Hi Praxedes you really show how your fears and emotions have changed over the a very short period of time and then to test positive for the virus. It sounds as if you have been very lucky but perhaps taking care of yourself is really important as your body has gone through a lot emotionally and physically and might take time to build itself up again. Take care and stay safe.
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Hi Erica,
Sure thing, I really take extreme care. Lovely to to e-meet you. Praxedes x
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Hi @SuBloodcancerUK,
Yes, when you think life is already quite hard, there is always the chance that it can be even worse!
Luckily, my symptoms are like the ones of a flu, so feeling more tired than usual, otherwise copying with it well. Praxedes X
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@praxedes i’m so glad to hear you are doing well! and it sounds like having a positive mind set has really helped you?
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Hi Praxedes,
I was diagnosed with ALL PH+ in Feb 2019. I had a couple of rounds of chemo then a stem cell transplant last July.
I was really releived to read that you have had cornoavirus but it was mild! That will deffinitely put your mind at ease while all this is going on. I did say to my family I actually wish I could just get it and see what happens so I could hopefuly become immune.
I have 3 young boys so this idea that you have to keep away from everyone inside your home and eat alone in your bedroom is a bit unrealistic!
So glad to hear you have your mum with you during this time.
Wish you all the best for the rest of your treatment xx
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Hi,
So far it’s been good homeschooling but we are only on week 2 (took them out of school early). I think it’s going to be a long few months though haha . I’m finding it hard not being able to do anything to help at this time just stuck at home in hiding. I do go out in my garden and the wooded area out my back as I need it and so do our boys. How have you been Erica? X
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It’s good to read that we are all support each other.
I’ve not watched tv for a week, I’m was getting “ virus news overload”
I did watch a program on iPlayer about Eel Pie Island.
Some of you may be old Traditional jazz fans.
I certainly was as a teen in the 60s, I’m in 2 parts of the film, only the back of my head though. I am 75 now with no hair, my friend from those far off days phoned me this morning as he recognised me.
Glory days being a teenager in the 60s, I drove my mother crazy as I was in the CND as well and was arrested at several sit down demonstrations. My mother was none too pleased with the local police calling at 3am to confirm my address.
I’ve got my 69th monthly cycle of chemotherapy this coming week which is draining, but I consider myself very lucky it’s still keeping AML from developing.
Azacitidine doesn’t work for everyone unfortunately, during the course of my treatment I’ve lost many friends I’d made in the clinic.
Keep safe everyone
Best wishes and good luck to us all
Anthony
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Hi, as I live in a flat I do not have a garden or widows at a height where I can stick my head out but so far I am very happy in my flat and have everything I need, You will laugh but I got so excited when Amazon delivered 2 new pilates dvd’s today. I am in a routine and have not gone near my long standing ‘to do’ list. I washed my outside clothes as I won’t be needing them for 12 weeks. I decided better of my thought not to do any housework as nobody would be coming to the flat whilst I am in isolation. I am not succumbing to the temptation of having a biccy with every cuppa. I refuse to get hooked on Homes under the Hammer and have my special music playing. I am contacting family and friends more. I am doing my pilates and osteoporosis exercises and so far time is flying by. Oh, and I am rambling more!!! Stay safe and keep posting.
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Oh, Anthony the Eel Pie Island days of our youth, I wish I had known you were actually on the programme, albeit in the background. Am I right in saying Dave Gilmour of Pink Floyd lives on the island now? I had a boyfriend who was into pirate radio and got raided by the Police, when we broke up he ran away from home to join Radio Caroline, got sea sick and was sent home. My father had apoplexy at my ever shortening hem lines. think I remember Radio Luxemburg did not come on till 7pm on a Sunday evening, but I loved the music on Radio London and Caroline best. It is my favourite music now and my Walkman has lots on it. Now I love Gold Radio. I missed out on 2 out of the drugs, sxx and rock and roll in the 60’s. I am sure I am rambling more in isolation, Stay safe.
Hi Erica,
Yes believe Gilmour does live on the island, if you have access to iPlayer you should watch the program.
I also watched 2 programs this week on iPlayer.
It’s one was a series of clips of artists on Ready Steady Go. Were you around to see that? Keith Fordyce was a presenter at the start, then Cathy McGowan who was far more with it. The second was about the people involved in the making of the show, Ann Nightingale one of the presenters hasn’t aged at all well nor has Chris Farlow. The program was finally overtaken in the ratings by Top Of The Pops.
I used to listen to Radio Luxembourg, terrible reception.
When I worked for Pinnacle Records in artist promotion I was heavily involved with the DJs Peter Powell Tony prince etc.
Pinnacle were promoting a boyband Flintlock at the time.
They did get a lower chart entry and had a large following. I was at their tv show being filmed at Thames tv with Pauline Quirk and I was told not to leave the boys in the band alone with the producer as he was iffy !!
I sold fan merchandise at several gigs, one at the Apollo in Victoria was terrific. The teen hysteria was very catching, fainting and screaming, I was in the balcony with the company staff and I even felt tempted to throw myself off the balcony.
At the do afterwards I got chatting with Long John Baldry. Best white blues singer ever.
I could name drop loads of people who are very well known who I got to meet and talk to.
You think you ramble, I could bore for England.
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I must apologise for my ramble just now. Which has nothing to do with blood cancer.
I live alone and dwell mostly on past memories which I hold dear.
All of us oldies and not so old relive our past memories as we have more behind us in these uncertain times and all us cancer suffers face uncertainty about our futures.
We all have a story to tell and I was rather indulging myself rather in my last post.
I’m very sorry.
Anthony
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Hello, I am new to the forum so hello everyone and I hope you are doing ok in these weird days.
I have smouldering myeloma. I was diagnosed in jan 2016 and I am fortunate that my position has remained relatively stable since then and I remain on watch and wait. So I feel a lot of different emotions: some days I feel like a fraud: compared to others I am in a very good situation. Some days I feel guilty. Some days I forget about it. And some days I worry all day!
I am finding the current situation hard, like everyone. I think I am right to isolate but then I wonder if I am being too rigid. My white blood cells are ok at present and my nurse describes my immune system as robust. So again I am very lucky.
I’ve stayed at home for two weeks because despite the above it feels like the right thing to do for me and other people. My wife is keen to go to our allotment today and while I know it is low risk I do worry.
Anyway all I wanted to say was that I know I am in a good position really and I wanted to send love and best wishes to all out there. I cannot imagine how it is for those in more challenging places than me and I hope you know you are not alone thanks to Bloodwise and others.
Mark
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Don’t apologise for your ramble, I am not going to apologise from mine, this is the place to do so and I think we all need it. I remember every single person you mention. Chris Farlow, I absolutely loved his and the Stones version of Out of Time, I am singing it as I type this. My father turned the TV off every time the Stones came on, coming to think about it he spent more time turning the TV off than on. We weren’t even allowed to watch Dr Who. His one LP was by Winifred Attwell. I also loved P P Arnold’s The first cut is the Deepest, Rod Stewart and others have covered it and it got me through many an emotional trauma. I managed to jam a matchstick in my red Dansette record player and it would just play it again and again. We had a wind up record player before that. As for Long John Baldry, yes, fantastic and also did so much with people like promoting Rod Stewart and with Elton John ‘The Someone’ in the poignant Someone Saved my life tonight. I’m singing in my head again. ‘Music is my first love’.
Hi Mark, a great big welcome to our community forum, sorry @Blackhat and I are going down Memory Lane. Yes, as you can tell we are isolating and also as you say better safe better than sorry. Some of us have had the NHS letter to isolate, some haven’t. I think we all have these conflicting thoughts and feelings and here is the safe place to share them as we all understand each other, no matter what our blood cancer might be, as no others can. Bloodwise are giving out reliable advice and also do several useful factseets and there is also the wonderful Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will try to get back to you within one working day. Please keep letting us know how you are and how you are feeling, we are here to support each other. Take care.
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Dear Erica,
That’s by John Miles, I love that song.
I remember seeing the Stones in a London club in the 60s before they took off. Entry price 2/6.
Bill Wyman lived above a tailors shop in Penge, used to bump into him in the high st, right miserable bloke.
My sister had a Dansette, I had a guitar and used to mime to Elvis, Chuck Berry etc, I rested my ciggy on it and burnt a large hole in its case.
She was livid.
You should get Spotify on your pc thousands of good music from the past, it’s free if you don’t mind the adverts or £ 10 per month without.
Best wishes
Anthony
Ps how do I put my picture against my posts?
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@md67 Hi Mark, wishing you a very warm welcome to our online community 
As you say, Mark, these are very challenging times. But as @Erica said, please feel free to talk through on the forum any worries or concerns you have. Our current guidelines around self-isolation would also apply to people living with smouldering myeloma, though we also do recognise there can be some individual variation between people, which is why we really encourage people to also speak to their healthcare team for more specific advice to their individual circumstances. It’s good to hear you were able to speak to your nurse, were you able to discuss with them any concerns around self-isolation?
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Thank you Erica, very kind of you. I’ve not been able to speak to the haematology team about things for a few days. But their view has been that’s it’s a measured risk to go out to the allotment. It’s a balance between risk and my mental health! Struggling today so thank you very much for your message
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Hi Su
Thanks also for your message. I’m going to try the nurse again tomorrow. I’ve found the Bloodwise advice has been so helpful. Such a support in these times.
I hope you are well and staying safe. Stay well.
Mark
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