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Worried about my hematology consultant appoitment on monday.

4 Jul 2019 23:10

I am only 31 with a young child. I have been unwell since October 2018. I first started getting pains near my left hip amd groin. So bad i went to A and E and the gynacology consultant said most probably pelvic immflamatory disease and gave me the antibioltics needed by injection and tablet form for a month. All was well and then in January 2019 I got a bad cough and it was a chest infection got given antibiotics. A week after my antibiotics had finished i had a throat infection again prescribed antibiotics. This recurred 3 times and lasted about 7 weeks had 3 different antibiotics. A week again symtom free and i get another cough , another chest infection and yet more antibiotics. In the mean time i was having left sided flank pain between hip and bottom of the rib cage. They tested me for a UTI as i had blood in the urine but no infection. I got referred for blood tests throughout where they all came back as normal except my white blood cell count being slighly higher than normal but not enough for infection and my crp index markers being slighly inflamed. Chest xray and hip xray clear. Recently i have been getting more worrying symtoms like random fever, sweats linked to fever outbreaks, itchy all over, chest pain, shooting pain near ear in the neck and under my armpit but just left sided fatigue and loss of appitite. I was put on the waiting list to see consultant which was near enough 6 months!!!! When i got this chest pain i was sat on the sofa and it just came on suddenly. I got another blood test in a and e but was told all bloods are nornal and probably anxiety even though  my breathing was not compromised and was breathing nornally was just in pain. 2 days after this i got a phone call an appoitment was on the way in the post for the consultant. I am worried as obviously something is going on but tests are 'normal' so im being told..... but i dont understand if they are nornal why am i being rushed for a hematology appoitment when the wait was 6 months? Im just sick and tired of being unwell constantly and run down, tired and telling my child mummy cant take you to the park today as i feel unwell. I guess i just fear they also wont know or i will be referred for more tests and there will be yet more waiting. I know there are more people out there going through alot more worse things than me so dont want sympathy but guess i just needed somewhere i can write this. 

Worried about my hematology consultant appoitment on monday.

5 Jul 2019 07:47 in response to musicismylife

Hi there,

I'm sorry you are having such a stressful time. I have similar symptoms to yours plus slightly enlarged lymph nodes.

I had a few hematology appointments before I was discharged. During the 1st one they run loads of blood tests. All came back normal. During second one they referred me for a CT scan. That came back normal too so they discharged me on the 3rd one. I was so convinced I had it as I had most of the symptoms.

My GP said it would be a long wait for the appointment but I was seen within 1.5 weeks. They often have many consultants running the clinic so maybe a space became available for you.

I still don't know what's causing my symptoms but it's lot lymphoma. I hope your appointment goes well and let us know how you get on xx

Worried about my hematology consultant appoitment on monday.

5 Jul 2019 11:58 in response to A.B

Thanks for replying im so sorry they havnt found out what is causing your symtoms but so happy it wasnt lymphoma also. I have not noticed any lumps on neck so hoping it is not but there is just some doubt in the back of my mind as symtoms seem to match having not known what the symtoms of lymphoma was beforehand. I also just want to know. Its the not knowing that concerns me and if i have to go for more tests and do more waiting i will be so disheartend. I will let you know the outcome on monday. Fingers crossed its not lymphoma but something else that they can treat. Ita driving me crazy. 

Worried about my hematology consultant appoitment on monday.

5 Jul 2019 12:25 in response to musicismylife

I know, the wait is the worst as your mind goes into overdrive!.

I'm sorry to say it but you will most likely have to wait couple of more weeks before anything can be confirmed. I waited 4 weeks between 1st and 2nd appointment. But the consultant said if anything shows in my bloods they would ring me earlier. So in my case no news was good news. Also if they will decide to do a CT scan there will be wait for that and then for the results. I was going into the 1st appointment hoping I will leave with some answers but I dont think it works that way. So it might be best to prepare yourself for that to avoid disappointment. But the consultant didn't seem concerned when I initially saw her so that did calm me down and made the wait more managable. 

There is a lymphona charity helpline if you maybe want to talk to someone about the whole process and what questions to ask etc. The ladies are lovely and I had a cry to them once or twice and felt better afterwards Happy

I also have little children so my heart goes out to you. All I wanted to do is stay in bed all day but they kept me going. Good luck on Monday xx

Worried about my hematology consultant appoitment on monday.

8 Jul 2019 15:30 in response to A.B

My consultant appt was horrendus Sad she asked me to tell her the symtoms, so i did then stopped me half way through my list said stop right there your bloods are all normal, so dont know why youve been refered to me. She felt me over for any lumps and bumps and then discharged me and sent me back to thd GP, because the wait in my local area to be seen was 225 days and out of area (a 30 min drive away) was only 16 days my GP sent me to the other hospital. She proceeded to say why did you GP refer me to this hospital ( out of area) anf i told her due to waiting lists and then she said well yes you live in a city thats your choice and then looked down at me and sent me on my merry way. What do i do know? My temp has spiked and is 39 degrees. I feel like she doesnt believe me like anyone belives me!

Worried about my hematology consultant appoitment on monday.

8 Jul 2019 16:10 in response to musicismylife

I was thinking about you today and wondering how it went. Omg what an awful experience! But on the other hand, she wasn't concerned so it's a good sign. 

Maybe do go back to your GP to see what else can be done. Maybe a CT scan? Or any markers? I had bone profile & LDH done at my 1st appointment so maybe ask for these. I was loosing weight and had palpable lymph nodes but had a feeling if it wasn't for that they would have discharged me straight away too as my bloods were normal. 

I will keep my fingers crossed for you and let me know what your GP said.

Worried about my hematology consultant appoitment on monday.

11 Jul 2019 14:31 in response to A.B

GP has referred me under 2 week wait to hematologist in my local hospital. He wrote suspected lymphoma has b symtoms and wrote a list of symtoms recently being itchy all over and pain in centre of chest like a stabbing pain. Last night i had it in my left arm and chest. As i am writing this i have temp of 39.5 and falling asleep on the sofa. This is not like me. Got work in 30 mins. So tired. Feeling like a small victory, but surely this is what should have been done in the first place? 

Worried about my hematology consultant appoitment on monday.

11 Jul 2019 19:13 in response to musicismylife

Hi, sorry to hear about your illness. I can understand the stress you are going through as I was diagnosed last year with lymphoma with B symptoms, I had chemo and was in remission for only six weeks when it came back. I’m on watch and wait now, getting bloods done every 3 months. The first time round though my bloods were all normal but it was the lump on my neck that was concerning, the only way to diagnose it was with a biopsy, then a ct scan to tell them what stage it was at. I had drenching night sweats, lost weight and had a terrible itchy scalp, fatigue was really bad, I was sent to an ENT specialist first then had biopsy then referred to haematologist. Itchy skin can be caused by many illnesses, my doctors gave me special shampoos etc because they didn’t know what was wrong and after the first chemo, the itch went away. I know you are thinking the worst and I can’t take that away from you, but you are young as well and I can understand how difficult it must be with children. Maybe you not having any enlarged lymph nodes is a good sign, the doctor will examine you thoroughly for any lumps, I had lumps that I didn’t even know I had. I really hope it’s a good result for you but can I just say that even if it’s lymphoma, the treatment is way better than it was years ago, I coped well and felt better with each treatment. I’ve just been on holiday and have felt great even though I know that’s it’s back in my neck and chest and hopefully don’t need treatment for a long while yet. I wish you all the best, please let us know how it goes.

Worried about my hematology consultant appoitment on monday.

11 Jul 2019 19:36 in response to scones

Thank you so much for your reassuring words. Yes i know its going to be ok, i guess as its been going on since october its really getting me down, not having energy to play with my daughter whos 4. I have no visable lumps but what if they are not visable? Or felt as deep down. Or in chest as you say. I hope and pray its not but concerning when all symtoms only match lymphoma without the lumps. I will keep you updated shouldnt be long now. Hope you are as well as can be and it stays that way

Worried about my hematology consultant appoitment on monday.

11 Jul 2019 20:10 in response to musicismylife

If you have no lumps, the ct scan will reassure you as they usually give you a contrast drink and put the dye in the vein as well, this shows up any cancer that may or may not be there. If they do see sumthing they will do a biopsy as there are over 90 different types of lymphomas and they need to find out which one it is to treat it correctly, I also had a bone marrow biopsy and another biopsy in my neck and under my arm. These tests takes weeks to do and get results, you may be lucky, I will keep my fingers crossed for you x

Worried about my hematology consultant appoitment on monday.

14 Jul 2019 23:09 in response to musicismylife

Musicismylife, are you still getting fevers? What does the doctor say about it? I keep getting random fevers, they make me feel awful. It wakes me from my sleep and I feel drained and sick Sad 

Worried about my hematology consultant appoitment on monday.

18 Sep 2019 12:29 in response to musicismylife

Musicismylife how are you now? Did things settle down for you? 

Worried about my hematology consultant appoitment on monday.

18 Sep 2019 20:08 in response to Smoore921

Short answer no. 

 

Still getting symptoms but bloods cane back no lymphoma so nothing serious but my ultrasound showed scarring on my left kidney. They think its from a previous kidney infection but my bloods still have a higher than normal white blood cell count but not enough for a kidney infection but this is where the pain is. So i have a CT scan on Sunday to see where the inflamtion is coming from and hopefully find where the infection is. 

Worried about my hematology consultant appoitment on monday.

26 Sep 2019 12:11 in response to musicismylife

Im sorry you are still having issues. Do you know when you will get the CT results?

Worried about my hematology consultant appoitment on monday.

27 Sep 2019 07:40 in response to Smoore921

If it was showing anything serious i would have had a letter by now or a phone call i guess had ct on sunday. I recieved a letter yesterday saying i was booked in for a ct scan if results were fine and nothing to worry about then i would be reffered back to GP with a fibromyalgia diagnosis with 1 yearly kidney checks.