Justin1970 Posted February 10, 2023 Author Share Posted February 10, 2023 Hi everyone Just to let you know I am still here and trying to get back to normal, it's just over a week since the treatment finished and I really have felt lousy, the tiredness and fatigue are off the scale, I can't use my right side very well still and yesterday I noticed my hair coming out in lots of strands an absolute nightmare, I do now have a care nurse who has sorted out a lot of stuff for me and arranged physio at home to help get back on track, the dexamethasone has been put back up by 2mg for a week as she thinks it is to soon to cut the dosage in half I do agree with her, I've also had terrible constipation and sickness feeling but ginger biscuits has helped with the sickness, and I'm always really hot my whole head feels tender and its like a whole head headache they did warn me it would be a few weeks of worse symptoms they were right lol, I get the results from the ct scan of my chest abdomen and pelvis next Thursday so I'm a bit stressed about that aswell but I have started to realise I can't change what my future is but I can fight for it as I do want to do a lot of stuff still, and yellowstone doesn't come back on TV till july for the second half of the season and I can't miss that lol, I hope you are all well Take care Justin x Izzy, LilyMir and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted February 10, 2023 Share Posted February 10, 2023 Hi Justin….so glad you have a care nurse now, that should help a lot. Sorry that you are feeling so lousy and I do hope the symptoms from treatment will calm down soon. Hang in there. Your hair will grow back!…maybe a different color and texture but it will come. Pam Justin1970, Izzy and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 11, 2023 Share Posted February 11, 2023 Justin, Good to know you have the nurse and that she is advocating for you. Keep that spirit of working through one day at a time as that is what is needed when we feel so badly. Feeling stressed is no surprise as we are dealing with a terrible disease and treatments that can often bring more symptoms than the disease did. Keep on pushing through Justin, our prayers are with you. Lou Tom Galli, Justin1970 and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 11, 2023 Share Posted February 11, 2023 Stay the course Justin... Tom Justin1970, LouT and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 13, 2023 Share Posted February 13, 2023 You may be feeling worse (don't you love when they say, "Shortly, you will begin to feel worse....") but you sound better about the continuity of care your nurse is providing. One foot in front of the other.... Justin1970, Izzy, LouT and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted February 13, 2023 Share Posted February 13, 2023 Hi Justin, I am so sorry you are having such a lousy time. Hang in there, as you say -lots to do and Yellowstone to watch (I myself am holding out for Succession!) Take care and eat lots of ginger snaps! X Tom Galli, LouT, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 14, 2023 Author Share Posted February 14, 2023 Thank you all for your messages of support, The symptoms of this treatment are something else, the fatigue is terrible, hair is falling out the steroids have made me bloat, my right side mobility is still bad,I know they said it will take around 3 weeks of worsening symptoms but this is crazy, I had the physio this week and got a program in place, I'm trying to stay away from getting to low but lack of sleep isn't helping, I need to cut my hair but can't bring myself to do it, I've also got the results of the ct scan on Thursday which I'm dreading, hopefully some good news, Thanks again all my best wishes, Take care Justin Izzy, Tom Galli, RJN and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted February 14, 2023 Share Posted February 14, 2023 I know this is so tough for you Jus and my heart breaks for you but hang in there we're due a break !! Don't know how your coping with all this I'm so proud of you, It's so hard to know what to say cause nothing will make you feel any better, life can be so cruel, but your one tough cookie and If anyone can do this you can xxx love you very much xx Mum xxx LilyMir, LouT and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 15, 2023 Share Posted February 15, 2023 When my daughter started losing her hair (she had Burkitt lymphoma at age 22-- a grueling inpatient treatment regimen), she had one of the nurses shave her head. She said it helped her feel more in charge. Hang in, Justin. Izzy, Justin1970 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted February 15, 2023 Share Posted February 15, 2023 Praying that your ct scan results are good Justin. Justin1970, LouT and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted February 16, 2023 Share Posted February 16, 2023 Woke up this morning and wondered how you are, Justin. Crossing fingers and toes for your scan results today! LouT, Justin1970 and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 16, 2023 Author Share Posted February 16, 2023 Hi rikke I'm not to bad thank you, I'm dreading the results later but I know I can't change what the outcome is, on the plus side my foot and leg seem to be working a lot better so should be able to get about a bit more, I'm really not happy about my hair falling out or the fatigue, the dexamethasone has made my face and stomach very swollen and uncomfortable but they have reduced them now so that might help, i hope your well Take care Justin x Izzy, LouT and RJN 1 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 17, 2023 Author Share Posted February 17, 2023 Hi everyone Just an update on todays results from the body ct scan and there is no spreading of the cancer and the original lung cancer is still stable,finally some good news, I also have better movement in my right side now I think it's down to building up my strength again, the oncologist thinks there is no hurry to start chemotherapy yet because everything is starting to get better,but if it does start getting worse again I'll have to up the dose of steroids and start chemotherapy sooner, I really hope the whole brain radiotherapy treatment has done its job they said it will take around 12 weeks, my hair is still falling out badly but I have been referred to a hair loss person about having a wig made, So all In all a really good day and atleast no extra cancer to deal with so I can concentrate on trying to fight the brain cancer All the best Take care Justin x LilyMir, Izzy and catlady91 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 17, 2023 Share Posted February 17, 2023 Hurrah! What a good report, Justin. I'm glad you can take a moment and think about what's next. catlady91, Justin1970, Izzy and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 17, 2023 Share Posted February 17, 2023 Justin, Great new to hear. You deserve good news and you got it. The hair will grow back, but making progress on all fronts is a super thing to hear. Lou Justin1970, catlady91 and Izzy 1 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 17, 2023 Author Share Posted February 17, 2023 Thanks Karen It was some good news and a huge wait felt lifted knowing I didn't have to deal with any other cancer at the moment and just concentrate on the brain side of things, I wish I knew more about the whole brain radiotherapy treatment and how effective it is at treating the tumors but can't seem to find anything, I'm still not sleeping very well it's 4am here I've been up most of the night and it is a long time on your own with your thoughts but they are better thoughts tonight Take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 17, 2023 Author Share Posted February 17, 2023 Thanks lou Means a lot I definitely feel a lot better in myself maybe I can't sleep because I had some good news lol Take care Justin Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted February 17, 2023 Share Posted February 17, 2023 So happy you got positive news with your scan results and that movement is getting better on your right side. Sleep is elusive for myself as well and you are right that it is a long time with your thoughts but at least they are better for you. Tom Galli, LouT, Izzy and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 17, 2023 Author Share Posted February 17, 2023 Thank you pam I did need some good news, hopefully it will keep coming, the sleeping is terrible isn't it I'm so tired but your right atleast they are better thoughts, Hope your well take care Justin x LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted February 17, 2023 Share Posted February 17, 2023 Such good news to hear Justin, you made my day! The sleep thing is pervasive. I don's sleep well at all despite being told I am NED for now. I lately have been feeling so much fatigue and my mind is going in all directions expecting horrible reasons, remembering how fatigue was my only symptoms before diagnosis etc. It is a horrible thing to have cancer, and we must learn to savour the little joys and battles won. Try to focus on the good news and look forward to Spring. I woke up to a freezing morning again but saw our tulips have started to sprout! I now focus on watching them grow and bloom soon, I am not thinking past that. Live the moment and celebrate. LouT, Justin1970 and Izzy 1 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 17, 2023 Author Share Posted February 17, 2023 Hi lily Thank you it is really good news I just can't afford to be to overwhelmed by it incase it gets worse in my brain again, but I am happier about everything and I've now booked a consultation with the hair loss team so feel better about that aswell, I wish I could sleep better and the fatigue would get a bit easier but they told me it will take a while, I'm glad your well Take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted February 17, 2023 Share Posted February 17, 2023 I'm so so pleased for you Justin. Your news has made my day, well evening 😊. It seems like there's every reason to be hopeful. I'm glad that you're getting some of the feeling back on your right side. This seems very encouraging. I'm hoping that they'll be more good news to follow ❤️. LouT, Izzy and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted February 17, 2023 Share Posted February 17, 2023 Oh, that is wonderful! So happy to hear this. You deserve some good news and a break! Izzy, Justin1970 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 18, 2023 Author Share Posted February 18, 2023 Hi Monica and rikke Thank you for your messages and your support take care Justin x LouT, catlady91, Izzy and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 18, 2023 Share Posted February 18, 2023 Justin I'm so happy you finally got some good news. I have been following your posts wow you've been through a lot. I'm praying for you and your family. Take care buddy Chuck LouT, Justin1970 and Izzy 1 2 Quote Link to comment Share on other sites More sharing options...
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