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Any advice would be welcome many thanks

Post transplant 2 and bit years now and still suffering with GVHD. Not as bad as it was though. So i am 30 years old and diagnosed with cancer 2016. Single and have no kids and still living at the parents house. Which proper depressing now as i want own place and want to crack on with my life, get a girlfriend etc and have a job so i can get a house.

I have been in contact with Maggies center for some advice and the only way i can be living on my own if i get kicked out.

With the current situation of me having GVHD etc . looks like i will be staying at my parents house for rest of my life. As we all no there is no end point of GVHD as the doctors will never no.

and very rare me seeing other patients while i have ECP with the same age as me single and still living with parents.

I haven't a clue of what to do.

Chrissy58

Answers

  • edited February 9

    Hi @acripps91

    I'm glad that you have found the Patient & Families Forum. I'm Claire from the Patient Services team and wanted to let you know about some of the support available from our team, which might be helpful to you at this time - particularly the information we have on our website here: https://www.anthonynolan.org/patients-and-families/recovery-life

    We also have a free Telephone Emotional Support Service - specifically for stem cell transplant patients and family members. This is provided by Working to Wellbeing – a team of wellbeing specialists including qualified psychologists, with years of experience providing support for stem cell transplant patients. If you think this might be helpful, email our team at patientinfo@anthonynolan.org to arrange an appointment and find out more here: anthonynolan.org/tess/. They can also try and support you into work, if this is something you would like to do.

    I also wondered if you might benefit from linking in with Shine Cancer Support, who provide a lot of peer support for those affected by cancer and in their 20s, 30s or 40s - you can see what they have available here: https://shinecancersupport.org/

    If you’d like to have a chat with us, please do call our Helpline - we are open Mon-Fri 9-5 on 0303 303 0303.

    I hope this helps.

    All the best,
    Claire

    chelle_16
  • Hi Claire, Thanks for replying. i will look in to that shine support. I have had a counseling before through the hospital i go too. i have also been in contact with work2wellbeing last year.

    Thanks
    Alex

    Claire_AnthonyNolan
  • Hi Alex
    My name is Michelle and I am on of the Online Community Champions, here to support patients and families going through treatment. I am also a patient myself, also diagnosed in 2016. I had poor living circumstances prior to my diagnosis of lymphoma and histiocytosis.

    Sorry to hear of your hopelessness, I am unsure where you live but I wonder if you have also explore PIP (Personal Independence Payment) that is designed to help those with long term conditions live a life with more quality.

    I managed to get out of the family home just before my diagnosis through the local housing association which are easier to get housed with than the council housing lists. When diagnosed i then had to find ways to pay my bills and rent as i had lost my job. You situation although different to mine has areas that could be supported. I hope you find the below resources helpful.

    What is PIP?
    "Personal Independence Payment (PIP) can help with extra living costs if you have both:
    a long-term physical or mental health condition or disability and;

    • difficulty doing certain everyday tasks or getting around because of your condition
    • You can get PIP even if you’re working, have savings or are getting most other benefits."

    https://www.gov.uk/pip

    This government website may help you explore this as a viable financial option to support you in your daily life to find some quality of life outside of the family home.

    Finding some identify outside of your ECP and home life would be beneficial in decreasing levels of hopelessness but PIP can also help towards living costs if independent living is on of your end goals.

    charities such as turn2us also provide invaluable information around benefits and work that you may find helpful
    https://www.turn2us.org.uk/Your-Situation/Ill-Injured-or-Disabled#Benefits

    Citizens advice bureau can be very helpful in trying to support you in finding housing association accommodation which can be easier to acquire than going through council housing .
    https://www.citizensadvice.org.uk/about-us/our-work/advice-partnerships/cancer-support-service/

    These are resources that you can explore and consider to see if they would help you find some value and purpose in life and support you in you housing situation.

    If we can be of any more help please let us know, there is lots of information both Claire and I have provided.
    Please stay in touch if you find it helps.

    best wishes
    Michelle

    Tom_AnthonyNolanClaire_AnthonyNolan
  • I will Look at those Links thank you Chelle_16

  • I have been in touch with Shine when you mentioned back in feb and with in a week i was on IT course thank you so much for mentioning the website. 2 weeks currently left on the course.

    chelle_16Claire_AnthonyNolan
  • Biggest worry is now is my C.V ?

  • Hi

    So pleased to read of your success getting onto an IT course. What are your concerns regarding your C.V. ?

    Best wishes

    Michelle

  • Hi Michelle, thank you.
    Concerns are of what to talk about your self? i haven't been at work for 5 years and my last job was an HGV driver, so i will be going in to something totally different. i have never been a big fan in the first place off talking about my self.
    and to have a cancer journey and transplant journey its difficult to talk about your self. I am also suffering constant brain frog

    chelle_16
  • Hi Alex

    I have replied to your other post.

    Let me know if I can add anything to that post.

    Best wishes

    Michelle

    Tom_AnthonyNolan
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