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Showing content with the highest reputation since 10/04/2011 in Blog Entries

  1. 3 points
    6 months since my last post, it’s time to update. This week I got back the results from my April bone marrow biopsy. There have been no Leukaemia affected blood cells detected since January. But the important tests are the bi monthly bone marrow ones. At diagnosis 85% of my blood producing stem cells were affected by the mutation which causes my type of Leukaemia. By December it was 3%. Unfortunately, between Liverpool Royal, and Guys, in London, they lost my February sample, so I’m running 8 weeks behind on results. April sample result was no detectable mutated leukaemic stem cells. I need clear blood, haematological remission, and 3 undetectable bone marrow results, molecular remission, to be considered in remission. Next samples 31 May and last week July. Im still receiving the experimental trial protocol involving arsenic trioxide infusions. Few side effects, extreme tiredness, my hair is totally white and I’ve got baby curls, but worst is peripheral neuropathy in hands and feet. Permanent pins & needles, total numbness in my toes and soles of my feet. Mobilty is impaired and restricted. It may be permanent. But I’m getting back to some normality. Went to Dublin over bank holiday weekend, theatre trip, and I’ve chaired a couple tribunals with two more this coming week. Treatment continues until 6 July, then rehabilitation physio and 3 monthly, 6 monthly and, after 5 years, annual bone marrow biopsy follow ups for life. All on the NHS. Truly a marvellous resource. My treatment will have cost £250,000 plus. Each chemo dose costs the pharmacy £1000, and I’ll have had 99 doses by July.
  2. 2 points
    For those who don't know, we're trying to update via Twitter. https://twitter.com/manxforums Basically a database table containing all the MF posts ever has fallen into a corrupt state. Due to the size, normal recovery methods aren't having much effect so I'm now looking into dumping the data out and rebuilding it from an extract. Obviously that's quite drastic and it's proper shit-the-bed type stuff as one error and it's all gone. I don't know how current our backups are right now, Uni does that stuff, so I'm going with the assumption that I need to get this right first time. So, the blogs module uses a different table than posts so all being well this should appear and hopefully either direct people to the Twitter, or at least understand it's being worked on. It's a lovely day outside, go get some fresh air.
  3. 2 points
    After pondering what to call my blog, the revival seemed to be the most apt. I thought of "Bursting with Joy" but that would have seemed a little OTT even if it would appear appropriate to those who have been through the dark days of my life. "Risen from the ashes" was another thought but that reminded me of the Phoenix. The Revival is pretty apt for what is happening to me now; a revival as in the definition "A restoration to use, acceptance, activity, or vigour after a period of obscurity or quiescence." I didn't want to continue blogging telling everyone how good I was, followed by how down I was and boring people with the endless rollercoaster that my life became since Tom died. Strange things happen sometimes when people suffer loss and allsorts of unbelievable things can happen. Unpleasant things from early years, suppressed and forgotten, can come back and have to be dealt with. This has been the case with me. It isn't necessarily something you want to share with the whole world. So I withdrew from almost everyone and everything. Someone once asked Tom did he write everything there was to know when he wrote his autobiography. His reply was "When you invite someone into your house, you don't show them your bedroom." With that in mind, I also didn't want to share my struggle over the past 8 months or so. What I can say without doubt is that I am now having a revival. Tom wrote about his journey with cancer and did so with such courage, humour, honesty and optimism. My journey since he has gone has been one of grieving but also of the most awful depression. The thing about depression is that you are anything but optimistic. Negative and pessimistic if the two can be separated. Who want to read about that? But now my journey has taken me another step further. I have been through grief. I have been through irrational behaviour. I have even revisited the darkest days of my past and I am now coming out of the tunnel. The numbness gradually went which I didn't even know was with me. I only knew when I felt anger and love again. Love came first when I felt it for my family, friends, birds and dogs. I went through the motions of looking after my animals and birds, but I was ashamed and bemused by my total lack of love or feelings for them. I didn't understand it. Anyway, the love is very much back. Anger came but not at Tom which people said may happen. Apparently the person who dies can come in for some anger for leaving. No, my anger seems to be with everything that I seem to have suppressed in the past or present for that matter. So where am I now? I have come off the antidepressants and am doing well. I have been doing some bookwork for Tom’s brother and Sister-in-law at Pooilvaaish which has given me a purpose and self esteem. I started back with Castletown Band but have been absent without leave for a few months whilst I come through this last tunnel. Painting has been a struggle but one is complete which I have put on this blog. It is too dark for my liking and I cannot brighten it no matter how I try and so I will leave it. It represents a period in my life and reflects the mind of the artist at the time. It is of Langness Lighthouse and my first attempt at acrylic. Most of the painting was done in the early hours of sleepless mornings from around 2 a.m. That is what depression is like. You can lie there tossing and turning or you can get up and try and make use of the wakefulness. My baby heron survived and the strangest thing is that he must have been the runt and thrown out of the nest. I am only 4ft 11 and some would probably agree I was of a muscular build. My young 'Odin' seems for all the world, a heron equivalent of me. He's a titch. His legs only come up to the knees on the other herons & he can be identified at a glance. As small as he/she is, when it comes to the sardines in a morning, Odin will defend his territory. He knows his name as well, but so funny to look at. In the summer I watched him catch an eel in Castletown harbour and even as a large heron tried to rob him, he wasn't out done. He will always be looked after by me and he's very special. I have also had the pleasure of watching a family of moorhens raise 2 sets of young in the summer. I think my little moorhen did survive last year because as shy as moorhens normally are, there is one which is fearless when it comes to humans and I think it may be my little fella. Last week I had an overwhelming desire to go back to programming. Now if that isn't a sign that the depression is lifting, then nothing is. I never thought I would ever feel confident to go back into that sort of environment or that anyone would be even slightly interested in a 59 year old. Well I made a phone call to one of my old firms just to test the water. What can I say? I went to Central Software today already knowing that they would like me to join them on an adhoc basis at the moment. I was nervous for two reasons. Firstly I can feel emotional meeting people who I haven't seen since Tom was a fit and healthy husband. Secondly I haven't programmed or been into that sort of workplace for nearly 3 years. I didn't even know if I could pick it up again, but I had this strange confidence about me that it would all be fine. John the CEO treated me like I hadn't been away from the place for nigh on 14 years. I left at the end of January 1996. Most of the people that were there when I left are still there and they were all pleased to welcome as one of their number again. I only worked there for 3 years but in all my years of employment, I have never loved a place like it. Everyone who works there does so because they love programming. There isn't any politics as there is nothing to be gained. There aren't any bosses as such. No positions to aspire too or projects to you want that much you would denigrate your co-workers to achieve your goals. It is heaven for me especially at my age. I can do a bit of programming which I have to say I absolutely love. There won't be politics, just a team of people all enjoying what they do and encouraging each other. I am sooo excited. I was craving a can of coke tonight and there was none to be found. The garage was closed as it was 9.30 so I decided I would creep into the Sidings (pub), buy a can and leg it home. I'm from the old fashioned brigade that feels like dying at the thoughts going in a pub on my own. I sidled up to the bar feeling very conspicuous when I lady shouted "Hello Barbara" and then half the bar joined in. That was when I decided "to hell with it"; I got my coke and joined her and her husband for an hour. I mention it only as another way of letting you know how the revival is going. On the way home which is only about 200 yards, I decided it was time to blog. Also today I have seen the doctor and let it be known that I am now off the antidepressants and want to now get on with my life. I needed them when Tom was ill. I was so badly affected when Tom was being treated; I used to go into the park to sob my heart out. I couldn't remember things or think straight. I couldn't get the thoughts out of my head that I was going to lose him soon and at the same time I kept Tom’s optimism alive. Whilst he slept beside me I would exhaust myself on the internet looking to see if there had been a breakthrough in his cancer. It was relentless and I drove myself. When he died my nightmare became reality. The worst had happened. I had lost half of myself and it was the best half. I fluctuated from being unable to function to racing thoughts and basically I was a mess. Then as I have said, I gave away quite a bit of my finances and followed that up with reliving every trauma of my childhood and so on. Now it is finished. I have been warned that the antidepressants will have suppressed some of the grieving and I may still have to go though some stuff which is only what everyone else has to cope with. I'm up for that. I am going to be the Barbara that met and loved Tom 20 years ago. I'm not going to finish my life in a permanent depressive state. I'm having a revival. Before I end this blog I would like to apologise to all the people I have neglected over the past months/year. Pauline, Joyce, Cheryl, Dorothy, Barry and Linda to name but a few. Wendy and Sean, thank you for the flowers. Thanks to everyone who has encouraged me to blog again when I thought it was passed its sell by date. This is Barbara Glassey on the banks of the Silverburn River looking forward to Christmas and the New Year.
  4. 1 point
    (Originally written on 02 October 2008) There I am at Heysham in the Ferry Terminal. God is having a particularly heavy pee on the port at the time. It’s early December 2006 and I’m on my way home. Heysham Terminal – I wonder why Dante omitted it from his divine comedy – must have been too scary. Actually it’s more Mines of Moria from Lord of the Rings. Dark, damp and full of strange creatures. The traffic cone is in the middle of the sewage pool designated as the Gentlemens toilet. I heard on Manx Radio several weeks later it was still there. Passengers gather. Staff mill about saying nothing. Rumours circulate. Staff admit nothing. I speculate if I can afford the prices at the cafeteria – café? Sod all to eat bar some cake. Hardly adequate fare for those about to be in peril on the seas. Tension mounts. Due to the lack of information from the staff, the passengers mill around like a badly directed crowd scene from a 1950s Hollywood epic. The designated sailing time comes and goes, An hour passes then we low caste foot passengers are herded on. I start Baaing like a sheep. Several of the younger passengers join in. Further delay ensues but at least we’re on the boat. I find the buffet area and scrutinise the menu. Outside the weather can best be described as very unsettled. At last the mighty engines rumble and we set off. Starving, I buy a chicken curry with chips and rice. Superb. Then the fun begins. The ship rattles, pitches and people start to be sick. The deck tilts like a mad tilty thing and there’s the growing smell of sick. The Angel of Death appears in a corridor. Jack Hawkins walks past in his duffle coat. I debate asking if there’s a U Boat ahead. Half way across, the lounge resembles a Star Trek episode – people being hurled from side to side. The Christmas trees ( cleverly secured at the top, but not at the bottom ) swing side to side like deranged monkeys. The plates in the galley and all the little packets of biscuits and cakes fly out of their display cases. Flavour of the day is vomit. We crawl round on the floor looking for someones spectacles which were thrown of his nose by a particularly vicious pitch of the boat. The TVs go out. Lights flicker. I wait for Jean Luc Picard to give the order to abandon ship. The Angel of Death is throwing up in the gents. I am struck by the realisation that Steam Packets’ Ben My Chree is as stable as Gaddaffi in his pre friend of the west days. Some poor sod is huddled on the top deck on the leeward side under blankets throwing up her intestines. The only others up there are a few madmen trying to enjoy a fag and not get tossed overboard. Everything not bolted down in the lounge is flying around including all the passengers. Then at last lights through the dark and rain. Douglas. People try to avoid dying before reaching land. When the ship of doom does eventually dock hours late, naturally with their usual contempt for foot passengers; we are let off last. In fact the cleaners were boarding and in the lounge before we get on dry? land. But at last there I am. On holy ground. The land of my birth. The blessed isle It’s cold, dark and p*ssing down but I’m home.
  5. 1 point
    ... this cartoon does a pretty good job of expressing alot of my thoughts about parts of modern life and work. It involves a strong reaction to it - oh dear NSFW language. The challenge in life is how to ensure the poetry this world has to offer us outweighs the frustrations life blocks us with ... and an understanding that overcoming those frustrations is partly what creates our poetry. Life aint easy - but that shouldn't surprise us really.
  6. 1 point
    I’m not the most experienced with forums etc and only really use the internet for research. But, when I signed up to manxforums.com I noticed this section and had long discussion with my ‘very smart’ brother to find out what a blog is! After he eventually stopped laughing, I now understood what it’s all about and have decided to give it a shot. Oh life was so much easier when I was a blonde but, since returning ‘au naturalé’, I can’t use that as an excuse anymore! The time has come in my life when I just think ‘how the ... did this happen?’. I never imagined that I would be approaching my 34th (ergh!) birthday as a singleton however, since moving back to the island, I’m finding it increasingly difficult to meet a decent single man over the age of 30 who isn’t either a maniac, a drunk or just plain scary, and if my ass gets any bigger, I’ve got no chance. So, am I looking in the wrong places? Where are they all? Or can they just not see me because i’m so short I can’t guarantee many interesting entries, and I apologise in advance, but this blog will be dedicated to my life as a singleton in the Isle of Man. Exciting ey!
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