Beginning a new journey?

I’m writing this early in November but won’t be posting it for a few days. The reason being I still haven’t had a chance to talk to Nick as he’s in San Francisco with work and I don’t want to burden him with anything. But I wanted to get my initial feelings down while they’re fresh.

On Thursday, I had my routine hospital appointment. Every month I have to go as I’ve been on a trial where I’ve been given a drug called Revlimid as a maintenance therapy. I’ve now been taking it for 7 years and I honestly believe it has helped to keep me in remission.

I knew when I walked in the door that something wasn’t quite right. My consultant wasn’t quite as smiley and I could see a graph on his desk rather than my usual prescription script. It’s not necessarily a major concern but now that my paraprotein (which is what they use to measure my myeloma) has gone over 10, the clinical trial has refused to keep giving me revlimid.

I’ve known the day would come but had sort of imagined that it was still a while away and that I’d see some more rises in my paraprotein first.

So, what does it mean? Well it seems that we’ll still be playing the waiting game for a while. If it only rises by 1 every couple of months nothing will change. However, my consultant has said that coming off the revlimid may result in my figures rising faster. If that happens, I’ll be back to treatment. Now that wouldn’t worry me normally apart from the fact he gave me the details for a new trial! Which suggests to me that he’s expecting me to need this treatment sooner rather than later! Although I hope I’m just reading into things.

I don’t really know how I feel. When he first told me I was very much thinking how lucky I’ve been to have this long in remission. How I shouldn’t be too upset as it’s all been so good. How I’ve benefitted in a way other myeloma patients can only dream about. But the last couple of days I’ve struggled a bit. Memories have come back of how much weight I put on from chemo … and even more, how wretched I felt after the chemo and the transplant. I’ve enjoyed so many years of being healthy, I don’t want to go back to that. I’m nervous of what it’ll mean for the family. For my netball and racketball. For my business. For everything.

IF all goes as well as last time it’ll be 2 years of treatment and recuperation. But I’m a bit scared to believe it will be that easy a second time. Myeloma doesn’t tend to be predictable and tends to come back differently each time.

But I know I’m getting ahead of myself. The next few months will be key to seeing how things progress. So keep your fingers crossed for us that the revlimid was more of a placebo than anything else, and that the next few months go ok.

While all this is going on we’re bang in the middle of renovating our house. In the week that this has all come up, not only has Nick been away but we’ve taken 2 walls down, pulled up 3 rooms of floorboards and pulled our downstairs apart! Still, it’s actually kept my mind off worrying so hopefully it’s been a good thing for it to be happening now.

POST 30 – Keep calm…and try not to panic! The Cancer Drugs Fund

Those of you who follow me on Facebook may have seen my recent post linking to the fact that NHS England has been discussing and consulting on the future of the National Cancer Drugs Fund (NCDF).

This fund currently allows access to drugs that have not been rejected by NICE for not being deemed cost effective. A no from NICE normally means that the benefit, or the life extension the drug offers, is not enough to justify its cost.

The Cancer Drugs Fund was set up largely as a ‘political fix’ to the increasing number of NICE no’s and was only supposed to be in place for two years and to be a bridge to a new pricing mechanism called Value Based Pricing (VBP). At the time, VBP was being heralded as the solution we had all been waiting for to improve access to new treatments.

Through the CDF, cancer patients have been able to have drugs that otherwise wouldn’t have been approved by NICE. For many of my myeloma friends, it has given them access to treatments which in many cases have been their last option and literally helping them to keep them alive.

However, the increasing cost of new drugs has put huge pressure on the CDF and it has been predicting massive overspends. What is more, without having assessed drugs approved on the list for cost effectiveness, there is also growing concerns that a huge amount of money is being spent on some drugs with little or no benefit. The fund also needed to be extended because the new VBP system was scrapped with no decision on what should be done instead.

All of this prompted the recent review which has resulted in a number of changes to the fund including the news that a large list of drugs currently on the fund has been put together for a reassessment which for the first time would include an assessment of cost.

So, this weekend has seen the myeloma community (and probably the communities of many other cancers), come to life as this list included 3 myeloma drugs. The prospect of these drugs coming off the list is very worrying and work needs to be done to make sure that this does not happen.

However, all may not be lost as two of the drugs are currently being assessed by NICE and hopefully they will say yes. Failure to get these drugs approved by NICE and/or keeping them on the CDF would be a huge step backwards when it has seemed like we have taken so many steps forward in the last few years.

If I’m honest, whilst I can see both sides to the argument (that partially comes from having a husband in the pharmaceutical industry!), I am worried. Until now I genuinely felt confident that even when I relapse that there would be many options out there. And if NICE deemed that option to be too expensive, there was an alternative means of getting access to the drugs that may give me longer with my family.

Until this has all been bottomed out, there are a lot of people out there that are very, very concerned.

I think that there are some important things though to remember in all of this though:

  1. There is limited money available in the NHS

Whether it is for drugs or anything else, we only have a certain amount of money. It is the job of the government, NHS England and NICE to try to work out the best way of allocating that money and to be honest, I wouldn’t like to have their job.

What is important to one person isn’t to another. Is it better to prolong the life of one person at the expense of being able to help numerous other people with lesser health issues?

Even I can understand that if the NHS was having to pay for my drugs (at approximately £450 a day, 14 days a month) that it is madly expensive. I am lucky that I receive them on a trial and so the drug company provides them for free. But that is a huge amount of money for ‘maybe’ keeping me in remission.

Having the NCDF as an ‘open ticket’ isn’t a long-term solution. What incentive is there for drug companies to lower their prices if they know that the NHS will pay via the CDF no matter what NICE decides. The process needs to be joined up….it’s just a question of how.

  1. Drugs are profit-making businesses accountable to their shareholders.

Whether we like it or not, pharma companies are out to make a profit and in doing so, in most cases, will price their drugs to the maximum the market will withstand. It is also a risky business with lots of failure and investors need to wait a very long time to get a return as a consequence.

There has to be a balance here in some way. These companies have to make their money back before they lose their patent (that stops other companies creating the same drug). Perhaps if they were given longer terms for this, they would be able to charge less for the drugs and they would become more cost-effective.

  1. It is nearly impossible to draw a line of where different stakeholders deem a drug to be valuable.

Where and how do we draw that line? How do we say that 3 months life extension isn’t worth it for that patient who just wants to see their daughter get married, see their first grandchild born, or perhaps just wants an extra 3 months with their family and friends.

I like to think that I would understand if someone told me 3 months wasn’t good enough to justify thousands of pounds. In reality I doubt I’ll feel that way if and when it comes to it. If you are a patient coming to the end of your options, the idea of saying goodbye sooner than you need to must be nearly impossible to come to terms with. I keep hearing people asking how you can put a price on life.

  1. The CDF was and remains a political fix

Like it or not, this is partially a political game. The government needs to be seen to be looking after its money. And at the same time, 5 months before a General Election, they won’t be wanting to upset the general public, who they rely on for votes. Sadly it is us patients that are caught up in the middle not knowing what the future holds for us.

  1. We are still early in this process

Whilst there are 3 drugs that are potentially to be reviewed, that doesn’t mean that they will all be withdrawn from the list of available drugs. I don’t think they have published details of what they’ll be looking at, but it may be that when they are assessed, they are deemed to be important enough to myeloma patients to keep on the list or the drug company may be asked for and agree to a discount on the price.

The myeloma groups on Social Media are still buzzing. People genuinely feel like their hope has been totally wiped away but all is still to play for and something needs to be done to resolve this, and quickly.

My only hope is Myeloma UK….no pressure there then guys! I truly believe that we have an organisation supporting us that is passionate about what they achieve. With a CEO who set the charity up, and the Chairman having myeloma, they genuinely have a desire to make things work for us as patients. Having worked for a charity myself, I know that there is often stuff going on in the background that none of us get to see…but I know that I would be gobsmacked to find that they weren’t working tirelessly on finding some resolutions.  Myeloma UK has always said that the NCDF isn’t sustainable and I think they’re spot on. You can’t just throw money at something without addressing the real issue. The real issue here is for the government and pharmaceutical companies need to both be making compromises. And hopefully the cancer charities affected can help them with this.

It is early days with all of this. We are all a bit shell shocked at the moment. But I think we need to try to be patient and see what comes out from it. That is easier said than done sometimes though….I think the people I have talked to, including me, just want to be able to be proactive. We want to have some control and the hard thing, is like with our cancer, I’m not sure that we do. But that means that we need to have faith in the people that can and do influence – and in my opinion that means I need to have faith in the charity that supports us….which I do.

In the meantime, I am just really thinking of those people who are scared stupid at the moment. Those people who know that this is very likely to affect them. No matter what I’ve written above, I know that it is bloody scary. We all need to be there for each other…luckily I think the Myeloma community does that amazingly well.

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

Post 19 – Myeloma Awareness Week

This week is the perfect opportunity for me to write a new post. It is Myeloma Awareness Week. And I have myeloma…just in case people didn’t know!
But I think I have written quite a lot recently about what myeloma actually is. So I thought I’d use this post to write a little about what Myeloma UK do and why I am so passionate about fundraising for them. They are not like many other charities I am aware of…they 100% put patients needs at the forefront of their work. I know that if I go to them with a suggestion or idea, they listen. They have even on a number of occasions implemented things I have talked to them about. I love that about them…they aren’t too proud to learn from their ‘patients/families’. I wish all charities were more like that.

So, what do Myeloma UK do. Gosh, where to start really. Perhaps with what has impacted me on a day to day basis. Support.

1. SUPPORT TO PATIENTS AND FAMILIES

Myeloma UK help patients and families in so many ways;

  • Info days: They hold a number of info days that allow patients to meet other patients and learn about myeloma. That may sound simple. But there aren’t hundreds of people with myeloma in a town….and you can feel really alone when you have this cancer. So meeting other people is key. And they get the best professionals at these events sharing their knowledge. I have been to two, and plan to go to the new Oxford one this year. Even down the line, they help with making sure that patients and families know about what is on the horizon….without trying to offer false hope.
  • Infoline – This is crucial to many patients who don’t know how else to get the answers. There are so many people who don’t want to read the internet (and they might be right! It is often scary and gives out of date and worse case information!). The infoline has amazing staff (special mention to Ellen!) who really know how to help patients with medical and emotional information. They also have the ability to put people in touch with other patients and carers who are part of the PEER NETWORK. I help with this and I hope I am able to help people who are newly diagnosed, scared and who just need some reassurances.
  • Myeloma Support Groups – Whilst these groups aren’t specifically run or organised by Myeloma UK, they are supported by them and again, are crucial to some patients and families. I’ve never gone to one of these as there isn’t one really close to me…and I’ve found my support via the Discussion forum and in later years, via Facebook friends. But I know many people who have found these really useful.
  • Discussion Forum – This is a fantastic forum that is provided by, and moderated by, Myeloma UK. It allows patients to go online and find other people who are going through the same cancer, similar side effects and symptoms, and the same emotional questions that they are worrying about. When I was first diagnosed in 2009, this was what kept me going. I found so many friends through this site and whilst I don’t get onto it a lot nowadays (a good sign, because it shows that things are going well for me and I’m busy!), I know that it will come back into its own when one day I relapse (as I am sure will happen :-( )

2. RESEARCH

The next MAJOR thing that Myeloma UK are instrumental in achieving, is a massive impact in the research field. They are the only UK charity focused on the discovery, development and access to new effective treatments for myeloma and they invest approximately £1.5m a year on world-leading research! That puts my fundraising into perspective really, but also makes me determined to keep going with it. Without patients and families like ours raising money, this investment wouldn’t be possible. And this investment is helping to;

  • find new drugs, preferably with lesser side effects
  • find out what causes myeloma
  • understand why patients react differently to different drugs
  • potentially help to in the future, find a cure for myeloma

They do all of this by setting up clinical trials with the newest drugs, their Genetics discovery programme, and research with patients ensuring that the right areas of myeloma are researched as time goes on.

3. SUPPORT AND RESOURCES FOR HEALTH PROFESSIONALS

4. POLICY AND PUBLIC AFFAIRS

Now I’m no expert on what this actually means apart from that I know that they work really hard to build relationships with the people that they need to, to ensure that they achieve their aims and objectives. Nick works in the pharma industry, and has been massively impressed with what the charity, and especially their Chief Executive, Eric (Low) has achieved with organisations like NICE – drug progression in timescales that are highly unusual. They work tirelessly to build relationships and to learn from those around them. And their achievements have been massive. So much so, that Eric even got awarded an OBE in 2012! Without any knowledge that it had been applied for….he is far too modest to have wanted it himself.

 

I am sure that I have missed lots that they do…..they are truly amazing and I am honoured to have the opportunity to know the Myeloma UK team. I hope I have many years to do fundraising for them that can help them with the work that they do- they are truly impressive. I would also like to give a special shout out to their Chairman, Judy Dewinter. Judy, works tirelessly for the best interests of the charity, but has also been a massive support to me as an individual. She does it all quietly in the background too. I was lucky enough to make friends with Judy in the early stages of my myeloma….and know how much she throws her heart and soul into all that she does for Myeloma UK. She made a huge difference to me. All in all, they are a massively impressive team….and I am proud to be associated with them (even if I would rather not have myeloma!)

If you’ve stuck with this post to the end, thank you…..I know it was a long, serious one!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

Post 6 – What Causes Myeloma?

I would lay a bet that this is probably one of the most common questions that is asked when people are diagnosed with myeloma – that along with the “Why me?” question. After the initial shock of a diagnosis, I think it is natural to want to understand exactly what has caused such an upheaval in your life. There is still a massive fear of what is to come, despite the fact that the future is starting to feel a little brighter for myeloma patients (more to come in another post). We are still a few years at least away from the major changes that are being talked about these days….and for some patients with more aggressive myeloma than me (touch wood) that can be a scary prospect.

I can honestly say that I haven’t really ever asked the “Why me?” question….but in the early days, I did wonder whether my actions etc could have caused me to have myeloma. Funny isn’t it that human nature seems to want to be able to pin the blame on something rather than perhaps accept that some things just happen to us. Part of why I have chosen to write this post is because it frustrates the living daylights out of me when people close to me drop into the conversation that maybe, just maybe, I am to blame for my cancer. That if I had led a more puritive lifestyle, not smoked when I was younger, not drunk as much etc, that I might not have myeloma today.That said, they haven’t been brave enough to say that to my face….perhaps they know that there could be serious repercussions. I do hope that if they do ever come out with it directly, I will be able to hold my nerve enough not to let loose, but the day is getting closer that this may happen. They skirt around the issue by talking about cancer in general, but I am pretty clear what they are getting at . Of course, it doesn’t really change anything if my behaviour in the past has caused my myeloma. I still have it. I can’t change that. So what good does it do anyone? I believe it all comes down to some people feeling that is ok to be permanently making judgements on other people’s lives and whether they are behaving in a way that is ‘right’ or ‘wrong’ (although god only knows who is in a position to make that distinction).

 

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To be honest I’ve had enogh of it at the moment. None of us are any better than anyone else. We might not always agree with other people’s behaviour, and we all have the right to have opinions, but sometimes with some people, it feels like they are always judging the people around them – and often when their own life isn’t that perfect either. Some people just can’t help but share their opinion. There are probably many things that go through my head  about the people around me….but the majority of the time, I keep them there because I know that I’m not perfect…and often not right in what I think! For anything I struggle with about others, I know they probably have similar frustrations (hopefully about different issues) with me! Anyway, this post wasn’t going to be quite as personal as this, and I seem to have digressed slightly.

So, what is thought to cause Multiple myeloma? The general view is that it isn’t yet known what causes it. Multiple myeloma is known to start with one abnormal plasma cell in the bone marrow. This then multiplies and because the cancer cells don’t die like normal cells, eventually they take over and crowd out the healthy cells. Researchers are still studying the DNA of plasma cells to try to understand what actually makes a cell into a cancer cell. Nearly everyone with multiple myeloma seem to have genetic abnormalities in their plasma cells that they think contributed to the cancer, whether it is a defect in the chromosomes, extra copies of other chromosomes or missing parts of chromosomes.

Now the question is what causes those abnormalities, and perhaps even more, how to rectify those abnormalities before they cause issues. It is thought that myeloma may be caused by a mixture of genetic and non-genetic (environmental) factors. This may explain a little bit about the fact that they don’t currently say that it is hereditary. If I’m right, my children may be genetically more predisposed to having myeloma, but unless they have a certain trigger, it is unlikely to kick off for them. I think the understanding on this is changing all the time. When I was first diagnosed, they were saying that it wasn’t genetic at all….tough to hear that it might be….my faulty genes could cause a future of difficulty for my family….anyway, digressing again!

One of the key potential ’causes’ seems to be exposure to chemicals, pesticides (people in agriculture) and solvents (petrochemicals), as well as those who work in metal processing and textiles. There is much talk about the fact that many firefighters from 9/11 have suffered from the cancer…far more than would normally be expected to show symptoms. There is also an increased risk for those living near to or working in nuclear power stations. So it is likely that research will continue to focus on finding out more about what can trigger people’s myeloma – by working out how this all happens, hopefully they’ll find more about how to cure it too (a big reason why I continue to fundraise for Myeloma UK)

And just for anyone else who might think that I have brought this cancer on myself…..a study in 2011 in Boston suggested that those people who drank and smoke, had a lower risk of developing myeloma than those who didn’t…..food for thought!

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Finally onto 40 Challenges B440 – Challenge No 6: Do a pub crawl around 40 pubs in 40 hours I decided that the original challenge of having to do a pub crawl around 40 pubs in a day was nearly impossible so I have amended it slightly to allow for a few breakfast pubs the following morning (a big fry up springs to mind!) I’m hoping that once the hangover has moved on, the extra few hours will allow me to visit the additional pubs and make it a slightly more enjoyable task than having to get 40 pubs in 18 hours….3 in an hour….and pretty much impossible if you include travel too!

I still need to work this pub crawl out and am hoping to write to a local brewery and see whether I can get them to help me to organise this….it would be great if we could turn it into a proper fundraiser rather than ‘just’ a pub crawl! If I could get each pub to donate a minimum of £4 to the challenge, we’d make over £120….and for every pub that provides me with a free drink I will commit to donating £1 for a soft drink and £2 for an alcoholic drink – I’d hate anyone to think I was doing this for a free day out! The plan is for the crawl to be around the High Wycombe area as this means that I can get support more easily, and hopefully also means that we can have support at the various different pubs! This will encourage the pubs to buy in to the whole concept as they will hopefully get extra business from it.

So if anyone has any contacts with perhaps Rebellion brewery in Marlow, or another Buckinghamshire based brewery please let me know if you can help! I would also love to hear from anyone who fancies organising the Challenge….as you can probably imagine, trying to sort out 40 of these is pretty labour intensive and so far I’ve only got 3 fully ticked off on my list! I’m putting together a list of ‘drivers’ too so advance thanks to Fintan and Rakhee who have already said that they are happy to drive….hopefully we can have a few more to help in the long run.

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If yo would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070 e.g ‘DEBG99 £40′ if you want to donate £40

Just a drop of lemon juice?

Is that all it takes?

Perhaps so, take a look at a an article about converting adult cells into stem cells, that appeared in the Times earlier this week. Thank you to Patrick for finding and sharing this information, perhaps a cure really is just around the corner.

Scientists use citric acid to create stem cell ‘game changer’

Scientists have discovered a simple method to convert adult cells into
embryonic-like stem cells, which in future could be used to regenerate
anything from new neurons to heart tissue.
The technique, described as a “game changer” for stem-cell therapy, requires
ordinary skin or blood cells to be bathed in a weak citric acid solution for
25 minutes.
The method overcomes ethical concerns about using stem cells from human
embryos and side-steps the practical and safety issues presented by previous
methods for genetically “rewinding the clock” on adult cells.
The first demonstration by researchers from the Riken Centre for
Developmental Biology in Japan, was in mice, but scientists believe that it
is likely to work in human cells.
Chris Mason, a professor of regenerative medicine at University College
London, said that the simplicity of the method was “almost too good to be
true”, but added that the findings had been scrutinised by reviewers for
almost a year, leaving little margin for error.
“If it works in man, this could be the game changer that ultimately makes a
wide range of cell therapies available using the patient’s own cells as
starting material – the age of personalised medicine would have finally
arrived,” he said.
image
Professor Mason and others predicted that the Japanese team would publish
their findings on human cells “within months”, because everyone working in
the field would now be working to replicate the results.
Haruko Obokata, the lead author, said the discovery was inspired by a
similar process that allows plants to self-repair. “I instinctively felt
that we may have a similar mechanism to the plant,” she said.
Stem cells are versatile immature cells that are present in embryos and have
the ability to turn into any cell type in the body, including heart, muscle,
lung, brain and skin cells.
As adults we lose the ability to regenerate tissues from scratch, but
scientists are trying to do so artificially as this would allow doctors to
develop heart tissue for cardiovascular patients, neurons for Parkinson’s
patients and retinal tissue for people with macular degeneration.
The latest research, published today in the journal.

http://www.nature.com/nature/journal/v505/n7485/full/nature12968.html

Nature, shows that “shocking” adult blood cells by bathing them in a mild
citric acid (PH 5.5) for less than 30 minutes triggered them to revert into
an immature embryonic stem cell-like state during the following 48 hours.
The cells, which the authors call STAP stem cells, were then cultured in
growth solutions and shown to develop into fully mature cells of many
varieties.
When the cells were injected into an early mouse embryo, they were
assimilated and behaved similarly to genuine embryonic stem cells. The
technique would be significantly cheaper, quicker and simpler than the
production of so-called induced pluripotent stem (IPS) cells, which uses
complex genetic techniques to turn adult skin cells into an immature state.
In a pilot study last year to treat age-related macular degeneration by
injecting stem cells into the eye, it took 10 months to go from a patient’s
skin sample to an IPS cell therapy.
The process was less efficient in older mice, but still worked, the study
found.
Professor Robin Lovell-Badge of the Medical Research Council’s National
Institute for Medical Research, said: “It is going to be a while before the
nature of these cells are understood, and whether they might prove to be
useful for developing therapies, but the really intriguing thing to discover
will be the mechanism underlying how a low pH shock triggers reprogramming.
And why does it not happen when we eat lemon or vinegar or drink cola?”
Dusko Ilic, a stem cell scientist at King’s College London, said: “The
papers describe a major scientific discovery and they will be opening a new
era in stem-cell biology.”

Isn’t that just fantastic news! And much of the research is taking place at the very hospital I attend.

Other exciting news is my bathroom. My lovely nephew has kindly offered to help make the bathroom of my dreams come true so Cinderella will go to the ball, sparkly floors and all.

And another thing is the New BrainBox resource is almost ready to have its first copy printed out and should be at the printers by the end of the week. This will be ready in time for orders to come in before the end of the financial year. This is the plan anyway. We already have an order for 80 copies!

This is our week off, so no hospital visits. Today we will see Jem and Elliot, I have a spa treatment planned with mum tomorrow and a visit to the Cancer Hair Care place on Thursday morning, otherwise it will be my nose to the grindstone creating lots of mental health resources.

Honestly how did I ever fit work in?

Have a good week

Deborah xxx

Filed under: Myeloma, NHS, The BrainBox

The Charity Drive

Once upon a time, I was the sort of person who was immune to the charity drive. Sorry, Charity Drive. You might have got my money if you cornered me before I was a functioning human being with my fair trade cup of tea. Okay, you may have also been fortunate if you had cornered me at my desk. Maybe. It would have very much dependent on the level of my hangover and my own induced vulnerability.

These days however, I am a sucker for charity. My circumstances make it so. Macmillan, Myeloma UK, Cancer Research UK. They are all getting my cash, I do not have a lot, but I figure they offer the minute possibility of making my life better, so, where is the price tag on that? I have the credit card for shoes.

I have always given money to charity, homeless and addiction ones specifically (and still), because I felt guilty walking through St James’ Park everyday enjoying the scenery whilst people were ruining my view by sleeping on the park benches with their bottles of White Lightening. My reason for donations to charity have always been selfish, always based on making myself feel like I was doing something without really having to do something. I am sure most of those donating last week to our BBC telethon would emphasise. Begrudgingly. Your donation came not because primarily you wanted the world to be a better place, but because you felt guilty because your life was better than what you were looking at on your TV screen.

Until My Myeloma happened, I would not have given my money readily to a cancer charity, even though I had lost people to cancer including my beloved Grandpa. Many Christmases ago, I saw the Macmillan nurses come into my house and I did not care. They were not changing anything. At the time, all I thought was that my Grandpa was dying and the ladies who were coming in to change his dressings were mere window dressing. They did not change the end result, so why did they matter? People die from cancer. I associated cancer with old people, old people like the beautifully stubborn Scottish man I was lucky enough to call my Grandpa.

These days, unfortunately, I have to pay attention. I bet if you know me, you probably pay more attention now too.

The adverts on the television, the adverts on the tube, the adverts in the paper. They are designed so that people cannot forget about cancer. Cancer, cancer, cancer, cancer. Cancer. People get it. Apparently one in three do, but I guess not many of them are 28 years old. Do you want to feel sorry for us? Well, tough luck if you don’t, because the advert on ITV3 tells you that there are many people who drew the shit stick and apparently a cure is coming. It’s only coming if you give us your money. Do it quickly though, for the next ad break is in 15 minutes.

If print could be white noise, the cancer charity advert, in all it’s guises cannot now be blanked out. At least I cannot blank it out. It is everywhere. I have cancer, so I am bound to see it, Until I got cancer, I never heard it. I definitely didn’t see it. I never heard ‘cancer’. I saw the words and my association with it was, well, distant. We all know cancer is bad, but if it is not in your life, then one does not need to worry about. It won’t effect you. We know it happens, we hear the stories, but if you can carry on going to work everyday, see your family, then the connection, the empathy, is distant.

Until….

That’s right, until it happens… Until you are lying in a hospital bed and a doctor changes your life.

I hate the adverts.

I want all the cancer charities to have all the money they need. If they need a never ending pit of dosh, then they should have it, whether it is a charity supporting those with cancer or one trying to find the cures. I just wish that you did not need the reminder. Your reminders, remind me that I am not normal. That I have cancer, and that there is no cure. Your reminders tell me that not only do I need this special support and that there is no cure, but the people I love because they love me, need support. Your reminders tell me that I cause pain.

Today, I got the tube for the first time by myself since my diagnosis and my enjoyment of that was taken away by the fact that people needed to be reminded. I saw the advert. I just wanted to rejoice in my independence, but all I got instead was a reminder that people get cancer. Including me.

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Maybe one day, such a crude interruption into one’s life will be superfluous.

Please let it be in my lifetime.

EJB x

Myeloma UK funded research leads to breakthrough in understanding potential causes of myeloma

Myeloma UK funded research leads to breakthrough in understanding potential causes of myeloma.

I just wanted to share this piece of research with those of you who have supported and followed Nick and I through our fundraising! It is reporting that Myeloma UK have funded some research that has identified an inherited gene that increases the risk of developing myeloma. Now that they know this, they can look at targeting treatment for those patients.

I feel really proud that our hard work helps to fund invaluable pieces of research  like this….research that could provide treatment options for people who otherwise may have run out of them. Not only that, it hopefully means that their treatment will be focused and effective, rather than consultants ‘hoping’ for the best and keeping their fingers crossed that a treatment works for a particular patient.

So all of you who have been to our tabletop sales, or bought a raffle ticket, or come to the ball last November…..thank you. Without your support and without your pennies and pounds, research like this wouldn’t be able to take place. And thank you to Myeloma UK for choosing the right things to spend their money on. It gives all of us with myeloma a more positive future ahead of us.

(And for anyone who would like to continue to help, you can set up a direct debit via their website, http://www.myeloma.org.uk, or their is a justgiving button on my blog page)

Post about new “Blood” study from Margaret’s blog

I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management. http://margaret.healthblogs.org/2011/08/02/the-cure-versus-control-debate-a-new-blood-study/ Please read it and let me know what you think.  I’ve long thought I probably should have held off on treatment for as long as possible, and my Read More →