Another new year begins

The world doesn't seem right when someone you love leaves it. Yes, death comes to everyone, touches everyone and life goes on, but it's SO unbelievably difficult for those still alive. Grief. Loss. Loneliness. Mourning. Sadness. I've read about the stages of grief. Three, five, seven. All about how we all grieve in our own way. How time heals. How it gets better. What can I say> Apart from "Not too great so far!" Yes I cope. I'm trying really hard to get on with my life. I'm so grateful for my sons who make life worthwhile. I have wonderful friends who help. I try not to look back too much. I try to be positive. My emotions have always been close to the surface. I laugh easily and cry easily. Anger flares up and goes just as quickly. I can't bottle things up. I know that it’s important to remember that you are not your emotions — you have the ability to decide if they lead you or if you lead them. So I seek out happy moments. I plan for good times. Things may not be going the way Tom and I planned (and oh how we planned!) but I'll still travel, and enjoy retirement in as many ways as I can. Tom's lovely cousin Penny died last night. I managed to visit her last week. She was amazing. She knew she was in the process of dying and was extremely happy to have so many people who loved her coming to talk and spend some time with her. She told us if anyone could have a perfect death, then this was it. We read poetry. We sang songs. We laughed. We cried. Tom loved her and she talked a little about how much she loved him too. What's not to love about either of them? They spread love and kindness, laughter and wisdom. Love lives on.

Why not blog more?

Well, it's almost a year since my last blog, so I am consistent! That reminds me of movies and telly programmes when you hear someone say "Forgive me Father, it's been a year since my last confession" and maybe blogging is a bit like the confessional. You can tell all your sins, worries and whatever and get them off your chest. One wee annoyance which has stopped me from journalling on occasion, is that Blogger doesn't seem to understand that as well as being allihobbit from the UK I am also Allison Carroll in USA. So when I try to switch from one to the other and log in, it all gets very confusing and I get messages about not having the right e-mail or password or both! I think it's simple enough but ........ oh well. No big deal really. Life has changed dramatically once again. Glioblastoma finally got the better of my wonderful Tom, and he died on the morning of Saturday 20th June 2015, two years and nine days after the first brain tumour was discovered. He fought every day to live and do as much as he could. He hated having to give up work and longed to be with his students again. He never complained about all the treatments and changes that cancer brings. I would tease him and say when he had a cold he was miserable, but brain cancer? No problem! I was, and still am, brokenhearted. I miss him so much that sometimes I cannot bear to think about anything. Some days I want to think about and remember every detail of the times we had together. I want to talk about him. I don't want anyone to forget him. Most of all I want him to be here. Impossible, I know. In the last few days of his life, he would look at me, and we both knew it was almost over. He couldn't speak, but would stare at me and squeeze my hand. He managed to smile when Maggie came to visit. I believe he was happy to see us both together. Pam, Emily and Kerry stayed with me throughout the last days and, along with Paulette and Neil, kept me going. They did everything! I really don't know what I would have done without any of them. Neil was amazing. He made me smile and laugh when I believed I would never do either again, yet he seemed to know when I needed to be alone. Paulette is still at my side whenever I need her, and believe me, that's often! I will be forever grateful for their love and strength. I was totally numb for SO long. The summer was a blur. Neil and I went to Panama City Beach in July. The ocean and the break from everything was good, and we enjoyed the sunshine. When he went home and I was on my own it was devastating. Everything I looked at reminded me of Tom and the fact that he would never be with me again. Tears and heartache, day and night. In September I had a Shindig for Tom. A memorial but without a service. It was so lovely to see family and friends who loved him and cared for me too. We gathered together, ate, had a few drinks and shared memories. Tom would have loved it! I couldn't have done it without Stef, who also helped me choose a new car, and then we drove to New Orleans for a well needed break. I love that he chooses to spend time with me and seems to enjoy it! Christmas was better than I imagined in Scotland. My family and friends there went all out to make that first difficult Christmas and New Year less painful. Getting through those anniversaries is tough, but I am surrounded by those who care and help me in every way they can. Thank you all. Am I coping now? Mostly. I'm lucky that being on my own isn't a big deal. Not what I want, but shit happens, and you go on. Crying? Every single day, still, almost nine months later. I'm a mess! The life we planned and looked forward to cannot be. Tom worked so hard, saved for his retirement and wanted us to travel and he can't fulfil those wishes. I will try to travel. Tom will be with me in spirit, in my heart, where he always has been, and will be forever. Bhudda said "The trouble is, you think you have time" and that's so true. So more than ever now I tell myself "Just do it" because maybe time will run out, a lot sooner than you think. What will my life be now? I still can't figure that one out. I'm plodding along, with no real purpose. For the moment, I have to "just be" and that's enough. Friends have been wonderful, and encourage me to "do things" and I go along with that now and then. I play with beads, or crochet or knit and time passes. I cuddle my cats. They tolerate me and purr sometimes. I'm told that time heals. I have to believe that, because I don't want to feel like this forever. Sadness is not a good way of life. Grief is something we have to get through. For now, I have to find joy in simple everyday things. Happiness comes from within. I have a lot to be grateful for! I'm not good yet, but I will be!! I know I have a positive outlook, so a new chapter in the book of life awaits. Here's to moving forward!

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