Oncology appointment

Hello Ian L C2e27,

It’s good that you have been given your scan results and plan although no fixed start dates yet. Your oncologist sounds positive about the prognosis although I know that doesn’t reassure at this stage. It sounds like you are going to have the standard treatment that most of us have been through.

I can imagine it’s really hard to keep working flat out when you have so much worry going on and probably not feeling great. You have a very demanding job so I’m sure that’s not easy, particularly being effectively self employed. You are right that you will want to focus on your treatment and recovery but it’s a tough situation to have to worry financially as well as about the diagnosis and treatment journey. I was employed but in private healthcare where there was no sick pay other than statutory so understand your worries. 

Maybe the MacMillan nurse can advise. I know that they can give advice on benefits.

On your previous posts I think you had really wise and thoughtful advice on how to talk to your son. That’s a tough one too but thankfully I wasn’t in that situation. 

Hope you get your mapping appointment very soon and a start date. I know you were worried about the delay but if it’s any consolation I waited 9 months for diagnosis and while it did get worse and bigger the treatment was still effective.

xx

Hello Ian

That all sounds very positive (and I know how hard it is to find anything positive at the moment) and the mapping appointment should come through quite quickly now all the investigations have been done and they know exactly what they are dealing with.  The Nigro Protocol (the treatment you are having) is very similar worldwide and has a very good success rate.  It is tough but doable, really not long and by late autumn most of this worry and stress will be in the past.

The MacMillan helpline can help you claim benefits that you are entitled to - I know that @Nikki65 definitely claimed this and it alleviated some of the financial stress at a difficult time.

If every single person, young and old, were scanned about 99 percent would have some form of harmless anomaly show up, it is just that most people don't even know about them unless they have some sort of investigation.

Please check in and let us know when your treatment starts - we have all been through it and can offer lots of tips and coping strategies.  And we are always here to offer support should you want it.

Irene xx

Hi thanks for your message.

The issue with money is that I've remarried and I have to make a joint claim and my husband has a business which is very up and down I terms of income and losses and I reckon it's going to get silly trying to jump through these hoops

Won't get pip

My ex husband has family allowance in his name which means ors difficult to claim extra for my son

I've worked hard all my life, studied all my life, never claimed a benefit, supported myself and when I need help, there's none

I changed to agency in may for a better work life balance and should I have stayed in my substantive post, id have 6 months full pay.

Luckily I can earn decent money on agency/bank so ill work up until treatment starts, that way I should have raised enough cash for 2 to 3 months off work with my statutory sick pay and my small amount of savings. I am also aware there are some people in a worse situation financially do I am grateful that this financial situation is short term

I've learnt to always rely upon myself that way I know im provided for lol

It was the plan to hsvr a few months off work early next year so tge diagnosis has brought this on sooner xx

Ian, I very much hope that you are mistaken.  I just googled

Hi Ian,

Yes, it does sound complicated but still hope you manage to get some advice. 

I also worked in NHS for years and changed to private healthcare for a better work life balance so I absolutely hear you when you look back at the sick pay and now realise that you’ll be living off your savings.  Having never claimed any sort of benefit and having always worked it can feel harsh. 

One small consolation is that outgoings went down a lot for me during treatment as other than the appointments I couldn’t go anywhere, slept a lot and ate very little!

I didn’t pursue any advice but as you are just diagnosed and about to start it is still probably worth getting some advice from the MacMillan team. 

Xx

Hi Irene

Just to note, Attendance Allowance can only be claimed if you are of pension age. PIP is for a long term physical or mental disability which makes it difficulty to do certain daily tasks or if you have mobility difficulties, and those difficulties are expected to last at least 12 months from when they started. You can’t get PIP on the basis of a diagnosis of a condition-it has to be on how you cope with daily tasks, needing help, being unable to wash and bathe safely etc.   

From experience of getting PIP, you need to produce a lot of medical evidence, and there are a lot of descriptors to satisfy in terms of how you manage things like walking, washing and bathing, eating, communication with others etc. It took me 4 months to go through the process of being awarded, so it’s quite complex.

Sarah xx

Ah, thank you Sarah.  I am already retired and didn't need attendance allowance but it is dispiriting, not to mention alarming how many hoops people have to jump through to get PIP, as if having a serious illness isn't bad enough.

Irene xx

It was just that the OP mentioned working, so I assumed wasn’t of pension age, and wouldn’t be able to apply for attendance allowance even though it isn’t means tested.

I understand the need to be thorough in deciding to award benefits or not, but it is a very stressful process when you are unwell. I’m challenging the reduction in my own award just now, and just preparing the paperwork to do that took 2 of us in total more than 20 hours, and required another 5 letters to support me from my gp, counsellor, surgeon, OH and their employer which took quite some time to organise, and in the case of the gp pay £36 for! I’ve also had to have a meeting with my MP who was horrified by it all.

It will still take 4 months to get a response from the DWP, and a further year or more if I get declined again and need to go to a tribunal. 

It’s little wonder that people simply give up and can’t face it, but as a stubborn Scot that’s not in my nature! It’s been very, very hard to do , but the untruths told by my assessor who judged me over the phone and the incorrect information she put in my report were something I could not let lie. It was incredibly upsetting apart from anything else. 

Sarah xx

That’s great that you’ve the reassurance now that there has been no spread from your original tumour & the plan for your treatment is moving forward.

Regarding being unable to work during treatment & in your recovery period I would maybe take some advice on if you’d qualify for any benefits during this time. I went to a local cancer charity & spoke with their benefits advisor & she assisted me in filling in the forms for a claim for PIP, the claim was successful & I was awarded a 2 year claim which allowed me the time of work. If you’re lucky enough to have a Maggies Centre near you they have benefit advisors as of course do MacMillan. Financial concerns are the last thing you need, you need to concentrate on getting through treatment & then your recovery. 

Nicola