Worrying about Dad


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    Hi all,
    I’ve just joined as I realised I needed to turn to someone eventually to cope with Dad’s diagnosis. Dad was diagnoses with Multiple Myeloma about 3 weeks ago. I was visiting and was sat in the ward room with Mum and Dad when the docotor came in to break the news. I lost my grandfather (on Mum’s side) to lung cancer when I was 15, I’m 30 now cancer has a hold on my Dad, too.

    For me, the hardest part is the fact that this is the man who has always believed in me. Alomost everyone who sees him and me comments on how much I look like my Dad, and for me, that’s an honour. I have Dad’s patience and Dad’s wit. I have his passion for psychology, his love for woodwork and his perseverence, so when he started telling me how much he loved me in a phone call, I knew that things weren’t normal.

    Dad has good days and bad days. Before he started treatment, he was eating and drinking regularly, always commenting on how good the hospital food was. He is now on regular dialysis, platelet and plasma transfusions, “dex” and radiotherapy. He starts chemotherapy (VTD) tomorrow and I’m really worried that the treatment will take him away from me. A few nights ago, he tried to call me at 00:40 because he was anxious and alone. Dad is never normally that clingy.

    Right now, the fact that I could lose my Dad hasn’t really sunk in. I’ve grieved him a bit but I’m fighting an appeal for PIP which has been amazingly stressful so I’m almost numb with all the stress. I know it’s sort of a defence mechanism our brains have to protect us but it’s not helpful when I need to remember what treatments he is having and what I need to get done! I know I need to not give up on him and that treatment for myeloma is quite effective, but it’s hard to stay positive. Each day I ask how things are, things seem to be bad and not getting batter and sometimes even getting slightly worse. I don’t want to lose him but I don’t want to see him suffer either and I’m finding it very hard to deal with that, PIP and feeling “surreal”, like this can’t all be happening to me. Everytime I get emotional I keep saying “I just want someone to wake me up from this nightmare.” I have the strength to fight PIP and I have the strength to care for my Dad, but not both, not at the same time. I’m not that strong.

    Sorry for rambling on.



    Oh Helen my heart goes out to you as you have had so much to take in and adjust to in a short time. You obviously love your dear Dad and it must be so hard on lots of fronts. You could do with some support from a Macmillan advisor who helps with PIP stuff for a start so you need to ask the staff who will point you in the right direction. I only started the 1st day of my 1st line of treatment of VCD yesterday so am not the best one to comment on how your Dad will cope. I’m sure he’ll be in good hands and the seemingly muddy pool of how things are will clear.You seem very overwhelmed and I hope you’ll get some helpful and comforting responses. Please know you are not alone and I send caring thoughts to you..
    Love Deirdre x.



    Deirdre thankyou so much for your kind words. You are completely right that I am finding it very overwhelming with Dad, yet, in an odd way, kind of numbing. The stress is so intense that it almost feels like it can’t be real, yet real it is. Last night I woke up feeling very hot and my heart was racing, I was in the midst of a nocturnal panic attack and dreaming that a very strict judge had more or less branded me to be a fit and healthy person and not “that” disabled, even though I’ve been disabled all my life and I’m having painful leg cramps as we speak. I guess I’ve always compared myself to people who are.. can we say.. more disabled? I mean, I don’t need spoonfeeding, I’m not in a wheelchair, I can use the bathroom without help.. aside from getting anxious in vehicles and needing support, not being able to walk more than 150 metres without severe pain and needing help with preparing food (I can’t open jars or peel veggies) and having a couple of other aids and adaptations, I seem pretty normal – and of what I’ve been told, younger than my 30 old years, to boot!

    I know that my claim will be a struggle. I don’t have a paper trail of medical evidence because I don’t see anyone about my conditions anymore. There is no cure, no surgery, I just have to get on with life and living and know my own limitations.The last person I saw was my GPwho gave me two weeks of benzodiazepines for anxiety and sent me home again but she doesn’t want me on them forever because they are addictive. According to both Mum and I, we both think I’d be entitled to standard rate on both components but an appeal is going to be very hard with all that I am dealing with emotionally and I don’t know that I have it in me to appear in person. I really feel like I want to submit the medical evidence I have today and asking for a paper hearing. I really don’t feel like I could go through this. My mind is on my Dad right now.

    I do have some confidence that I’d be successful, even at a paper trial. A majority of my disabilities are from birth and they aren’t just anxiety and depression, so I’m fairly confident that if others can win purely under MH alone, I should have a good shot. But of course, I don’t want to be overconfident about that.

    I will get on to Macmillan today and ask for their involvement. It is my understanding that Dad has a Macmillan nurse now but I’ve heard nothing more about that. Dad starts his chemotherapy today,so we’re all keeping our fingers cross that it helps.

    I hope that your VCD treatment is successful and your quality of life stays full.

    With warm wishes,




    Hi Helen.. from what you say you do need an advocate regarding the PIP. I have just been through this and I wish I’d taken somebody with me. I have medical probs obviously but my prob is I can’t walk more than 50 yards cos of severe pain and also have bilateral shoulder and arm pain..both these things are not connected to the Myeloma. I was recently awarded middle rate for daily care and nothing for mobility. I do not understand this at all as that is my main problem..the injustice is hard to take in but of course like you I have more pressing problems. I really feel you need some advice from someone..just because you have no paper trail does not mean you haven’t a problem you are just good at keeping it to yourself no doubt and like me have become a little disenchanted with GP’s though we knows that they are under a lot of stress also.
    Keep updating it’s good to talk and helpful..hopefully.
    Stay strong xx



    Hi Deirdre, I’ve been down to the doctor’s today to pick up the copies of my medical records that I requested. It is a bit disenchanting because there was a tonne of letters but nothing really in the patient history, other than 3 whopping paragraphs from my visits to them regarding my anxiety. Howevef, in active problems it does list Reflex Sympathetic Dystrophy, Spina Bifida, “Phsycological problems”, hydrocephalus and “hearing aid provision”, which is good because it backs up everything I’ve said and disregards the HP. However, there is nothing in way of treatments etc that I have had, nor the fact that I’ve been discharged from amywhere. They are just.. well.. there.

    In terms of advocacy, I have contacted a law centre here in Bristol and I’m keeping my fingers tightly crossed that they can help. I’m sending the chap an absolute stack of information shortly so I will just have to see what he has to say.

    I’m completely with you on not complaining. In fact, on the HP’s assessment she said that I was pleasant and “coped well at interview”. Oh gees, I’m sorry.. I didn’t realise that being NICE was a crime now! I forgot that it was illegal to treat the nurse (who was probably younger than me) like a human being who was just trying to do her job, and probably had to struggle with thousands of applications every day. I wasn’t trying to brush it off, I wanted to empathise with her, I wanted her to see me and understand that I could see her, too, that she was just trying to do her job. I was supported by my husband for my assessmwnt but apparently I don’t have anxiety. I’ve been diagnosed with anxiety since 1999! As for my chronic pain, my doctor took me off of voltarol in about 2004. SInce then I’ve just got on with OTC stuff so that they can’t stop my pain relief. It takes 10 days to get an appointment with the good dr and that’s 10 days of intense dull, shooting pain for me – no thankyou!

    I have contacted Macmillan and I will let you know how that goes. For me and for now though, I’m back to photocopying.

    Have a good evening,




    Just wanted to let all know that Dad passed away in hospital yesterday, aged 60.




    Dear Helen, I am so very sorry to hear this news about your Dad. My deepest sympathy to you and your family. Do take care love and try hang on in there..God Bless you all Deirdre X.

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