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Picture of Topic Haematological (blood cancers)


Topic Haematological (blood cancers)

A space for people with blood cancer to share experiences through their watchful waiting, treatment, after treatment and in coping with symptoms and side effects.

  • 2 conversations


Started by Anonymous on 13 February 2018 at 19:00

Hi, my first post here. I have nowhere else to turn & I’m hoping to talk or some form of consolation. I was diagnosed with stage 4 NHL T cell back in late 2015 at the age of 28. They took their time administering treatment & took 5 months to start my chemo. Ever since after chemo I routinely get it in my head is it back. I have a severe anxiety disorder - generalised anxiety disorder - which I’ve had problems with for years. It doesn’t help. Currently for the last month & a half I have felt extremely fatigued, unwell, tired - my anxiety is extremely high as is my depression. Along with this, for the last five weeks although not having any “illness”, my node under my jaw has swollen and not gone down at all. My haem team checked on it a week after it showed up & it showed a fatty hilum & they’ve consistently said not worried but I am so scared & I feel so awful constantly that I am certain it is back. It brings so many memories of before - the lump, the tiredness, the aches in my armpits. Everything. I am in limbo & I don’t know what to do. They seem to be in no hurry -they want to do another ultrasound on 28th Feb - while I’m constantly battling my physical & mental healthz i can’t take much more & just want answers. Before I found the lump I had tired and fatigue problems but slowly got worse. Then the lump appeared over a matter of three days. Here is all the haemotology team has said from when it was one week into having the node enlarged :- Not overly concerned Node feels more like infection node Only small Neutrophils & wbc up to fight infection/virus fatty hilum in node - fatty hilum usually taken over by malignant cells whereas I had one present in node Would bet money on it Would be happy to see me in 4 months Within the normal size of an enlarged node Is it likely anxiety & depression can cause all my symptoms & it isn’t the cancer back? I just can’t keep waiting. I literally lay in bed all day & have no life. I’m always irritable with aches, tiredness & headaches. I barely go to the toilet & have lost most of my appetite. Sorry for long post but I’m so lost. I just don’t want to fight cancer again & I feel noone really listenjg or helping. Thanks. Cally.

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  • Picture of SusieQ
    From SusieQ  
    14 February 2018 at 12:07
    Edited on: 14 February 2018 at 13:29

    Hello Cally,

    It sounds a worrying time for you and there's no wonder you're exhausted.

    The fear of recurrence is something that most people with cancer struggle with, so you're not alone in feeling anxious and stressed about your new symptom.

    You've possibly learnt how to live with your anxiety and depression, but it sounds natural that it's all gone up a notch over the last few weeks or so.

    From what I'm reading in the report you mention, is that the node is not currently causing the haemo-oncology team concern. They sound to be on top of the situation and planning a ultrasound scan on 28th Februyary. That makes sense, as if it's a temporary infection causing the node to swell, it may have settled down a bit by then.

    The trouble is that when you've been through gruelling treatment, and are feeling exhausted, then flashbacks from the past and worries about the future can takeover in this 'limbo' period. It sounds as though your anxiety disorder has escalated with the new worry.  I dont know if you've been back to your GP at all, with your anxiety flare up, but it would be a good place to start. For example, if you're on any medication (anti-depressants etc) the dose could possibly be increased.

    If you're living near one of our Maggie's Centres, you'd be welcome to drop in and talk with our team.  Meeting others who share the same worries, and learning coping strategies can help. The other thing can be to join your local lymphoma support group, where you could meet others who have undergone treatment, and mutually support each other.The Lymphoma Association also has an online forum and a helpline (0808 808 5555). You could perhaps contact them and find out more about what might be planned re the management of your new nodule. (I sense they'll be able to reassure you that the plan your team has discussed sounds OK).

    What I do hear is that you feel very alone in all this, and that no-one is listening. Many people will identify with how you feel. We're listening here...

    Do message Robyn or myself if you'd like to talk through anything in more detail,

    Warm wishes


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Topic Haematological (blood cancers)

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