Scared and frustrated

I’m feeling incredibly lost, frustrated and very scared. I have so many thoughts and questions going around my mind.
After several infections between January and may my GP ran a full blood screen. I explained that I had been feeling extremely tired for months and that my other symptoms included pins and needles in my hands and feet, excessive sweating, itching and skin sensitivity after showering, joint pains and visual blurring with fatigue.
She called a few days after and said that my HB, RBC and HTC were high but she only seem concerned about the HBA1C levels of 50 and stated that I had type 2 diabetes and that she wanted to recheck my bloods again after a month. I had the second set of bloods taken at the end of July and there had been no changes so she started me on metformin and referred me to the diabetes nurse. Mid August I developed sudden abdominal bloating( waist size increased by 9 inches) and pain after eating her advice was to increase my omeprazole to 20mg twice a day. After 2 weeks there was still no change. I spoke with a different dr who agreed to request a CT scan which was inconclusive.
Afrer 7 weeks has nothing has changed at all.
Early hours of Tuesday morning I was woken by several chest pain and called 999 and was taken to A&E. There were no ECG changes and no evidence of cardiac damage in the blood results, however I was advised that my Lymphocyte level is >6 and that the abdominal distension and pain would be a confirmation of lymphocytosis and I should request that my GP referred me to a haematologist.
I spoke with my GP today and pretty much had to beg her to do the referral and she even said that it was unlikely that it would be accepted as I was not symptomatic. I then had to reiterate the symptoms I have been experiencing for the last 9 months and she denied any knowledge of these. Finally she agreed but under duress. I discovered a slight swelling in my arm pit during showering this morning. Which was the only reason she finally agreed but kept saying that It is mostly likely due to a long term viral infection. I explained to her that I have looked into the possible causes of lymphocytosis and the list of viruses stated are incredibly unlikely ( HIV/AIDS, Hepatitis A,B or C, CMV and Glandular fever) however the list states that the most common cause is Acute/ Chronic Lymphatic Leukaemia

Its obvious that I am not being listened to and I am being made to feel that I am a hypochondriac. Please has anyone else here had a similar experience can you offer any advice.
I’m 48 years old.

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Hi @Littlesusie, welcome to our forum and you say it all, you must feel very scared and frustrated, let alone all the other thoughts and feelings that I expect are whizzing around, it must be horrible feeling you are not being listened to. Perhaps you might ask for a second opinion.
You say that you have been referred to a haematologist so perhaps that might confirm or rule out your Leukaemia fears.
We are not medical people but we are here to support you and I expect others will have encountered similar obstacles to getting a diagnosis, mine was more of an instant shock as I was being treated for a gynaecology issue.
If you would like to speak to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
Please let us know how you get on and be kind to yourself.

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Thank you Erica your words are very much appreciated x

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I can relate to what you have been going through, I was getting regular sinus infections for nearly 3 years.
My GP gave me 2 week courses of different antibiotics, I was clear for a couple of weeks then another one started. I also started getting heavy nose bleeds.
In desperation I got him to refer me to an ENT consultant on a private basis.
I saw him several times and he raised the question that there was a problem with my immune system, which my GP ignored, resulting me requesting a FBC.
Another GP at the same practice got the test results and phoned me late one Friday evening to tell me I had a bone marrow problem, scared me terribly.
I saw my own GP on the following Monday, he looked at the results and said there was nothing to worry about and said “ I hate it when someone else does my job”
I went back to the private GP who immediately referred me to a haematologist again on a private basis who gave me blood tests on Monday, a bone marrow biopsy on Tuesday and told me to come back on Friday for the results.
I went back on Friday expecting the worst, and got it!!
I have Myelodisplasia ( incurable) a form of blood cancer which will eventually progress to Acute Myeloid Leukaemia.
All this private treatment took all my life savings.
It sounds as if your GP is as incompetent as mine was
I’m now being treated on the NHS by the same haematologist with Azacitidine 5 days in every 28.
But I’m still alive, although stress and anxiety is the norm now.
I’m very much aware that the chemotherapy is holding my blood levels at an acceptable level and it won’t last forever.
Next week is my 76th monthly cycle providing today’s blood test doesn’t show any anomalies.
I’m lucky to have had the money to pay for private treatment, I’m now getting Attendance Allowance and Housing Benefit.
Don’t give up, keep pushing for treatment

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Thank you, I’m so sorry you had this to deal with but very glad someone finally listened x

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Hi @Blackhat, I often think that medical people do not realise the effect of how they say things, what they say and when i.e. on a Friday evening, don’t they realise the waiting and not knowing are the worst.
I am really glad you are quite rightly getting Attendance Allowance and Housing Benefit, another struggle I expect and when you least feel like it.
Yes, ‘don’t give up’ is probably going on my tombstone !!!
How have you been?
Take care and stay safe.

I’m ok thanks Erica,
Housing benefit was a tussle when I first applied, that was due to incompetent council staff.
I didn’t have a problem with attendance allowance.
I have been involved with Pilgrims Hospice for some time who filled in the form via a telephone conversation with me.
I have been allocated a social worker by them who advised me how to fill the form in, it’s enormous.Because the form was stamped by Pilgrims Hospice it was fast tracked by DWP, I posted the application on 21/9 and got confirmation within the same week.
DWP advised the council of my A/A award and my housing benefit was increased to over double what I was getting.
At least I don’t have to worry about my financial state
anymore.
I’m also getting counselling via Pilgrims, which I don’t think will help at all.

I had the flu vaccine yesterday afternoon after my pre chemo blood test, suffering some side effects as expected, but they will have gone by Monday when my next chemotherapy cycle starts.
Have you had yours yet?.
Best wishes
Anthony

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Hi @Blackhat, great to get the catch up.
I am having my flu jab on the 14 Oct. It will be weird going into a building with other people in it.
All my medical appointments have been by phone so far, next hospital one in person is the 29th and they will do my bloods on the day before my infusion.

Got a letter from the surgery this morning so at least I now know that the referral has definitely been done. Should get a call in the next 3 working days xx

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Great news @Littlesusie, please let us know how you get on and how you are feeling.

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Good luck and best wishes
Anthony

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@Littlesusie your experiences sound just like mine. I had a chronic back pain and for several weeks I just kept getting told that I needed to grit my teeth and work through the pain as that was the only way to get better as well as do some exercise. I was admitted to hospital twice and their policy is just to push you onto some physiotherapists who try and force you to walk no matter how much pain you are in as they want the bed back. Nobody wanted to do any investigation and I was told there was nothing wrong with me and I just needed to get up and go home as I couldn’t stay in their bed. Luckily for me, one doctor ordered an MRI just to shut me up and prove to me that there was nothing the matter. It showed a vertebral fracture and clear signs of Multiple Myeloma. Suddenly nobody talked about me getting out of bed or going home and the physios avoided eye contact with me. Unbeknownst to me my GP had already suspected Myeloma and order an MRi which would have taken 3 weeks as there was a waiting list. I only got a quick MRI as I was already there. My GP was furious when he found out how they had treated me and wrote to them to tell them so. Their response was “we’re just following standard protocols”. My GP from that time now uses my case when training junior doctors of an example of how not to treat patients. You sound like you’ve had a similar experience. I hope that you’re able to get all of this resolved though I know that you must be anxious about the possibilities. I remember when they told me of my diagnosis I actually felt relieved as I felt vindicated for making a fuss and not just being a nuisance for the sake of it! Hope you’re well. Let us know how you get on.

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This is my biggest fear. 35 years ago my granddad was told to get on with it. He was a small man just 5’1” and at 13 I could carry him up the stairs because he couldn’t weight bear he died in such pain just 6 days after his diagnosis of multiple myeloma. I became a nurse to make sure that no one would die in such pain on my duty. I feel very let down. I’ve had no contact this week.

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Thank you everyone for your kind words xx

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@Littlesusie that’s awful. They must know that you’re really anxious about this. Let’s hope it’s a case of no news is good news. Do let us know when you hear something and always know you can come here if you need to talk.

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@Littlesusie
Hi there! how have you been doing? I’m so sorry for how much worry and upset this has caused you. And I can only imagine, the really tough experience you described whilst supporting granddad must add to this. It sounds like there’s so much you’ve been through.

As our other lovely forum members have said, we’re here to support you, so please do keep reaching out.

Su

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Oh, @Littlesusie, that must be your biggest fear and I hope you have been able to see advances in research, diagnosis, treatment and pain relief in the time you have been a nurse and perhaps you are able to see what it must be like to be a patient.
You say you have had no contact this week, is there anyone you would like to contact and don’t forget you have had contact with us on the forum.
Take lots of care of yourself and you can contact our 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 if you would like to talk to someone.

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