This week my dad finished a 2 week course of radiotherapy. It is a cause for celebration because he has reached yet another small milestone.
He has a brain tumour, and he is fighting a very hard battle. During this journey that he is currently going through, I have made a number of observations of how his illness is impacting not only himself, but everything around him, and my hope is that you’ll learn from his story and be prepared just in case (but I truely hope that you’ll never have to go through something like this).
With a 1 in 2 lifetime risk of having cancer, it’s likely to affect us all either directly or indirectly at some stage.
My dad was diagnosed in 2004, and at the time, his doctors were not hopeful. To make things worse, he had a young family (both me and my sister were still at secondary school) and he was only in his 40s at the time.
My dad had surgery and radiotherapy and needed a lot of support from his oncology team to get through it. At the time he had also been signed off of work due to having seizures. This was the first financial blow he experienced.
DVLA and Livelihood
When someone has a seizure for the first time, they must inform the DVLA who take away the person’s license. If you drive a car or a motorbike, you have to stop driving for 6 months (assuming you only have 1 seizure. If you have more, you lose your licence for longer. Those who drive a lorry, bus, coach, taxi etc, have a much much longer ban (5 years at least!!).
So if your job involves driving, and you have a seizure, that’s your job gone for at least 6 months, if not more.
To protect against this, make it a priority to have some kind of fund in place (3-6 months), and/or an insurance policy that pays out if you lose your job through illness.
Thankfully my dad was put onto medication and he stopped having seizures. Eventually he was able to go back to work, and the tumour went into remission until a few years ago when unfortunately it came back.
Independence and Freedom
The sad thing about a recurrent brain tumour is the loss of independence. The body is perfectly capable, but starts failing because the signals from the brain are not getting through. Weakness, altered sensation, loss of vision, loss of speech and loss of cognition are all routes to losing independence.
When this starts to happen, the ability to work stops. The ability to drive stops. Suddenly you’re housebound and reliant on others around you for basic living needs like shaving, washing and dressing.
And paying for care is not cheap either. Live in care costs around £800 a week, and per-hour care can be over £1000 a month for only 14 hours of care a week. So for most families, caring for your loved one is the more affordable option, and while family members are generally happy to help, it can be the most stressful. This is currently what my mum and dad have opted to do. He doesn’t want strangers caring for him, and I can completely understand that point of view.
Impact on others
But when family members are needing to take time out of work to help support their loved one, this has an impact. Loss of hours at work means less pay, and potentially someone may have to leave work to become a full time carer.
Thankfully in the UK we do have a benefit system, and no matter how inefficient it is, at least it’s there.
People with disabilities can apply for personal independence payments (PIP), and their carers can apply for carers allowance. PIP can range from £23.20-£148.85 per week – think about that for a second. Could you live on this?
Carers could get £66.15 a week, but they have to be caring for at least 35 hours a week.
All of this can take time to be processed, so if someone has a terminal illness, and are not expected to live beyond 6 months, they can apply for emergency benefits through a form known as a DS1500. This isn’t well known, but is definitely worth asking about. Your GP will know what this is and can help you.
I dread to think how much money we have collectively spent as a family when it comes to my dad’s health and wellbeing! Car parking tickets, train rides, taxi fares, food in the overpriced hospital cafeterias and coffee shops, equipment, gifts, cards and prescriptions – they all soon add up….. and it’s these little costs that I usually try to avoid.
The problem is, we could all be more frugal when it comes to times like these, but who really wants to be? Somehow, buying a cup of tea with a bit of cake makes the wait that little easier. It’s a measly compensation for the stress we’re going through. It’s that one ounce of control we have over a seemingly out-of-control reality.
Yes it’s better for the bank balance not to buy the overpriced tea, but who cares? I’d rather my dad is fed and watered when we’re out than not. It might not seem like a very Money Doctor thing to say, but until you’ve been in that experience, it’s hard to explain why all the normal “rules” go out of the window at times like these.
Or maybe it’s just me?
When a family member has cancer, it also steals time as well as independence and freedom.
- Time when waiting for results;
- Moments lost in thought about what the future will bring;
- Time spent waiting for hospital transport or appointments, or to get into (or out of) the hospital car park!
A cancer diagnosis involves A LOT of people and A LOT of appointments. I’ve lost count of the number of nurses, doctors, radiotherapists and other healthcare professions that have been involved with my dad’s care over the years. And they all spent time with him and us. We have always felt supported as a family, especially so in the last few years.
So because cancer steals time, and this is the one commodity you cannot ever get back, make sure you make the most of the time you have while you have it. I’ve shared this video before, but it’s still so relevant and ALWAYS reminds me of why I’m doing what I’m doing in life.
So create a fund that you spend on fun – buy the things you want to, visit the places you’ve always wanted to go to, and have those vital life experiences. Stick 5-10% of your income into a savings account, and this becomes your money to do this with.
I’m not going to lie, I don’t really want to think about the future right now. We’re doing our best as a family to hold it together, and we have an amazing group of friends around us which really helps.
So if you’re currently fit and healthy, please start thinking about this. Put life insurance in place if you have children, have a will drawn up, get that mortgage and other debt paid off as soon as you can. While I sincerely wish that you have a full, amazing life in front of you, NONE of us really know the truth of it.
So go to work, pay the bills, but don’t let that be all you ever do – there’s a big world out there that needs exploring!
I’m so glad you read through to this point. I really appreciate it. I wanted to share the experiences that I have so been through with my family, in the hope that it will help yours.
And if what you’ve read has affected you and you’d like some help, feel free to email me: [email protected]
Sending you all the very best,