Hello my name is Barry my partner was recently diagnosed with Acute myeloid leukaemia (AML) we see the doctor this afternoon as they are giving her a treatment plan she is 81 years young and obviously feeling very vulnerable
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Hello @Barington Welcome to the forum.
Sorry to hear that your partner recently diagnosed with Acute myeloid leukaemia (AML).
I think we all have that feeling of being vulnerable when first diagnosed.
You will find that people on the forum are really helpful and supportive.
Hopefully getting great support from your clinical team too.
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Hi @Barington and a big welcome to the forum.
I think we all understand that feeling of vulnerability following a diagnosis and how hard it can be for the family as well.
Itās such a lot for you to process and often, there are lots of tests and waiting for results following the initial diagnosis which can be really hard.
What are the next steps for your wife? Have they talked things through with you?
The support line is amazing if you or your wife need to talk anything through.
This is one place where there are people who understand and can be there to support you both.
Sending you lots of special wishes x
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Hi, diagnosed with Chronic lymphocytic leukaemia (CLL) in November 2023, have been on way u & wait ever since.
Had quite a stressful year last year as my partner was waiting for a hip replacement & had 3 cancellations before eventually having the operation.
on my last bloods me Lymphocytes and white blood cell had nearly doubled. I did wonder if all the stress could of caused this.
I was transferred back to hematology at the hospital.
My last appointment in January I was checked over for my lymph nodes & various medical questions asked.
My lymph nodes were ok and I hadnāt had any other symptoms.
They took 7 different bloods.
The doctor advised there was a new treatment coming out in a couple of months and she went on to say she thought It would be inevitable that I would need treatment.
I have been knocked for 6 ever since.
My partner and I have a holiday that has been put back 3 years (due to his health issues) we need to either cancel or pay for this by the middle of March.
Iām beside myself not knowing what to do about the holiday and as my appointment is after the middle of March.
Would anyone know if I could put back My treatment until after my holiday, especially as I donāt feel poorly or have any noticeable symptoms please?
Thank you for listening.
Hi @bishopsfarewell Welcome to the forum.
My advice would be to take advice from your clinical team.
I remember having holiday plans for my wifeās 60th birthday.
When got diagnosis we just had to cancel everything. Still havenāt done anything beyond a couple of nights away and pretty close to home.
It sounds like itās been really tough for you and your husband.
Fingers crossed 
that you get the okay to take advice holiday
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I agree with @DuncanB
I know itās diffcult because you have probably been really looking forward to the holiday. However, Itās really important to follow the advice of your team and plan from there.
Keep us updated
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Hi I am Adel, I just turned 36 in January. I havnt been diagnosed as of yet, but they are testing, I recently had an xray last week and a ct scan on Sunday. My bloods have been abnormal for around a year and doctors have been very puzzled by this. And I have had a range of other symptoms that I wouldnāt usually have pop up this last year too, I am currently in a lot of pain with my hip and lower back, im just praying I get my test results soon as it feels like the investigation has been going on a life time, as the days go on the more symptoms im having to report to heath professionals.
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Hi @Robbo90 and welcome to the forum.
So many of us on the forum understand the frustration of waiting for results. It can sometimes feel like forever, especially when you are in pain and want answers.
It sounds as though your team have everything in hand and are being very thorough in their investigations.
Itās so important to keep a diary of symptoms and youāre right to report all new symptoms, or the worsening of others, to your medical team.
I hope you donāt have to wait to much longer. Please keep us updated on how you get on.
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You are right it is so tough waiting, hopefully it wont be much longer now.
Thank you for the support and I will give an update once I know more.
Thank you again
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Hello there @Robbo90, welcome to the forum. Iām so sorry to read of how long youāve been living with those symptoms and especially feeling pain. Sounds horrible, have any painkillers been suggested by your doctors? Do let them know how bad it feels.
Totally agree with @Nichola75, waiting for results can be its own sort of frustration. Keeping note of different symptoms and when you feel them is a great idea, Iād say. Youāll be able to sort of chart changes along the way, which Iāve personally found helpful.
Something I recently found out about is Jessās Rule, which asks GP teams to āreflect, review and rethinkā if a patient presents three times with the same or escalating symptoms. If that sounds like you then hereās further information: NHS England Ā» Jessās Rule: Three strikes and we rethink
Do please let us know how it goes Adel. If youād like to talk it through with the lovely Blood Cancer UK nurses then they can be called free on 0808 2080 888.
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Hi @Robbo90 and welcome to the forum.
Hopefully you will get test results soon and can in conjunction with your clinical team work out next steps.
I think we all can relate to those times when waiting for results. It definitely sounds like youāre having a tough time at present.
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Thank you everyone for the replies, I am currently waiting in the doctors waiting room to see a nurse practitioner regarding the pain, im hoping they will be able to give me some good painkillers whilst I wait for the results of my test. I will keep you updated x
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Update:
I spoke to the nurse practitioner, she seems to think its muscular back pain and told me to take ibuprofen and paracetamol its just strange because I havnt done anything strenuous or lifted anything heavy etc as I have been too fatigued and lethargic to do much to be honest. I cant help but feel its linked to the ongoing symptoms I have been experiencing in the last year, as I have been getting more and more aches and pains more often lately, but I may be paranoid because I guess once you get told you are going through testing for potential cancers it makes you worry about every symptom you experience more than you usually would. Im hoping and praying this wait for results will be over soon. As I do feel so desperate for answers right now. My children know I have been poorly and the docs dont know whats wrong, they dont know im being tested for cancer but im sure they are still worried about the mystery illness their mum is going through
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Another update, I had my xray and CT scan results come back, both clear. And this may sound a really odd thing to say but it feels kind of bittersweet that they were clear, I obviously feel that its great that they were clear, but on the other hand the fact they were clear still means I still dont have answers. My next appointments are not until the 21st April where I attend the haematology department in the specialist cancer hospital in my area. I have no idea what I will be told at this appointment, or what they will suggest when I get there, or if they will take any tests of any kind. All the mystery and not knowing is becoming a real emotional rollercoaster for me. I hope there will be clarity soon
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Thanks for the further update @Robbo90
Good news on test results even if slightly bittersweet.
Hopefully can enjoy life until your April appointment
Definitely a rollercoaster and Iām sure lots of us will agree with that.
Take care
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Thank you for the support, yes I am going to try put it to the back of my mind, and just get on with things until my appointment. Take things one step at a time until I know for sure what is going on
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Hello again @Robbo90, just wanted to concur with @DuncanB about those great x-ray and CT test results youāve shared. They will have ruled out so many potential issues that it really is good news Iād say. Know what you mean about it feeling bittersweet though, maybe focus on the sweet part?!
Speaking of sweetness, when I get good test results I like to treat myself like my mum used to after Iād gone to the doctor as a child! Usually a fancy coffee and doughnut, but it helps me to develop positive associations during these sorts of stressful times.
Youāve got quite a while until your haematology appointment. May I suggest keeping note of any symptoms new or old and maybe how youāre feeling along the way. I find that when Iām feeling low or anxious that my physical symptoms can seem worse, even if they might not have worsened. Reading back my notes can help take the edge off the worries somewhat.
Of course the forum is here for you while you await your appointment. I wonder if the appointment being in April might suggest thereās nothing too serious awaiting you? Iād imagine youād be seen sooner if any sort of treatment needed to start, so that might be reassuring.
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Thank you for that. And your right i need to see the positive in this because it could have been lot worse. I think its the need to have control that is making me see that having clear results is a negative thing, not having answers make me feel im not in control of the situation if that makes sense. I might not be able to control this, but I guess I can control how I spend my time leading up to April where fingers crossed I will get to know more. Im sure everyone who goes through this has similar feelings of anxiety and worry with all the not knowing for sure. Iv been abit of a hermit, and been consumed by questions in my head, and analysing every pain, every dizziness and every doctors facial expressions and body language in appointments, im driving myself mad, so this next month or so, im going to get out in nature abit, breath the fresh air, and do things that I love. Having this community to talk to is proving to be very helpful, and I am so grateful for that
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Aw I love this @Robbo90, so glad youāre finding the forum so helpful! A great big yes to getting out in nature, my favourite place to be, as I literally feel awe being out in the wild and I hope you feel some awesomeness being inspired too.
I also know what you mean about feeling a need for some sort of control during times like this, when our minds donāt necessarily make it any easier for us with all the questioning and a sense of lacking control. I find hiking helps quieten that, being out in nature makes my problems seem smaller and less consequential, maybe you do too. Besides, Iād rather be a hermit outdoors than indoors!
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Great strategy @Robbo90
One of my mantras is focus on what you can influence and let go what you canāt control.
And in reality thereās a lot you canāt control
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