I am due to have my final round of infusions and chemo tablets mid April and I have had a letter changing this to a telephone consultation. The letter has highlighted the fact I must go to my local hospital as usual to have a blood test.
I do understand that a meaningful consultation needs me to have this but my husband is adamant I don’t go out of isolation to visit the hospital as I am deemed High Risk as I am sure all CLL patients are.
I should be grateful for others views on this.
Hi. I hope this is helpful.
I had my bloods drawn at a local Quest lab ( wearing gloves and mask).
I called and asked the time they opened and I explained I have CLL.
I got there at 7 am , lab tech in mask and put on new gloves , sprayed seat and was very professional. No one else there.
There was a big sign on door stating “ if you have cold or cough do not enter and call to reschedule “ “ we do not do Corona testing “
The results sent to my NYC specialist and a video meeting was scheduled.
It was great !!!!
Good luck and best wishes .
PS my CLL doc looked exhausted . I am deeply grateful for the video appointment during such a horrendous time for so many.
Many thanks. I will try and make sure I am first appointment at the hospital
will they give you your last rounds of chemo if you don't
I am not sure how I get the last round of chemotherapy tablets yet. I need to ring to sort that out
Hi Cottondove - I understand your dilemma but would have thought your haematologist would need to review your blood results in order to proceed with your treatment. I have a telephone appointment with my consultant on 6th April but blood tests have been arranged at local GP a few days before in order that my Haematologist can make meaningful decisions. Best wishes but am sure you will need a blood test.
Shrink-i think she;s UK based. I don't know if NHS let's her do that
Yes I am UK based
Thanks. Got it !
I have the same NHS UK challenge telephone appointment 9 April, letter rearranging said isolate next 12 weeks then a contradiction also said get a blood test either at GP or hospital.
If I take the GP option the waiting room not much bigger than a living room, if I take the hospital route depending on time of day the waiting room could usually be packed although the letter also said they were implementing social distancing and maybe all the routine test non vulnerable subjects will not be present.
So a choice GP or hospital , the latter I am more familiar with but do I take the leap of faith early before things get even worse and a stronger lockdown happens or do I go just in time before the appointment. Last test was a month ago so a test a week early isnt going to make a lot of diffence in the result anyway. Regardless the blood test have to keep the appointment to ensure get a new Ibrutinib prescription, ordering and collecting month by month the next challenge.
We seem to be in same dilemma but know that we must have the blood test before the telephone consultation.
My husband has the same challenge. (Also on imbrutinib) We phoned the doctors about a blood test and they were very understanding. There are not using the waiting room anymore. Patients have to ring a bell and go in when appointment due. For his blood test they said wait it the car and nurse will come out and take him via a difference entrance. Still a worry but don't seem to have any choice but to take the best and safest option.
Sounds a very understanding surgery.
Hi i had my last consultation on 10th march. My Haematologist said i was to get my bloods taken by a nurse at my local GP surgery, to avoid me having to wait in the waiting room at hospital prior to him seeing me next. Best wishes.
Many thanks.....best wishes to you too.
Hi I've got my blood test at my local hospital (as GP surgery won't do hospital blood tests anymore) on the 8th April. My Appointment with my Heamatologist is on the 14th April at the main hospital but haven't received any information as yet to wether it will be by phone now. I am shielding for 12 week's so don't know if I should be going out to get my bloods done or not. It does get very confusing for everyone in our situation. I suppose I will end up contacting my specialist nurse to get advise if I don't hear anything by end of next week. It does seem to be the way with everything at the moment. To stop me dwelling on things I get on my exercise bike every morning and evening for about 20 minutes each time which relieves the stress and keeps me fit at the same time 😊🚴lol
Stay Safe everyone !
Teresa
Your situation sounds very like mine......I do a lot of gardening to keep sane. It’s never looked so good and no one to see it!
Hi Cottondove,
I know exactly how you feel I went to quest and they’re very professional shields on the face and mask and gloves
but the one thing she knows that I have a CLL and she said... the one thing is is people are going in there for a routine bloodwork for physical that’s a no-no!!
And yes we are high risk
Stay safe 🙏🙏😷
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