Hello everyone. I’m new here but just need some moral support.
I won’t bore you with the whole story as it’s long! But basically 3 months ago I got a lower back ache which quickly got worse and I started having all sorts of symptoms. Lost weight, sweats, shooting pain, deep aching in lower back, difficulty sleeping and i was really bad. After being fobbed off I decided to phone my old cancer nurse (I had a benign tumor 5 yrs ago and still had number) she was amazing and said to go and tell gp to refer me urgently. I did and he did but didn’t do it properly and I got an appt for a month for mri. By the time I had it my symptoms were worse and a was getting shoulder and neck pain. Swollen lumps, hot swollen hip. Couldn’t work and really struggling. Results eventually came and they sent me for another mri as the was parapelvic cysts on kidney. Para aortic retro perinatal lympathomy possible adrenal mass. and other bits and pieces. Had that scan 2 weeks ago. They had MDT and I had telephone appt to discuss with consultant. He never called.
I called nurse again and she was shocked. She looked at my notes, he has sent me a letter (this was 4 days ago) I haven’t had it yet and she says he’s now asked for an mri of my pelvis.
Meanwhile I’m in agony, I can hardly move. I have no appetite, swollen lymph’s and loads of lumps everywhere, now the pain in my shoulder and upper back is awful. My blood pressure is fluctuating all the time, sometimes to 165/105 at 4 am when in bed and sometimes 117/70 just after moving around and recently found a hard painful lump at the bottom middle of my breast bone and my chest sometimes feels very tight. Went to gp for some better pain killers and she gave me gabapentin. I’m lying in bed just feeling something very wrong is going on. My body feels broken and movement is difficult. Every days is different and the symptom list keeps growing.
I’m worried it’s lymphoma and if it is I just want treatment because it feels like I’m wasting away. Anyone else had pain like this?
Thanks for listening
Lucy 
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Hi @Lucybluebell and welcome to the forum.
Gosh - it sounds like you have so much going on and I completely understand that you just want answers. I would be exactly the same!
It must be very frustrating that everything is taking so long, especially as it sounds like you are in so much pain.and new symptoms are appearing all of the time.
I can’t comment on what it may or may not be as symptoms can lead to different diagnoses. All I can suggest, is that if you are in so much pain and it gets worse, get yourself to hospital.
I think it might be worth giving the helpline a ring to talk things through if you feel up to it? I have also copied in the @BloodCancerUK_Nurses to see if they can offer any advice.
I really hope things improve. Please keep posting as there is always somebody to listen and support.
Lots of love
Nichola
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Dear @Lucybluebell,
Welcome to our forum. It is a safe and welcoming space and I am sure you will receive lots of support here.
I am sorry to read about the difficult time you are having and that you are in agony. Your symptoms need to be investigated urgently and it is frustrating to hear that this is not happening.
As you have been experiencing chest tightness and are in so much pain, I would strongly suggest calling 999 or go to A&E so you can seek medical help.
Our nursing support line is open until 1pm today. We would be very happy to talk this through with you in more detail on 0808 2080 888
Please let us know how you get on.
Take care
Fiona(support services nurse)
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Thank you for the replies. I have a blood test on Friday and another MRI this time of pelvis on 11th. They are going to rush the results through as I have appt with consultant at Queen Elizabeth on 14th Oct. I just hope I get some answers. Honestly I’m at the stage now when I’m ready for anything, I just want some answers and then just to crack on and get myself healthy again. I feel so bad for mt partner and my daughters, it’s awful seeing them worry and not be able to tell them anything x
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Yesterday I found a hard immovable lump in my groin and I have strange bruises popping up and little red dots. It’s just never ending 
Hi @Lucybluebell
You must be really worried and I understand that. I’m glad they are rushing things through ready for your appointment. Hopefully you’ll get some answers!
It so hard when others worry isn’t it. I found it really tough watching my daughters worry to. But they will be ok 
Keep us updated x
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Thank you. I’ll bring some good news hopefully 
x
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