no problem at all @md67 Mark, and I’m so pleased to hear you found our advice helpful! I hope you are able to get through to the nurse tomorrow, do keep us posted. You too Mark, stay safe 
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Hey Erica,
I had day 1 of my 69th monthly cycle of Azacitidine today.
I was rather anxious this time because of the virus threat to us all. I’ve never felt like that since I first started chemotherapy in January 2015.
I worried needlessly
We had all been told not to arrive too early for our appointments.
My appointments this week are all at 1 pm. I booked in 15 mins before, I always used to set out far earlier as the traffic going into Canterbury in the mornings is horrendous and parking at the hospital a nightmare.
Very few cars on the road or in the hospital car park.
Most of the non essential clinics have been cancelled.
Treatment went very smoothly, the nurses wonderful as always.
I’ve asked my daughter, who has been getting my shopping to include boxes of chocolates for them as a thank you.
I’ll take them in before this cycle ends.
Regarding the Stones my favourite has always been
“This will be the last time”
Andrew loog Oldham their first manager was in the same class as me at St Marylebone Grammar.
He got expelled before I did.
Best wishes
Anthony
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Hi Anthony, Gosh what a surreal appointment experience. What a lovely idea to take well deserved chocolates in to the so wonderful NHS staff before your cycle ends.
Oh, I love your claim to fame ‘he got expelled before I did’, my school days were certainly not the happiest days of my life, I was the ‘Good Little Girl’ that had a near perfect attendance rate and always did my homework on time and I left school with hardly any qualifications. I couldn’t even be a secretary or nurse which were the 2 avenues we were supposed to aspire to, my career path has been through who I knew not what I knew. Happy Days.
How are you feeling after this first treatment?
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Erica,
Thanks for asking, I feel fine thanks, but a side effect of Azacitidine is sleep disturbances so it will be rough nights this week, I’m used to it though. In the scheme of things it’s no big deal.
I was the opposite at school, there was a lot of serious bullying there, but I realised if you made people laugh they didn’t hit you or stick your head down the toilet and pull the chain, the later was done to me several times.
At least six of us would lock ourselves in 1 cubicle and smoke at break.
I’ve still got a picture of me at school camp at age 11 or 12 with Andrew Oldham in it. That was posted on school site on Friends Reunited.
I was banned from going in the following years fo bad behaviour, not punishment but a treat for me.
My mother used to despair about end of term reports.
Head master wrote at the bottom of most of them “Anthony has done no work to speak of this term“
I got 1% in maths exam.
Eventually my mother was called to see the head master who said “ we wish you to remove Anthony from this prestigious school as is he a bad influence on his contemporaries”
Freedom for me, I started work at an advertising agency the next week, first of many jobs.
My only ambition in life was hedonistic 
Best wishes
Anthony
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Hi Mark @md67 how are you doing today? Did you manage to talk things through with the nurse? Hope you’re doing OK.
Alice
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Not too good - I need the views of other participants.
My issues are about ‘seclusion’ and the implications of serious illness, old age and the right to the best medical treatment. Today I have been told 3 times by a physiotherapist that my illness and well being are of no importance any longer to health professionals and at my time of life, I should accept that ‘seclusion’ in practice means that I will, and should, be shunned by all health workers.
I am 80, have AML [Acute Myeloid Leukaemia] and have been doing pretty well. My understanding of the young professional is that Covid19 takes precedence over everything. What happens eg if I were to develop another infection? Please die with a minimum of fuss, preferably on the ground floor so that the body snatchers do not cause industrial injuries. If The Virus strikes is the honourable thing to down a - Kawakasi - no that’s the bike -, Kamikaze cocktail as the final sacrifice, leaving a bed free? I beg forgiveness if you find me offensive. I know of no other way of dealing with these dark times and underlying dark issues.
Do we need reminding of the building blocks of the eugenics policies of the totalitarian state: apart from genetics, great importance is paid to age, disability, serious illness and the powerlessness that these encompass? We are seriously ill, some of us are disabled as a consequence of our cancers, and I am old. This time I was floored, felt devalued, devoid of my right to life; next time ……
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Oh, @Midnight-sun, your post made me feel so sad, you are only 80 yrs young, what do you want to be when you grow up? personally I felt so angry with your physio. I can tell how you have written this post that the words of your physio have been going round and round in your head like a washing machine producing so many thoughts of your obviously very active brain. I bet any of our wonderful NHS workers would be so upset to read your post. I am so, so glad you have written your post to us, your friends on this community forum. I realise I have got the TV on in the background and it is just continual coronavirus news, mostly fear and supposition. I have now turned it off. I shall put my favourite music on when I post this reply. As I think I said to you originally I love your name @Midnight-sun and I think you have so much to share and give, especially with us on this forum, which obviously also has a lot of posts about the virus at the moment. If you fancy a talk our wonderful support line are available on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk, the Samaritans are available 24/7 Helpline: 116 123, if you have a medical problem ring 111 and the Age UK Helpline: 0800 055 6112. Please keep posting as we are all here to support and share with each other always. Stay safe.
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@Midnight-sun I am so sorry that you’re feeling this way. It sounds really tough and also, very distressing for you. I understand that this was discussed with you by your physiotherapist. Have you discussed your worries and concerns with another member of your treatment team, such as your consultant or your clinical nurse specialist? They may be able to provide you with more tailored and comprehensive insight around how the treatment/management of your condition may be affected by the current Coronavirus situation, and may be able to provide you with some reassurance that your condition and how you are managing it, is still very important to your treatment team.
By ‘seclusion’ I wonder if you mean ‘shielding’? Shielding for 12 weeks is something that every person with blood cancer, whether currently in treatment or not, has been advised to do. This is because they may have a compromised immune system and therefore be at a higher risk of serious illness from Coronavirus. This advice to stay home and away from other people does not apply to any cancer treatment you need to have. Continuing your cancer treatment is a priority and we advise people to talk to their healthcare team if they have an upcoming appointment to find out what they should do.
This guidance around shielding is in place to minimise your chances of becoming infected by coronavirus and ensures you stay as safe as you can at this time. It does not mean you’re not able to speak to friends and family over the phone if this is something you do regularly anyway. Do you have any loved ones around you at all?
I also want to reassure you @Midnightsun, that the NHS have insisted that should anyone who has been advised to shield in order to protect themselves, contract Coronavirus, they would be given the same standard treatment pathway as anyone else, and would not be any less of a priority based on your blood cancer diagnosis alone, and other factors are taken into account when making these kinds of decisions should they arise. Again I’d really encourage you to speak to your treatment team for more personalised information around this and to talk through any concerns you might have.
In case it’s of any help, we have some general information on our website about how Coronavirus may affect blood cancer treatments - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/coronavirus-blood-cancer/.
Please do remember we are only a phone call or an email away if you would like to talk this through further, or if there is anything we can do to support you.
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If you review the legislation and the policy documentation you will find that the term ’seclusion’ was originally used but was later revised for the reasons I’m trying to explore. You might find it interesting to learn that in some European countries (Sweden, Germany) the constitution forbids the state from socially isolate individuals in their own homes. It is for me sad that when a personal experience is used to illustrate a wider issue, the author is offered counselling. Is that one reason why disadvantaged groups are often collectively so powerless?