@ilivesunshine I have the letter too, not sure what is going wrong, but something is
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@Fullofbeans Thank you very much, I have friends in the village who can do things for me, so itās not a problem,
I am tempted to Drive to Derriford, stand in the main walkway by the cafe, take my mask off, declare my covid status, and demand the antiviral I have been told Iām due.
At least I might get some attention
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At least you havenāt lost your sense of humour, @heatherthomas! Yes, Iād be very tempted to do the same!
Ah, glad youāve got lots of people around to help, should you need it. Everything crossed you wonāt though.
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@Fullofbeans Thank you
@Alice_BloodCancerUK
update,
I e-mailed the haematology dept, titled it āurgentā with a few other words, promising to visit Derriford and do exactly what I said above, unless they could come up with an alternative solution.
Vicky called me, I now have an appointment 1.30pm tomorrow - itās pushing it a bit fine on the timeline, but itās done
I presume now, I have something on my records labelling me as a ādifficult customerā
I am now going to sit in the garden, with a cuppa, in the sun, with a blanket around me, and do some of the puzzles in the paper ā¦ and not have to keep my ears open for the phoneā¦
I also phoned my mum - before the appointment confirmation - who used to be a matron, at Derriford, - she said to me - ā¦ What have I told you Heather, you get better in spite of hospitals, not because of them, itās probably best you donāt have the appointment anyway - youād only pick something else up, Iām sure youāre better off without it - good old mum!
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Oh @heatherthomas words completely fail me, I feel concerned as all my side of the family are in Cornwall.
Hang in there and spoil yourself
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Hi @Heatherthomas,
Really appreciate you keeping us updated & i hope you have managed some time in the sunshine. May i ask is Vicky from the CMDU? Just want to clarify what your appointment tomorrow is for and follow up on any success from the CMDU.
Best Wishes, Lauran
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@BloodCancerUK-SupportTeam @Fullofbeans
I think I did something daft, they said this morning, if I wanted tablets instead they could get them to me today, instead of infusion tomorrow, if I could confirm I was not on HRT, so I agreed.
They said the pharmacy would phone me, and arrange delivery
ā¦no-ones phoned, and the number for Vicky is on ansaphone
so now currently have no appointment, and no tablets - have just phoned Birch ward - who will call me back
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Hi @heatherthomas, It does sound like your having a lot of back & forth so please donāt worry. Hopefully someone will return your call soon. Is Vicky someone within the CMDU or is she your nurse specialist?
Take Care, Lauran
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@BCUK_SupportTeam
Iām not sure, she called me this morning, to arrange the infusion appointment, which we agreed, then said she could double check with the doctor to see if I could have tablets sent today instead.
She called me back, after checking with the doctors there was a suitable tablet form, then said they would be couriered to me today, and the pharmacy would be in touch with me this afternoon, to check delivery - and cancelled the 1.30 appointment. I know the pharmacy close at 5.30pm
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Hi @heatherthomas,
Okay that makes sense thank you so much for clarifying that. We would suggest if you have a return number for the CMDU to try that, which you have already likely tried, and also it might be worthwhile trying 111 or gain your haem team to to escalate this if you do not hear back.
Also for our own information heather- what day of symptoms now are you? If you have the chance would you be so kind to keep us updated. Again we are so sorry your going through such a difficulty in accessing the treatment- i hope Your okay.
Thanks, Lauran
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@BloodCancerUK-SupportTeam
Yeah, they have just been delivered,
not sure why I didnāt get any phone call first, but it doesnāt matter,
I have phoned Birch ward to let them know I have them
And just taken the 3 evening ones Yeah!!!
Thank you for your help
symptoms started Saturday, but didnāt really think much of them at the time, tested Monday and was +ve, and logged through 119 -that was the start
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Thank you,
And I thought I had my ducks in a row with this, with the 119 phone log,
and the phone number the hospital gave me for just this occasion,
and 111 as a backup.
I have no idea why this is happening, nothing seems to work without a massive effort on my part, and then itās late.
I didnāt want my doctor involved too, as most of the time, as heās not involved with my ET, thatās Derriford, Plymouth, and I had someone who was saying everything was fine, and it would be 1 more phone call - which is the really annoying bit.
definitely done now, and drinking hot orange barley water to celebrate - not my normal tipple, but I can taste it.
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I think that would be my reaction too given all you have had to go through
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What an awful few days @heatherthomas. But hallelujah - you finally got the tablets! If its any consolation, these things often go wrong for me too. Had a right old faff getting the rest of a prescription last week - it also involved a lot of calls. At least you can relax a bit now. Hope you feel better very soon.
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Good Morning @heatherthomas ,
That is a great relief and thank goodness for your perseverance. I do hope you are feeling okay and hope you continue to do so over the coming days.
Take Care, Lauran
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@Fullofbeans
I am āon the upā thank you
My temp has come back down to 37 - which is much better, my throat is not so bad, and my breathing is easier - which was the most worrying thing for me.
I still feel a bit rough, and I ache just walking to the kitchen to get a cup of tea, but I sat outside in the sun for an hour at lunchtime, out of the wind, doing the puzzles from the paper, and it was lovely.
If I do nothing, Iām fine - so no cleaning for me - what a shame 
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Hi @heatherthomas I am glad that you after the week you had that you are āon the upā.
I donāt give advice but I think it is a very good idea if you do not do any housework as I find that I feel I am crawling back āon the upā of my well, I then overdo it and go crashing back down the well and it takes so long to clamber back up again.
Puzzles are very therapeutic and allegedly good for the brain.
Look after yourself and be kind to yourself
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