Mother's Day

Happy Mother's Day to all the mum's reading this, and I have spent the whole day thinking of those mums who aren't with us.

Mother's Day is the hardest day of the year for me. There's not really a way to escape from it and during the weeks building up I keep thinking about what to get my mum and then remembering I can't get her anything. I have spent the day crying and mourning her, and I wasn't going to post a blog today but then I thought now would be the perfect time to share my happy memories of her and let everyone know how amazing she really was.

This morning I decided to scroll through her facebook and look at her previous posts and it just reminded me of how sweet she really was. The majority of her posts were about her family and how much she loved us or how proud she was of us. I found a couple I really liked:

"Spent a lovely night eating chocolate, watching The Proposal, Four Christmases and Love Actually with my little girl Shannen, perfect." I'd forgotten that she always called me her little girl, no matter how old I was and I remembered the film nights we used to share with each other and just spend some quality time together.

Another was "Good Luck Shannen for first day at City College, Norwich doing journalism. Proud of you. Love Mum xx" Everyone always tells me how proud she was/would be of me but it's nice to see it coming from her.

I also found a post about a family day out she was planning. For weeks she'd been talking about it and had got a frisbee for us to play with. For some reason my brother and I were talking about the frisbee on Facebook and mum had put 'don't worry I won't forget it.' It had been sitting next to the front door for ages and for some reason she was really excited about the frisbee. When we got there, we unloaded the car and to her dismay she had forgotten the frisbee. I couldn't stop laughing as the whole day had been centered around it and we'd talked about it for ages and then, bless her, she left it by the front door and it never got used!

My favourite thing about her is when I got hyper and was being silly she'd just laugh and seem to enjoy it. When other people would be embarrassed she still looked so proud. I never ever had to question our bond...we argued a lot and I wish I could take every mean word back..but even when we did argue it would be over in a few minutes and we'd be best friends again.

I remember a few weeks before she died I was having a typical girl meltdown and saying to her I wish I was prettier and thinner and looked like other girls. I remember saying 'I just wish I was perfect' and she looked me straight in the eyes and said "but you are perfect." I'll always treasure that memory and that one comment has given me so much confidence.

She gave us so many opportunities. I never remember her going out when we were little because shesaved every penny she had to take us to America and Turkey to visit our aunty and uncle and cousin. Even though I knew she couldn't afford it she scraped together money to send me to New York with the school and when it was my prom she made sure I got the dress I wanted. With some much needed pressure she helped me to behave at school, when I was on the verge of being kicked out and she inspired me to go to university and make something of myself.

On christmases she would spend the exact same amount on us - down to the penny. On my birthday she would give me a garden party and let me have as many people over as I wanted. Considering how clean she liked the house, she never complained about throwing me a party. On my 18th she had decorated the house for me.

She was so sweet and thoughtful and I'm sure there are many more stories I could tell you but I can't think of them all now. It makes me happy we have Red Wellies to not only raise Brain Tumour awareness but to also keep her memory alive.

So on this Mother's Day, if you are lucky enough to still have your mum, give her a hug or kiss or phone call and tell her how much you love her and appreciate every tiny detail about her.

#WearAHatDay

Today is national Wear A Hat day. This is a significant day to those suffering with brain tumours of to the family members of someone who has/had a brain tumour.

As you've probably heard me mention before Brain tumours are so underfunded that there has been no major break through in research since the 1960s. For people affected by Brain tumours this is  hugely frustrating  and means that so many lives have been lost unnecessarily.

Wear a Hat Day is not asking for donations (although any will be greatly appreciated) it is simply asking for your help to raise awareness. Without people like you raising awareness people won't know how desperately underfunded brain cancer is and how hard we have to work to get its plight out  there.

Last week saw millions participate in the no make up selfie  (and some of you men wearing make up) which was fantastic. This is a little less scary so hopefully we can get a lot of people involved. All you need to do is find a hat - any hat will be fine - and upload a selfie of you in it with the hashtag #WearAHatDay. If you follow red wellies on any form of social media please tag us we'd love to see them!

Donations can be made by visiting www.redwellies.info

What Would You Do?

I am joined to a forum on Facebook where the family members of a person suffering with GBM can go to talk and ask advice from people who have been in similar situations. While I have never posted on there, it feels less lonely to know that other people have been in the same situation. But it also doubles the heartbreak knowing that there are still thousands of people in the world suffering as my mum did and we're still not much closer to finding a cure.

While browsing through the forum I came across an interesting question. Having been to the Drs with her ill family member, a woman had stayed behind after the appointment to ask the doctor how long was left for them. He replied that there wasn't long. The question was do I tell them how long they have left?

This story probably got my attention as something similar happened with my mum. She had been to her consultation and my aunt had seen in the docotors face that if the next round of chemo didn't work mum wouldn't have long left. I have to check with my aunt, but I believe she told us what she knew but not my mum. I mean, how could you tell someone you love that they don't have long left?

I remember her telling me but I was in such denial that I ingored her (sorry Hayley!). It never even crossed my mind to tell mum, how was I going to tell her she didn't have long left when I didn't even believe it myself. My brothers were in the same boat, I don't know if they realise themselves but all three of us were in so much denial that we just didn't believe anything would happen to her.

My aunty and uncle couldn't tell her. She was there big sister. I've never asked them but I doubt they believed it either. And there was no way my grandparents could say that to their daughter.

But then would mum have wanted to know? We could have asked the Dr to talk to her, but would she actually want to know? Although she had this awful disease she was making the most of life and enjoying every day. Would it have stopped her fight right in it's tracks if we had told her? Would she have been able to take the news?

She very rarely spoke of her illness to me and only ever touched upon the subject of her not being once. So I don't know what she knew, I don't know if she could feel how ill she was or could see in our faces we knew something was up. But I couldn't bare for her to feel any of the fear I was feeling deep inside. If I could have taken all the fear in the world just to make sure she didn't feel any, I would have in a heartbeat.

Maybe she was doing the same. I know she'd have done anything for her family and she'd have taken on the world so we were okay. So maybe we were all hiding one big secret that we all knew.

But if I were going to give this lady advice I'd say don't tell them. I'd rather be making happy memories than having morbid talks. When mum got diagnosed I saw her suddenly get a thirst for life and she was constantly taking us somewhere or planning something. (She always took her camera with her and took photos of every tiny thing. Even them photos are a small comfort, I look at them and see something she enjoyed and wanted to capture).

 In her final week I saw her put up the strongest fight and even then when she was semi conscious she was fighting for her independence. I feel like this conversation would have put a dampner on her spark and maybe have given us even less time with her. What do you all think?

What If...

As a daughter who lost her mother to a brain tumor/brain cancer/GBM this picture has a huge effect on me. What if the president or a Royal or even a celebrity had this diagnosis? Would sufferers still be faced with the terrifying prognosis that they face today? Would my mum have still been here now?

For those of you who don't know, and most of you probably won't unless you've done your research, brain cancer is one of the most underfunded and it recieves LESS THAN 1% of TOTAL cancer research funds. I said you'd have had to have done your research to know this because it's a little known fact and one that makes me very angry!

I wouldn't wish a brain tumour on my worst enemy. I saw how my mum suffered, I heard her groan in pain as the tumour pushed on her brain, I held her hair while she was on her knees with sickness from the chemo, and I tied a scarf around her head when she began to lose her hair. But, I can't help thinking that if a well known figure with power had been through this too then my mum would be alive now. The government would have poured money into research and even if that person hadn't have been saved the money donated to brain cancer charities would have been poured into research and there may be a cure, or at least a life prolonging treatment that would give people hope.

Brain cancer research is still back in the 60s. No major development has been found since then. No medicine that will give a sufferer a real chance at life. At present the average life expectancy for a GBM sufferer is 14 months. If they are lucky enough to be operated on they will get more time, but the ending will always be the same. I'll never understand how money isn't split evenly between cancers and if it weren't for independent charities like ours working to raise research funds brain tumour research would be even further behind than it already is...

www.redwellies.info
@redwelliesLW

CHASING THE MORPHINE:

http://www.dailymail.co.uk/health/article-2059607/Patients-face-medicine-shortages-NHS-drugs-sold-abroad.html Read the full story

After reading the article that I have posted the link to, I was reminded of the problem the nurses were faced with when coming to my sister, Lisa's home to administer Morphine, leading up to her passing away.  Each and every time, it seemed, there were phone calls made to pharmacies, including the hospital pharmacies, in an attempt to locate Morphine for Lisa.  In an effort to expedite the availability of the much needed pain killer and therefore have it ready for the nurses to administer when they arrived to tend to my sister, my uncle would be advised to pick it up from a pharmacy, by a certain time.  However, more often than not, the Morphine would either not be at the pharmacy and he would have to travel to another. Or, he would be told to return later in the hope that by this time the Morphine would have reached the assigned pharmacy. Matters were not made any easier by the fact that each day, and toward the end of Lisa's life, more often than once daily, larger doses of Morphine were absolutely necessary.

  If thoughts of  the desperate, who need to score Morphine to keep the incredibly unbearable and excruciating pain at bay, who urgently need another fix and will travel wherever necessary and keep returning until the supplier finally has the little bottle of oblivion that will course through the veins and almost instantly anesthetize...are brought to mind...then you are not far wrong!  


My uncle, in that time, was something akin to a junkie, one source sent him to another with the promise of finding a supplier.  His hands shook from the uncertainty of  the score...his imperative need to secure his stash.  The next day he would be in the same predicament, he would need to leave the house to go in search of  the elusive narcotic.  The only difference in this scenario to the conventional junkie was that he  anxiously scoured suggested locations, not to locate a nefarious dealer, but to find a pharmacy that legitimately stocked medications prescribed by doctors of our National Health Service.  And, the reason he did this was to ensure that the niece that he loved, who was lying suffering in her bed and surrounded by her children and other loved ones,keeping constant vigil, would be able to live her last few days without excruciating pain and pass away in somewhat of a comfortable state.  


Until reading the article in the link, I had merely thought that the situation that had occurred whilst Lisa was in need of Morphine was, of course, diabolical, but a somewhat isolated incident.  However, if indeed the facts of the article are precise then it is absolutely imperative that strict guidelines are introduced to unsure that patients have the drugs they need, when they are needed.      


www.redwellies.info    
 (The Lisa Wiles Red Wellies Brain Tumour Support Fund)   


http://www.dailymail.co.uk/health/article-2059607/Patients-face-medicine-shortages-NHS-drugs-sold-abroad.html

Title: The Association of the Bastard Disease that Nobody Wants To Join:  

Some call it GBM, some say brain tumour, others know it as brain cancer or grade 4 brain tumour/cancer.  It is spelt ‘tumour’ by the English and ‘tumor’ by the Americans.  Nonetheless, whatever the label or spelling ultimately it arrives at the same conclusion...it is unknown what causes GBM and there is no cure!  Before my sister, Lisa was diagnosed in August 2010 with this horrible disease I had never heard of a Glioblastoma multiforme, let alone had I attempted to pronounce it.  Now, sadly it rolls off my tongue with ease.  That's what happens when you are suddenly part of an exclusive club where not one of the members wants to belong.  The world and life as you knew it become a distant memory and a foreign sounding word embeds itself in your everyday vocabulary.  This club that you are all at once apart of equips you with strength, resilience, and an acting ability that most ‘A’ list movie stars would envy. For, the bright cheery disposition is at times required to alleviate fear and add confidence to the words “everything is going to be alright” while inwardly the heart slowly, breaks.  Unfortunately, membership does not furnish one with the adequate weapons to engage in battle against this bastard cancer of unknown origins.  The medical world zaps the mutant cells and hopes for the best, loved ones pray for a miracle and hope for the best. The victim puts faith in a medical breakthrough that will come just in the nick of time… and hopes for the best.  For want of a better scenario, it is somewhat like stoking a raging inferno with a chocolate poker… and hoping for the best.

With a lot of cancers the sufferer and loved ones can hope for remission.  They say things like “we can beat this’ “you are not going to die” and these words are true…it is possible...it can be done.  Waging war on that bastard disease, seeing it off with its tail between its legs, is no walk in the park. However, gladly, there are many survivors to tell the tale.

         

GBM is of a different ilk.  The sufferer starts off with colossal odds so monumentally stacked against his/her favour and they dramatically reduce with every passing minute.  If the victim of GBM is told that the tumour is operable then having a resection of the tumour site can buy more time.  Chemotherapy and radiotherapy will be offered, but chemo does not gel well with GBM. The possible reason for this is that with GBM the blood brain barrier is such that the chemo cannot infiltrate the tumour. Just fourteen months is the median for GBM sufferers that are lucky enough to have an operable tumour -if lucky is a word that could be used in this context, without considering it a complete oxymoron.  On the other hand, an inoperable tumour translates to a dismal 3-4 months prognosis.

Of course, when my sister was battling her disease, we made it our mantra to say the words of encouragement “you can beat this, you are a strong woman, GBM won’t get the better of you”.  For those of us that had researched GBM, we felt fake, she would never have known this, but all the same we knew as sure as the sun will set and rise each day that we were willing her to beat the disease through sheer want- that she would be the unexplained phenomenon.  After all, there was nothing of medical intervention to cling to.  

Pessimistic, I’m sure, is how others may have often regarded us during that time.  With all good intentions and an optimistic outlook, we were told of a neighbor, friend or family member that had a tumour twenty years previous and were to this day doing well.  As soon as the word ‘years’ resonates the receiver of the news is at once despondently aware that GBM is most likely not the topic of conversation.  Only 10% of GBM sufferers survive for five years after diagnosis.

The general public, as did I prior to my GBM membership, clump together cancerous tumours as one type- a single kind…a tumour is a tumour, they shrug.  Ironically, this is how they are medically treated.  GBM is able to be categorized as such, but for treatment purposes tumours cannot be distinguished to predict how they will react to treatment.  Therefore, all tumours are given the same course of treatment when it is likely that only a few will have beneficial results.  

For the past 4 decades there has been no good news for GBM sufferers and no rise in survival rate.  Cancer victims all deserve the chance of survival and we all warrant the right to have research conducted on the vast spectrum of cancers that are out there.  However, research funding for GBM is woefully low.  Such cancers as prostate or breast, to name a few, are on the rise in terms of survival rate and that is wonderful news, but what of GBM?  GBM in correlation to years of life lost is dramatically higher than for prostate cancer, yet prostate cancer receives a moderate amount of funding, while GBM funding remains severely low.

Well, as it appears that GBM will be allotted only dismal amounts of funding then my family and friends consider this to be a no-brainer …diseases are irradiated through research…research is conducted through funding…funding for GBM is procured through…what boils down to…public funding…public funding is raised through www.redwellies.info

We, Lisa’s family and friends have set up a charity called ‘The Lisa Wiles Red Wellies Brain Tumour Support Fund’ to raise funds for GBM research and at the same time increase awareness of this awful disease.  

My sister passed away October 13^th 2011, leaving behind a loving partner and 3 wonderful children.  Those she left behind will forever know the name Glioblastoma multiforme.

For us GBM is synonymous with grief, anger, frustration, heartache, and longing.  We will remain fully fledged members in the club that nobody wants, or should have to join!  Perhaps, one day with help from the generosity of the general public, the association of the bastard disease called GBM will be closed to any new members.        

 Lw.rwellies@yahoo.com

'Fat Cat eats Lab Mouse world'!

Isn't it sad when the profit margin of big pharmaceutic business cull the population by selecting the ones to live or die. Evangelos Michelakis a researcher at the University of  Alberta, Canada may have a potential cure for GBM.  However, this drug dichloroacetate DCA is not stirring up interest because it is not a big money spinner.  No one gets rich.  Yes! OK, we are not naive enough to think big pharma develops pills to simply cure the world of all its ills purely because that's what makes them feel warm and fuzzy.  We know its all about the size of the wedge, but looking at the world from a simplistic angle rather makes your gut wrench. In the realms of scientific Medicine it truly is a 'Fat Cat  eats Lab Mouse world'! 


  For the full story visit: http://www.foxnews.com/health/2011/05/18/big-pharma-ignoring-potential-cancer-cure/