OK, during a meeting with my divorce lawyer, she asked what will be the cost of my cancer (Polycythaemia vera (PV)) going forwards.
It made me realise that we focus on our health, emotional well being, but when it comes down to the pennies in our pockets?
I know I am lucky that several clients are giving me work still and allowing me to work around hospital appointments, but each visit is a day lost of earnings (self employed).
So, we talked through it;
Lost of income/ earning potential
Cost of specialised toiletries, face creams, sun screams, skin care products
Cost of UV clothing (who knew it was a thing?) including head wear.
Sun glasses: Boots buy one get second half price Ā£30 and no glass cases for bog standard glasses
Cost of the trips to hospital, public transport, parking, wear and tear on car
Cost of changing your diet, healthy options are dearer than processed.
and a few more others.
And I only have Polycythaemia vera (PV), so god (God allowed but not he#ll?) knows what other cancers are costing people.
My occupational therapist from the car crash looked into PIP etc and said that it looked like I was failing to be ill enough for financial help, despite the effects of it on a daily basis.
I am lucky, I can drive, walk and still lead a sort of normal life, but it is crazy looking forwards to when I cannot.
Cue @Duncan the Forumās Foreign Correspondent on USA health care comparisons 
This is crazyā¦.
Obviously I always pay closer attention to your posts as a fellow Polycythaemia vera (PV) patientā¦ but I too have never thought of the long term costs.
As a teacher, I love my job and proud to say Iām really good at it too but I hate the management and know how Iām made to feel on a daily basis has a knock on effect to how I am. Everytime I get a kickback health wise Iām like least itās keeping me away from the place.
My unhappiness and meant Iāve saved a fair amount to pay off my mortgage which at the age of 40 I was really proud of. But know there are many years to go in the tank and early retirement isnāt a thing. But I really donāt want to blow my savings based on the fact I donāt like my so called colleagues or my odd times or temporary feelings of deterioration of health
I totally feel for you @clickinhistory having to tackle the on going foray of health issues on top of having to go through a gruelling process of a divorceā¦ all I can say is stay strong and you got this!
If this cancer has taught me anything itās āanything can be round the cornerā and āanything that could be bad may be better than something even worse if that bad thing didnāt happen!ā
My hubby and i were just talking about this. He faces being out of work due to his cancer (long story and we are looking at all options but employees definitely have fewer rights than we hoped) and we were literally totting it up. We know what his 18mths off (at only 45) while he fought to stay alive cost us, we know the decrease in pay related to move to part time since 2017, we can work out lost pension contributions. We then add in lost earnings likely from now on plus no additional monies being put into pension. It reduces us to tears and panic. I dont think people can understand this if they dont experience it. It may be what it is and we just have to accept it etc but my goodness, itās unfair no matter how you look at it. I know that others experience it too hence replying to original post. I really just wanted to say that others understand, they get it and send best wishes as you work all this out especially in the face of divorce. Do look into PIP, it is worth exploring for some people - Maggieās centres often have a financial person who can help with applications - not sure if any near you of course. Look after yourself
After SSP has finished there is new style ESA that you can claim
Employees are protected by the disability act
There is the health and safety guidance
Section 44 of the employment act
These guys are on Facebook too
Hi @clickinhistory thanks so much for raising this subject, often culturally finances are not talked about and people just struggle on.
Also this can be an issue for people like a parent or parents, partners or siblings etc.
For assistance perhaps consider Citizens Advice, Macmillan etc.
When we are at our weakest, sickest and emotionally drained sometimes I find it is all too much.
There are direct costs,
How do you quantify what future costs might be?
There are the emotional costs as well?
Look after yourselves everyone and any thoughts from others please.
Such a vitally important subject, @clickinhistory. I think about the financial implications of living with blood cancer a lot and have complicated feelings, which Iāll put into words here when I can.
Suffice to say, I donāt think we should have to ration our medical care due to its overbearing expense and yet be forced to live with a healthcare system which makes that a reality.
From what I understand, bearing in mind that I grew up around the NHS then trained and worked within it later, it sounds like the government has been defunding the NHS with a view to opening up more to private healthcare. No one should have to pay more for the right to adequate healthcare, but if that healthcare isnāt otherwise available then what are folks meant to do? Quite the catch-22 
Really sorry to read that youāre being asked to quantify such a random serious health issue for something that must already be emotionally loaded and difficult to live with.
These are great and really helpful, thank you so much @2DB.
@Rammie18 sounds like you have become trapped by what you love to do and a system that tryās to stop you from doing it.
Guess that is why my lawyer is good at her job, she asked the right questions.
@judesadventures sounds like you have both been on a rollercoaster and are now waiting for the next drop or corkscrew beyond the bend. Trouble is I am not ill enough and self employment as a sole trader, we fall through the cracks. We all found that out during covid. We had to apply for either a loan or a āgrantā based on a third of your profits for the previous year. Some actually used the money to pay their tax bill, but here is the kicker, it went on your credit history, was classified as part of your taxable income for the year.
@2DB that is a great source list, perhaps someone @BloodCancerUK could expand it on the help pages.
@Erica I went through what I have already spent on Weleda skin foods (great product) sun screen, looked at how much it cost and divided it by how long it lasts, times it by the year and add inflation.
Other costs, good old Amazon and you get between 42 to 56p per mile from the Government for the ONS work, add a little bit extra for the car costs, times number of potential visits (Ā£4 return on the bus, three visits a month x 12 = Ā£144 which will soon go up when the cheap fares scheme ends) Emotional costs, lost time for stress, effect stress has on others, if people have to lose work to come with you or drive you there?
You can get a rough idea of what those costs will be.
When you factor in these are costs on top of your regular monthly outgoingsā¦
@Duncan I am glad she asked, it brings a reality to a still unreal situation. I think you will like this info from Cancer research UK;
In 2022/23 we spent Ā£176m on research projects focused on specific cancer types. Hereās how that breaks down for spend per cancer type.
Ā£23m lung
Ā£21m colon and rectal
Ā£20m breast
Ā£16m leukaemia
Ā£12m brain
Ā£12m other
Ā£11m pancreatic
Ā£9m prostate
Ā£7m oesophageal
Ā£6m ovarian
Ā£5m kidney
Ā£5m non-Hodgkinās lymphoma
Ā£5m melanoma
Ā£4m liver
Ā£4m myeloma
Ā£3m sarcoma
Ā£2m pharyngeal
Ā£2m bladder
Ā£1m neuroblastoma
Ā£1m cervical
Ā£1m Hodgkinās lymphoma
Ā£1m oral cavity and lip
Ā£1m laryngeal
Ā£1m stomach
Ā£1m thyroid
Ā£1m endometrial
Ā£1m an#al funny for a medical term and a word that is in the dictionary(handy in scabble too) it is not allowed on the site
Now put that against the lost income and taxes of those suffering just cancer.
To put those figures into perspective, that is less than some football players get transferred for or the basic cost of firing 30 cruise missiles (Approximately Ā£6million per pop) just over 3 years of MPās basic salaries based on this years figures ( Ā£54,693,600/year)
NHS was born out of great intentions and has been dying a death of a thousand lobbyist cuts ever since, because profit in the bank is better for the health of the nation (trickle down is a wonderful thing) than actually having a healthy and therefore better productive, population.
Well at least it took my mind off the breakdown of a marriage in to the worth of chattels and house
Been thinking about the financial side of living with and surviving blood cancer. What a sobering subject! I hate it 
Having grown up with the NHS it always seemed āfreeā apart from when prescriptions started being charged forāremember when pretty much any prescription was just Ā£7?! Being a vegan from childhood I tended to use ācomplementary medicinesā, like for coughs and colds and so on, and rarely used any medicine until my heart attack, so I maybe took the NHS for granted as a young adult and was used to buying herbal stuff as it wasnāt available on the NHS.
Now I really, really miss the NHS, especially its āfreenessā, although of course itās never been free as taxes pay to fund it. I understand that in many ways itās a total shambles, but I also know this is not solely down to NHS mismanagement. When I trained in the NHS and went on to work within it I could see what a great idea it was how it linked up services and referrals and put our patient information and test results into one place for our various doctors to cross-reference. That system was admittedly a bit shonky when I worked in the NHS, but it was early days for everything going online, way before the pandemic forced us all to rely on the internet more.
My experiences with healthcare have obviously broadened since moving to the US, and Iāve experienced both truly free and utter rip-off treatments in both New York and California, like the time I went to a local hospital in Brooklyn with tooth pain and they just whipped 2 wisdom teeth out there and then for free, or the time I got charged twice for the same blood cancer procedure and had to be āpleasantly assertiveā (Ā©ļø @Erica 2024!) with the health insurance people before they corrected their cost!
Now my healthcare is based on health insurance fees that change according to what my other half and I earn, and oh my what a mess it can be. Itās literally unbudgetable. Try as I might, there is no way to predict and thus budget in advance of treatments. My health insurance treatment costs change depending on current level of insurance, how many treatments youāve had that year, whether the receptionist logs the treatment accurately for pricing, so many fiddly pricing detailsā¦ We changed health insurance this year due to my being diagnosed with Polycythaemia vera (PV) last year and wanting to decrease 2024 copay costs (what you pay upfront prior to treatments, for example paying $40 before having a complete blood count done). Then there are procedures and appointments which can be super expensive regardless of insurance, like the bone marrow biopsy needing a skilled practitioner, or my haematologist diagnosing me over a 20-minute video chat which somehow cost over $1000. Itās infuriating and I get the impression that many people here just donāt bother checking the random charges that we get, even with Obamacare subsidising healthcare costs, because itās overly complicated for a reason. Donāt let the NHS get like that!
So despite my complaints, I feel fortunate to live where I am, where there are university hospitals, up-to-date understanding of blood cancers, and apparently an entire blood cancer conference is held just a bus ride away. It feels like Iām getting my moneyās worth from what I pay for treatment, and now that my need for phlebotomy is settling down I pay less. Bonus!
Still nervewracking to think of the expense should I need emergency treatment, or I accidentally get seen by a doctor who doesnāt practice āin-networkā as in via my health insurance. Apparently even ambulance paramedics here can charge randomly massive amounts if they arenāt contracted with the hospital you get whisked off to! I hate the health insurance nonsense here, and yet ours is one of the more logical and fairly priced ones. Argh!!!
But, like you say, itās the incidental aspects of living with blood cancer that also adds up. The healthier foods, the time taken up for appointments, the cost of getting to and from treatment, having to wake early to attempt to get to gain sooner appointments, the extra stuff needing adding to keep us safer like the UV-protective clothing. Itās a lot, I know it wellā¦
Itās too much for me to break down into monetary amounts, and frankly too depressing. I donāt miss the chaos of seeking timely appointments in the NHS, nor the predominantly older white male practitioners, but I still wish the NHS worked better and was funded adequately again so that it could be the pioneering health service we know it can be. Doctors here talk to me about the NHS with awe, imagine that?! It can still be fixed, it just needs a lot of people to vote differently!
Anyway, thatās possibly a lot of vague words and not a lot of facts and figures. Not my forte, which is why I dread anything relating to health insurance here. I think youāre wise to think about the costs of these health issues we have, @clickinhistory. For me it helps me feel grateful for what is available. I think thereās pros and cons to different healthcare systems and that the NHS is not at its best, but itās rooted so positively in the collective British conscience that I do believe it can get over its decline. Just donāt quote me on that, I have no ideas as to how!
@Duncan I remember a BBC ( I think) series on the NHS done by Sir John Harvey Jones and a follow up one years later by another business leader and both came to roughly the same conclusions, money was not the problem in the NHS, it is the way it was run by the people in it, from the cleaning contracts to the top surgeons, the questionable relationships with private companies and the bureaucracy of government and civil servants ( many creating work to justify their own jobs) .
If you are getting Ā£161 billion a year, then if you are running at a loss, where are you going wrong?
One way is to stop hospitals paying business rates (note that private hospitals run as ācharitiesā can save 80% on rates.
Right off to see the nice leeches and smile sweetly enough that a cuppa and a sandwich appears 
Hope it goes well today! Just off out to try using a GoPro during a hike so Iāll reply properly once Iāve caught my breath and figured out how to turn it on/off 
@Duncan look for a little button, then throw the gopro at the nearest rock, stamp on it and throw it in the bin and buy a cheap none branded one off Amazon
The leeches have discharged me until I see the doc in March. Side effects are there, but counts are down, so they donāt want to over do me like last time.
Had to be shown how to work the GoPro as itās borrowed from my other halfās workplace, but thankfully it only has 2 buttons and was pretty indestructible on previous hikes 
Sorry youāve got some side effects today, but Iām glad to hear your numbers are down. Success! Now time for a treat 
lime cheesecake and a liquid malt
Also by walking I saved Ā£8 and I got a free sandwich today, Ā£3 saved.
Guess who lived in Yorkshire for a few years
So you got all the good fortune with that free sarnie and saved money and I got blocked on my trail due to unsignposted bridge maintenance! Fortunately it wasnāt anywhere too remote, but now I enviously want lime cheesecake to make up for my aborted hike 
@Duncan forgot to add, it tasted great and with less calories as it had an orange reduced price ticket
Another hidden cost is the cost of lost days, when you had things lined up for pleasure or work or DIY and your fatigue or tiredness means you just cannot do those things that day. You then feel the pressure to make up the time, the chores and the frustration leads to stress and a job that could take half a day takes a two days.
Oh yes I know those sorts of lost days. PTSD has been a lot like that for me, having to spend so much time regulating anxiety that many hours were ālostā to that. Now the anaemic weakness is doing similar, making me double guess whether Iāll have the energy to complete stuff. Very annoying!
Surprised myself yesterday though, speaking of DIY, as I scrubbed clean and sanded a whole old wooden filing cabinet Iāve been meaning to sort out, and even repositioned furniture for it to fit. Hey presto more storage and a tidier deskā¦ for only about a week, no doubt!
Today I finally got round to changing GPās, more time away from work, at least it is close enough to walk to, the lady on the counter looked down at the fact I had ticked cancer, puzzled frown over the name of it (Polycythaemia vera (PV)) and you could see it almost, how much will this cost our practice?
Another unseen cost, the extra pennies spent on fighting of @Jimbo165 type lurgies as they last longer, sorry Proctor and Gamble, we got there first
Can totally empathise with thisā¦
I feel like there is a certain stereotype of what people think people with cancer look like/act like.
Like saying alone that you āhave cancerā but donāt fit the look seems to be queried or dismissed.
Imagine it being like having a blue badge and having legs