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Blast and double blast !!

Lesleyann
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My husband was diagnosed with plasmablastic lymphoma in August and is on intensive chemo. 96 hours in hospital then out until the counts are up then back in. He is responding very well and his 30 cm tumour has almost gone. However he will get a stem cell transplant and that has scared me. I've been told the risks and the time it takes...good grief it is all feeling like a terrible dream. I am working although not as well as I ought to be as I need to be at his side quite a lot. I have self diagnosed a low mood in me and think I need some help with it. We are coming into the busy time for church ministers and I am also about to go into the toughest time with my husband . The transplant will probably happen after Christmas but the chemo still goes on and the one before transplant is going to be harsher than the harsh ones he already gets. I feel very lonely and need the courage to go and ask for time off. How have any of you coped with this journey and worked? 

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    Hi Lesleyann,

    Communicate with your employers amd if they have an ounce of compassion they will make adjustments in their expectations of you.If they don't sue them for wrongful dismissal! Whatever job you do, your husband's needs must come first - "foresaking all others" includes your job at times. 

    In my case I was the patient and took a few days off after each chemo infusion but in the end I needed to take time out when I realised that my tiredness and frustration was leading me to be ineffective and judgemental towards staff members who were taking time off for relatively trivial issues.

    Best wishes
    Dave.

     

     

  • Offline in reply to davek

    Thank you, very wise words. I recognise the judging others part and as I am a vicar that is not great :/) I will speak to my bishop about what to do. 

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    Hi Lesleyann

    Go to your GP and ask to be referred for counselling or ask your husband's nurse to refer you. 

    My mum was the same, she had a terrible year once I was diagnosed with cancer and eventually I couldn't take her mood swings anymore. I was being the strong one for everyone but my mum's moods were bringing me down

    I spoke to my community Macmillan nurse and she spoke to her and then referred her for counselling. It's done her the world of good and I would recommend counselling to everyone if they need it.

    ask for help through work. My strength comes from inside me. I need to be strong for my son but when I need to lean on somebody I call my nurse and they don't just help the patients but they help the family.

    i hope everything goes well for your husband and keep your chin up. Things will get better. You just have to get over the this hurdle. Good luck.

    Debbie x

  • Offline in reply to Lesleyann

    I'd guessed some of that but speaking as a former boss whatever your vocation or job unless your manager is aware of your family situation he/she hasn't a hope of treating you right.

    A good friend (and former direct report and a Methodist lay preacher) once said to me that if I needed to know how invaluable I was to the NHS I should put my hand in a bucket of water, remove it, then see what impact it had :-) I didn't appreciate his counsel at the time. I retired because of my cancer and I was replaced within a few weeks and the NHS didn't grind to a halt. I'm pretty sure the Church is similarly resilient. 

    Best wishes

    Dave

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