Clare UK Posted December 20, 2012 Share Posted December 20, 2012 Hi there. Been reading through the forum since last night and at times I've smiled, wept and at the same time so grateful that I found you... 7 months ago my mum was diagnosed with SCLC. By the time it was discovered, it had already spread to several other areas in her abdomen and so palliative care was the only option for us. 6 treatments of chemo and 5 days of radiotherapy and we are at the end of treatment options for her. Whilst at first I was worried about treatment - concerns over side effects and quality of life, the chemo has been fantastic and really gave mum her life back. She coped admirably with very few complications and just 2 or 3 days of illness every cycle, almost like extreme flu is how she described it. The radiotherapy, which has little evidence of success for SCLC was given more to reduce the risk of metastasis to the brain. However, mum wishes that she had not had this as she has been feeling to ill and tired to even leave the house these last three weeks. We're all just hoping that the small improvements this week will continue and she will be well enough to try and enjoy what will undoubtedly be her last Christmas with us. So far, all facts, but no emotion. And herein lies my problem. As the eldest of 2 children, I'm my mum's main carer and recently left my job to spend as much time as i can with her whilst she is well and to care for her once her health starts to deteriorate. My stepdad is self employed and so can't take so much time off to care for my mum. Also, my mum plays down the severity of her situation a lot, especially with my dad. As I attend the appointments with her, I am possibly the only other person that realises how dire her prognosis really is. Being the eldest, the one who is always so strong, the one who just gets on with things, the one everyone leans on. But who can I lean on? Who can I ask why this should happen to my otherwise healthy mum who is just 54 years old? Who can I tell that I'm terrified about what might happen next? I try to talk to my partner, but on the rare occasion that I can't hold it in any longer and get upset, he tries to make a joke to cheer me up. He's not deliberately being mean, he just doesn't understand that I need to rant, cry, sob at someone. So, this is why I'm glad I found you - already just in admitting that I'm scared and upset, it's helped me shed the tears I can never find. That i usually refuse to succumb to. That prove that I am not emotionally numb and heartless... Hopefully in time those tears won't be followed by guilt about being upset when I still have my health and my life ahead of me. Or shame that I might not be able to cope when my family needs me the most. Sorry, I've totally rambled, and maybe not even made much sense. But already it's been a huge help. Quote Link to comment Share on other sites More sharing options...
michellep Posted December 20, 2012 Share Posted December 20, 2012 I'm so sorry to hear about your mom. But I'm happy you found Lungevity. Everyone here is just so wonderful and it's a safe place for you to come and talk about what's going on with your mom and your feelings as well. Feel free to rant and cry and ask any questions you want. We are here for you! I came here in 2009 shortly after my husband was diagnosed with nsclc and everyone here helped me more than they will ever know. I too didn't have anyone close to me who truly understood so I understand how you feel. ((hugs)) Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 20, 2012 Share Posted December 20, 2012 I have ben around since 2005 roughly.. It is hard but vent away there is always someone here to answer and read and help out... Quote Link to comment Share on other sites More sharing options...
AnnieRSA Posted December 21, 2012 Share Posted December 21, 2012 If its any consolation I'm the eldest in our family and my mom is also diagnosed with the beast. So i kinda know what its like. Living everyday on hope and prayers is not too easy. But has its rewards. Everyday is something new and we find blessings in small ways. Your mom is a total star by being so strong!!! Hug her for us all Try to stay positive that the best will always come. Even in the worst of situations know that God has a plan for us all. And feel free to vent and share as much as your heart desires! Much love! Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
ToBeGolden Posted December 21, 2012 Share Posted December 21, 2012 Yes, we are here to support one another. Posting does provide a form of relief. I am a patient. Metastases from the larynx to the lungs. Things don't look too bright for me either. But all we can do is face every day, and try to extract a little happiness. By the way, I think that cancer is often more hard on the caregiver(s) than on the patient. Rick. Quote Link to comment Share on other sites More sharing options...
Clare UK Posted December 22, 2012 Author Share Posted December 22, 2012 Hey guys, Thanks for your kind words! Mum starting to improve a little each day from the side effects from the radiotherapy so we're just hoping that she's well enough to enjoy Christmas and has enough appetite to share Xmas dinner with us. This last week has been hard though - every time I speak to her to try and encourage her to leave the house, to come shopping, come over my house, go out for coffee, she is too tired, or it's too cold outside, this is fine, but then she goes shopping with my dad, or goes visit at her friend's house, goes out for cake with friends. I'm glad that she's getting out, but I can't help but think that she is avoiding spending time with me ... Especially as this week I haven't been able to spend as much time as usual at her house as I normally do. In fact, I haven't seen her for 4 days. Even before she was I'll, I used to see her every other day. I don't think she is deliberately being hurtful, but she is my mum and i guess instinct dictates that she protects me and maybe she doesn't want me to see her when she is so down ... I don't know. Anyways, I'm taking her grocery shopping tomorrow so we will see ... Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 22, 2012 Share Posted December 22, 2012 enjoy the time spent with your mom.. it is hard to kinda get used to being in the situation she is in. it takes a toll on the body and the mind of everyone around the patient and the family and friends .. Quote Link to comment Share on other sites More sharing options...
Clare UK Posted December 22, 2012 Author Share Posted December 22, 2012 Thanks Randy! Even after 6 months, it's sometimes still hard to know what to say to her ... Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 22, 2012 Share Posted December 22, 2012 be yourself enjoy the time.. remember yesterday, cherish today and pray for tomorrow... Quote Link to comment Share on other sites More sharing options...
michellep Posted December 22, 2012 Share Posted December 22, 2012 Randy said it very well Quote Link to comment Share on other sites More sharing options...
dianew Posted December 22, 2012 Share Posted December 22, 2012 Hi - I'm coming in very late and am a patient, not a caregiver, but I did want to say welcome. I'm sorry you have the need to find us here, but this is a great place to to come, as you can see from many of the family members and caregivers here that understand what it is like. Please keep us posted on how you and your mom are doing. Diane Quote Link to comment Share on other sites More sharing options...
Trawna Posted December 23, 2012 Share Posted December 23, 2012 I'm coming in very late and am a patient, not a caregiver, but I did want to say welcome. I'm sorry you have the need to find us here, but this is a great place to to come, as you can see from many of the family members and caregivers here that understand what it is like. Diane said exactly my thoughts, except I was the caregiver for my husband of almost 40 years. I found this site and joined in early 2008 and, like Michelle, I found it was almost a lifesaver, literally, during the last year of my husband's life and after as I travel along the grieving path. Welcome to you. I am sure that you will find it very supportive for you here. Talk, ask questions, vent ... we will be here for you. Jane Quote Link to comment Share on other sites More sharing options...
Clare UK Posted December 27, 2012 Author Share Posted December 27, 2012 Thanks everyone. Hope you all were able to spend time with loved ones over the holidays. After a few days of feeling quite poorly, thankfully mum was well enough to come for Christmas and even managed to eat Xmas lunch with us. She must have been feeling better because she was definitely back to her usual bossy self! Kind of dreading new year, knowing that next year will be far from happy in too many ways. However, we cannot make time stand still so will be focussing on making more happy memories for our family x Quote Link to comment Share on other sites More sharing options...
michellep Posted December 27, 2012 Share Posted December 27, 2012 I'm so happy to hear your mom was able to enjoy Christmas with you! Please keep us updated on how she is doing and feel free to post....post and post dear one Quote Link to comment Share on other sites More sharing options...
eblue16 Posted December 29, 2012 Share Posted December 29, 2012 Clare, I can relate a lot to your story because my dad is relatively young, 48 and was otherwise healthy. So if was a scary surprise for us. I also hide the emotions because I know it's important to stay strong and hopeful. We are still early on I. His treatment, so we are full of hope, but the days that he's not feeling well and not himself are the worst and it makes me wonder if I'm doing all I can and helping him stay positive. While its tough I think it's best for us to just take as much time to focus on our parents and not on the cancer. That's what I try to do at least. I hate that he is constantly worried about it but I think we can do our part in helping that and you sound like you are doing a great job!! Quote Link to comment Share on other sites More sharing options...
Trawna Posted December 30, 2012 Share Posted December 30, 2012 Hi Clare: I am very glad to hear that your Mum was feeling pretty good on Christmas Day, and hope that she continues feeling better for a good long time. Happy New Year to you and your Mom! Quote Link to comment Share on other sites More sharing options...
Clare UK Posted January 24, 2013 Author Share Posted January 24, 2013 Hey guys, thanks for all your warm wishes. Mum finally started to recover from the radiotherapy although still not as well as she was beforehand. She caught a bit of a cold over the last week so has been a bit worse over the weekend and really poorly today. We had an appointment with her consultant today and she has a new lump. Also, one of the ones which had reduced so dramatically during chemo you couldn't feel it anymore is also back. Her appetite is gone and she is being sick a lot. We have to wait for a scan to be sure but it looks like just 2 short months after her chemo ended, which had such positive results in giving her improved quality of life and dramatic pain reduction, we are already back on the downward spiral. I knew this would happen. I just didn't expect it to be so soon and for it to happen so fast. I always wondered if the radiotherapy side effects were really the cancer already starting to grow and that's why they seemed to get worse rather than better. I suspect my mom thought this too but didn't want to worry us as she was so matter of fact and unsurprised about the whole thing. I'm so scared. Apart from when I went away to Uni, there isn't a day in my whole life where I haven't at least spoken to her on the phone. The thought that she could have so little time left terrifies me... Quote Link to comment Share on other sites More sharing options...
michellep Posted January 24, 2013 Share Posted January 24, 2013 Clare, I'm saddened to see your post and my heart breaks for you....but please try to keep positive. There are many here who have fought such hard battles and won. Yes, there are some who have lost but I truly believe a positive attitude is a good thing. Come here as often as you want to talk or vent if you wish. We understand and will always be here for you dear one. ((hugs)) Quote Link to comment Share on other sites More sharing options...
dianew Posted January 24, 2013 Share Posted January 24, 2013 I am also so very sorry to hear that things are not going as well as had been hoped. Michelle is right however, and you do have stay positive and not lose hope. These types of setbacks are not unusual, but often times can turn around without a different treatment. Your mom is very lucky to have you, and no matter what the future holds cherish all the time you get to spend with her. Quote Link to comment Share on other sites More sharing options...
Trawna Posted January 25, 2013 Share Posted January 25, 2013 Dear Clare, Whatever the outcome from this setback, do keep the wonderful close relationship with your Mum as long as you can. Even when my husband fell into a coma towards the end, I used to put my head on his pillow and whisper into his ear. (There were others around and some of the things I wanted to say to him I did not want others to hear.) My husband was a Star Trek nut, so about 7:25 pm I whispered to him that I would turn on Star Wars on the TV if he wanted, but that our daughter was there and she wanted to see the baseball game, so would it be okay to watch the ball game instead. He smiled very slowly and said it quite clearly -- the first words he had said in 3 days -- and he said "Play ball". So I know that even though we all thought he was non compos mentis, he really wasn't, and he could still hear and even (at least that once) respond. Just as the ball game came on the screen (at 7:39 pm) he squeezed my hand and I leaned over to listen and to see if he might say something again. He said one sentence ..."I'll save you the seat next to me on the Voyager..." then took a single deep breath and stopped breathing and his heart stopped. I know he's now off travelling the universe with Capt. Picard and the crew. So keep talking to her, you never know what they may hear or be thinking late in their journey. Having said all this, I hope your Mum may find the strength to recover and have more time to spend with you. Peace to you and your Mum. Quote Link to comment Share on other sites More sharing options...
Clare UK Posted January 26, 2013 Author Share Posted January 26, 2013 Thanks Guys. Feeling so much better these last few days. Reading everyone's messages reminds me that we still have a lot to be thankful for. Six months ago, we didn't dare hope that mum would still be here to enjoy Christmas and today, tomorrow or even next week isn't the end. I guess, like mum, I will have good days, awful days and several that are somewhere in between so I'm trying to stay positive and view each day and week as a blessing. Already mum is feeling a bit better, her cold is shifting, the new steroids have stopped the vomiting and hopefully over the next few days her appetite will pick back up. One ray of sunshine she sees is that finally she has a nice healthy BMI of 26 having lost 21 pounds over the last 6 months. So, if mum can find things to smile and joke about, then so too shall I!! Not that it's doing my BMI any good. For the first time in her life, she has a sweet tooth! I never saw her eat so much chocolate!! So, when her appetite is down and she can't eat, I've started asking her to share a regular sized chocolate bar with me. If I use the excuse I'm trying to lose a few pounds so don't want a full one, she'll have a small piece and then eat the full half that I've gave her She went out with her friends tonight, just to bingo. But the first time in almost 2 weeks which is good news and she has my son staying over with her tonight. He loves her so much. He's 9. He knows she has cancer, but I haven't yet told him that she's not going to get better and I haven't broached the subject of her dying with him. I will have to eventually. But, he hasn't asked and so I'll save that conversation for another time. So, progress indeed and I've decided there's no point worrying until we have the scan and the results which will be another 2-3 weeks yet! Quote Link to comment Share on other sites More sharing options...
Clare UK Posted January 26, 2013 Author Share Posted January 26, 2013 Also, I meant to day, Trawna, thank you for sharing your lovely story. It is truly heartbreaking and I just wanted to be able to reach through my computer and give you a hug. Yet at the same time, it is so uplifting. I hope that one day I can find the same strength that you all have and my love and best wishes to you all x Quote Link to comment Share on other sites More sharing options...
Trawna Posted January 26, 2013 Share Posted January 26, 2013 Thanks and (((HUGS))) back to you, Clare. I am so very happy to hear that your Mum seems to be making a wonderful comeback . Do tell her that she has people all over the world cheering her on! Jane Quote Link to comment Share on other sites More sharing options...
Clare UK Posted January 31, 2013 Author Share Posted January 31, 2013 We got the scan date through - 2 weeks yesterday. If that's an emergency then yikes for everyone else is all I can say! Then back to the onc on 20th feb for results. Keeping my fingers crossed that on the day, I can keep it together for my mum and myself if the news is not good. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 31, 2013 Share Posted January 31, 2013 the thing is you have to be very very positive up front for scan results.. but the little what if in the back of your mind has to be prepared in case....Hoping for great results... let us know.. Quote Link to comment Share on other sites More sharing options...
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