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Waiting is the worst

lol
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Hi

Why does it take so long for results 2 weeks for biospsy results now waiting for CT scan appointment.  Im 47 and been diagnosed with 4cm breast tumour and already in lymph nodes.  Hosp appointment was weds and still no letter with appointment date so more weeks of waiting to see if it has spread.  I have been in terrible pain in my pelvis for last year and now this could be linked if it has spread to my bones.  Just finding it really hard to get through each day not knowing.   I cant understand why the scan could not have been arranged once the biopsy results were in instead of waiting.  I have already been offered chemo, surgery , radiation and Herceptin but as I am the bread winner at home the thought of being off work makes me want to forget it all and just carry on regardless so the longer the wait the more I am inclined to do so.

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    Hi Lol,

    The waiting always seems to take forever. The fact that the NHS still uses letters for appointments doesn't help, it makes the appointment clerks job harder too as they have to allow time for the letter to reach patients. You could try ringing the CT department, explain the situation and ask to arrange an appointment on the phone. The appointments are made by humans and sometimes a call helps as they might be able to see a gap in the schedule and slot you in for the following day. It's certainly worth a try.

    If you haven't already done so, it would be worth applying for the PIP benefit. It isn't a huge amount but it will help cover any extra costs or lost income. It isn't means tested andis backdated to the date of a cancer diagnosis. My local MacMillan service submitted my claim for me and were able to have it fast-tracked. Having the PIP also makes you eligible for free prescriptions.

     

    Good luck!
    Dave

     

     

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    Hi lol

    The waiting is the absolute worst but its important that the Doctors have all the information so that they can recommend the correct treatment plan.  You could always ring the Doctors secratary at the hospital to chase things up.

    Once they have all the information then it is important that you listen to the recommendaions and options that are on offer. You may be the breadwinner but that is really not something you should consider - you may be able to continue to work only taking sometime off sick, or you may be able to apply for benefits (McMillans can help you with this) while receiving treatment.  It will depend on your treatment plan.

    Lets us know how you get on.

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    Hi lol

    This is such a stressful time, as all of us here will know, the waiting and more waiting, all the time knowing that you need to start getting treatment straight away. The biopsy results can take two weeks as cells from the biopsy often need to be "processed" before being analysed this can take several days. The labs have a constant backlog with the huge volume of material sent to them.The scanners too are in huge demand, at my hospital you often receive an appointment for late evening or at the weekend, as they try to get maximum use out of them. Meanwhile your team will be discussing your case, this means arranging a meeting at a date that all those concerned can attend who will each add their input and arrive at the best possible indiividual tailored plan for your treatment. Of course this doesn't help you, or allay your fears.

    Re your work, please for your dependants sake dont put work first ahead of your treatment or getting better. This awful disease is not something you can just forget about and carry on. There are ways through it even though you may experience extreme financial hardship. Dave and river have given good advice about contacting McMillan who can point you in the right direction to get help and even help you out with form filling. And prescriptions are free for 5 years for eveyone after being diagnosed with cancer, you can apply for an exemption card. Hoping your treatment gets underway soon all the best Kim

  • Offline in reply to kimchoson

    Hi all thanks for the comforting words.  Sent partner away for the weekend and spent 3 days drinking myself stupid.  I know this wasn't clever but I had tried putting on the brave face and just needed to get it out my system.  The usual thoughts of why me, if it was to happen why couldn't it happen when I had seen my son grow up etc etc.  Lots of tears shed but outcome was when he returned instead of trying to push him away we had honest conversation and spoke about our feelings and lots of hugs.  Last two days I have been pro active and hospital appointment on Friday contacted private healthcare and am actually planning on having the treatment for the good of all of us.  Son who is 15 has gone away with his girlfriends family to Spain for a week (not planned) but is just what he needs.

    Am sure I will be using this forum a lot during my treatment over the next year.  Thanks again.

     

     

  • Offline in reply to lol

    lol

    Well done - your on your way to getting this sorted out. First you have to accept your situation, then tell those close to you, this is good therapy without it being "therapy". You sound an organised focused person, this will help you a great deal in what lays ahead. Do call back here, there will be many who have been through your treatment and can give practical advice and support. Best wishes Kim

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