Isolated

Hi there

I had an operation to remove a tumour (liposarcoma) and one of my testicles.  I had collateral damage whereby due to nerve damage i have chronic pain in the leg below where the tumour was removed. I now have to use a stick and am now intermittently incontinent whereby due to the chronic pain I pass water without me knowing about it until I feel dampness in my groin. During my time in hospital I contracted sepsis but it didn't become apparent until I'd left the hospital.  I felt as though as I going to die when the sepsis attacked me all of a sudden and due to this I now have PTSD with the event. I was rushed back to hospital whereby I was there for a considerable period of time due to the infection. I've been in touch with a Community Physiotherapist who arranged for me to have a bannister fitted to I could access the first floor of my property, as well as grab rails in my en-suite and master bathroom.  I also have a stool which I use in my kitchen when I'm preparing my meals and a 'strolley' trolley so I can move my meals from my kitchen to my lounge.  I'm very grateful for the items, however, I recently applied for PIP and was humiliated to be told that my conditions didn't meet the criteria for payment.  My son visits me almost everyday and assists with batch cooking, cleaning the house and ensuring that my hygiene is of an acceptable standard. He also helps with shopping and dealing with complicated matters involving myself such as dealing with bills.  I get anxious dealing with matters concerning money and he oversees my bank account with my permission.  I'm on medication both for the pain in my leg and for my anxiety and depression which I've had for many years.  I feel that things are just getting worse and feel no end in sight with how I feel. I feel guilty having my son use most of his free time after work to assist me. I feel so isolated. I also have requested via my GP for an assessment as I've admitted to myself I've classic traits of being on the autistic spectrum. I have family who've been previously assessed and have high-functioning autism. Can anyone suggest what I can do please?  

I'm sorry if things appear to be all over the place, but it's how my mind feels at the moment.

All the best :o) XXX

  • Hello Dean and thank you for contacting the online community.

    I’m sorry to hear this, you’ve been through an unimaginable amount and are still understandably affected both physically and emotionally by your original diagnosis.

    It’s good to hear that you have support from your son, he sounds like a very caring person. Family look out for each other and I’m sure you’d do the same for him if you were able to Dean. Have you discussed your feelings of guilt with him? Perhaps he can allay them.

    It’s unfortunate that you were told your conditions didn't meet the criteria for PIP. Are you struggling financially? We do have a Money and Work team who can perform a benefit/grant check over the phone or on webchat. You're welcome to call in on 0808 808 00 00 or submit a chat choosing the option 'Welfare Benefits & Grants'. They will need information about your income, outgoings and any savings/investments you might have.

    Have you joined any of the groups on the online community Dean? Talking to others who are going through something similar can help with feelings of isolation. We have a soft tissue sarcomas forum which is a space where anyone affected by any type of soft tissue sarcoma can support one another, ask questions, and share experiences.

    Is counselling something you’ve considered at all? Through Bupa, Macmillan are offering up to six counselling sessions, free for people struggling emotionally because of cancer. Within days, people who are eligible can receive specialist, remote support. You can read more about it here.

    We’re here for you if you’d like to talk more about how you’re feeling as well of course Dean. You can call in on 0808 808 00 00 (7 days a week, 8am – 8pm), web chat or email if you’d prefer. We also have a team of cancer specialist nurses here too if you have any medical questions.

    Take care.

    Alex, Information and Support Adviser

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.