I have been dealing with a brain tumour and a facial tumour since being diagnosed last christmas. Mostly I was treated surgically early 2009, but recent regrowth of both tumours has now caused severe epilepsy which is still not 100% undercontrol (so loss of driver's licence- living in a rural area with no public transport) and more surgery in November. I havent posted for a while as I have had my own personal 'stuff'to deal with which is only kinda related to the cancer- my marriage unfortunately collapsed the first time round, and after trying to give it another go for the sake of my 2year old daughter doesent look like it is going to make it, and I run a medium sized business which after having to spend at least 6 months of this year away is now a disorgansied mess (my husband doesnt work in the business - he doesnt work at all come to think of it - but thats another story)
Anyhoo, what does this have to do with your post I hear you asking?
Well in the week leading up to xmas I had not one but two 'friends' give me and earful about how I havent been there for them this year!!!!!
Both of these friends I kept in contact with through facebook or email (remembering I cant drive, have a business a two year old and a brain tumour FOR F'S SAKE - I have also tried to keep the focus actively off my situation and not be focused solely on myself when talking to other people or catching up cause I figure it is kinda boring ) - ONE FRIEND - is in a likewise situation to myself business wise and with a toddler and we often talk about the same problems we have with staff etc and vent on those things, I noticed through facebook that she was unwell and had an inkling, so asked if baby number 2 was on the way and was politely told that it was and it was none of my ffing business you nosy b. I was only enquiring as a congratulatury way. This friend has also lost her mum to cancer, so we kinda of stay off that topic and she went into a full on rant on how I dont say anything about my personal life ao why should she say anything about hers - I was doing that not to upset her - I didnt want to get into the nitty of my poor 5 year outlook. Whenever, earlier I had mentioned the topic she had changed the subject so I learnt not to bring it up.
FRIEND 2 - An old school and university friend, a sent off an email as I hadnt heard from in a while. Although she stood me up about three times in the hospital when she was coming to visit with her baby. I asked about her child and used a shortend name and was told off for using the shortened name - 'you use the nickname like you come and visit all the time - you have never even seen her" - my child is 12 months older and this friend has never seen her either. I was also told that bad news travels fast and acused of gossiping - apparently she had a miscarriage and she thought I had heard through someone and that is why I was emailing - I hadnt heard, I myself had suffered two miscarriages, which I then told this friend about and havent got a reply - as for the not visiting - well, stood up in the neuro ward three times kind of covers it, and I CANT DRIVE PEOPLE!!!!
So I AM DOING A FRIEND CULL - I am a people pleaser by nature - a doormat type, cancer has shown me that I have always allowed myself to be taken for granted and people really only want to know me if they want something. My cancer council councillor pointed out that at the moment I dont appear to have any friends - just staff - and the reality of that really hurt - the two people who upset me in the last week I thought were still ones I could call friends. So, New Years resolution - one - make staff work next christmas (yup worked all this xmas (because I am a doormat, while my very expensive Gen Y staff (i am in a professional industry - all went on their little holidays) and GET A LIFE with some people that don;t want to get something from me - or abuse me in some fashion,
and spend less time on facebook,
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I have been trying to think of what to say, without sounding trite or 'stay positive' (I hate that by the way),
There is nothing to say,
Enjoy each moment for the moment if you can,
It is just not fair!!!
Stay strong, but cry and sleep if you need to - let your mum or somone else look after the boys and your husband for a few hours every now and then a catch a nap - you need it!
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Phew...I am exhausted just reading about your upcoming week -- one step at a time and just breathe - easier said than done I know. I am sure that you will soldier on, chin up and all that and be the mother and wife that you are - but we will all understand if you have a screaming banchee moment - I have become a great fan of these moments (and the ugly cry (to quote Oprah) ) over the last 12 months 😄 ... you do leave other people slightly bewildered, but you feel much better afterwards (ok better done in private, but you do feel much better afterwards)
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Hi again Jill,
Just read your previous blog, ( I have a bit of catching up to do)
I agree - scream, shout, buy a punching bag do whatever you damn well feel like and under no circumstances apologise or excuse yourself for putting yourself or your family first!!!! (ESPECIALLY TO ANNOYING email/ tetemarketers/selling schemes/ extended family that usually dont generally give a rats/ coworkers/ staff etc etc etc. AND DONT APOLOGISE to nursing staff in neuro wards that are not watching neuro patients appropriately - be grateful he rang you - I spent last xmas/new year in a major capital city hospital neuro ward - I was not that confused, but my roommates were - the nursing staff on the major public holidays were mostly temps and didnt really give much of a rats until they absolutely had to - when I complained about one man's behaviour (who thought he was escaping from a POW camp in Germany) they called for a psych assessment on me - it took them 2 hours to realise I was fine, the poor old guy nearly escaped the ward though. PUT YOURSELF AND YOUR FAMILY FIRST AND DONT APOLOGISE FOR IT - YOU OWE NOBODY ANYTHING!!!
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Sorry, I have been rabbiting on about myself and just read this blog. I am so very sorry. Your husbands tumour is very similar to my primary - frontal lobe 6cm - large amount of swelling when first diagnosed.
I hope the radiation therapy continues to help. My thoughts are with you and the boys. What a horrible, terrible, rotten thing to happen at this time of year!!
I understand after being diagnosed xmas day last year - I realised my behaviour had changed and I couldnt remember how to artifically inseminate a cow and went to treat a dog that I had discharged three days earlier (as well as falling asleep and being grumpy!)
It is a least a blessing that he has not yet had any seizures - I hope that it stays this way (my prayers and fingers are crossed). I Definately love the idea of christmas shopping for cancer patients and their families - I wish I was on the west coast to be able to pop in and do something (even something small) for you and your boys and husband,
Love the man he is and always will be, difficult though it is in a situation like this.
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Thanks for the great idea of a 'all about me journal'. Until now I have been writing letters to my daughter about what to do in certain situations, but have started keeping a journal and have found an addiction to typing out a plethora of cathartic stuff about myself, my childhood etc that I will hopefully be able to pass onto her so that she will know the real me! I have found doing this has helped more than any councilling etc and helped me better understand myself and the whys and wherefors of life. I will certainly look up the retreats after the next round of surgery and treatments - sounds wonderful - wish I could go today!
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Thanks for the suggestion - I remember watching the lecture on you tube when it first came out - Randy was such an inspirational guy - I didnt realise he had a book published - will definately look it up and probably re-watch the you tube video - Perhaps we can stay positive and both aim to watch the last lecture with our grandchildren.
Thanks for the advice,
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The tantrums are continuing - but she is getting tonisllitis a lot (they are coming out next month) so it may be making things a tad worse at the moment. But I never thought of the tantrums being a sign of her being a strong woman (I will try to remember that during the next episode!). I am glad you agree that I dont think that we are being less positive by making contingency plans - just realistic. My husband is also in denial about the whole thing and wont talk about the possibilty that I wont make it, but I feel I need to be prepared - just in case (I especially want to do things before my next surgery - being the whole brian thing, I may not remember the whats behind the photos myself, so I just feel the need to be prepared),
Wishing the best to you and your family,
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.