Hi everyone, been a while since I was here and lots changed. I was originally told I had OC however they later discovered that was PPC, I am 35 and am at stage 4 b as had malignant pleural effusion. ,I like others had ascites, that alongside the fluid on lung made walking impossible and life was pretty poor however since having chemo, I feel so much better, the fluid having been drained hasn't returned and the chemo appears to be alleviating my symptoms my question is this, I applied for PIP when I was really poorly and have just got my appointment with the PIP people, im really worried that I wont qualify for any financial support as I feel ok, im tired from chemo etc but im no way as bad as I was? can anyone tell me what to expect from these meetings, my symptoms, im told will return as the chemo is palative care. any info would be great
Leanne xx
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I can't really help except to say (and this is for the benefit of the application) you now have a long term chronic illness and even through you feel good today you certainly will have times when you are up and down. This must be taking into consideration when they are processing your application. xxx Trish
I've just had visit from dept work and pensions, regarding the same. She told me not to put on form or tell them about the 'odd good days' focus big on low and bad days. They're not interested if can't wash, iron clean etc. it's all about your lack of personal care and mobility. Tell them if say you can't prepare meals or bath on your own in house (as me sometimes, due to low blood pressure, dizziness etc. also I go up and down stairs sometimes on hands and down on bottom on weak days.
Thanks Trish, in fairness i do have up and down days, think im still coming to terms with the illness, being misdiagnosed then told one thing different to another, prior to this I was, what I consider, a young, immaculate, proud, career woman and now I have no hair, feel shattered all the time and rely on hand outs, with the added stress of having 2 teenage daughters, although im grateful to have an amazing husband and family am scared I wont qualify for any financial support to contribute to the family. hopefully they will see the bigger picture when assessing my claim.
When you fill in the forms use your worst day as a guide, if you say you feel better now you won't qualify. There is an opportunity to describe how your illness affects your life, describe everything it touches, how you rely on others etc etc. Don't pussyfoot around with this, if you give them an inch they will take it.
When speaking to them be on your guard do not use the term 'good days' stick to one or two sentences like 'Chemotherapy makes you feel exhausted. completely washed out and you feel constantly shattered' List the side effects the common and the not so common if you've had a snifter of any of them make sure you mention them ie constant diarrhoea AND constipation as you can have one one day and the other extreme on others both with painful stomach cramps/wind etc. Difficulty eating, sickness and the side effects of the meds like antisickness. Remember they don't know how you feel so tell them you how you feel (as in on your worst days as Lily -Anne says), Good luck x
I got eight points six because f pins and needles in my feet and hands while on Clemo , two because of my hearing which seems to have gotten worse I now wear two hearing aids , I am 59 , I did not even fill in my form she the nurse did it at the interview , I only signed it ,I was too sick to fill in the form , ten months it took for the interview , I kept reminding myself about myself during Clemo I did have those symptoms , as I'm the same as you Likely to be back on Clemo , remember your very worse days and only talk of them ,
I get fiffty pounds a week , ten months before even interviewed , a signed form just do the questions you can , go to citizens advice they will help you
Hi the Macmillan nurse that dealt with finances did all my application all I basically told her was I was stage four advanced my oncologists name and address she sent the rest off for me apart from personal details the medical details they got from oncologist
Yes I agree with all of the above,yes your worst day,don't hold back,I also am4b,also clots on both lungs. You have enough going on,please don't worry too much. Do you have a Macmillan palliative care nurse,I have and she did everything for me,helping me with the paper work,she was brilliant,I did,my have to be assessed. Give them a ring. Bless you. I hope you get on ok,meg xx
I agree with the advice given. I have just HD to do a similar thing to apply for retirement on grounds of I'll health. HR advised me to think of my worst day and list it all. There is a big e.optional aspect as well
Hi Julie and welcome to our club lol. You'll find Annie on here too. It is good. Lots of great advice but a wee tip, look at the heading and if you think its toouch for you to read an item then don't. Take it gently. Its hard sometimes especially when we lose one of the members. Hope to meet up again soon. Had my first gym session tonight with personal trainer, trying to get my strength up for what lies ahead. Ann xo
It's great advice thanks Ann. I had only joined read that someone had passed away then there were tears ! I'm definitely on restricted viewing. There seems to be some lovely people on here. Xo
There are Julie. All different stages. You will see how some people get a longer fission than others, how some have had a colostomy bag at time of surgery or other bits removed, and all the different chemo types etc. We are so lucky too that we have family as some people are on their own. I would hate to have to go through this alone. Ann xo
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