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Advice please

Worried-for-dad
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I am really going out of my mind with worry my dad is 66always been perfectly healthy. 8 weeks ago was still working every day then became unwell went to gp for bloods etc and was referred to hospital who then said he needed a ct scan and endoscopy he had cat scan 2 weeks ago and endoscopy 2 days ago. 

in the last 8 weeks he has lost a lot of weight can now barely eat or drink is in sever pain and has had to be prescribed morphine is mostly in bed asleep as he’s so exhausted or if he’s up he has to lie down as it’s too sore to sit up any length of time he’s got high ferritin and crp his blood film showed high platelets he’s anemic.

the gp has told us to prepare ourself as they strongly believe he has cancer but that we need to wait on the hospital for results. How long should we really be waiting? We currently have no follow up appointments arranged have been calling and calling the hospital but getting no answers. 

he is wasting away in front of our eyes he’s so weak and we just don’t know what to do 

  • Online

    Hi Worried-for-dad,

    A very warm welcome to the forum.

    I am sorry to hear about your dad's health. This is always a worrying time waiting for results, but it must be especially worrying for you, noticing such a dramatic change in a fit man, in such a short period of time.. It is always difficult for the consultant to give another appointment until the outcome is returned to them and a diagnosis is given. Regular MDT (multi-Disciplinary team) meetings are held, once the results are back. These meetings involve all the medical specialists who are likely to be involved in your dad's care. Here they will discuss the findings and decide on any treatment that may be needed.

    Your dad hasn't been given a follow up appointment until a decision has been reached. Most hospitals will wait until they have got the results back and these meetings have been held, before contacting your dad, with his next appointment. The length of time one has to wait for results will vary from one hospital to another, as well as on the type of tests carried out. He could possibly phone his consultant's secretary in a couple of weeks to see if his results are available. They probably won't tell you anything, unless you have Power of Attorney for your dad. They cannot reveal the results over the phone, but can usually tell you if they are back and whether they have been through the MDT process. You will usually get an appointment soon after this has been done.

    Have you discussed his eating and drinking problems with his GP? They can prescribe build up drinks and yoghurts which will give him sufficient calories to keep functioning. It is only natural that he is wasting away, weak and anaemic, if he doesn't have enough calorie intake at present.

    I hope that things start to move for him soon. There's nothing worse than sitting in this "unknown" state. The sooner you know something, you'll be able to start treatment.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine 

  • Offline in reply to Jolamine

    Thank you I honestly am struggling with the thought that we really will still be waiting for weeks. He has given written permission for the hospital and the gp to speak to me as he just isn’t well e nough he also has a sore throat and trouble swallowing as well as a small lump on his neck. The gp has been really good and has prescribed nutritional drinks but he’s still struggling with them as his ummy constantly feels full so he isn’t managing to get much in and what he is getting in he’s sweating out. If something doesn’t get sorted soon am not sure what to do he’s lost 14 kgs in the last 6 h weeks

  • Online in reply to Worried-for-dad

    The fact that your dad has given written permission for you to speak to the hospital staff and his GP should make things easier. Have you spoken to his GP or his hospital carers and expressed your concerns about how fast he is deteriorating? The main thing to concentrate on, especially in this hot weather, is to keep him hydrated with plenty of fluid. I know how difficult it can be to persuade someone who doesn't want to eat or drink to take anything, but keep insisting.

    As I said in my previous reply, waiting times can vary. My hubby has recently undergone a flexible sigmoidoscopy, an endoscopy (27th May) and a CT (6th June) scan for similar complaints. \\\they told him that there were nodules present in both, so they took 9 biopsies at the time of the procedures and we were told that we would see the consultant in 3 months. We received a letter last week telling us that they had found diverticulitis and Barrett's Oesophagus but no cancer. We were told that there was no need for further consultation, but we could get re-referred if the problem worsened. We are now waiting to see his GP, as this doesn't help with the fact that the only thing he can manage to eat is soup. The palliative care doctor has just contacted his GP asking him to supply the build up drinks, but I'm not sure how well he'll manage these, as he constantly feels full. He is also Diabetic, so his sugar levels go crazy when he doesn't eat. Sometimes, we just have to advocate for ourselves, but it's not always easy!

    Kind regards,

    Jolamine 

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