Dealing with finances after diagnosis

Hi James, thanks so much for your post, you really show what it is like if you are self employed and need treatment, it must have been a scary time for you financially, let alone the fear and anxiety of your diagnosis and treatment. Did you have any support or help from anyone?

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Hello @James,

Thank you so much for sharing your experience with Hodgkin lymphoma and i am so pleased to hear that you are now clear of cancer. Congratulations on getting back to work as well, it sounds like a huge achievement.

You mentioned that you had to sell your taxi to have enough money to make it through treatment. Managing financial difficulties is often a concern for people going through treatment. Would you be happy to share what helped you during this time? It would be incredible valuable for others who are in similar situations.

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Can i ask anyone on her about pip,my boss said,dont bother your not needy enough,hurt me alot because I need tremendous amount of help that I didnt before. She said at work your fine. Then went onto say ive known people claim when they dont need yet,im not saying you are. Didnt sound like it,thoroughly depressed about that conversation.

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Hi Rebecca. From what you have said about your workplace in other posts you seem to be blessed with a workplace similar to a couple of places I worked inā€¦obsession with targets and no thought for the people working there.
One thing that I realised a few years before my diagnosis is that you have to stand up for yourself and in what you believe in. I think this stood me in good stead for when I became ill. I used to be one who just got on and took the line of least resistance, but then the word ā€œNOā€ entered my vocabulary. Getting a tougher shell certainly helped when I became ill. I asked for a 2nd opinion at a different hospital (and action was immediate and saved my life) and complained to a health trust when a problem I was having was dismissed as insignificant by one doctor.
When dealing with authorities you really need that tough coat. Certainly I have heard of people who have applied for PIP and been refused. I havenā€™t gone that route yet, but if you look at an earlier post on Aug 10 Dan has good advice. Have a look on the gov.uk site and see whether you think it is worth applying, and as Dan says, if denied the first time then appeal. Just remember you have to give worst scenario.
Final wordā€¦your boss does not have blood cancer. She is only bothered about about how your absence will muck up her budget. She is not really bothered about how well you are coping, or how exhausted you are when you are not there. Good luck

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Thanks. I appreciate your advice. Sometimes I feel like a leper,and because i have a hidden illness everyone seems to forget i have pain and fatigue. Im not going to bother with pip,yet i think itā€™ll be alot of aggro for nothing. Ive only just found out i can get free prescriptions.

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I have had CLL since 2003 and I have been a very lucky girl to have always been on watch and wait and therefore manage the symptoms I was diagnosed with on a daily basis, especially the fatigue. I am sure there are people who question whether I really have got cancer as I have not had any treatment. Yes, the hidden illness. A few years back I broke my arm, and admittedly I had a lurid blue plaster caste, but I have never received so much help and sympathy in my life, I had to laugh. When you are at your sickest, weakest and least able to deal with stress why should you have to really fight for what you are entitled to? You also do not know what you donā€™t know in the way of entitlements.

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I think I had posted about getting the medical exemption certificate in an earlier post. This has to be renewed every 5 years, but recognises that treatment causes long term effects, and will cover all your prescriptions. Unfortunately opticians and dentists are not covered. Perhaps get in touch with MacMillan to check that you are getting everything you should,

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Do you only get free prescriptions after treatment and not before?

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Hello @NewYork2011,

I am so sorry to you hear that you feel your boss didnā€™t believe you needed help. It sounds as though you were feeling unhappy having the conversation with your boss regarding finances. Dealing with finances after diagnosis is quite a common issue with blood cancer patients. Were you able to reach out to your HR department during that time?

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Hi. We dont have a HR at my place of work,unfortunately its a small private nursery, im on minimum wage and i do 2 managerial jobs.

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Hi, you really highlight the working conditions of so, so many people, thank you. People find it so difficult to talk about short or long term sickness and finances, but the fear and anxiety about long term sick leave and job and financial insecurity is massive. It is really, really scary, the impact on yourself and family can be life changing and then the problems of going back to work or getting a job can be endless. Any help anyone can give would be really helpful?

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Hi, you can get free prescriptions as soon as you have diagnosis. I think you get form from GP and they sign it. Ten years since I applied so memory might not be correct. I also worked in a private nursery and remember the phone calls at home if I was ill. Even though I was part time I often had to cover as they could not keep staff. I walkedā€¦

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Our staff is a group of 5,we cover for each other. When i have hospital days i dont get paid,my boss says i can take it as a days holiday, i get 6 free days holiday a year,i dont see why i should. I do 3 days 8 to 4 and 8-1 on thurs and fri. I cant afford to cut back anymore even with the chronic fatigue.

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Hi, I cannot help on rights etc. but how does it make you feel being in that financial position and having to take hospital days as precious holiday days?

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I dont know any rights either Erica. I know i put in 100% just like the other staff so im not letting anyone else do my work. With this you learn new things every day.

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Morning, PIP can be a hard benefit to claim - it can be quite upsetting to focus on how much we struggle with, when we often get used to putting on our brave faces and managing everything.
Itā€™s also quite common to not get awarded it at first and have to ask for a mandatory reconsideration or appeal. I canā€™t remember the % but a lot then get awarded at the reconsideration/appeal level.
You may be able to get help as others have mentioned via CAB and Macmillan. You can also get more on-line info from the Disability Rights site.
Itā€™s also really hard when others donā€™t realise what weā€™re going through because we may look reasonably well.
Take care and I hope you get a positive outcome. :slight_smile:

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Thanks so much thats hopeful to hear,my husband works full time,i do 3 days and 2 half days as i cant manage anymore, but thereā€™s so much i cant do now which hes doing on top of his work. We remain positive and upbeat.

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Hello @NewYork2011,

Thank you so much for sharing and it sounds as though the both of you have your hands full. How are are feeling?

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Hi Joshua,since being offered radiotherapy treatment, which i turned down for now,ive cut my work hrs due to the fatigue,i do 3 full days and thurs and fri half days. I found going every 3 mths for a check up and bloods done was too much,and i asked if i can go every 4mths instead. I feel now i can have a longer period between visits and claim a bit of life inbetween. Also my husband and I will go on our own, my mum used to come but the radiotherapy consultant said she felt my mum was so pent up it made me more indecisive,its a hard thing to do as its the last thing i want to do is shut her out. Sometimes it feels your in an uncontrollable situation.

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