Regular update??? Aye right!

Well dear readers, it seems that I do regularly blog -- on a once a year basis!! Did I really think I would do better when I started? Yes I did. Then life took over. Today was the anniversary of Tom and I meeting for the first time. Can't really believe it was eleven years ago, and yet 7th March 2004 seems like another life altogether. I say I celebrated, because although I reminded Tom of the date and the occasion, he is so much in his own world that he doesn't seem interested in anything much that goes on around him. It's been a very difficult week. It seems that suddenly it's so much harder for him to remember recent events, and find the words to express himself. He's also very shaky when he walks and of course doesn't want to use walking cane or frame, so he's staggering around the house, and staying in the car at lot when we do venture out. Having cancer must be overwhelming. It's overwhelming enough for the caregiver, especially when the person believes he doesn't need care! The medical profession needs to hear what it is like to be told that you have a disease with no cure and for which there is NO successful treatment. Yes they tell you about radiation and chemotherapy of many types, but when you know that these treatments are going to knock the stuffing out of you and make you feel like crap, then the cancer just keeps going, how can you 'stay positive'? I hear 'hang in there' on a regular basis and I know everyone means well, and I am hanging in, but watching the person you love have such a huge personality change and suffer is heartbreaking. Tom was so loving, kind and considerate. Now he sometimes doesn't even notice me in the room, or pushes me away and tells me how he hates when I hover around him. I know it's "the tumour talking" but it still hurts. Since June 11 2013, he's fought this horrific thing, He's tried to ignore it. He's tried to have a normal life. He was so unhappy when he had to stop working and teaching. He's told everyone so often that he's "fine" but how can you possibly be fine after two brain surgeries and so many drugs pumped into you that your veins can hardly take a needle any more? We've been attending Barnes Jewish and Siteman Cancer Center in St Louis since May 2014 and they have been first class. Surgery was successful and Tom fought hard to recover as fast as he could. There's a trial for doxorubicin and so Tom signs up. It means more detailed MRIs and more trips to St Louis, but if it works it's worth that effort. Monday 18 August 2014: After 5 of the 6 Doxorubicin treatments, the MRI shows regrowth and Dr Campian advises that there is no point in continuing this treatment as it's not working. Tom's case goes back to the tumour board to see what's next. We wait to hear from them, beginning to think he's been forgotten, until he's called in for an appointment on 28 August 2014 Carmustine (BiCNU) will now be given every sixth week and Avastin every second week. Steroids are given to help with the swelling but decreasing over the weeks. Avastin is supposed to be wonderful. We've had two MRIs which show no progress in the spread of cancer, but Tom's quality of life is going downhill. I read that you should try to remember you may not be able to control the tumour, but you can control how you live. I tell Tom that his stubborn nature keeps him going and remind him it's positively called 'determination'. He used to laugh at that, but he doesn't laugh much these days. I can only try to make our life together as stress free and relaxed as I can. Sometimes it's impossible. Life doesn't deliver what you expect or what you want. Is there really a reason for everything that happens? What is the reason for glioblastoma? A whole army of people pray for us and send positive thoughts. I like to believe that it all helps. At least I know we have supporters who love and care for us. I am grateful for that. I am grateful for what we have and I will keep the focus on what we can do rather than what's no longer possible.

It's Caturday!

Well it's a nice Spring-like Saturday here in So. Illinois and I'm thinking about Spring cleaning but not really doing it! I have aching knees and hands and back pain, so anything energetic is a struggle, but I'm trying to keep positive and be thankful for the things I can do! Sometimes it's very difficult as I really want to do stuff .... like today there's a Spring Flea Market at SIU and I long to wander and browse and poke around all those old things, but I know that I'd be so frustrated at not being able to walk any more than five minutes, so it's not worth the effort. It would be okay if there were seats along the way and I could rest and then wander some more, like at the Mall, or if there were mobility scooters - then I would be there all day long!! Tom's watching telly and Neil's off to do some work for Rebecca in her enormous yard. Maybe I'll go fiddle with some beading for a while before we go out for dinner with our "adopted daughter" Nina! Oh and that Apple Pork BBQ from the last entry? .....Not so good!

Silly me!

Well I've successfully managed to log in today! Some I have mixed up my yahoo account with my google account and when I log in with google Blogger tells me I don't have a blog - but - I can follow myself!! Crazy! Anyway, we still have winter weather here. Snow, snow and more snow so lots of time for knitting and crochet, if only my hands didn't ache so much! Oh and of course I can while away the hours on facebook, pinterest and ravelry so well! Tom's on his sixth month of chemo which involves him taking the chemo pills for 5 days every month. The first day (today) he usually feels pretty awful and so we've stayed home. He had a 'wee turn' this morning where he told me he felt ill and then blacked out for a minute. Luckily he was sitting in his chair so no falling over stuff. Every month seems to bring something different, just when we think we've figured it out. Still, roll on next week which is Spring Break from school for Neil. We're off to Branson, Missouri and I just hope we all like it! It sounds like an American Blackpool, so we're hoping it will be fun! Right, off to check the crockpot which has Apple Bourbon Pork loin in it for dinner. Smells good!

It's been a LONG LONG time........

Two years ago was the last blog entry!! What on earth have I been doing??? I'll just skip from February 2012 until June 2013 because that when our whole world turned upside down. Tom was diagnosed with a brain tumour and had to have surgery to remove it. This was followed up by radiation and chemo. It was a really terrible time all round. So scary when the life of the person you love is threatened. It must have been so much worse for Tom of course, but he just kept saying he was going to beat it and be a survivor. The odds for cancer in the brain are not good but at his last MRI we were told 'there's no visible sign of cancer' anymore. Of course we know it could return but right now we're taking every day as it comes. He's getting stronger every day, beginning to regain his appetite and looks great! Nothing like a life threatening event to make you re-think your life and put things into perspective! You know people say it's in times of trouble that you find out who your real friends are. Well we certainly found out that we had a whole lot more folk caring for us than I thought! We're convinced that all the good wishes and prayers really helped Tom's recovery. Just before all the cancer stuff kicked in, we had arranged for my great nephew Neil to have a year long visit to stay with us here in America and attend the High School as a Freshman. We hoped that it would be a happy and carefree time for him so when we knew all the treatment in store for Tom we gave him the option of pulling out, as we knew we wouldn't be able to travel and do all the things we'd have liked to do with him. He decided that he wanted to go ahead, however, and even said that he'd be able to help look after us both! So here we are with a teenage in the house, with all that brings! Neil's a great lad though and kept me going many days. We're now more than half way through his time here and Wendy and Andrew are counting the days until June, when they come to take him home. Stef came to visit in September and we even managed a wee road trip to Memphis, just the two of us. It was wonderful. I'm so glad we had time together and his visit cheered me up no end. Tom, Neil and I all went to St Croix for Christmas as Neil's Visa didn't allow him to go home and it was Tom's first big trip after surgery and treatment. The weather was wonderful and we enjoyed relaxing in our Villa overlooking the Caribbean Sea. Bliss! I love St Croix so much and really didn't want to come home to Carbondale! We returned for Hogmanay and spent it at Lynn and Brian's, again just what was needed to take my mind off the fact that I wasn't with family and friends in Scotland. I was missing them a lot!! To brighten our winter, Stef and Craig visited in January/early February so we celebrated Tom and Stef's birthdays together. Superbowl was fun at Paulette's when Don introduced us to another "Scot" from Portsmouth!! So funny that he thought Nina had the same accent as me!! We're still laughing at that one!

Happy New Year!!

Happy New Year!! 2012 WOW ... Aye I know it's February, but January just disappeared too fast. Must be a 'getting old' sign eh? I remember my mother saying that time went faster the older you got and I didn't really believe her. Sorry Mammy, you were right after all. My sister Rina died at the beginning of December last year so life wasn't as happy as it usually is at Christmastime. She had cancer and it caused a brain tumour. She really didn't know it was all happening because she'd been on pain control patches which masked the pain so it was too late to have any treatment by the time the cancer was discovered. At least she didn't suffer for a long time. I really still can't believe she's gone. Tom, Maggie and I spent two and a half weeks in UK over Christmas and New Year. I had the best time with family and friends of course. So good to be with Stef and Craig and do our usual festive stuff.Not sure what Maggie thought of it all as she spent all of her time at Stef's online and in her own wee world. She said she had a good time and was having fun, but we haven't heard a word from her since, not one word, even on Tom's birthday. So much for strengthening family relationships eh? We caught up with June, Wendy and family in Woolfords on Boxing Day which was great, and even managed to have some laughs when we went to clear out some of Rina's stuff at her house. June's doing all the lawyer business about selling the house and it looks like we have a buyer already! Weatherwise, we're having a good winter here. Very mild indeed. No snow, although folk are saying it'll come along one day soon! Until then I'm enjoying it being neither too hot or too cold! Mango and Smudge continue to entertain us, better than the telly most nights

Fall? --- Yessss - Bring it on!!

Well, the days are finally getting a little cooler here and the good news for today is that Stef passed his driving test this very morning and just called to tell me! YAY - well done son! I was in Glasgow for three weeks in July/August and he was taking two lessons a week but it all paid off and of course he now needs a car! So yes, I'm next. I do need to be mobile, even if only for shopping, clubs, visits etc., although I know Tom would love me to share the driving on our longer trips, like going to see Maggie. SUCH a drive!! Around four hours each way, and he insists on doing it all in one day which is a total pain. Made even worse by the fact that we sometimes only see Maggie for minutes (last time) or an hour or so. Total craziness really. She still hasn't come to see us here in Carbondale, not even for the Superman Festival which we thought was the best bet. Well if it does anything, it makes me appreciate how much my sons enjoy our visits! We had to tell Craig that he didn't need to come down every day when I was there! Even though it wasn't really what they wanted to do, they both came with us to Largs on our last day, and I enjoyed every minute. Of course I really miss them both now that I'm back here, but it's good to be home too. Mango and Smudge are settling in with each other and play sometimes rather than battling, but occasional wars do still break out! They make me laugh every day and continue to be a source of happiness and company on the days when Tom's away at work.In events that happen here, I've attended my first Baby Shower and we're looking forward to the birth of our neighbours Julie and Kyle's twin girls. I've been knitting and crocheting lots of my favourite baby items of course, some started and finished on the same day. Instant gratification! Our Yarn Shoppe group has been over to 'hang out' and knit at our place and it's good to 'have folk over' - feels gooood, not just getting together in restaurants or whatever. So if you're passing, do pop in, the kettle's on and there could just be some freshly baked Snickerdoodles in the cookie jar! haaaaaa

Looking forward to Summer in Southern Illinois

Well this is the last day of Spring and so tomorrow Summer begins! 94F forecast today, but should be cooler for the rest of the week. Wendy, Andrew and Neil arrive in Chicago on Thursday and will be with us Friday so we're pretty excited about their visit! Wendy and I have been e-mailing regularly with questions about activities, driving, plans and everything else.

We also have a new addition to the family. Last Monday Tom and I were at Irish Inn for Lynn and Brian's Cherokee renewal of vows and a wee kitten was sitting on their porch. Apparently it had wandered out from the Shawnee Forest that morning and they think he was abandoned somewhere close by. I fell in love with him of course, and Tom relented on his "No more cats in the house" statement and wee Smudge came home with us. Mango has not been a happy cat since and terrorises the kitten. He's had so many squirts of water (apparently it's a training aid so that he knows he's doing wrong) that he'll have webbed feet soon! Early days though, hopefully he'll tolerate his wee brother soon.

I've been enjoying my Wednesday Craft group and started a crochet bracelet with wire and beads yesterday. It's looking pretty but slow going with all the other stuff I'm trying to do - get the yard in shape, organise the rooms for the Jones's, and clear out clutter from everywhere! Just as well women are natural multi-taskers! Told Tom we'll need a truck to take everything to Salvation Army so there will be a few trips this week for sure. He's been busy too with his DIY projects - new porch lights, shower head and glider, rail and the vent in the bathroom has finally been replaced too - YAY The lawn mower refused to start yesterday so nae mowing. Hope the guy gets the estimate to us soon for a new deck before I go crashing through the old one! It's really dilapidated now, especially after all the rain and storms we've had.

OK better get some work done now and get rid of our 'To Do' list!