HI, I was diagnosed with a MALToma, which I understand is incurable and I had been well up until 2020 when the illness spread to my lungs and I ended up having a years worth of chemotherapy, (bendamustine) , it ended my career, and the debilitating fatigue I have has meant I am still very poorly, although not currently having treatment
I currently have to submit to oncology every 8-12 weeks to see if it's returned , for which I was a nervous wreck. After working since I was 16, it no longer became feasible for me to work without time off and my employer got rid of me because of the cancer which meant I needed a year out effectively
My health has deteriorated even further since then and I now have other health conditions recently diagnosed in the last year including chronic post traumatic stress disorder , severe sleep apnoea etc
The combination of which means my fatigue is excruciatingly bad, I need to physically rest a lot and don't sleep any longer than 2-3 hours, which means I am just exhausted
I had a bit of a breakdown mentally end of 2020 and then had help to claim PIP, was a traumatic experience and eventually was awarded a the higher rate, I also get ESA, but don't have to sign on as long for work because of my condition four years later , they have beret quite good with me and not bothered me too much, I am sure the claim will need renewing but not heard anything and I am really scared and frightened about what's going to happen next and very worried, I am barely sleeping and making myself quite ill with the worry and unknown again
Whats the best course of action please ? The date of my original claim was 1st February 2021, so don't think its expired yet but id read within a year things could change for me
I keep meticulous records of letters , appointments and proof of all the above diagnoses
thanks in advance for any kind replies
Hi skinnley and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Malt Non Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, also incurable but treatable type of slow growing Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Sorry to hear about your journey and the post treatment 'left-overs' you are dealing with. I had to take early retirement 12 years into my diagnosis as my condition became very aggressive (See my story) but I am now over 8 years out from my last treatment and getting on with life although I do have my own 'left over' issues.
As for PIP and ESA..........
I was also on full PIP and was also getting ESA and like yourself did not have supply fit notes....... but yes, reviews do come along...... my PIP was extended on it's first review but eventually my quality of life improved to a point that I was advised to contact DWP and report the changes and the result was PIP was stopped......... but it did not fit the criteria and if I had not report the changes I would be been breacking the law and could well have been fined.
my ESA kept going until I reached retirement age as it automatically stops at retirement.
If you do receive new PIP or ESA (review) paperwork do ensure you get help completing it....... this could be at a Macmillan Support Centre, a Maggie's Centre or even a CAB office as these folks will help you complete the paperwork correctly and give you the best chance of the benefits continuing.
I currently have to submit to oncology every 8-12 weeks to see if it's returned , for which I was a nervous wreck. After working since I was 16, it no longer became feasible for me to work without time off and my employer got rid of me because of the cancer which meant I needed a year out effectively
...... were you sacked or did you leave on your own accord?........ by law you can't be sacked for having cancer and for needing time off...... there is significant safeguards in place for this not to happen!!!!
Always around to help more or just to chat.
