I'm Jojogingerhead, a 31 year old artist & musician based in Brighton (UK) satirically documenting the highs and lows of my secondary triple negative breast cancer diagnosis. Trying to see the light in a dark and scary situation without using the words fight, battle, journey or survivor.
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Cuts to the Cancer Drugs Fund vs Jeremy Clarkson
CT scan of liver metastasises (left most recent).
I had my first follow up appointment with my oncologist on Monday since my secondary breast cancer diagnosis back in January. I got the results from a recent CT scan and bone scan. It was a mixed bag really, the CT scan showed that my current chemo hasn’t worked and that the liver cancer has progressed, I now have 4 lesions instead of 3. But on the plus side my bone scan came back clear and there were no signs of anything sinister in my lungs, brain or anywhere else in my body. Although I will be sent for a more detailed MRI scan and ultrasound to confirm this so it’s still all up in the air really. Strangely, the original breast lump has gone and the oncologist couldn’t feel anything at all in her physical examination.
The plan now is to have a liver biopsy (which I’m NOT looking forward to as they are extremely painful) and find out if the liver cancer is the same as the breast cancer (triple negative). They are also switching my chemo from Gem/Carbo to a different drug called Eribulin in the hope that it might be more effective in at least stabilising things.
The problem with my current chemo cocktail of Gem/Carbo is that I only really had one cycle before the CT scan. It was delayed for nearly a month due to my bloods being too low, I don’t think I was on the drug long enough for it to do anything.
I am now in the position where I have to have Eribulin now or never as it’s one of 16 drugs and 25 licences being cut from the Cancer Drugs Fund TODAY. You may have seen me posting about the Cancer Drugs Fund in the last few months. Ironically on the exact same day I was diagnosed with secondary breast cancer that had spread to my liver, the cuts to the drugs fund were announced, 3 of them for advanced breast cancer including Eribulin. Luckily I was approved for the drug only a few days ago.
If you’re going to do one thing on the internet this week, please stop signing fucking petitions to reinstate Jeremy Clarkson at the BBC and sign and share these petitions to reinstate cancer drugs instead.
Secondary breast cancer: http://epetitions.direct.gov.uk/petitions/72199
Gastrointestinal Stromal Tumour (a rare type of cancer found in the digestive system): http://epetitions.direct.gov.uk/petitions/73911
It’s a true reflection of the despicable society in which we live that a petition championing fist chucking Jeremy Clarkson gets over 73 times as many signatures than one to save life saving/extending cancer drugs. The cancer drug petition I signed and shared has received just over 10,400 signatures. The Clarkson one has received over 737,000 signatures. Who knows how much time the cuts to the drugs fund has shaved off the lives of those affected but at least Jeremy Clarkson has his job back, despite physically abusing another human being.
Well done England, I hope that you’re happy with the society that you’ve created for yourself. I am deeply saddened by this and my heart goes out to all that are affected by these cuts.
I would like to include some information very articulately written by a few of the ladies from my online secondary breast cancer community that explains about the cuts in more detail. They make the following points:
1. Change the NICE criteria for evaluating cost / benefit to one that recognises the individual nature of metastatic breast cancer response & progression, rather than being based on statistical averages.
The last 8 consecutive drugs licensed for treating metastatic breast cancer have been rejected by NICE based on average life extension data. But the individuals these drugs apply to are small in number and don’t respond in a consistent way. For some a drug may not work at all, for others it may still be controlling the cancer 3-4 years later. So a cost/benefit judgement based on average life extension is simply not smart or reasonable.
The current system means drugs routinely used across Europe are not available in the UK, which has the lowest breast cancer survivor rates. One of them, Lapatinib (Tyverb) is available in 18 countries including Ireland, the Czech Republic, Slovenia and Slovakia.
As an example, I use the following case of a friend of mine, this is typical, not a rarity. Lapatinib would be the next natural choice of biological therapy, when her Oncologist concludes Trastuzumab (Herceptin) has stopped working and it’s in the same price bracket. In the absence of that option, the only remaining choice is Kadcyla (TDM1) – which continues to receive CDF funding even though it is 3 times the cost. Why not try Lapatinib first? Her oncologist says he’s had a good response using it with other patients.
2. Restore Cancer Drugs Fund availability to the full range of metastatic breast cancer treatments (while we wait for 1. above), to be prescribed based on clinical benefit as judged by Clinicians.
How will we learn more and negotiate better with the pharmaceutical suppliers if we don’t engage as partners and consumer? Even when a treatment works initially, the response changes over time, as the cancer adapts and becomes resistant to it. That’s why clinicians need a wide range of drugs to choose from and progress an individual through over time.
The five year cancer strategy in development will no doubt find solutions over time, but meanwhile 32,000 of us are living with this condition right now and 12,000 are dying every year.
Also check out this campaign from Breakthrough Breast Cancer to petition your local MP: http://www.breakthrough.org.uk/demandafairprice
With half of people in the UK expected to get cancer at some point in their lives, why are these important life extending drugs being axed? I am lucky in that I scraped in by the skin of my teeth and was approved the drug Eribulin, but I still don’t even know if that will even work. Unfortunately there might not be any drugs left to try on the NHS for my particular type of cancer. Thanks to these cuts, many cancer patients have had a price put on their lives and been handed a death sentence. Despite all of this, I hope Jeremy Clarkson gets his job back, NOT.
Update Wednesday 25th March 2015: It has now been reported that Clarkson has been sacked from the BBC after an investigation found that he did assault a producer in a row over steak and chips.
Thank you for posting this. Point one, I am flummoxed as to the logic people are applying to JC – because they like his programme, he’s therefore excempt from usual work place rules and, let’s face it, general good citizen behaviour? In my first job my manager told the finance manager to ‘eff off’ and was summarily dismissed. She was good at her job but the decision was the right one. These are the rules the rest of us live by. And secondly, much more importantly, and I apologise for spending any time on your blog discussing JC, your post is difficult reading but brilliantly put and I have signed a petition before but will check it was the same one and am absolutely sharing this now. Sending massive positive thoughts for the future. I am lucky that I don’t appear
to have secondaries from my primary BC so far but the principal that any treatment would be based on dubious life expectancy stats if I did is terrifying and my heart goes out to people in your position. If we don’t fund these drugs now, they will also not be further advanced when further development always carries the potential for cure. I am terribly sympathetic to the pressures on the NHS and thank my lucky stars that we don’t have the American health system, but incidence of cancer in the population is rising, it affects so many of us and our loved ones, we
have to find a way of funding these drugs.
I’ve signed and shared. It’s so crazy in one of the richest countries in Europe that we have access to fewer life prolonging drugs. I’m in the same boat as you and live close. Happy to meet up sometime. Best wishes x
Thank you for signing and sharing. Ohhhh whereabouts are you? Be great to meet x
Shoreham by sea, I’ll message you in FB or you can private email me. X
Hi. I was sent your article by friends via Facebook. I have signed the petition.
You are so right. I owe my life to the Cancer Drugs Fund which gave me access to the drug Avastin which worked wonders and shrank my very large tumour sufficiently for it to be removed. That was three years ago and I remain clear of cancer today. Without the Cancer Drugs Fund I would have died in the summer of 2012.
At the time of the extension of the CDF in September 2013 I was invited by 10 Downing Street to meet the Prime Minister who then paraded me to the media. Mr Cameron made a personal promise to me that others would continue to have their lives extended and importantly, that he would empower the doctors and oncologists to make the life-extending decisions.
Less than 18 months later the Prime Minister has broken the promise he made to me, Avastin has been delisted from the CDF and the accountants are well and truly in charge!
I too have started a petition on 38 degrees #keepyourpromise, the link is https://you.38degrees.org.uk/petitions/keepyourpromise, which has attracted less than 6,000 signatures and I too am disgusted that we live in a country where a buffoon who goes round hitting people can attract so much public support whilst our Prime Minister goes back on his word and signs a premature death warrant for up to 8,000 cancer sufferers annually. I also believe that Clarkson will get snapped up by Sky the moment he leaves the BBC. and probably for even more money.
Hi Simon
Thank you so much for your reply and telling me your story. I’m so glad you remain cancer free and that Avastin was able to help you. It’s disgusting that the PM has broken his promise, a fact we are sharing with our petition too. I have signed and will share your petition too. I still can;t believe the media hoo-ha surrounding the Clarkson when at the same time these drugs were cut and barely a headline was given to them. I think it will be a lot more than 8000 cancer patient affected by these cuts, many people still won’t be diagnosed yet and and when they are, they will have no access to these drugs. I utterly despair at the situation and endeavour to follow in your footsteps and draw media attention to it. I wish you all the best and thank you again for getting in touch, it’s stories like yours that we need to show the public what is going on.
Hi Jojogingerhead
Thanks for the message, thoughts and support. Hang on in there x
Hi there-
So “these drugs will be available on private prescription”…honestly you would only say something like this if you either had never experienced someone requiring 1st world treatment…or are rather fortunate that you belong to the elect few that were born with a silver spoon I. Their mouth…or you are actually intellectually challenged- as I don’t you I will give you the benefit is the doubt- and say you were born with a silver spoon in your mouth!
I myself had breast cancer at the age of 31- and was and am treated by the NHS! I wouldn’t have been able to pay for the chemotherapy, radiotherapy and operation myself…nor would I be able to pay the monthly costs of my hormone therapy which is hopefully going to ensure I remain in remission! I worked hard all my life- paid for my University tuition myself- did not get a student loan like most of my fellow Durham graduates- to invest this into some bogus hedge fund. And before I was diagnosed with breast cancer I had just manged to save up enough money for a deposits! This money has now gone- gone because I was not able to work for a year after my diagnosis- and was reliant on ssp to pay my fixed bills!
So to insinuate that people dealing with a cancer diagnosis are scrounging from the state is sick!
When you then take it a step further and start to sugest that drugs would be availbe on a private prescription- but not on the NHS- as they are not cost effective- whatever that may mean…then you start a debate over a society that is split into two classes! And really health treatment should not be based on what the return of investment is! Because those 2 extra months that one drug might give a patient, might unexpectedly be 2 years or even more…and those 2 months might not seem a lot to you, but to someone facing a terminal diagnosis they could men extra time
With their baby, spouse or parent!
Money should not be the deciding factor in this situation.
It infuriates me how such daily mail, conservative bullsh***t gets spewed all over the place. And it really pisses me of that there are dumbtwat a out there who can find the energy to sign a petition to reinstate Jeremy Clarcson- who tries to blackmail the public broadcasting cooperation into keeping him on- but find no time to actually sign something which not only supports a fairer, more just society-
But could one day extend their life or the life of a loved one!
I could rant on forever on this!!!
Jo isn’t saying they “should” be available on private prescription at all! She’s saying they shouldn’t be cut!
Spotted your blog via someone sharing it on Facebook and signed up to the e-petitions immediately. Amidst the nonsense of Clarkson, it’s good to be reminded that it is human life, opportunity and dignity that are the true measures of our society (oh and that punching/fighting with a co-worker – fails against that too). With thanks and best wishes, J
I’ve signed and shared the petitions and I wish you all the very best x
Eribulin is keeping my Mums secondary terminal breast cancer at bay . My Dad nursed her through breast cancer for a number of years then out if the blue he was diagnosed with Pabcreatic and he was gone within a year . It’s all just heart breaking . I wish u well. Eribulin is on the list as too expensive …. Not acceptable ! It’s a tough one to tolerate but mum does ok on it . The 12 others at her clinic on it struggled .
So sorry to hear about your secondaries. I am a 3 year BC survivor and as far as we are all aware I remain NED. However, the drug Herceptin that saved my life was only universally approved by NICE a few years ago. It was afforded approval after many many brave women campaigned and petitioned that all women with HER2+ BC should have access regardless of staging or post code.
So petitions and lobbying do work and i wish you well. I have signed the petition and shard on my own Facebook page.
Good luck to you.
Professor Vogl at the University of Frankfurt Hospital is a leader in his field. Google him. I met a woman with mets in the liver and he was keeping her alive. Had done for several years. Treatment in the hospital is not expensive and it is state of the art.
Both my grandfathers died of cancer, my father died of leukaemia, his sisters died of cancer (bowel, breast and lung), 2 of my mothers’s sisters have had cancers but survived. My youngest sister got breast cancer in her early thirties but thankfully her treatment worked and she has been in full remission for several years. I was told years ago that due to family history I am in a high risk category. I have been undergoing investigations since January for a firm, swollen breast. I’ve had mammograms, ultrasound and aspiration. My recent MRI showed a white area. This is in all probability caused by cysts but I am back on Wednesday for another ultrasound. Hopefully I’m okay but some people this week are going to be told they have cancer. They need people like you who are willing to shout out about these issues and try to make changes to treatment options available. The NHS is not a bottomless pit of money as some have pointed out but to tell someone that a drug that could save or extend your life exists but we’re not able to give it to you is inhuman. I have signed your petition and shared it on facebook.
Hi Gally. I’m so sorry to hear about the losses in your family, it just shows what a horrible disease cancer is. I am keeping everything crossed for you that your test results come back clear, it’s a stressful experience waiting for results, I spend most life waiting for them. Have you considered being tested for BRCA and other gene mutations (think there are 2 others they can test for)? You can ask on the NHS, I’m sure they would do it with your family history. If not, you can pay to have it done privately, I think it costs around £500 for a full screening. My geneticist gave me contact details of some reputable doctors, if you would like me to pass them on please don’t hesitate to ask. Sending you all the best wishes in the world and hoping you get the results you want x
signed this is wrong on so many levels.
Life is cruel. I lost my best friend (and bridesmaid) to bowel cancer only 19 weeks after diagnosis. I hate the way way people talk about the ‘battle’ with cancer, as, if you lose your life to it, you didn’t fight hard enough. She wanted to live but it was too far advanced by the time it was found. We need the drugs and expertise to give us a chance. i hope your petition is successful. As you have said when it becomes personal it all changes. it saddens me that the drug companies ask so much money for these drugs because ultimately there aren’t limitless funds.
As for clarkson – top gear – it’s a man thing – ‘nuf said
Signed the petitions … Hope all goes well for you, agree Jeremy c is knob and people can be led but sure he’d be promoting this if he was aware – use the publicity to raise awareness to this use him!! as I wasn’t aware and totally agree funding should be made available.. It’s such an awful disease take care x
I’ve cycled across iIndia for ‘women v cancer’, regularly raise money for cancer charities by cycling, this year I’m cycling in the welsh velethon for luekemia & lymphoma research, I started all this when I lost my husband through cancer,
Its devastating losing loved ones, and my heart goes out to you, me getting a few sores on my bum through raising money and making others aware is nothing, you have my full support , lovely lady xx
Hi Angela. I’m so sorry to hear about your husband, it’s devastating losing people you love and only something you truly understand when you go through it yourself. That’s great you are doing something positive because of it, keep those bum sores coming! Take care x
People can do both you know – my stepdaughter has a malignant brain tumor, my mother dies of a stroke and my father has alzheimers, I do all that I can to support research and care for all of these dreadful illnesses but my Sunday nights will be less entertaining without Clarkson – therefore I support him as well – lighten up
How dare you tell me to lighten up? I’ve been told that I have 6 months left to live at the age of 31 and the drugs that could extend my life are now unavailable. There are thousands of other people in the same situation yet all the public seem to care about is a celebrity getting their job back after assaulting someone. You’ve missed my point entirely, my disgust is not aimed at Clarkson (although he does disgust me), it’s at the populations priorities. I would like to bring your attention to this article that summarises why we need to care less about violent celebrities and more about human pain and suffering: http://reasondigital.com/advice-and-training/12-things-the-public-care-less-about-than-jeremy-clarkson/
Hi Jo
I completely agree with you regarding the Clarkson petition and societies response to this. Can you imagine the changes that could happen if this level of energy was directed at something that actually mattered. Petition signed x
Petition signed.
Re Clarkson…If the BBC don’t have the strength to carry out its termination policy on this guy after the “last warning” had been given then there is no hope that the organisation’s other presenters can’t be made to act honourably and in the public spirit whoever they are!
Please don’t be saddened by what you think society has become, it’s a lack of awareness that brings about what seems to be apathy.
Wishing you all the very best.
Eileen.
Hi
I would love to sign your petition, know of 2 young women who lost their lives to secondary breast cancer, but live in NZ so can’t do so.
Your cause is so much more important than that of Jeremy Clarkson – he really is a buffoon and it is awful that he is getting so much attention for a simple case of assault.
I wish you all the very best xoxox Andrea
Thank you for raising awareness of our campaign too. Everyone with GIST id going through a very similar situation. We reached 80k signatures yesterday through a handful of gisters bombarding twitter the last few weeks. Good luck with your petition.
Nicola
Hi Nicola
Thank you for commenting, that’s awesome about the extra signatures. The CDF have changed their mind on one of the breast cancer drugs already. I sincerely hope they do the same for the GIST one. It’s a shame we can’t combine both our petitions really to get more signatures. I wish you all the best with the GIST campaign, we must stand together!
The big difference here is that many many of the 750,000 will gladly give a few £ to assist with cancer research but would strongly object to Jeremy Clarkson having an additional £. Signing costs nothing. It’s when you put your hand in your pocket it counts. And I have signed your petition.
Hi
I have signed the petition. It’s a real shame they are planning to cut these drugs. It is a joke people get more involved with debating an idiot celebrity.
I have a suggestion if the drugs are not available for you. Please be aware by suggesting what I am going to I’m not trying create false hope but there is a lot of evidence to support and it has worked for some people. You should investigate something called the rick Simpson diet.
Good luck and all the best.
Hi Jo,
I am sorry that you are having to go through all this and I am sorry that you have to battle with NICE to get the drugs you need. I will of course sign the petition. It’s wrong. Sadly, people will only take action for things that are affecting them directly, so many won’t stop to think that signing this petition could actually help them or their loved ones in future….it’s just not at the front of their minds because it’s not happening to them.
Just one more thing…please cover up your personal details on your scans…..please protect yourself. There is a lot of information contained in those pictures, enough to clone your identity, which is another battle you could do without. There are some horrible, unscrupulous people out there. If you are unable to mask your details, send them originals over to me and I will mask them for you. I was a Radiographer a long time ago and know that if scans etc are going out of the hospital, they need to be anonymised.
I wish you well with your on going treatment.
Kat
Hello, thanks for mentioning about personal details. I didn’t notice but have blocked them out now although the same info is public on my Facebook profile. Thank you for commenting!
Great article. I’m helping a lady named Jemma Peacock & many others raise awareness of the petition to reinstate Regorafenib to the CDF for GIST patients.
The campaign is called #100000voices and you can find Jemma on twitter @PeacockJemma
Last night we spoke out about how someone like Sam Waller (a GIST patient) had to struggle to raise signatures to save his life yet Jeremy secured 700k signatures to save his job within hours.
We used the hashtag #SamOrJeremy for this mini-assault on Twitter and it generated thousand of tweets.
Please come and support us.
Hello, thank you for commenting and bringing the Twitter campaign to my attention. I will check it out now. I put a link to the GIST petition in my post as I really feel we need to stand together on this. Shame we can’t combine our petitions to get more signatures! One of the breast cancer drugs has now been approved which is something but I really hope they do the same for GIST. All the best with your campaign and I’ll do whatever I can to support it.
I’ve signed the petition. Bizzarely I only found out about this petition by signing the Clarkson one. Hope everything goes well for you, and the new drugs work.
if David Cameron can come out in the Daily Mail supporting Jeremy Clarkson being reinstated, then disgrace on him if he can’t do the same for these young people suffering from GIST whose lives are in the balance through lack of funding for Regorafenib!
Lives v TV ‘celebrity’? I know which I would choose. So please sign the epetition to call for this drugs reinstatement:
Epetitions.direct.gov.uk/petitions/73911. Thank you
Brave babe, I lost a great pal called Jenny, my ex wifes best friend. Take no notice of that sort of crap as you are far more important than that. I worked at the Royal Marsden as Head Chef in the 90’s and saw so many go away before their time, I cooked them their last supper with joy and splendour, hugged and kissed those I would never see again. They were the bravest people I have ever met, and never saw again, life is cruel, living is hard, make your time to be yourself……………….I have coronary heart disease which can be the same as cancer in such cases, live what life you have left, as if your life is all that is important.
I lost my wife to breast cancer with spinal metastases, aged 45 in 2013, about three years after diagnosis. It also spread to her liver.
The effectiveness of treatments varies quite a lot, and I hope things work out as well as possible for you.
I’ve signed the petition & send you my best wishes. xx
Hi Alan, I’m so sorry to hear about your wife. Thank you for signing the petition and for taking the time to comment. The fact she lived for 3 years after diagnosis gives me hope as I was told 6 months worst case scenario! I don’t believe that though and am keeping positive that I have many years left in me. Sending you all my best wishes x
just had tumour removed from bowel starting chemo on 23 march will sign the petition
Wishing you all the best with your treatment. Thank you for signing the petition!
Hi there signed. Jean Rudd (mother) Helen Rudd ( wife, mother of my three boys) both
Thinking of you keep the faith.
Pete
> “The Clarkson [petition] has received over 737,000 signatures.”
More than 750 million people watch his TV show EVERY DAY. That’s just Top Gear; he has a lot more presence than that.
> The cancer drug petition I signed and shared has received just over 10,400 signatures.
You don’t seem to have even 1,000 viewers in a month, but even if I spot you five times that, your petition would have twice as many votes as your audience size, whereas Jezza can’t get 1 in 1000 to come to his aid.
You have every right to be angry. I am, too. But it wasn’t Top Gear or the BBC which has been taking money away from the NHS and the people it serves.
Thank you for your heat felt and informative post. I completely agree with all you have said and share your anger over the public response to ‘celebrity’. I lost best friend to bowel cancer and I mourn every day I do not spend with her. I wonder though whether we could reach out to the Clarkson supporters (of which I am sort of one ) and suggest that they do both. Rather than condemn them -and thereby negate their feelings and make them feel guilty – rather suggest that for each comment in favour of a celebrity (or the idea
Hi Rachael. I’m really sorry to hear about your friend. Someone has commented saying that they found our cancer petition through the Clarkson one so at least that’s something!
Quite right. I’ve shared this and signed the petitions. Good luck.
Signed both petitions but your anti Clarkson things really put me off. Firstly “alleged” and secondly using hate to promote something just seems wrong. Judging society and people based on this is incredibly unfair.
Good luck though
Firstly, I never used the word hate, I said I find it despicable and sad. Secondly, why would all the national newspapers publish a story that wasn’t true? Clarkson would sue them for defamation. He has been given a final warning by the BBC after making a racist comment too. It just baffles me how people can support a man who’se been accused of violence and racism.
Shared and signed.
Clarkson didn’t actually hit anyone. No one witnessed this so it’s the producers word against his. Witnesses only observed shouting and swearing. No violence was witnessed. The NHS wasn’t designed to support the sheer volume of people and their needs, today people are living longer, requiring more care, we can cure more, help more….so it’s struggling, cuts need to be made. You could cut any service that it offers, people will complain and campaign. People expect to be given things these days, benefits, housing, free medications etc. The country struggles and the only fools are those who work full time funding all the spongers who demand free things all the time. These drugs will be available on private prescriptions after NHS cuts. The “can’t afford” something excuse is sign of the not working but demanding state we are in.
What’s the point of society if not to try and support everyone in it? Building some personification of “the country”?
How do you know that Clarkson didn’t hit anyone? It’s reported all across the national press that he was involved in a ‘fracas’ so obviously something has happened or Clarkson would be suing them all for defamation. Anyway, my point wasn’t whether he hit someone or not, I was drawing attention to the fact that a petition to reinstate him got tens of thousands more signatures than one to save cancer drugs.
People expect to be given things such as benefits, housing and a free health service because most of them work and pay their taxes most their life. Half of people in the UK are expected to get cancer yet cancer drugs are being cut and cancer services are poor compared to the rest of Europe. Something has to change and we, the people, should be campaigning for better treatment.
Hi jojogingerhead,
I nursed my late wife through secondary breast cancer for 15 years. I locked horns with the medical establishment on her behalf on several occasions.
I have signed the e-petition and I thought I’d drop a comment in here to let you know that I’m thinking about you.
Keep the faith, lady xxx
Trev (friend of Melvyn Hiscock)
Hi Trevor
So sorry to hear about your late wife and thank you for taking the time to read my blog and sign the petition. What I find sad is that most people will be affected by cancer at some point in their lives, whether they have it or a loved one does. We need to be campaigning for better cancer treatment and services now. It might be too late for me but it’s not for others.
Take care x