you have come to a good place to hear of others on the forum with similar experiences and its good that the lump was found by the physio and taken from there by the GP.I have MGUS which can lead to Myeloma but I am not anywhere near where you are but the shock and experiences of being newly diagnosed is the same for everyone I think .I am on "watch and wait "with blood tests every 12 weeks .I do wish you all the very best and keep posting ,there are lots of threads to follow on here .I hope you wont have too long to wait .
Bannanacake
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Thank you for your kind words
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Hi @Mike1 I do hope you’re doing okay - a warm welcome to this online community. In case they’re useful at all at any point, we have an information booklet on myeloma, here, and a booklet for people newly diagnosed with blood cancer, here - Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop. Please do give us a call or an email on the support line if you want to talk anything through with us.
Alice
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Hi @Mike1 what a shock your diagnosis must have been for you and I found that shock takes a long time to subside.
I am really glad that your physio was so on the ball.
Please let us know when you have your next appointment, you are part of our forum family now and I hope that you will find that we really understand.
Look after yourself.
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Hi @Mike1,
It is good to have you with us. I wish you a smooth ride, may you adjust to the powerful medications you may be taking and your myeloma scores start to move in the right direction. Starting as a fit ( and positive) person is so important and if you can add patience and self awareness of managing your emotions into the mix I think you will come out of this as a stronger person. It all sounds easy eh? I know you can do it.
GeandmaJo
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Hi @Lou1
I am so glad that you have been able to take a break away. I found that my grandchildren were a wonderful distraction when I was first diagnosed. Even though it was from a distance because my three children decided that, with six grandchildren at a young age (and the way they love to climb all over you with their runny noses) we should love each other from a distance. Internet chats were great. My lovely superspreaders were safer for me that way.
I am sorry that you have not had the family support which you might have hoped for but it sounds as if you are finding your support closer to home with your children. I hope your Mum is chatting to her friends and that they may modify her approach. Give her time.
Now you will have those lovely holiday memories to carry you through your next treatment. Good luck.
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Lou1
How are you doing? Thinking of you.
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Hi Sassy 12345, in some area’s it is normal apparently, to have to wait inordinately long periods of time.
However as I stressed earlier, keep at them, and civilly, politely, and robustly (If needed) demand answers to what is bothering you.
Remember, you are just a number and name to many off these people, they are just too busy, or not bothered enough to spend the time on you that you need. Harsh may be, but that is my experience for what it’s worth.
I hope you resolve this to your satisfaction, you are certainly in the right place, with this community of ours, they will see you through I’m sure of that.
All the best
Ron
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