Can anyone advise??

  • 9 replies
  • 19 subscribers
  • 672 views

Hi All,

I've been unwell for several years and am becoming increasingly unwell as the more recent weeks and months pass. I am currently waiting for the results of a blood cytometry test and it's taking weeks. I was urgently referred to Haematology on the 11th of March and I've still got no answers. My NHS app record shows that results will be uploaded on April 24th. What does this mean? 

I'm feeling so unwell and I'm also struggling mentally and emotionally. I also have bipolar and ADHD but I can't get any talking therapy (it's a long and irritating story). I honestly don't know how to cope right now as I can barely focus. I'm off work for 2 more days - due back this Wednesday - but I honestly don't know if I can handle it. At the same time I'm scared of losing my job and/or having very little money coming in. I feel absolutely trapped. Can anyone tell me what you did while you were waiting on test results to confirm a cancer diagnosis???

  • Hi Butterflywine, Have you tried the helpline as they can pass you onto our MacMIllan Buddy Service and you will get telephone or Community Support to talk things through generally not the main Cancer issue they also have access to possible therapy support as you mention you have a job obtaining this
    If you call the number below and explain your problem and ask for Buddy Support they will assess you

    Hope all comes right soon with the results

    Take care

    Tony

    Community Champion Badge

    We will move mountains to help people with cancer live life as fully as they can.
    We'll do whatever it takes. For information, support or just someone to talk to,

    call 0808 808 00 00 or visit www.macmillan.org.uk

    Onwards and UpwardsWink Laryngectomy and OC survivor 

    Lead Volunteer for Hampshire MacMillan Buddy Service

  • Hello   A warm welcome to the online Community.

    Waiting for test results is never nice but it's all part and parcel of the Cancer journey. I see you have already joined the CLL forum where you will find plenty of help and advice.

    When I was waiting for results and indeed my formal diagnosis I tried to carry on with life as normal, in fact I threw myself into work as this took my mind of what I knew was to be a life changing meeting - it worked and I got plenty of work done as I work for myself!!

    For that little bit of extra help may I suggest you call our support line on 0808 808 00 00 (8am to 8pm 7 days a week) They are a great bunch and will be able to help.

    I do hope when you get your results they are bringing you good news.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Thank you Tony. I will give the number a call and explain what is going on. 

    Sam

  • Thanks Brian!

    I'll be giving the support line a call. My concern over work is the type of work I do - I work in the pensions industry as an Actuarial Analyst and need to be totally on the ball. The pain and exhaustion that I have right now is just making things too difficult and without a diagnosis I can't get any further treatment from my GP. 

    I can only hope for good news and that will then lead me down a different path of investigation regarding what's wrong with me. 

    Sam

  • Hello  Sam

    I fully understand where you are coming from. I work mostly on the Prostate Cancer forum (yes I have Prostate Cancer - full story available by clicking on my avatar). When any of my "flock" are awaiting results or appointments I suggest to them a polite telephone call to your team asking for a progress update/results/an earlier appointment sometimes produces results and if you mention anxiety this often helps.

    As for worries about employment we do have a work support advisor and if things become difficult there is plenty of free advice, here's the link

     Ask a Work Support Adviser 

    although I hope it's a link you never have to use.

    If i can do anything else for you please don't hesitate to contact me.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hi again  …… it’s 5 days since we last talked……. so no signs of your Heamatology appointment yet….. with the time that has passed I would be checking with your GP to make sure you have not fallen through the NHS  system.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Again Mike!

    I have seen a message on my NHS app from Haematology to my GP saying that they've responded (to my GP) about the referral. I've called my surgery and they have no idea what I'm talking about so that's just made me even more anxious! 

    Apparently I have to wait until the 24th but it's literally driving me crazy with anxiety. I may extend my current sick leave to relieve some mental pressure. And also because I still feel really unwell physically. 

    Sam

  • Hi Sam….. time to get your pointy elbows into your GP surgery doors along with a screen shot of this information and ask searching questions including what can they do to help you physically in the time being.

    If you have a contact number for the Heamatology Department or the hospital appointments department then give them a call and see if there are any cancellations.

    …….. the aim of the Faster Diagnosis Standard (FDS) is 28 days from referral to diagnosis.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi there, I'm really sorry to hear that you're going through this. It's incredibly tough, and I can relate to your feelings of anxiety and uncertainty as I've been in a similar situation.

    Firstly, regarding the blood cytometry test, it's a detailed analysis of blood cells and it can take some time to get the results. The date on your NHS app likely indicates when the results will be available for your doctor to review.

    While you're waiting, it's important to try and take care of your mental health. I found that establishing a routine helped me a lot. Try to incorporate activities that you enjoy or find relaxing. It could be reading, listening to music, meditating, or even going for a walk.

    It's also crucial to communicate how you're feeling with those around you. Reach out to friends or family, or consider joining a support group. There are many online communities where people share their experiences and provide mutual support.

    Regarding work, if you feel you can't handle it right now, it might be worth discussing your situation with your employer. They may be able to offer some flexibility or support during this difficult time. Remember, it's okay to feel scared and overwhelmed. You're not alone in this. Take it one day at a time and try to focus on things you can control.

    I recommend using a trustworthy pharmacy to purchase quality and effective medications, I use only this pharmacy for a long time, affordable prices and excellent quality.

    Sending you strength and positive thoughts!