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How am I supposed to feel

How have you been doing over the past few weeks @Ells?

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Hi @Alice_BloodCancerUK I’ve been a bit up and down tbh… They’ve sent me to a sleep clinic I’m going tomorrow. They think I’ve got sleep apnoea. I don’t think I have I keep telling them I think it’s the meds I’m on but they’re not listening to me… Also have low iron atm which isn’t helping… So more meds I could start my own pharmacy :joy::joy:
Am trying really hard to stay positive. On the bright side my tooth is coming out Friday and I’ve been told my estimate for my back op is July if not July it’s definitely happening this year so some positive news for me so I’m happy but petrified at the same time… My platlets are up which I assume is down to the low iron so they’re keeping an eye on me and I’m having to tell my doctors to speak to haematology or they just won’t communicate as they think it’s OK…
How are you?
Thank you for asking how I’ve been. You noticed I’ve not been on here. I keep losing track of my days and before I know it my day is over… Xx

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Hi @Ells, I am glad that I am not the only one loosing track of the days, is it really May next week.
I also make plans for the day and either divert from one thing to another that was not in my plans or never achieve everything anyway.
Please do let us know how it goes at the sleep clinic, I have now learnt, after many years, that a consultation is a two way process and I need to say and ask everything on my mind and keep going till it makes sense to me. I have also found that it is my responsibility to remind clinicians about other relevant health and medications I might have.
Have you seen that advert on TV for having your prescriptions posted to you, mine would never go through a letterbox it comes in a big bag every month.
I am glad you are having you tooth out Friday, you have reminded me that I need to make an appointment it has been nearly 2 years now and I have 1/2 a tooth that needs attention.
Let’s hope you can get your back op sooner than later because the waiting is so scary.
Please do keep updating us on all your health issues and how you are feeling and doing,
We are here to support you.

Hi @Ells, it’s good to hear from and catch up on how things are going and I can se there is a lot going on. Good news about your op! Good communication is so important and it’s frustrating you have to chase that up! And yes - ask everything! Please keep us updated on how you are doing X

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Hi @Ells I hope the sleep clinic tomorrow is helpful, let us know how it goes if you feel up to it. It must feel frustrating not feeling like you’re being listened to.
Good to hear you’ve got an estimate date for your back op! What positive news, (though understandable you’re feeling anxious about it). Really hope it makes a huge difference for you, the back pain sounds really tough.
Hope getting your tooth out next Friday goes smoothly and I hope your partner is doing okay too?

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Hi @Erica I know it come round so quick especially as I don’t really do anything all day due to the pain. I try hard to achieve something extra on top of my daily chores (which is only 2 things) my partner is so good and does everything else but I don’t seem to be able to lately. Oh I’m learning when I spoke to the doctor regarding my iron being low and I said that one of us needs to tell haematology she just brushed it off… 5 minutes later she called me back telling me she’d spoken to them and I needed to go straight back for more bloods and not to wait until my usual appointment so clearly she’d had second thoughts :joy:
No I haven’t but I have been thinking more and more about it as my mother has hers posted to her… Not really sure how to go about it but I think it would be easier on us at the moment as sometimes I don’t feel able to go get them so they either sit there or save has to go and I feel aweful for putting on him.
Oh me too. I was at the dentist for my hygienist appointment and actually managed to get an appointment for my 6 month check up I say 6 month it’s been 18 months :joy:
I’m just happy in back on the list for my op after coming off it when they found oit I had blood cancer… At least I’m now in a place where I can have it done. I’m just bit a huge fan of hospitals which ironic as I seem to be there an aweful lot lately and the op itself I don’t want to go under the knife really but this is my last resort to try and ease the pain and get me so sort of life back or at least give me an idea of where I am so I can get on with my life now it’s been far too long coping and not knowing… I will try to remember to do that thank you I really appreciate all your support

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Hi @Nichola75
Yes it is. Great communication is the key. These doctors just don’t think at times and we have to tell them. Lucky I’m on the ball with this and my meds haven’t messed me up too much… I’m going in armed with all the info tomorrow at the sleep clinic and hopefully they’ll listen to me… I’m not one for speaking up especially as I’ve realised this afternoon it’s a group thing something I’m not good at but hey I’m going to have to try very hard to be forceful with my questions…
I will do thank you :blush:

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Hi@alice
I hope so to. Yes I will do. I’m aware they’re going to give me some equipment to use over night to monitor my sleep ither than that I’m not sure what to expect.
It is very frustrating feeling like I’m not being listened to but maybe now someone will listen over this part.
Yes it is great news over the op the lady I spoke to at the waiting list was ever so lovely she said they had only planned for April due to covid she estimated it for me but said it did depend on alot of things emergencies, slots etc. But she did say it would happen this year definitely so it is all positive a d she would like to speak to me more often as she’d had alot of grief off others… I cant understand why no one can control what’s happened it’s definitely not her fault no point in getting annoyed…
It’s been aweful and getting worse im in alot of pain medication and still in alot of pain but they can’t give me anything else. If I get a decent sleep I cope better but the pain is worse its a vicious circle.

Oh so do I then I won’t have to worry about that flairing up anymore.
My partner is doing OK he’s had his first covid jab which he had side effects from so I was looking after him for a few days… I’m so pleased hes finally had it he either got it through me registering him as my carer even though he’s unpaid or through families of but either way he’s had it… He also seems so much more chilled out now and tends to stop and sit when he gets a bit stressed or go for a walk which I’m pleased about… He’s determined not to go backwards… Thank you for asking :blush::blush: I hope you’re all. OK too

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Hi @Alice_BloodCancerUK @Erica & @Nichola75 just an update from yesterday really the sleep clinic got cancelled this morning. Their sleep technician called in sick so they’ll send me another appointment… So another wait for me to get to the bottom of it all… Never mind… That’s life 2 steps forward and 1 back :joy::joy:

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Hi @Ells, oh, no, I don’t believe it, how frustrating for you and I certainly know the 2 steps forward and 1 back.
Does anyone else know that feeling?

Hi @Erica just a bit especially as I spent last night and this morning filing my nails off ready to go… Just got them finished and the call came in… Just typical isnt it… Am now sitting putting them back on badly :joy::joy: but at least I have them ready to file off for the next Tim :grin::grin:

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I’m frustrated for you :confounded: bet your nails look beautiful!

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@Nichola75 thank you… They’re not the best… I’ve not long been doing them for myself as my nail lady is on maternity and I don’t want to find someone else so I thought as I get all my gel polishes from her for my toes why not have a go at actually doing my nails until she comes back… So that’s what I’ve been doing… I’m never going to be perfect I know that but I have nails and they will do until she returns then I’ll just use the stuff to practice on my toes and I do mums nails so I’ve got a free model :joy::joy: xx I am frustrated and was really irritated when the lady called this morning as I had literally just finished it had taken me so long to do this and I was about to start getting ready to go there but it’s no one’s fault so I was polite as usual and thanked her and now getting on with my day :blush::blush::hugs:

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Glad to hear your partner got his first jab! and it’s really good to hear he’s developing some coping mechanisms for when he gets stressed like going for a walk. It sounds like you’re such a great support to each other.
Sorry your sleep clinic got cancelled, hope you don’t have to wait too long for another appointment!

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Hi @Alice_BloodCancerUK
Omg so am I… I was on the phone to the doctors getting him put on as my next of kin as that was wrong then adding him as my carer as he wasn’t which they weren’t going to do until I mentioned he nearly had a breakdown so I wanted to make sure he had any help he needed… Then of course the news that families of the vulnerable could have their jabs came through and I told him and said ibe way or another you’re gonna get it… Next thing I know i was looking after him with his side effects :rofl::rofl:
Im looking forward to going for walks with him again, he walks so fast he’s gone for ages I think he’s walking a marathon or something :joy::joy: we do try and we always say we’re a team.
Thank you Alice I am not so annoyed about it all now just tired from it being a long morning but hey ho no doubt I’ll drop off before dinner is ready… I hope it comes through soon I want my health to be sorted by the time I’ve had my back op so we both know where we are with things we’ve spent the last 4 years not really knowing and we’re getting to the stage now where we’re finally going to know how bad it’s going to be after this op… So having the sleep sorted out before then would be good :blush::blush::blush: hope you’re doing good :blush::blush::blush: Xx

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Oh, @Ells so you took your frustration and irritation out on your nails, good idea.
I was actually trained as a Revlon nail artist, but this was before false nails, let alone gel ones, far more artistic.
You certainly don’t have to do them perfectly, you will be your greatest critic.
I am glad to hear that your mum and you both benefit from your practising too.
I know the frustration and irritation, but then on the phone being so polite to the person themselves and even thanking them.
Here is a very good place to say how you really felt and what you really wanted to say.
I also have another half who used to walk quicker than me or was it just that his legs were quite a bit longer. If we went out for a walk he would stride away and then have a rest waiting for me and when I reached him he was off again so I never got a rest.
Let’s hope you get your sleep and back sorted soon.

@Erica I sure did :blush:. Oh wow that is so cool. I’ve been getting my nails done for years so I’ve picked up how you do them but actually doing it yourself is way harder than you think… I’m so not happy with how they’ve turned out this time but then it’s my first time doing it from scratch so I really shouldn’t be too hard on myself and you’re right we are our biggest critics… I’ve been doing our toes for a while now with the gel polish but started on the last lockdown with the other bit builder gel or whatever it’s called as I knew I wouldn’t see my nail lady until after she came back from maternity and she sells the stuff so gives me advice which is lovely of her…
I’ve know it’s not the person’s on the fault they’re just doing they’re job. I’ve been that person and recieved the abuse they get so I know how it feels. I’ve been brought up to treat people how you would like to be treated yourself.
Me and dave are the same height I’ve no idea how he walks so quick I’ve never been able to keep up :joy::joy: once my back got bad he would walk out with me and then I’d have to say off you go I cant do this anymore he stride off and I’d just be shuffling up the path he’d be a dot in the distance :joy: I’d go home now I just don’t go out I walk around the garden he says I’m going to wear the path out :joy:
Thank you I hope so too in so looking forward to knowing where I stand at last we can finally see the light at the end of that tunnel :blush: Xx

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Hi all I wanted to give you an update. I spoke to my haemotolgist last week and we had a really good chat about everything. He was absolutely lovely. I must say it wasn’t my usual doctor but he listened to me. My platelets have gone up a little this time but we do think it’s down to my iron being borderline and me being put on folic acid. So he putting me on iron tablets. He’s also writing to my doctor and telling them to look at 1 of my meds as he agrees with me that it’s probably one of the reasons I keep dropping off to sleep the side effects from it is loss of consciousness and low consciousness. My other meds do cause sleep issues too but this one we think is a big issue for me… So finally someone who is listening regarding my sleep. Its not going to help my pain any if they take me off it but it will sort the sleep thing out… He also said he’ll speak to me in 3 months and hopefully by then I’ll have a date for my back op and my iron levels will be better… I certainly feel much happier I’m being listened to.
I hope everyone is doing good. I’m still having my struggles I’ve had a rough weekend with pain and lack of sleep but made up for the sleep last night I think I slept for around 9 hours in the end with a wake up at 5.30 to take my meds… I’m staying more on the positive side of things now I still have negative thoughts but push them to one side with thoughts of what’s going to happen next I think I’m concentrating on one thing at a time right now and atm it’s my back op next after that I’ll go back to trying to accept my blood cancer. I’ve not been thinking about it so much lately because I don’t know what I’m going to do. I don’t want to go out shopping still I need to deal with all of that again with my anxiety issue something else I don’t want to think about :rofl::rofl::rofl:…so I’m rambling as usual :joy::joy: I hope you’re all good today xx

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That’s good news @Ells, doesn’t it make a difference when you feel listened to and let’s hope the changes to your meds etc, help you and in 3 mths you have some news on your back op.
Anxious thoughts and feelings are so natural although when they rule your life then that is when we need to make changes or seek help.
Take care of yourself and please keep posting and the support line is also there for you.
Also love the emojis and I also ramble a lot.

Hi @Erica it sure does make a difference :grinning_face_with_smiling_eyes: they’ve always said they can’t change my meds so it may be a case i either put up with things as they are or I come off this one and put up with more pain who knows what will happen next…
I’ve had counselling before when I had to give up work because of my back issues and I know i should get the paperwork out again and start going through it. I also know this time it’s different as I don’t even want to go shopping with my partner which is worse than before but it’s something I will need to work on with him… It may be something I need to go back for more help if I can’t sort it myself but again we’ll see… My counseller have me alot of help before and information so hopefully I can do this myself… Thank you for your support it is muchly appreciated. And thank you for reminding me of the helpline. I may use it at some point… The emojis cheer me up :rofl::rofl: it makes me laugh sometimes at the suggestions when I typing… I’m glad I’m not the only one who rambles… And I forgot to mention I’ve also had my 2nd covid jab last Thursday so that’s something else crossed off my list :grin::grin::grin:… Xx

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