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Approx two years ago a scan found ovarian cysts. I had had them before they had gone away,been took out via laparoscopy.I was younger and much fitter then. just a daycase surgery and nothing more.

This time however me being diagnosed with a blood disorder that had already threatened my life it was decided to scan and do ca125 blood test.

In November I saw my consultant we discussed the scan he said no change and my blood was taken again.

December 23 I went after receiving an unexpected appointment. my ca125 levels are up and he wants more scans to be done.

It may or may not be cancer he said as other meds you take ABD other illnesses affect the reading but the scans should tell us.

My Christmas has been horrid, I'm crying all the time. no letter for a scan yet.

I don't want to leave the people I love.im not ready yet just as my life got better with grandkids and my daughter has announced another baby her first is on the way.

Will I be here to meet this beautiful baby.

My grandkids get upset if I can't go out if I have a cold it's going to hit them hard.

My husband has gone to pieces and doesn't even want to talk about it.


The rest of my family I don't see or hear from for reasons I'd rather not go into.


I wish they would hurry the scan.so I can start the fight 

Only me and my hubbie know what's going on as I don't want to upset my daughter as she has lost babies before.

Im told normal blood test is 30 just over 30 you could have no cancer to stages 1a one ovary 1b two ovaries and elsewhere 1c.full hysterectomy.

This is through research.

If my cancer is severe I can claim ds1500 dla or pip. to help with costs of travel etc.

The sister said I'm not that bad as that's usually in your 100s.

Due to my blood condition he doesn't want to operate as he is afraid I'd bleed to death.

Tablets don't stay in my body long enough to work as I had a stoma fitted when a dvt killed part of my bowel. I don't have it know but still have lots of problems with food,eating,digesting,chronic diarrhoea.

During thus I also went for a pip assessment they took over 100 pound a month. so I can't keep warm,can't eat enough and much more. so how can I fight when I'm cold,all I'm having is crackers and cupasoup. Sometimes I have nothing and have to stay in bed all day to keep warm.

The pip assessor lied about my conditions and how they affect me.my mandatory reconsideration was refused as they still believed him. we have complained and we are going to appeal this could take up to a year. I may be dead by then.


Anonymous
  • <p>Hi designleo,

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    <p>I&#39;m sorry to hear about the troubles you have been having, if you call the Macmillan helpline on 0808 808 0000 they should be able to give you some financial advice and help you with benefits entitlements.

    </p>

    <p>

    I hope that you get a diagnosis and treatment plan in place soon to put your mind at ease, best of luck.

    </p>

    <p>

    Xx

    </p>

  • FormerMember
    FormerMember

    <p>Thanks Aria,

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    I received a letter today and I have my scan to help fully diagnose on the 10 th jan at 2 pm.

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    Hopefully it won&#39;t be as bad as I&#39;m thinking.

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    I spoke to the sister and she said to wait until after the scan and the doc will send me a letter of where we go next. As you can tell not sleeping well at all.

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    Will phone Macmillan when I get the news if it&#39;s bad I guess. until then we&#39;ve been in touch with doctors Mps and DWP and no one wants to help at all.

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    Today I had 6 crackers and butter. lots of water to drink and a couple of blackouts and shakes. my head is thumping and my mouth sore.

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    Spent most of my day in bed again to keep warm. now waiting for housing to replastering bedroom as it&#39;s falling away and dampcourse has gone. my asthma is terrible too.

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    Will keep you updated as much as I can as to how diagnosis and treatment is working for me and how ill and disabled people are being treated by today&#39;s society and government.

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  • FormerMember
    FormerMember

    <p>So sorry to read your blog. You are being very brave. It is the waiting that is the most difficult to deal with isn&#39;t it. Xx

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  • FormerMember
    FormerMember

    <p>Yes I&#39;m waiting and thinking the worst. my daughter has just told us she&#39;s expecting and I&#39;m wondering if I will even be here to meet my new grandchild. 

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    We haven&#39;t told her has she gas had miscarriages and don&#39;t want to upset her and anything happens.

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    Saw my grandkids today it was great but sad when they left too. my life had just started to be happy as I haven&#39;t had the happiest life and now this. just got to try to be OK and hope it&#39;s going to be OK. I want to be here until I&#39;m 78 and my grandkids are happy and have good lives.

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  • FormerMember
    FormerMember

    <p>Designleo - you are doing brilliantly. We can only take one day at a time. We had to go to hospital today to get stronger sleeping pills for Brian - and they stressed live for the moment. We are doing stupidly mundane things to pass the time but it helps us stay sane. Really do understand how you are feeling and sending you a big hug. Keep going. Xx

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