Oh @Ruthiebabe1 it must be so tough for you in lockdown, my son doesn’t think to ring me either and his life goes on with work etc., I have heard others say that their boys sometimes just don’t think.
In lockdown I have been ringing him regularly and not waiting for him.
I also had a great consultant for years and I felt absolutely bereft and abandoned when she left,
When you are struggling we are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Take care and stay safe and keep telling us how you are.
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@Ruthiebabe1 hope things get better. I can’t really judge your sons as I’m very bad at ringing people. It isn’t thoughtlessness just carelessness on my part plus I’ve never really been a phone person. My family always ring me though. You could as @Nichola75 said let them know how you feel. You certainly shouldn’t suffer alone. Tough luck on the consultant. I had an amazing GP at the time I was diagnosed but was forced to move house last year which took me just outside their catchment area. My new GP’s are not terrible but there certainly isn’t the same attention to detail. My consultant is and always has been lousy even when I was in a hospital bed. Hoping for better things for you.
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Thanks for replying, ive a phonecall booked this friday so i will see who i get this time, my doctor has e-mailed my consultant twice asking for iron tranfusions for me but no reply as yet. As for my family i give up.
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Hi @Ruthiebabe1 really great to hear from you.
Sorry to hear that you are still battling over your iron transfusions.
Don’t forget that we are your forum family, so you are not alone and the Blood Cancer UK support line are only a phone call away, their details are above.
Are you venturing out at all yet?
Please let us know how the phone call goes on Friday.
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Hey @Ruthiebabe1
My iron levels are shocking but unfortunately I can’t get a ferinject as it contradicts my blood levels which are being heavily monitored. I wonder if this is the case for you. My haemotologist seems to be more on keeping my hct levels stabalised than counteracting the iron level.
Annoying really as I feel my fatigue and mood is based around my low iron levels. Hopefully my haemo appointment booked at the end of the month gives me an opportunity to discuss and get an update on things.
Maybe worth asking your consultant about this or even your gp, as your GP may not be aware of how your condition impacts your iron.
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Sirry I disappeared.
I feel better but had a difficult time again. The father my little girl was taking advantage of my situation and dependence but I had enough of him screaming and getting upset about everything. I left him in April and am trying to survive and find a job that adapts to school hours.
I feel like every time It gets better then something else happens…
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Oh @Noa you certainly have had a really tough time and probably for longer than I know.
I always personally think that one parent is so much more stable than two not getting on.
I realise it must have been so difficult for you financially, let alone emotionally and practically, and you say surviving, we are here for you so you are not alone and the Blood Cancer UK support line is also there for you.
I hope you can find a school friendly job soon, you deserve to as I really admire you, you are doing brilliantly and thanks so much for having the courage to post.
Please keep posting.
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It’s lovely to hear from you. It sounds like you have made the right decision and everything crossed that you get that job soon. As @Erica said, use the support line of you need to. Don’t be a stranger X
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Have you tried contacting schools/nurseries for a job? I know a few are in desperate need of casual staff for supervising or even invigilation. These jobs often aren’t widely advertised but no harm emailing your local schools?
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Had my phonecall and the consultant said she would arrange iron infusion but not heard anything for over a week. Usually i get a phonecall from the hospltal a couple of days later so hopefully will hear soon. Im still very tired and depressed so ive booked a few days away for Chtistmas i will not give up.
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Your right i am worse when my iron is low i must remember to tell my consultant on my next phone call thankyou for that advice.
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Just write everything down. I still do that as if I don’t I always come away forgetting to ask something X
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A few days away will be lovely for you all. You still sound quite down. Have you thought about getting some support firm yourself? I know counselling isn’t for everybody but it’s helped me. Remember the support line is there if you need it X
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Hi @Ruthiebabe1 thanks for updating us, it’s all waiting isn’t it.
Sorry to hear that you are very tired and depressed, hopefully the iron infusion will help but we are here for you, as is the Blood Cancer UK support line or I found counselling very useful, perhaps through Macmillan Cancer Support.
I love your spirit and idea of booking a few days away for Christmas, I think we all need something to look forward to after the last 20 mths.
Look after yourself and please keep posting.
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Have you heard from them yet @Ruthiebabe1? If not don’t be afraid to try giving them a call to see whether they can offer any information yet. Hope you’re doing ok!
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Still waiting for iron infusion, day and night sweats are terrible and not sleeping more than 2 hours . My legs ache and fidget about all the time im so fed up. Consultants letter to my doctor says ive none of these symptoms, she never even asks how i feel. I have no phone number to ring anyone. Every symptom i have she says i havent, just shows she doesnt listen to my doctor even. Thanks for listening.
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Hi @Ruthiebabe1. That must be very frustrating for you. I think it may be worth giving the support line a ring to talk through your next steps?
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Hello @Ruthiebabe1, it sounds like you are having a really tough time. If you would like to talk you can contact the Support Services Team Blood cancer support | Blood Cancer UK Take care Gemma
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Oh, @Ruthiebabe1 I think there is nothing worse than feeling I am not being listened to.
I also hate the feeling that the person wants to get onto their next appointment or even being talked down to gets me.
I would definitely follow @Nichola75 advice and perhaps also go back to your GP as your consultant isn’t even listening to your GP.
Let us know how you get on and look after yourself.
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I managed to talk to a nice receptionist and she asked my doctor to ring me. She did and i managed to tell her everything, she couldnt believe i was still waitng, so she rang the hospital and the haemotologist herself. Guess what!! im having my iron infusion tomorrow 24/11/2021 . Thankyou for your help everyone.
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