Today (March 31st) is the last day of Brain Tumour Awareness month, so I thought I'd talk a little about why the groups and forums that raise awareness are so important to me and many other Brain tumour sufferers/survivors/patient supporters.
As with every day this month, I have been sharing (on Facebook), the daily "Did you know" facts posted by BT buddies, the UK based support charity that I am raising money for. Today's quote fits in perfectly with my own views of knowing others who have had /or still have brain tumours:
"Those of us fighting the brain tumour beast are a band of brothers and sisters. None of us want to be on this journey, but we are, and so we fight, side by side, helping eah other with love, information and support." (Dr Michael Gabriel)
For me, opportunity to communicate with others in the same or similar situation, to yourself, is an important way of coming to terms with the illness, and in getting through it.
The hospital in which I am treated (The Norfolk and Norwich) is home to the local charity, The Big C, and offers many groups for people with cancer, including a Brain tumour group, but there is a problem. Norwich is a 25 mile trip from my home in Mundesley, and the hospital is further still, meaning I only tend to go there for my hospital appointments, which are all on Fridays. The group meets on a Thursday. Therefore if I wanted to go to this group, I'd have to go purely for that, and frankly (not wanting to sound too harsh), I have better things to do with my time- bear in mind people with brain tumours cant drive by law, so most people rely on lifts to get there.
This is one of the reasons why intenet forums and websites are so necessary and useful. When I was diagnosed with tumour number 1 in 2006, I was clueless. Like most people my only knowledge was what I'd read or seen on the news, which compared to a lot of cancers (eg breast, lung, leukemia etc) was limited. So I searched the internet to find sites. There are plenty of general cancer sites, but again, comparitively fewer specifically for brain tumours. Whilst general cancer sites are great for gathering basic information, I think a lot of cancer sufferers (myself included) prefer talking to people with a similar type of cancer, as your experiences are more likely to be similar. I think this is especially true for brain tumours, particularly as out of the many types of cancer, brain tumours seem shrouded in mystery and uncertainty. When first diagnosed, the only websites I initially found seemed more concerned with statistics, which as I've said before do little to raise the spirits, as they are far from positive for brain cancer.
So I started to speak to people on more general cancer sites such as Cancer Research and Macmillan. I was pointed towards some Brain TUmour sites, but the majority were AMerican. I have no problem with this, I've actually made some good brin tumour forum friends on the other side of the pond, the problem comes when asking for advice. Treatment used in the USA can vary to that available in the UK and vice versa. Which is why I was pleased when I stumbled across BT buddies.
BT Buddies is one of the only UK websites dedicated to providing information and support for people with brain tumours and their friends and family. Through them I found a lifeline, although I have never yet found anyone online with my particular type of tumour (Anaplastic Ganglioglioma) which just goes to show what a rare type it is.
BY taalking to others in a similar postion, you can be completely honest without fear of "freaking people out".
You see this is one problem with your everyday healthy friends. As much as I love you all, it is impossible for someone who has never had (or known anyone with) a brain tumour, to even to begin to understand what you are going through (although I hope this blog has helped over the last few months)
For example when I started having symptoms of my recurrence in October when I returned from Taiwan, I KNEW what was wrong, the diagnosis was just confirmation, yet (healthy) friends have this understandable desire to keep you positive, by saying things like "Oh it could be something else", "You're probably tired "etc. I contacted a friend I'd made online, who had a BT 3 years ago and they just said "Shit, but yeah,does seem likely- so has a MRI been booked?"
This is the kind of support I needed, someone who accepted (as I had) that in all likelihood, it was the worst case scenario, but could understand it and was willing to open up chanels of communication.
I don't pretend to react to things the same as ALL people with brain tumours. However I think a lot of us through weighing up all posibilities become a lot more open to talking about mortality and the likelihood of ongoing recurrences. Most people, again- understandably- don't like talking or even thinking about these things. I know I can be unfair to people who feel awkward, but sometimes I need to be really honest about these things without upsetting people, and forums are the one place I can do this, I regularly read the motivational stories of long time survivors whih are fantastic. But the other, very real side of the coin is that many, simply, do not make it. I am grateful that there are places where I can voice these concerns without upsetting loved ones.
I also get a reaal comfort from helping others, particularly those at the beginning of this journey, and those supporting people who are. It's nice to have the opportunity to get something positive out of your situation by helping others.
This is the reason I started this blog alongside raising money for BT buddies, I wanted to carry on what they have started; giving honest and open information about the life of a brain cancer patient, alongside hopefully helping people deal with it in the first place.
So please, please, please if you haven't done so already, donate what you can to BT buddies via my just giving page: http://www.justgiving.com/Lucy-Cunnington0
And to all the websites/ forums that continue to keep me motivated and give me hope, Thank you.
Saturday, 31 March 2012
Sunday, 25 March 2012
...just keep the side effects coming...
So if I hadn't already worked this out, I have definitely come to the conclusion that this cancer business is a bit of a bugger to put it mildly! The problem, everytime I think I've experienced all the side effects I'm going to get, something else comes along and throws a spanner in the works. The really annoying thing is that as we now know my tumour has drastically reduced in size, these new side effects tend to be caused by the treatment (chemo), rather than the illness itself.
The latest side effect seems to (according to Macmillan's website) be what is known as "Peripheral Neuropathy". In basic language, the fabulous drugs that blast away all those nasty tumour cells, can also damage some of the nerves in the body,most commonly the ones in the legs, feet, arms and hands. The damage can present itself in different ways; pain, numbness, unusual sensation and burning. In my own case, it seems to manifest itself as numbness in my left arm, and an ocaisional "burning" sensation in my left hand. Although it is not unbearably painful, it is uncomfortable and less than pleasant.
It is not my first experience of nerve damage. My accident caused nerve damage in my arms and left leg, and the toe on my left foot are still affected (I haven't felt them for over ten years!). Neuropathy, like all nerve damage is not reversable, however nerves can repair themselves, so hopefully after chemo is finished, over time the nerves will slowly repair and the burning and numbness will stop. However, as with my toes , the tips of my fingers may not fully recover..
Otherwise I have to say most side effects have reached a manageble level now. My left sided weakness is long gone and I can use my hand normally, and walk relatively well, My energy levels are only really bad during chemo week and I'm sleeping really well. The only side effect which is increasingly bothering me is my skin. Again, thanks to the chemo (why does making me better have to be so unpleasant?),my skin is incredibly dry, at times it almost feels papery, is constantly stiff and feels quite tight on my face and hands which I smother in E45 cream day and night. I have always had problem skin, but in the past it was more likely to be grasy and spot prone, so having to moisturise so much is a new experience. About five minutes after I've applied cream, it feels dry again, so it's a constant battle to feel comfortable.
WEll think that's enough moaning for now! Thankfully we have had some better weather this week which has boosted my mood and energy (although you wouldn't know it now thank to the sea mist developing outside!). Weather helps as I get less of my arthritic pain in warm weather, which makes the cancer/chemo side effects easier to bear.I have just under two weeks until the next chemo cycle , so I'll try and keep the serious moaning in check until then!
The latest side effect seems to (according to Macmillan's website) be what is known as "Peripheral Neuropathy". In basic language, the fabulous drugs that blast away all those nasty tumour cells, can also damage some of the nerves in the body,most commonly the ones in the legs, feet, arms and hands. The damage can present itself in different ways; pain, numbness, unusual sensation and burning. In my own case, it seems to manifest itself as numbness in my left arm, and an ocaisional "burning" sensation in my left hand. Although it is not unbearably painful, it is uncomfortable and less than pleasant.
It is not my first experience of nerve damage. My accident caused nerve damage in my arms and left leg, and the toe on my left foot are still affected (I haven't felt them for over ten years!). Neuropathy, like all nerve damage is not reversable, however nerves can repair themselves, so hopefully after chemo is finished, over time the nerves will slowly repair and the burning and numbness will stop. However, as with my toes , the tips of my fingers may not fully recover..
Otherwise I have to say most side effects have reached a manageble level now. My left sided weakness is long gone and I can use my hand normally, and walk relatively well, My energy levels are only really bad during chemo week and I'm sleeping really well. The only side effect which is increasingly bothering me is my skin. Again, thanks to the chemo (why does making me better have to be so unpleasant?),my skin is incredibly dry, at times it almost feels papery, is constantly stiff and feels quite tight on my face and hands which I smother in E45 cream day and night. I have always had problem skin, but in the past it was more likely to be grasy and spot prone, so having to moisturise so much is a new experience. About five minutes after I've applied cream, it feels dry again, so it's a constant battle to feel comfortable.
WEll think that's enough moaning for now! Thankfully we have had some better weather this week which has boosted my mood and energy (although you wouldn't know it now thank to the sea mist developing outside!). Weather helps as I get less of my arthritic pain in warm weather, which makes the cancer/chemo side effects easier to bear.I have just under two weeks until the next chemo cycle , so I'll try and keep the serious moaning in check until then!
Wednesday, 14 March 2012
The importance of raising awareness.
Those of you who are friends of mine on facebook will know, this month is Brain Tumour Awareness month. You will know this due to my snazzy profile picture, and my habit of constantly sharing facts posted by the BT buddies FB page, and my reference to all things brain tumoury!
It is not my intention to ram my illness down people's throats. In fact this is the LAST thing I want to do. One of the (very) few good things about having a brain tumour is that it's relatively unnoticeable to strangers. Especially this time with no surgery scars, or hairloss, I can walk around and look perfectly normal(ish!) to most people I meet. When I post information it's not to make others feel bad or sorry for me- I've never actually been much of a pity fan; I just feel that it's important to raise awareness so that the work of existing brain tumour charities are supported, and so that people understand more about a condition that is not as rare as they'd like to think.
Primary brain tumours (like mine; cancers that start in the brain) are only about 2-3% of all cancers, however overall brain tumours (including secondary tumours that have spread from elsewhere) make up 25% of all cancers diagnosed and treated. Given that one in four people gets some form of cancer in their lifetime, it doesn't take long before the chance of getting a brain tumour becomes a very real prospect.
Unfortunately, dispite this, brain tumours are continuously over shadowed in the media by other types of cancer. I am not suggesting that any one cancer is worse to deal with psychologically than another, but due to awareness campaigns, common cancers such as breast and prostate cancer are now generally treatableif caught early enough- which many are due to the now widely available information in the media telling people how to spot the signs. Other cancers such as cervical have also been publicised, with more woman going for regular screening than ever before.. Plus thanks to research that lead to the development of the HPV vaccine, one day it may be a cancer that nobody has to live with.
All these advancements are wonderful (obviously) and in large part have come to be from relentless awareness campaigns stressing the importance of adequate research and funding. By comparison, unfortunately, brain tumour research lags behind.
For the statistic lovers; here are some shocking ones:
1) Brain tumour research receives only 0.7% 0f cancer research spending in the UK.
2)65% more women die from a brain tumour than from cervical cancer.
and 3) More people under 40 die from a brain tumour, than from any other cancer.
These are three very good reasons why awareness is so important. I have a dream that one day ( although probably not in my life time), brain tumours will no longer be the scary unknown cancer, and will be more easily treated, if not completely curable and preventable. This is not a freak illness, it can happen to just about anyone. It can happen to friends, family, children... until more funding is given over to brain tumour research, sadly the numbers of sufferers will keep rising.
If you do nothing else during this awareness month, take some time to read the facts I have posted on facebook, maybe even take a look at the btbuddies website: btbuddies.org.uk and try to donate some money either to BT Buddies via my just giving page, or to Brain tumour UK, trust me- every bit of help is invaluable.
It is not my intention to ram my illness down people's throats. In fact this is the LAST thing I want to do. One of the (very) few good things about having a brain tumour is that it's relatively unnoticeable to strangers. Especially this time with no surgery scars, or hairloss, I can walk around and look perfectly normal(ish!) to most people I meet. When I post information it's not to make others feel bad or sorry for me- I've never actually been much of a pity fan; I just feel that it's important to raise awareness so that the work of existing brain tumour charities are supported, and so that people understand more about a condition that is not as rare as they'd like to think.
Primary brain tumours (like mine; cancers that start in the brain) are only about 2-3% of all cancers, however overall brain tumours (including secondary tumours that have spread from elsewhere) make up 25% of all cancers diagnosed and treated. Given that one in four people gets some form of cancer in their lifetime, it doesn't take long before the chance of getting a brain tumour becomes a very real prospect.
Unfortunately, dispite this, brain tumours are continuously over shadowed in the media by other types of cancer. I am not suggesting that any one cancer is worse to deal with psychologically than another, but due to awareness campaigns, common cancers such as breast and prostate cancer are now generally treatableif caught early enough- which many are due to the now widely available information in the media telling people how to spot the signs. Other cancers such as cervical have also been publicised, with more woman going for regular screening than ever before.. Plus thanks to research that lead to the development of the HPV vaccine, one day it may be a cancer that nobody has to live with.
All these advancements are wonderful (obviously) and in large part have come to be from relentless awareness campaigns stressing the importance of adequate research and funding. By comparison, unfortunately, brain tumour research lags behind.
For the statistic lovers; here are some shocking ones:
1) Brain tumour research receives only 0.7% 0f cancer research spending in the UK.
2)65% more women die from a brain tumour than from cervical cancer.
and 3) More people under 40 die from a brain tumour, than from any other cancer.
These are three very good reasons why awareness is so important. I have a dream that one day ( although probably not in my life time), brain tumours will no longer be the scary unknown cancer, and will be more easily treated, if not completely curable and preventable. This is not a freak illness, it can happen to just about anyone. It can happen to friends, family, children... until more funding is given over to brain tumour research, sadly the numbers of sufferers will keep rising.
If you do nothing else during this awareness month, take some time to read the facts I have posted on facebook, maybe even take a look at the btbuddies website: btbuddies.org.uk and try to donate some money either to BT Buddies via my just giving page, or to Brain tumour UK, trust me- every bit of help is invaluable.
Saturday, 10 March 2012
Wake me up when the chemo ends...
Don't know how many time I've said this. But I'm going to go for the millionth: CHEMO SUCKS!!! Today is the first day of my 4th chemo cycle, and as predicted about an hour after taking my tablets, Nausia hit and nothing was going to hold back the sickness. It's the sae story every time, yet I always hope against hope that each cycle will be different.
Obviously there is a positive, as we all know now, my treatment is working. Now I know that logically, this should make things easier, as there's a point to my suffering, but honestly? nope- it's still just as hard forcing yourself to take tablets that make you feel awful!
FOr anyone who still thinks tablets are a "chemo-lite" compared to IV chemo, I hope I have squashed this myth. Granted I am glad not to have IV, mainly (as my history of blood tests show) because my veins are notoriously difficult to find, and one session could take forever just to set up! But be under no illusions, the side effects are just as brutal.
Let's ignore the whole hair thing- as I've dealt with it before- but just a point, not all IV chemotherapy drugs cause hair loss either. By no means can you judge the strength of a drug on this factor. Neither should you assume (as some people have) that my condition wasn't very severe so "can be dealt with by tablets- isn't that good?"! It is the type of drug that determines the route, not the seriousness of the disease. my partiular drug "Temozolomide" is intended for my type of tumour (glioma) and can only be given orally. Trust me a recurrant high grade tumour is serious, whether chemo is given through needles or not!
The weird thing about the side effects, is that some are only present during the five day course, where as others seem to linger all the time!
Nausia and vomiting (I am glad to say), only seem to occur when I'm on the tablets. Tiredness seems to be with me all the time, but extreme exhaustion is only during the treatment period. My skin is constanly dried out, for the last few months I have had to smother myself in E45 creme to prevent soreness, and I also have muscle tightness/stiffness in my left choulder.
However on the good side. ALL my symptoms now appear to be caused by the chemo. I have NO tumour related symptoms anymore e.g No pressure headaches, No left sided weakness and No problems walking .
I still have a slightly numb feeling on the left side of my face and the old occaisional dribbling problem, but as these are most likely caused by nerves damaged by fits, I accept I may just have to live with these indefinitely.
It may not seeem like it, but I am actually a little more positive!! I'm used to these side effects now, know what to expect, and thankfully know that it won't be too long before the treatment's finished.
Obviously there is a positive, as we all know now, my treatment is working. Now I know that logically, this should make things easier, as there's a point to my suffering, but honestly? nope- it's still just as hard forcing yourself to take tablets that make you feel awful!
FOr anyone who still thinks tablets are a "chemo-lite" compared to IV chemo, I hope I have squashed this myth. Granted I am glad not to have IV, mainly (as my history of blood tests show) because my veins are notoriously difficult to find, and one session could take forever just to set up! But be under no illusions, the side effects are just as brutal.
Let's ignore the whole hair thing- as I've dealt with it before- but just a point, not all IV chemotherapy drugs cause hair loss either. By no means can you judge the strength of a drug on this factor. Neither should you assume (as some people have) that my condition wasn't very severe so "can be dealt with by tablets- isn't that good?"! It is the type of drug that determines the route, not the seriousness of the disease. my partiular drug "Temozolomide" is intended for my type of tumour (glioma) and can only be given orally. Trust me a recurrant high grade tumour is serious, whether chemo is given through needles or not!
The weird thing about the side effects, is that some are only present during the five day course, where as others seem to linger all the time!
Nausia and vomiting (I am glad to say), only seem to occur when I'm on the tablets. Tiredness seems to be with me all the time, but extreme exhaustion is only during the treatment period. My skin is constanly dried out, for the last few months I have had to smother myself in E45 creme to prevent soreness, and I also have muscle tightness/stiffness in my left choulder.
However on the good side. ALL my symptoms now appear to be caused by the chemo. I have NO tumour related symptoms anymore e.g No pressure headaches, No left sided weakness and No problems walking .
I still have a slightly numb feeling on the left side of my face and the old occaisional dribbling problem, but as these are most likely caused by nerves damaged by fits, I accept I may just have to live with these indefinitely.
It may not seeem like it, but I am actually a little more positive!! I'm used to these side effects now, know what to expect, and thankfully know that it won't be too long before the treatment's finished.
Thursday, 8 March 2012
Making predictions...
It's Thursday of what I call "Chemo countdown week" in prparation for tomorrow's hospital appointment when I pick up the chemo drugs, ready to take them first thing on Saturday morning, which marks the start of "Chemo week proper". The trouble these regular-like-clockwork events become not only quite dull but a little too predictable. Take today for example- a lovely sunny day here in Norfolk, and it would have been nice to go out, but I had my telephone assessment. Basically (for those not in the know!), on the day before my appointment, a chemo nurse from the N&N gives me a phonecall, to check up on me and to see if there are any issues/ problems before the next cycle starts. Invariably these phone calls barely last five minutes. But it is stressed that they are important and should be treated like actual hospital appointments. Unfortunately like hospital appointments, there are often delay. However, unlike hospital appointments, there is no way of knowing this. When I go to hospital, they have a whiteboard, with any delays written on it. At home you're just stuck waiting until they call. Today this was an hour later than the planned time. This is not only irritating but a little too predictable; I know that if my phone appointment is 1.30, it is unlikely I'll hear from anyone until at least 2 o'clock, which does nothing for my annoyance levels!
Then on the day itself (tomorrow), I know that I will wait in the waiting room for what seems hours, only to be whisked through the hemo unit at break-neck speed! As I enter I will be given two swabs (that look like long handled cotton buds), which I have to take into the toilet and swab the inside of each nostril with one, and then eah side of my groin with the other- joy. This is to check for carriers of MRSA, and every person entering or leaving the unit has to be swabbed. After this exciting activity, I go to the desk, pick up my chemo drugs and anti-sickness tablets (if needed) and can go on my merry way. Given that I live 25 miles from the N&N, it means that it can take an hour and a quarter each way, for just a few minutes at the actual hospital!
The worst of the predictable events is reserved for Saturday. Normally a person doesn't know when they're going to be sick. If they feel a bit ropey before bedtime, they may think they are coming down with something, But generally the act of actually being physically sick is something of a surprise. This is a good thing- who really wants to know in advance?!
I, however, will go to bed on Friday night, knowing almost for certain that I will be sick the next day (I have consistently been sick on the first day of chemo for every cycle). If going to bed knowing this is difficult, imagine waking up the next morning and having to take medicine, that you know is going to have this effet?! Good as it was this week, to find out it was actually working,it still doesn't make me relish the thought of taking the horrible stuff. Aside from the first day vomiting, I can also predict with some certainty, that I will feel pretty awful for the next week, and will be completely devoid of energy.
That said I can also (More happily) predict that by next Wednesday I'll be really pleased to have got yet another cycle out the way...
Then on the day itself (tomorrow), I know that I will wait in the waiting room for what seems hours, only to be whisked through the hemo unit at break-neck speed! As I enter I will be given two swabs (that look like long handled cotton buds), which I have to take into the toilet and swab the inside of each nostril with one, and then eah side of my groin with the other- joy. This is to check for carriers of MRSA, and every person entering or leaving the unit has to be swabbed. After this exciting activity, I go to the desk, pick up my chemo drugs and anti-sickness tablets (if needed) and can go on my merry way. Given that I live 25 miles from the N&N, it means that it can take an hour and a quarter each way, for just a few minutes at the actual hospital!
The worst of the predictable events is reserved for Saturday. Normally a person doesn't know when they're going to be sick. If they feel a bit ropey before bedtime, they may think they are coming down with something, But generally the act of actually being physically sick is something of a surprise. This is a good thing- who really wants to know in advance?!
I, however, will go to bed on Friday night, knowing almost for certain that I will be sick the next day (I have consistently been sick on the first day of chemo for every cycle). If going to bed knowing this is difficult, imagine waking up the next morning and having to take medicine, that you know is going to have this effet?! Good as it was this week, to find out it was actually working,it still doesn't make me relish the thought of taking the horrible stuff. Aside from the first day vomiting, I can also predict with some certainty, that I will feel pretty awful for the next week, and will be completely devoid of energy.
That said I can also (More happily) predict that by next Wednesday I'll be really pleased to have got yet another cycle out the way...
Friday, 2 March 2012
Happy Days!
If you have seen my Facebook status, you will already know I've had some good news today. I had my (midway through chemo) MRI on Wednesday and ot the results today.
Dr R said it was literally the best scan he'd ever seen- my progress has exceeded all expectations! Infact having seen the images myself, the difference is amazing, after only three months of chemo, you can hardly see anything at all and the white edges (which indicate active cancer cells) have completely disappeared!
I'm not completely out of the woods yet (Not that you ever really are after a brain tumour anyway), I still have to complete my next three cycles of chemo and then have another MRI. Also Dr R is actually considering extending my chemo to another two cycles (bringing it up to 8) to make sure I have the best chance of getting the tumour to stay dormant as long as possible- this is not entirely without risk as they don't eant to reduce my blood count too much in case I need further chemo in the future, so he'll monitor the rest of my progress and make an informed decision. Although I do not relish extra chemo, I would like to be without cancer for as long as possible, caan't help but be chuffed with todays results.
Thanks to everyone who has been reading this blog and supporting me so far, I will be continuing to post until the end of my treatment, and will be keeping (as ever) my Just Giving page open so I can raise more money for BT Buddies.
Also this month (March) is Brain Tumour Awareness month, so have a look on the BT buddies website and learn a bit more about what they do and how brain tumours affect diffferent people.
Dr R said it was literally the best scan he'd ever seen- my progress has exceeded all expectations! Infact having seen the images myself, the difference is amazing, after only three months of chemo, you can hardly see anything at all and the white edges (which indicate active cancer cells) have completely disappeared!
I'm not completely out of the woods yet (Not that you ever really are after a brain tumour anyway), I still have to complete my next three cycles of chemo and then have another MRI. Also Dr R is actually considering extending my chemo to another two cycles (bringing it up to 8) to make sure I have the best chance of getting the tumour to stay dormant as long as possible- this is not entirely without risk as they don't eant to reduce my blood count too much in case I need further chemo in the future, so he'll monitor the rest of my progress and make an informed decision. Although I do not relish extra chemo, I would like to be without cancer for as long as possible, caan't help but be chuffed with todays results.
Thanks to everyone who has been reading this blog and supporting me so far, I will be continuing to post until the end of my treatment, and will be keeping (as ever) my Just Giving page open so I can raise more money for BT Buddies.
Also this month (March) is Brain Tumour Awareness month, so have a look on the BT buddies website and learn a bit more about what they do and how brain tumours affect diffferent people.
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