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Last week I was declared neutropenic for the first time since my SCT… conversely my HGB was 11.8, the highest for 4 years.
I was sent home with 2 GCSF injections to administer on Thursday and Friday with instructions to come back on Monday (12pm) to see if my Neutrofils had improved. I have a consultation next Monday followed by Cycle 3 of Bendamustine on Tuesday… as long as my bloods can stand it. I don't think that my consultant will allow treatment to continue if my neutrofils are below a certain count, so it is of vital importance that my Neuts improve.
I went into the Day-Case unit yesterday for bloods and a follow up with our lead nurse… hopefully with some good news. I got into the unit at 12.10pm after a short wait, had my bloods taken and was back in the waiting area by 12.25. There was no sign of either of the lead nurses (we usually see them flitting about the place) and Janet checked the clinic area and the lead nurses office but everything was in darkness after a busy morning. The staff in the Day-Case had no idea where we were to go next… their part was to take blood and get it processed, they assumed that our lead nurse Jenny would come and see us as soon as she was free.
At 2.30, feeling stiff and aching I told the staff nurse that I was going home but she asked me to wait while she bleeped the lead nurses… she came to see us and said that Jenny was in a meeting but I would be added to the roster for the Day-Case Doctor to see me and go through the results. I watched as the 2 Doctors on duty rushed from job to job, obviously snowed under and at 3.30pm I left a message for Jenny to ring us at home and left the building.
I have waited longer at Day-Case but that had been for treatment when they were short-staffed and so understandable but I have never walked out before. Jenny and Sarah, our lead nurses are excellent and we have a good relationship with both… but I wasn't feeling at my best and a 3 hour wait on reception area chairs really got to me (I didn't know how to sit with any degree of comfort and Janet had to keep on waking me as I slid down the chair). I have had experience of waiting to see a Doctor in Day-Case and in terms of priority discussing blood test results would be low on the list.
So far no word so If I don't hear from the hospital I will ring in this afternoon and try to speak to one of the lead nurses… I know I could have waited for a Doctor to see me but I also know that that could have been a long time and I had reached the point where waiting had become a physical challenge that I felt I did not deserve.
I am feeling guilty about walking out but on the other hand I feel that a 3 hour wait, with no explanation as to the reason why was unacceptable.
First time for everything I suppose.
Dai.
Well I for one don't blame you Dai. I'd have done the same, especially on such a rare sunny day. Infact I think I'd have gone at the 1.5 hour mark…
I always think it's ironic, but life's literally too short for us with MM to waste time in any sort of waiting room!
🙂
Hi Dai,
Phil has often thought about leaving due to the excessive waiting time, especially as they seem to have chosen the most uncomfortable chairs possible for the reception area – bearing in mind most of the patients waiting there have bone damage you would think the chairs would be selected with more care! 🙂 We often find that waiting for a doctor is the worst as there is normally only one or at the most two on the Day Unit at any one time and there are too many patients waiting to see them. Hopefully you were able to get in touch with someone this afternoon and they werwe able to give you good news about your blood results.
Megan
Hi Dai
When they were discussing the serious weaknesses of the NHS recently, I thought we had some stories we could tell them where little things would have meant such a lot! I also thought of some of the experiences you have had. How do we get things to improve? If the motor industry can get its cars under construction through a Plant with some kind of order and efficiency, why can't the NHS find some way to make sure patients don't fall through a hole when they are waiting! Surely someone out there has the savy!! We can but hope, but in the meantime we carry on suffering the painful results of long waits.
Keep strong Dai. I do hope you are able to go ahead with the next treatment.
Love Mavis x
Hello ,
I love to all people . I have been reading your story . I know you have take a lots of problem . But don't worry .
…………….
Thanks.
Thank you all for your replies and your support.
I finally got through to the senior lead nurse today who told me that my lead nurse (Jenny) was off for the rest of the week but she offered to go through my bloods results:
HGB 10.8 (from 11.8 but still good)
WBC 3.0 (from 3.4)
Neuts 0.8 (from 0,77)
So very little movement with my Neutrofils and I am still neutropenic but Sarah told me not to panic… she said the Bendamustine was still in my system and working so suppressed bloods readings were to be expected. She said that there was still a week to go before my next consult (with treatment to follow the next day… if all is well) and there is every chance that my readings will start to improve on their own as the Bendamustine weakens.
My concern lies in my consultant allowing treatment to continue with such low Neuts but Sarah informed me that they will allow treatment to continue as long as my Neuts are at 1.0 or more… and seeing as my Neuts were 0.8 on Monday there is every chance that they will improve up to and past the 1.0 marker.
So feeling a bit better but the proof of the pudding etc… so roll on Monday.
Taliking of puddings… Janet is baking tomorrow (DexDay tm so I need a treat) and on the menu, amongst others, is her special 'Death By Chocolate' and she uses real death. Mmmmm.;-)
Dai.
Hi Dai,
So pleased results were kind of stable. The wait was really awful.
At my second last visit in hospital I was told things would be prepared beforehand so it would be faster – this was in Inverness – and yet, I also had to wait for three hours. The nurses were nice though and I was given a sandwich.
Because of my stage in the dex cycle, I had brought a pencil and sketch pad and I sat there drawing!
Last visit I was totally pooped, and even though I only waited for an hour and a half I kept falling asleep and sliding down the chair….. I had no-one accompanying me.
Maybe we need a companion to set up a tent or hammock… If someone took photos it might highlight waiting times….
Best,
Eva
Apart from a short period when the Beacon Centre was getting established and my hospital notes got lost between departments, in 2009, I rarely have to wait for my appointments. Probably 30 mins sometimes and once I even went in early, having said that my appointments have been to see the Consultant only and not for any form of treatment. If they are running late they generally put a notice up.
Little side story: I was sitting in M&S café yesterday when a couple of ladies asked if they could take the empty seats beside me. They were discussing their friend who had just died of a Brain Tumour. As I had a niece who had just died of a brain tumour I entered the conversation. The discussion led on and blow me if one of them did not have another friend who had Myeloma, for 12 years! It is a small world.
Kindest regards ? vasbyte
David
p.s. M&S bacon rolls are great 😎
Dai
Pleased that your treatment is working. The waiting time you had was horrid and I hope you continue to keep well.
Ian is now in rehab in Falkirk. He was sent last Friday but on Sunday had a temperature of 38 so the gp thought he should go bakc to FVH. We had to wait 4 hours on an ambulance and then another 2hours for a doctor to see him. i finally got to bed at 4am we were both shattered. Fortunatley it was a urine infection and he was transferred back to Falkirk.
Take care
Maureen
Hi Dai
Well looks like your doing Ok
Am sure you will be Spot on for your next lot of treatment on Monday. But My fingers will be crossed just the same.
Tom Onwards and Fingers crossed Upwards 😀
Hi Dai,
Sorry to hear of the waiting, we too have to wait and now expect it. We are gobsmacked if we are even within half and hour of appointment. That said Colin has elected for no maintenance treatment, due to wanting quality of life so our next appointment is in two months time!
You made me laugh about Janet's baking, that was hilarious and hope you enjoyed it and it compensated the dex effect 🙂
Hope next time you get the treatment and hope you don't have to wait too long for it!
Best wishes
Vicki and Colin xxx
Our hospital (Leeds) is just the same ,3hrs usually thats what we allow,we have bloods taken then 3hrs on average before seeing the Doc, I'm smoldering so dont have treatment and I can honestly say if he says OK come back in 3 months I'm happy.Ted
Hello Dai
Popped in to see how everyone's doing, sorry to hear of the long wait in DC it's happened to us and when your feeling tired and unable to sit on those horrible chairs, kevs nearly walked a couple of times I even blamed the chairs for my sciatica.
Anyway Dai glad you got to talk to someone in the end and good luck with your next round of treatment.
Keep well and don't eat too much cake sounds yummy! Janet
Love liz & kev xx
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