I've only got three more 'bolts' or doses of radiation to go before I finish next Wednesday (18th Sept) and will be glad to get back to Penzance the week after. But how has this part of my journey gone?
One thing I will be forever grateful for is that I haven't felt really any worse throughout my stay in London. Indeed, I have made the most of my stay with the anticipation I would get worse as time goes on. But so far, no seizures, no hair loss or burns to my scalp. In the last week though, I have started to get more fatigue, more dizziness and disorientation plus much to my chagrin, a damn sight more moody with hot flushes. But that could happen anyway. Goodness knows I'm at the right age and have been peri-menopausal for ages!
What is certain from infomation I have been given, it will be years, possibly up to a decate to see if/how well the radiation has worked, whether Algy will be stopped in his tracks and maybe even shrink. Apparently 50% of tumours (I presume it is the non malignant meningiomas) do shrink after a while but this again may not be visible for a long time.
My journey with Algy still has a long way to go and will be a lifetime one. But from what I have experienced so far is not all negative. There has been a growth of another sort, but I'm not sure what that is yet in terms of personality etc. Certainly one thing I would *love* to do is get some form of a life back in terms of maybe improving skills, the arts, I don't know. I am realistic enough to know it is *highly* unlikely I will ever be considered for paid employment as I have to be realistic about whether I could sustain a job, to be able to give it the time and energy that is needed, whether an employer would risk that. But then, there's not much in Penzance in terms of employment for the young and the fit, never mind a knackered 52 year old ex-nurse with chronic health problems. Any ideas folks on what I can do to while away the hours? I do like showbiz ;-)
So that'll be the next road I suppose, to figure out what I can do for the rest of my life however long that will be. I would love to write for a living, but everyone would and my writing style isn't that fabulous! I would love to work maybe in the media but being a roving reporter would be out. Being 5 foot, overweight, grey hair and if not for the wonderful existence of lady blade razors, would a moustache and beard thicker than Dave's! Maybe local radio? But I speak too fast, have too much of an accent and would spend most of the time talking gibberish.
However, that idea not completely impossible. I was recently interviewed by two wonderful ladies called Eileen and Claire Bullimore for a radio show they host on Thursdays via the internet community radio station Croydon Radio. The first part can be listened to here Brain Tumour Thursday Radio Show interview pt 1 and the second part here Brain Tumour Thursday Radio Show interview pt 2 .Claire is a brain tumour survivor, who like me had a 'benign' meningioma that she had diagnosed after her optician picked up signs on examination, even though she too suffered headaches for years! For this, Claire had surgery which has left her with cognitive and memory difficulties, as well as the usual fatigue, but for all of that, she is a vibrant, lovely young lass who has a great love for Hazelnut Latte!
Claire spent her working life in PR and did try to get back to work after her operation and recovery but could not sustain her ability to do so because of her fatigue and other problems that she had been left with. But rather than do nothing, she along with her lovely mum Eileen, who is a fabulous support (and Claire's carer) the two have become a tour de force for a positive, uplifting attitude towards brain tumours. The proggy is two hours long with great chat, info, guests and music. There's also a 'shoutbox' on the website you can leave messages during the program as well as tweeting via the hash tag #braintumorthursday or via @braintumouraunty. Give it a listen, well worth it. If you can;t catch it when it's on, between 12 - 2pm Thursdays, it's available for podcast the day after and can be found via the Radio Croydon website. So new beginnings can and do happen.
However something happened to me in the last couple of days which has left me feeling cold. I've had another wobble over the last 48 hours down mainly to mis communication and the growing realisation that Ye Olde Midlife Crisis is hitting as well.
To explain. Very sadly, David's uncle died recently in Scotland and plans were made for his ashes to be scattered in Cornwall. No one expected to do this until the new year but all of a sudden Dave's parents got a phone call to say his uncle's wife, daughter and boyfriend were down and the ashes were to be scattered the next day at Prussia Cove. With the flurry of getting there and all of a sudden a post committal dinner, someone forgot to let me know. I in turn had been trying to get a hold of Dave as I was having a rotten day with pain and depression setting in from fatigue. When I did get through I got a 'can't talk now, been scattering Uncle David's ashes and am at a dinner' or somesuch.
Not only did that come as a bit of a shock, I felt I had intruded on something and felt embarrassed. Then I remembered I AM FAMILY! SO WHY WASN'T I TOLD!
In true fashion, I blew my top big time and began to panic as it hit me, if my own husband could be so apparently dismissive of my feelings and need to know, what the hell was I going back home to and started to panic even more.
Now some of you will say maybe no one said anything because they wanted to protect my feelings or what have you. It's nothing of the sort but an actual family curse of poor communication, of when information needs to be given etc. There was an assumption that information had been passed and also a lack of urgency to do that. I also began to feel I had been left out of the loop because well, I'm just not there. That and a world of frustration, pain, disappointment that has built up over many years - for example and I know this is nit picking, my nursing colleagues never even sent a goodbye card when I had to leave on March 2011. The small medical records office where I had been secomded to for the remainder of my employment were kind enough to give a little gift & wished me well. But it still hurts for some reason.
I also started to think of the times in my life I have been excluded or pushed aside, or haven't been confident enough to say 'Oy!', when I have been basically and patronisingly told in various ways I am not 'quite good enough'. A lot of childish resentments came up and I BLEW. Sadly for Dave, he and his family got reamed across Facebook because I had had enough and again I couldn't get a hold of him. And again I panicked. Is this what I want for the rest of my life? Do I just go along with this and accept it? Is is all that I am and mean to those around me? Why was I getting more connection, passion, interest, bigger world view, information, self worth and support from the internet? Why could I not get that from those around me without having to almost beg for it at times? Is my perchance for having a big mouth just a means for getting attention for myself rather than promoting a cause and spreading awareness? What the hell is so wrong with having a big mouth and getting some attention anyway?
Did I really want to go back to this? Is is fair on Dave to be lumbered with an overweight, temperamental old boot who can now grow a beard thicker than his if I let it happen? Why was I never cool enough, clever enough, pretty enough, assertive enough, brave enough? I have been well blessed in life but there has always been a lack of emotional fulfilment along the way I have passively accepted because plain looking girls and women have no right to expect such demands.
To do and be otherwise is vain - which is why Janice Ian's 'At 17' sums up so well how I felt at that age and rightly or wrongly still do now. That was the gender expectation of my Mother's generation which sadly has filtered down to me. In one very horrible blast of clarity I saw that my remaining years would possibly slide into something terribly...empty, too sedate, too dull, redundant and useless. I am and have become another slightly wornout footstool in the furnishings of life both to myself and those around me. I had been hit by the Huge Self Pity Bug of course but dammit I *WANT* flowers, chocs, diamonds, sapphires, romantic walks, adoration and praise! I want LIMELIGHT! For the famous and fatuous to call me Dahlink in their midsts! To be invited to parties and dinners again! I want.... and so on! I'm revisiting my adolescence except this time it's called the menopause which is as bad, if not worse as it includes 'memory loss of the recent events' sort. And I am older and one hell of a lot more cranky too boot!
I know this is getting away from brain tumours but actually it is very relevant. Again when faced with a life changing/threatening/endings, the physical bits sometimes are not as painful as the emotional ones. All the way through this blog my feelings and 'whinges' come up frequently. At first I felt embarrassed when I read back through to re edit this blog and some of it wasn't relevant, but a lot is. Serious illness/injury/life change will throw up a whole bunch of deeply buried feelings/thoughts/memories that have to be faced as well. Some 'categories' would be
Hurt
Unresolved issues
Embarrassment
Lonliness
Umbrage (I kid you not!)
Loss of self worth
Anger
Sadness
Reality Checks
Panic
Accepting life changing events
Having to put all the above and so much more in to context.
Fear, shame and resentment of past, present, future.
Loss of ideal image of relationhips/lifestyle.
Vulnerability.
Loss of respect from self/others, 'persona non gratis', 'pity party'.
Facing a new, scarier and often more hostile world.
Facing changes within yourself.
The Future!
It's not just having the tumour and phyisical symptoms & signs. It's everything else as well. But getting and keeping a realistic insight is also painful because for all I might complain about how I been treated in the past, I also have a lot I need to appologise for as well. The term 'Old Sins Cast Long Shadows' is something I heard on my favourite BBC Comedy drama 'Death in Paradise' from an episode where a Roman Catholic priest was lamenting his past. And the saying is true. Karma, the past etc can and does come back to bite you on the ass and I am often left feeling cold with shame at my blatant stupidity and downright bad behaviour both past and present.
I am also having to relearn what the word 'confidence' means and not feel guilty for being more demanding and bolshy but also need to temper those feelings, strike a balance. I want my remaining life to be filled with love, laughter, passion, bright lights, the warm glow of my hearth, going for quiet walks with Dave that won't be broken by yet another phone call for him to go fix something and he is not confident enough to say no. I want us to become lovers again in the true sense of the word, in feeling if not in action. Dave is very affectionate but he finds it hard too. He has battled with a speech impediment and mental health issues all his life, that I have only recently realised had forced him to have to do a 'Spock' and reign in his emotions, so he wouldn't cry every time he's been taunted. Like me he tends to say 'yes' as he would feel guilty in saying 'no' as much as it is to help someone in need and is open to being used by those who otherwise wouldn't pay him a second glance and rarely pay him for his time. He is a very bright, practical man who has had to work hard at getting the confidence to develop his own skills and identity.
You should see him planning, designing, cutting and machining a model engine that works on electric, compressed air, and steam should we be able to afford a large enough boiler. All these skills are being lost now as machining is no longer taught in out schools. Dave has taught himself these skills but of course, it helps he comes from engineering stock but they are rare, prescious and require concentration, intelligence. He is a very quiet man as said before, but *very* sharp and I am ashamed at how often I too have underestimated my husband. Dave's family are fabulously eccentric, subversive and fun doing much to help their youngest son get though his life.
On my end, I am chatty (too much), an openly proud nerd/geek/anorak because that world is where I was welcomed for who I am, even though quite often in my life I didn't and still don't know what that fully means at times. I do crave acceptance and the need to know when I have done thinks right yet it's taken me the best part of thirty years to be able to accept a compliment at face value. I have always been well fed, clothed, safe, warm and with a roof over my head. But for all that, it has been lonely and scary. Dave and I both have this in common from different angles of course. My brother is the 'carrier of the gene pool' on my side and has a wonderful family of his own who are confident, outgoing, bright, energetic and loved whereas I have declined parenthood as I really do fear contaiminating the next generation with my baggage and have been told in the past this was a wise thing to do. Children are too precious to me to inflict my personality upon.
Where all this rambling is going, I don't know. There is a point in there somewhere and it *is* part of your experience and recovery. Life itself may not change but certainly your take on it will do. Aging and experience does that as it should, but at 2am on a wet Thursday morning my take on life shifted a little with the painful epiphany that I had not made the best of it by requiring something different from both myself and those around me...
..And also the fact I have been lucky enough to be given a second chance and I do not want to waste that opportunity. Ever.
It really touches me when I read your blog because I know at least some aspects of the emotions you’re going through. Though I surely cannot compare your and my situation it might help you to know what I did. You might say I am younger, I am healthy and you are right – but when it comes to self-esteem, dreams and so on – I know about these things.
ReplyDeleteBelieve it or not, although I really am a big mouth I have/had very little self esteem in my schooldays. This just changed over the past few years. I work in an office but this isn’t my dream job. 3 years ago I began to study journalism via open university and started writing my blog. Meanwhile I sometimes write for a newspaper and my little book about my blog is almost finished. 3 years before I wouldn’t have thought I could achieve this, cause you’re always questioning yourself “Am I good enough?” and the little mean voice inside you says “no.” Tell it to shut up! Here I am and I am f***ing fabulous! Don’t dare to tell yourself you aren’t good enough! You are So maybe look for a writing course either at an Open University or maybe there are local courses etc? Ask these lovely ladies from Croydon Radio If you can maybe gain some work experience there. There are ALWAYS possibilities – no matter who you are, how old you are etc. I really do believe that.
Regarding your marriage, well, it’s difficult to give advice. All I know is that most men aren’t overly emotional or able to show what they feel. The most important thing in my opinion is that you know he loves and supports you even if he doesn’t say it twice a day. However, if there are some points that hurt you, you will need to talk. A marriage lives by trust and respect and a deep love. If you have the feeling that you lack one of them it is NOT demanding to want it because it is a cornerstone. And regarding everything else you mentioned – be demanding! Why shouldn’t you? You know, there are so many women in the world that don’t dare to demand anything from their life, their husband etc because they have the feeling they aren’t worth anything. In worst cases they have to take hits – physically and mentally. Believe in yourself and your worth - ALWAYS. XXX
Thank you. I find writing about my experiences helpful and sharing them from what I gather has been helpful to others as well. I'm not so much looking for advice but more going through a process of self examination as time goes on, which others may or may not relate to and that'salso quite cathartic. The main aim of course of this blog is to raise awareness so hopefully someone will be informed, or not feel so alone or know others feel the same way as they do and to try and make something positive for all concerned. XXXX
DeleteI live in Bermuda and I too had a meningioma brain tumor. I was diagnosed in December 2009 and had it removed in February 2010. One dose of radiation and some of the tumor remains that cannot be removed. I have MRI's every 6 months. There has been no change in the remaining tumor and no symptoms. My initial symtoms were a feeling of unwell accompanied by the smell of something burning. The aura would last for about 20 to 30 seconds and then completely disappear. This went on for about a year. After switching my doctor and telling her of the episodes, she sent me to get an MRI. She teleponed me the next day to come to see her for her first appointment. She told me I had a brain tumor, and it was like a truck just ran over me. I asked her if I was going to die. She assured me that I was not going to die but that I should have it romoved as soon as possible so it doesn't grow bigger. I had the tumor for 8 years unbeknown to me. Meningiomas are slow growing tumors that grow from cells. My tumor was benign. Thank God! With these tumors your personality changes and I noticed that mine had. My vision had become blurred and I suffered headaches occasionally After surgery I was put on Dilantin an anti-seizure medication. Because of the sodium content in Dilantin, I had it changed to Keppra and that comes with not too nice side effects. Makes me irritable, aggressive and intolerant of certain things. Like noises and people chattering on needlessly.
ReplyDeleteAfter two surgeries and rehabilitation; I tried returning to work as an Adminitrative Assistant for the Bermuda Government and was not treated kindly. I quit I find that people don't take me seriously when I tell them that I have a brain tumor. Because I look and act fine, they don't see a problem. The problem with me is, I had a BMW and had to sell it, no job and friends don't come around like they use to. I have to use the public transportation or walk. My life and lifestyle have completely changed. I have to do everything by myself and for myself. Sometimes it's a struggle but I carry on. Life has become lonely with my brain tumor. I have fears and insecurities but I am managing them fine. I started a brain tumor support group but didn't get much support like I expected. There are many people in Bermuda with brain tumors or other brain illnesses but they are too proud to let people know. am glad for life and I take one day at a time.
Thank you so much for sharing!
DeleteIt is tough because as you say, those with brain tumours often do look well and I wonder what it is people expect from those of us with them. I am lucky in the fact I have a lot of support but then I haven't been quiet about it either! All I can say to you is this. You are reaching out and even if just one person can be reached or inspired, it'll be worth it. I know I'm 'across the pond' so to speak, but you are more than welcome to contact me if you wish. We have a great brain tumour community here on the internet and I have made quite a few friends through that as well. You are not alone with what you are going through and I only wish those around you would open their eyes to what is happening.
Best Regards XXX