Coping with waiting for answers

Hi, 

First of all I wish you all a happy new year 

I've been reading this page and it has sort of helped just lurking about but I thought I would try and post as I am so anxious and a bit all over the place mentally. 

So where to start... 5 years ago I had an enlarged lymph node removed from my chest that was found by chance, I had all sorts of tests and a biopsy and they decided the safest thing to do was to take it out. Subsequent scans found that the problem was solved and I recovered from the op and went back into work. It was a real wake up call for me to take care of my health more and I made a conscious effort to eat better, exercise more etc (still not perfect but you know).

Aside from some residual side effects from the op I was in good health, but then around June time I noticed I was getting really tired. It was around when I came off furlough and I figured it was just me getting back into the routine so I carried on. Over time I started getting an ache in the top of my arm, like in the bone but it wouldn't last long. A few times over the period of a few months I would feel so obviously exhausted, achey and weak I would be sent home from work. Due to the pandemic my colleagues were being extra vigilant and I would have to get a covid test before I could come back but each time they came back negative. I had 3 tests overall from June to October. 

 

Around October time my left upper leg started exhibiting the same bone pain as my arm and also affected my work. It's a fast paced job with a lot of standing and running up and down stairs so it slowed me down a lot. Of course we got refurloughed in November so I thought maybe with rest it would ease up but it stayed consistent. On return to work in December it was way worse and had crept to both of my legs and sometimes in my head too. Had persistent low-grade fever as well as a bloated abdominal area. I was too ill to go into work from about December 23rd and did another Covid test which was again negative. 

Perhaps I should have spoken to the Doctors sooner but with everything going on I didn't want to waste anyone's time. 

So I got in touch with the Doctor after Christmas who ordered cbc blood tests over the phone almost right away. These came back yesterday as OK but she wanted to see me in person. 

After the examination today (well yesterday now) she has ordered a cancer marker test and an abdominal ultrasound. I'm so glad it's being taken seriously and she has been fantastic but I feel like I'm in an anxious limbo now. 

I'm reluctant to tell my family the full extent of what is happening because this year has been a lot on them already, I have elderly grandparents we've all been worrying ourselves sick about all year, and the first scare was a lot for them to deal with as well. 

I'm worried about work, about my family, about what to say and how much to say and I'm still feeling rubbish in myself too. 

I'm so sorry for the long post but it's just all these things I've been keeping in my mind all month xxx

 

 

  • Hey, 

    I'm so sorry that you are going through this experience right now... I can only imagine how you must be feeling.

    I'm going through a similar experience myself in terms of waiting so long for answers and I feel like I should of pushed the doctors more but I felt like a burden or like I am wasting their time....
    its been going on for over 3 months now, I had acid reflux but then started to feel like I had lumps in my throat and like I couldn't swallow etc, could only get calls with nurses at first nothing with a doctor or actually being seen in person. I found it hard to explain my symptoms as they kept saying it was my anxiety making me feel like this. Anyway I can feel lumps in the side of my neck and I can see a lump growing in the back of my throat so I've got an US this month but I fear it's taken too long.. 

    ive had paramedics out for my panic attacks and just bursting into tears most days it's honestly awful I just want answers. But now I just try to stay calm and focus on other things just keep the mind busy and I've started doing yoga... see if that helps!

    When will you be going for your tests?? I hope all goes well with them and you find the answers you need to get yourself better.

    And also wishing you a Happy New Year!

    Xx

  • Hi! Happy new year. 
     

    I just wanted to pop on and say I'm also waiting for results. My nightmare started in October 2020 after I'd had a suspicious lump removed from my arm I got a phone call to say it needed further investigation as it contained cells looking like a lymphoma. 
     

    I was so shocked as I really didn't think it was anything that serious. I then waited until 21st Dec to see a lymphoma specialist - who told me the biopsy results where still being looked into. I was told to not worry about it as I'm 'young fit and well' which tbh really angers me because cancer doesn't decide to *** off if your 'young fit and well'

    Anyways that's where I'm at, waiting and more waiting. I know exactly how you both feel, here if you need someone to chat to xx 

  • Hello,

    So sorry to hear about what you are going through! I can't believe how long you have had to wait for your results! It's so wrong. 
    How are you feeling in yourself? 
    Have they given you any sort of time frame or is still all up in the air??

    I really hope you get some answers soon because it really starts to take its toll on you mentally, I've tried to be strong and deal with it but I'm at breaking point I'm so scared and worried of what's going on and that it's been left for to long etc but Doctors don't have the time to look into it or it has to be a phone call. 
     

    I'm considering ringing them again and trying to push for something more or my scan is in 11 days but that feels so far away.. 

    I agree, I think because I'm only 25 they don't think it will be anything serious, or they keep trying to blame it on my anxiety but I can see the growth in the back of my throat so I know I'm not going crazy! 
     

    But thank you for the reply and reading through all of this madness, I'm definitely up for talking more it's nice to not feel so alone.

    Take care

    xxx

  • Hi Bec thanks for getting back in touch. 
     

    I go through spells of feeling really positive and I tell myself 'no news is good news' but then other days I'm so anxious I just want to ring the hospital myself and say what's going on???? I was referred for the flu jab which I've never had before, I went 3 weeks ago and asked the nurse why I was having it and she said because your notes say you have a very weak immune system... but then the specialist at the hospital said they couldn't give me a diagnosis as the biopsy results weren't back! It's all sooooo confusing.  
     

    So what have they said to you? Yes maybe speak to them on Monday and see if you can go in for the scan sooner. 
     

    Honestly waiting to hear is the worst part, especially when you have an appointment and they can't tell you much. Grrrrr. 
     

    I hope you've had chance to have a nice new year xx 

  • Hi Bec, any news??? 
     

    I have CT on Friday xx