Hi there, I need to share my story because I am so desperate to find out what’s wrong with me. 2 and half years ago i became too unwell to work. During that initial period I had my Gallbladder removed & also had surgery on my prostate. However, since then, due to a whole range of debilitating symptoms I have gone back & forth to my GP, who is sympathetic to my situation. I have been referred previously under the NHS 2 week cancer pathway for suspected:
- Lung cancer - due to multiple episodes of coughing up blood & breathlessness
- Prostate cancer
- Liver cancer
- Oesophageal cancer
- Colorectal cancer
Tests for all of which included combination of MRI, CT, Endoscopy, Colonoscopy & blood tests. All of which ruled out cancer, but discovered that I have:
- Barrett’s Oesophagus - this is monitored every 6 - 12 months because 2/10 eventually become malignant
- Fatty liver
- Gastritis in my stomach
- Gastro-oesophageal Reflux Disease (GERD)
- Critically low Testosterone
- Enlarged prostate
- Bloods have shown that my alanine- aminotransferase (ALT) has been high for18 months
- Recent blood test in A&E showed high white blood cell count
All of the above l receive treatment for.
However, I have continued to deteriorate & I am now considered disabled due to my debilitating symptoms which include:
- Extreme fatigue
- Intense nausea
- Breathlessness at the slightest effort
- Recurrent chest infections
- Recurrent Pneumonia
- Very low appetite & full very quickly
- Pain in upper back near rib cage
- Pain below belly button & groin - seems to be lymph nodes which are painful when pressed
- Bulge under my right armpit which is painless
- Pain when pressing on right side of neck - again this feels like lymph nodes?
- Lymph nodes behind ear, down side of neck are painful when pressed
- Multiple Lipomas diagnosed on right shoulder & behind neck
Im not being melodramatic when I say that I have recently felt like I can’t go on any more, I just can’t cope feeling like this - it’s an incredibly lonely please to be and im regularly reduced to tears. I believe that certain doctors & people in my life just think I am a Hypochondriac, but I’m definitely not - I know my body. I have had a long & distinguished professional career, yet for the past 2 and half years i haven’t been able to work and believe me I love work. I now rely on disability benefits and spend most days waking up and then getting onto the sofa to watch TV. It’s impacted how much I can even see my children, it’s destroyed me.
I would just love to hear others experience and also wanted to know if it’s ok for me to tell my GP that I want to be referred to a ‘Blood Doctor’ (what are they called?) to explore this further. I have to keep fighting guys!
Hi @Dazzler66 and and a big welcome To the forum.
I sounds as though the last couple of years have been really tough for you. Firstly with all of the tests and secondly with all the treatments for your diagnosed condition.
It must be so tough going from being really active to becoming so fatigued. It really does impact every part of your life.
It sounds as though your GP is very good and if you are still worried about other symptoms, they would be the best person to discuss it with and would be able to refer you to a haematologist if they thought that was the right pathway.
If you need to talk things through, the helpline is really helpful. I have copied the link below.
Please keep us updated on how you are doing and definitely make the appointment with your GP. Also, it may be worth considering some counselling if you think it may be helpful. You have had so much going on which seems to have taken a toll on your emotional wellbeing as much as your physical.
Nichola
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Thanks for the reply Nichola. Yes I do have counselling already which helps and whilst my GP is very sympathetic i have always found that it’s me saying to him oh im concerned about X and then he responds and does the appropriate referral. A lot of that is because I’m so desperate to find out what’s happening! Im not a doctor but yet I need a doctor or even different types of doctors to do their best to fathom out what’s wrong. Blood cancers are the one area that we haven’t looked at yet - and im sure thats to do with the fact that my bloods, other than a recent spike in white blood cells and periodic spikes in inflammatory markers (CRP) have been ‘normal’. I may well call the helpline before making an appointment to see my GP.
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Dear @Dazzler66,
I am sorry to read everything you have been through and how much this is impacting your life.
Like @Nichola75 has mentioned, we would be very happy to talk things through with you, you can reach us on 0808 2080 888.
Reading how debilitating your symptoms are I would agree that going back to the GP is the most appropriate next step. Although I cannot say whether a haematologist is who you need to be referred to, there is no harm in raising this with the GP. I have added in here our pages on blood cancer signs and symptoms which you may find helpful, it can also help guide those conversations with your GP - Blood cancer symptoms and signs | Blood Cancer UK
I am sorry to read the affect this is all having on your mental health. although this is unsurprising with how much in your life has had to change. Please do raise this with the GP and also know there are services available 24hours a day if you need them, such as mental health support via NHS 111 and the Samaritans - Contact Us | Samaritans.
Please know we are very much here for you and only a phone call away.
Best Wishes,
Heidi J (Support Services Nurse)
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