I couldn’t if I tried! There was just so much, I can’t replay the conversation - just snippets pop out and respectfully - I’m not going to share anything that may worry you ahead of time (especially as I didn’t record the convo - Doc said no, so I could accidentally mis-inform if I’ve misunderstood) and I don’t know what could trigger you. I have another education session next week online so that will help me check what actually went in.
How did you get on with the doc? Xx
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Hopefully got a positive outcome @Byrnebaby at out of hours service
Up here I’ve found them excellent the few times I accessed service
@Spangleystar big week for you? Hope you are doing ok kiddo 
@Duncan thanks Duncan , yes all sorted thankfully, it was a uti 
so mm scored it’s 1st infection!!Hope it’s the last! 
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Not too bad this week, it’s just the G CSF injections to contend with, next week is the Apheresis which makes me feel slightly green, so I won’t think on it 
How are you doing? Got whatever has been going on with your nethers under control? Been thinking of you xx
@Spangleystar is that 1 a day? Yes, try not to think on next week at the moment (says she who tries to know what’s happening a month in advance 
) yea nethers are nethers are nearly sorted, was a uti 
I was doubled over and crying on Friday night went I went to out of hours gp, was a trace of blood in urine, but the sntibyse to be working , thankfully x you doing ok?
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It’s 2 injections once a day for 4 days. I wish it could just be one (I’m not onboard with having to pierce my own skin once let alone twice in a day!) but they are pre loaded syringes and it’s weight based (I’m 64kg).
So glad you got that uti sorted and are getting more comfortable.,
Xx
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@Spangleystar did they not offer you the option of a district nurse to do your injections? I think I’m going to ask for that if it’s available, I hate the thought of doing it 
are they 2 at a time or different times in the day? Oh I’m not sorted! 12 days now and I’m still uncomfy , I dint know if it’s a flare of my lichen sclerosus, I feel like I’m sitting on ants 
Been on to oncology triage and they said gp, then immediately said ‘oh they’ll just send you back to us, we don’t know what to do?’ So I’m going to try and see if gp can refer me to gynaecologist, as it all need sorting , @Ceri_BloodCancerUK could you suggest any help please to move forward on this?
@Spangleystar have you come off the omzeprazole and apixaban? I’m due to stop after today’s doses and quite nervous about it! I’m still on Aciclovir and fluconazole and the yellow demon medicine (instead of co-trimoxazole x hope you are feeling ok and not too much bone pain x
No - the district nurse is only for housebound /immobile people around here.
My GP surgery is doing today and Monday and I’m going to an urgent care centre sat and sun that’s about 10 miles away. I just cannot intentionally pierce my own skin and it freaks my husband out too, the amazing Stem cell transplant CNS organised it all for me - I am so grateful, I was really anxious about it. Two injections make up one dose so you have them both at the same time.
Sorry to hear about your ongoing discomfort- I hope you can get some relief soon. Sounds awful xx
Why are you nervous about stopping these? Do you feel you are at risk of blood clots or stomach ulcers? Are you sedentary, or any other factors?
If you are worried, speak to your team because maybe there is a reason you shouldn’t stop them, but if you weren’t on them before the treatment and it just forms part of the induction program for you - why would you be concerned about stopping them? They are support medicines for the strong stuff you’re no longer taking once you’ve finished the last 21 day cycle. I was celebrating taking less, not worrying about it! This is a time to take a breath, you’ve finished induction - that’s amazing!!!
Have you had any support from NHS/Macmillan regarding anxiety? I have this lovely chap who rings me every few weeks, always with wisdom and ideas - he gave me a couple of links to new apps that Macmillan are making free to anyone with cancer. Daylight and Sleepio. Only just started to look at them, but they’re CBT based for anxiety, so may help you?
Xx
@Spangleystar im glad you got that sorted star 
, I’ll see what I can get sorted nearer the time, no one seems to be as forthcoming with help as I would have liked, do you go in for collection on Tuesday then? They told me it’s daily bloods until I have enough, but don’t feel that’s right somehow, another thing I’ll have to check, there’s just no back-up or support from either team, bit disappointed in that part of the trial, I only went for it as I thought it offered more support and clarity 
@Spangleystar i don’t know why i guess I’ve just got ‘used’ to having them there I have to come off the apixaban from today anyway as i have the BMB on Wednesday x no not had any counselling yet, I’m on a list at oir local maggies centre thoigh,
Daily bloods where? At your GP or hospital? Does sound a bit weird, did they give you the GCSF at that appointment- because if not there will be another one, closer where they’ll decide if you need 4 days or more and you’ll leave with the jabs to store in your fridge. You’ll likely get more certainty then. I’ve had my Apheresis date in the diary since Feb - I can’t see how they could work without some kind of planning for the resources etc. I’ve been told to pack an overnight bag just incase the counts are not high enough on Tues. Sincerely hope I don’t need it as hub’s birthday on Weds! But the fact that they wouldn’t even consider it until after 4 days of injections means the first 4 days for you would be a wasted trip for bloods?!
You’re in the Stem cell transplant part so not under the radar team or technically part of the trial right now, although mine were good at liaising before I had direct contacts at UCLH. Do you have a follow up appointment booked in yet? Xx
You can ring macmillan to get access to those apps - you won’t need an appointment or referral.
Good luck with your biopsy xx
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Well now you can chop again without fear of needing A&E
@Spangleystar 
I was never scared to chop 
it was hubby who banned me I guess we go back on them after AStem cell transplant? Are you just on the Aciclovir, fluconazole and co trim now?
Oh @Byrnebaby, I’m so sorry to read about how uncomfortable you are.
I’m going to tag our nurses, @BloodCancerUK_Nurses, partly because persistent discomfort like this is worth having their expert eyes on given everything you’re going through with your treatment, and partly because they may be able to help you think through how to push for the right referral.
When you do speak to your GP, it’s worth knowing about something called Jess’s Rule - an NHS patient safety initiative that requires GPs to review a case more thoroughly, consider a face-to-face appointment, and seek a second opinion when a patient has presented multiple times with the same unresolved symptoms. You’ve likely reached that threshold, and you shouldn’t have to live with this persistent pain and discomfort.
As always, you can also contact our lovely nurses directly via the support line and email: 0808 2080 888 or support@bloodcancer.org.uk.
Keep us updated?
Take care, Ceri
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@Spangleystar at the Christie but apparently all I’ve been told by consultant is subject to interpretation as he gives out wrong info and a lady from near me had to make a complaint about him, for misinformation and apparently she could write a book on his mistakes through the AStem cell transplant time, consultations, exactly the same with her hubby, wrong name, (he called me by my middle) and wrong diagnosis, told them 200milliin cells,when it’s 2 million, and I haven’t dared to ask anything else 
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@Ceri_BloodCancerUK thanks Ceri x is that rule just for England though as I’m in wales, not seen it anywhere here, just feel very uncomfortable and want it sorted before I get the high dose cyclophosamide
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