Good morning all, and a very happy August Bank Holiday to everyone.
I was foolish enough to suffer a heart attack back in September 2017 and then diagnosed with Essential thrombocythemia (ET) in March of 2018 and have been on Pegasys ever since.
Last weeks face to face appointment was changed in the week to a telephone consultation where my blood results showed that my platelet count had come down to a more acceptable, but still a little high, level.
However my consultant has put me on a course of B12 Injections, one every two days for the next two weeks, with a review after that. I collected the vials of B12 from the hospital pharmacy on Sunday lunchtime, but without any hypodermic needles.
Now then, it was Sunday yesterday, and Bank Holiday Monday today, so I can’t speak with the Haematology Department, nor can I speak with my Doctors Practice, and I am back to work tomorrow.
Any suggestions as to what/where I go from here would be appreciated.
Thank you all, take care and stay safe.
And, as always, keep on smiling.
Hello @Jimbo165. Sorry you have the added frustrations regarding this. All I can add is that I have been on vitB12 injections for several years now. They have always been administered to me at the GP surgery so I wonder whether you will have to take the vials to a nurse where they will provide the needles? It’s just a thought because I haven’t heard of these injections being self-administered. I wish you well. Word of warning - whilst the liquid is going in it does sting a bit but my arm never hurts afterwards. Not like with the Covid jabs where you can have an aching arm for a few days. Warm wishes Willow x
Hi @Jimbo165 ,
You could call 111 or go to a drop in centre if you have one nearby?? Guessing you don’t inject yourself? Very brave if you do
Hi @Jimbo165, I do hope you’re doing okay. It’s usually a nurse or a doctor that would administer the B12 injections (Having your hydroxocobalamin injection - NHS (www.nhs.uk)). Perhaps it’s worth giving your team or GP a call tomorrow morning to clarify what process you are to follow? The pharmacy may also be able to advise you.
Good afternoon Willow, and thank you for your kind response, especially on a Bank Holiday.
I think my frustrations over this matter started with the face to face appointment being changed, and at such short notice, coupled with a lack of information as to the administration of the vitB12 injections. When you add a Sunday and a Bank Holiday in to that mix to cause a delay in the start of the treatment…it just becomes annoying and worrying as well as adding to stress levels. Sadly, it is what it is and I probably need to adjust my own expectations somewhat.
Whilst my heart attack wasn’t unexpected, my Dad had 9 heart attacks over a 4 month period, followed by a Cardiac Arrest, then a Quadruple by-pass operation, all of that in the early 1980’s, then a massive stroke in the mid 1980’s which slowly took him over the following 7 years, my Essential thrombocythemia (ET) diagnosis was a bit of a shock. It seems that males in my family, on the whole, don’t enjoy long lives! I’ve been the only male in the family since the 1st of January 2017. So having treatment for Pernicious Anaemia dropped on me, via a telephone call, and then not being able to start it straight away seems a little bit cruel.
Thank you for the “heads up” about the actual event discomfort though, I shall have to see if I can somewhere else whilst being jabbed!!
Take care and stay safe please.
Good afternoon @AllyBally, and thank you for your kind message.
Nope, fear not, I’m one big scaredy-cat when it comes to big/long needles; I still feel uncomfortable giving myself my Pegasys injections, and they are only short needles!
Take care and stay safe.
Good afternoon @TanyaBloodCancerUK, and thank you for your kind reply.
I’ll try the hospital team first tomorrow as I’ve got more chance of getting through to them on the phone than I have of breaching the systems at my Doctors Practice!
It is quite reassuring that you and your colleagues are “on hand” to give advice, reassurance and support to the Forum members, and I thank you for that.
Take care and stay safe.
I hope you get things sorted when you call the surgery tomorrow - it must be very very frustrating!
Please let us know how you get on
@Nichola75 I certainly will do. I’m hoping I’ll get the chance to make contact with one or the other medical facility in the morning.
Remember to be kind to yourself as well staying safe.
Hi @Jimbo165 I cannot better the responses you have already had.
It is so unfortunate that some others have also been left with medical dilemmas over the bank holiday weekend.
However haematology wards are obviously open all the time.
Please do let us know how you get on and take care.
Good evening @Erica, and thank you for your kind response.
Hope that all at Blood Cancer UK have had a good Bank Holiday Weekend.
Take care all, and stay safe.
Good evening @AllyBally, @Erica, @Nichola75, @TanyaBloodCancerUK and @Willow I hope you’ve all had a good day.
I managed to make contact with the Haematology Nurse at Leicester Royal Infirmary this morning and, bless her, she called me back this afternoon with some good progress to report.
She has been able to speak with my Consultant who has done a “Letter of Consent” for my Doctors Practice, allowing them to do the injections.
I now await some contact from the Practice to try and arrange the days and times for the treatment to begin, starting (fingers crossed!!) on Monday of next week.
Thank you all for your help and support.
Keep smiling and be kind to yourselves.
Great news! @Jimbo165 ,
Hopefully your treatment will start asap. I’m a fellow Leicester Royal Infirmary attendee as well. Small world!
Let us know how you get on. You take good care of yourself as well.
Great news @Jimbo165 although if you do not hear from your surgery you might want to contact them later in the week.
Your haematology nurse is a good contact for any concerns or questions you might have.
Please do let us know how you get on and best wishes to you.
I’m so pleased this all got sorted out for you. The nurse really came through for you didn’t she!
Hopefully that’s put your mind at rest.
Take good care of yourself won’t you
Good to hear @Jimbo165, thank you for updating us and hope it goes smoothly from here.
Good evening all, and thank you for your continuing support. Sadly my Doctors practice have “dropped the ball” so far on this matter. I couldn’t get through to them by phone today so called in on my way home from work. The receptionist, after establishing that I was in fact me!, glibly told me that “oh yes, we’ve had the e-mail from the hospital, but we haven’t opened it yet, or passed it on to the doctor”! Slightly frustrating to say the least. A senior receptionist came to out from a back office and has stated that she will look in to this tomorrow, deal with it, and get back to me tomorrow.
I’m still hopeful of starting the new intense treatment fortnight on Monday, but I can’t help feeling that it shouldn’t be this difficult!
I also can’t afford to upset or offend any of the staff there, not with one of their colleagues about to start sticking great big needles in me on a regular basis!
As always, stay safe, take care and be kind to yourselves.
Sometimes they need a gentle reminder @Jimbo165 and hopefully that’s what you have given them
Hi @Jimbo165 please do let know what happens tomorrow.
Fingers and toes crossed for you, perhaps it’s pleasantly assertive.
Evening all, hope everyone is well.
The senior receptionist called me back this morning, as promised, and I now have a full schedule for my 6 jabs, starting next Monday and finishing 12 days later.
I will be easy to spot as I shall be the one that looks like I’ve been in a fight with a porcupine, and lost!
Take care all, stay safe, and remember to be kind to yourselves.