I posted this last night but it seems to have been deleted.
started Abemaciclib 14 days ago. Made my 2 weekly blood test appointments 2 weeks ago first one due 9.15 this morning. Surgery rang me at 4.18 last night to say they don’t have the form from the hospital so will have to cancel my blood test. I tried ringing the hospital but only got answerphones as they finish at 4. I asked gp surgery if I could delay my appointment til later in the morning while I get in touch with the hospital first thing they said no it’s fully booked and to rebook but not anything til the week after next. Without knowing what my white blood cells are doing I’m considering coming off the drug. I’m so stressed and upset that I’ve not slept all night. My first blood test is messed up and I don’t know what to do. Any advice please ?
Hi Mibby. This is awful, you do not need this sort of stress. Phone the hospital first thing and see what they say. If it was me I would have said to surgery that you need to speak to your GP as it is vital that you have your bloods checked. Sometimes it is a receptionist passing on a message and they are just following procedures ie no appointments until week after next. Did the person you spoke to know the significance of the blood test and that you have breast cancer? I do feel in this instance that your surgery should try and fit you in today. Maybe when you speak to hospital they might contact your surgery. If they have no appointments for blood tests, there is nothing to stop a GP doing it. Does your surgery do same day GP appointments. Ours will usually get GP or Nurse Practitioner to phone back same day. Fingers crossed that you get this sorted.
Hi Hun. What a start. Ring hospital let the know what the gp surgery is saying. If hospital close enough you may be able to go back there and have the bloods done. Good luck x
The hospital is only 40 minutes away so I’m hoping they will agree to take my bloods. I have my first zodalonic acid infusion on Wednesday so I need to know all is well with my bloods before I have that. Many thanks. X
I told her I’ve just started a cancer drug and need the blood test if my white blood cells are too low it may have to stop or be reduced and she just repeated we have to cancel because we don’t know what to test for. All the go appointments are given out first thing and I can’t waste time on the phone bring number 29 in the queue as I need to contact the hispital first thing.
I’ve been so upset that I didn’t sleep but cried most of the night last night. If they contacted me sooner I could have got hold of the hospital. I’m considering making a formal complaint to the practise manager. Thank you for your support, it’s definitely not a good start.
I’m sorry the gp is so unsympathetic and not pro active. Hopefully you will have gotten hold of your breast care team now but if not please carry on taking the drugs they’ve given you, don’t stop unless they tell you too. The blood tests are for monitoring and while they are important, a delay of a few days here and there is very unlikely to be detrimental to you, especially if generally you are feeling well. I don’t take this drug but I do take methotrexate regularly and also have to have my bloods taken regularly. I remember in the beginning how stressful it was being monitored and being on a drug that needs monitoring but after a while you’ll be amazed at how it all becomes second nature and you start not even checking the results. The hospital WILL make sure you get the tests you need, on occasions through my treatment they rang the gp themselves when they weren’t helpful to me. Hope you get sorted fast xx
Thank you so much for your reassuring words. I’ve managed to contact the oncology care assistant and she’s been brilliant at getting things sorted. She had spoken to my oncologist who wants me to come in on Monday so I’m now awaiting the appointment time. I have to say that I’m disgusted at the lack of empathy from the go surgery. I thought their job was to reassure patients, especially those with a serious illness, rather than cause them so much stress and anxiety.
Good I’m really pleased, this stuff is really scary. My gp and associated staff have often really me off too. I do have a close friend who is a gp though and once when I was ranting about mine, she was sympathetic but also countered with, you have to remember that everyone who calls is stressed or unwell or worried and wants prioritising and at a surgery with thousands of patients there’ll be a lot of patients just as sick as you. As hard as it is to accept, that is true I guess, but like you I wish they could just adopt a better manner or tone when dealing with us! Take care and get some sleep xx
Hi Mibby
My hospital had a drop in phlebotomy clinic every day so I used that as I felt there was less chance of mistakes being made ..also results on hospital records in double quick time .
Ask your oncologist if you could do this but I would also ask Gp to highlight on your notes the importance of bloods .
I was lucky in that After I had my infusions the routine was that nurses would print my next form so I always had one ready .If I then used it because of infection I could request another to be posted out .
hope things go well after this
Very good tips thank you. I will check for drop in and if I ever get to see a gp I will ask for a blood tests important flag but won’t hold my breath. I’ve lost all faith in my gp practise now. X
I really think that is appalling service from your surgery and so glad to hear that the hospital are sorting it. If it was me I would not make a formal complaint as you will need their support in the future. Maybe contact the Practice Manager and just explain what an awful predicament it put you in and how upset it left you.
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