Pstar Posted November 22, 2022 Share Posted November 22, 2022 Very good news Justin. Hoping and praying that this will be the end of the steroids and treatment and only scans in your future. Good luck with the physio. Pam Tom Galli, LouT, catlady91 and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 26, 2022 Author Share Posted November 26, 2022 Hi everyone So I spoke with the neurosurgeon and they are really pleased with the result of the operation and sure they got it all out, it is the same as my lung cancer so not a new variant I have a follow up mri scan December 28th and then every 3 months after that, he told me if i ever need them in the future they would be more than happy to help me again which was really reassuring to know, i went to physio and have some really good excersises to do which I'm sure will help they were really helpful and happy with the progress I have already made my coordination is coming back great and the movement and mobility are getting better everyday, I feel so much better in myself now , I am gradually being taken down on the dexamethasone steroids which is both worrying and brilliant because I'm afraid things will go wrong if I stop them but glad to get rid of the bloatedness in my face stomach and neck it's so uncomfortable now and really don't like it I know it's a small price to pay but I just want to be myself again, I went for a coffee and a mile walk yesterday with my wife and bonnie and it felt fantastic to just be out again I do feel very fatigued but was told to expect that for 6 to 8 weeks but I am sleeping better now I'm more mobile so all in all I am having some good news to update for a change lol, I hope everyone is doing well take care Justin x Tom Galli, Izzy, CH29 and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Izzy Posted November 26, 2022 Share Posted November 26, 2022 Hi all, just the news we were hoping for and needed. Jus has been incredible thro this massive battle and we are so very very proud of him. I know it's been really tough Jus and you would have wanted to give up, and I know we've pushed you to your limit , but you've never given up and it's paying off, keep up this brilliant attitude you have as it not only helps you and us but everyone on this site, you are an inspiration and we love you very much and here's to a better future xxx love you sonzie xx mum xxxx Justin1970, LouT and catlady91 2 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted November 26, 2022 Share Posted November 26, 2022 Great news Justin! Keep up the positive attitude and the physical conditioning... Lou Justin1970, catlady91 and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted November 26, 2022 Share Posted November 26, 2022 That is really awesome Justin! Now you enjoy the holidays and time with family. Put this cancer thing away for awhile and try to only have good thoughts. Pam Justin1970, Izzy, catlady91 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted November 26, 2022 Share Posted November 26, 2022 Great news, Justin! Better days are ahead. Enjoy the little things. Justin1970, LouT and catlady91 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 26, 2022 Author Share Posted November 26, 2022 Hi Thank you everyone for your kind messages and support throughout my journey,all of you have really helped me and I have needed your support along with my family and friends who have been absolutely fantastic and so loving and caring and strong for me and each other, they really are a special family that I have been lucky to be part of and really couldn't have done it without them and I can't forget my lovely puppy bonnie who I got at the start of my cancer battle who really has made me so happy and been there every step of the way, Hopefully now I can just get on with living and enjoying my life, Thank you again all the best and take care Justin x catlady91, LouT, Cody foote and 3 others 6 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted November 26, 2022 Share Posted November 26, 2022 What a wonderful update @Justin1970, time to celebrate! Did they finalize your pathology report? Izzy, catlady91, Tom Galli and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted November 26, 2022 Share Posted November 26, 2022 Justin, I’m so pleased to hear this report. I’m sure it’s nothing compared to what you’re feeling! May this be the start of a lovely holiday season. Izzy, catlady91, Tom Galli and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted November 28, 2022 Share Posted November 28, 2022 I'm so happy to hear this great news Justin! Now you can relax and enjoy the holidays. I'm hoping that the good news will keep on coming. Will you need any cancer related treatment or are you clear? Hopefully you'll be NED. Tom Galli, Justin1970, Karen_L and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 28, 2022 Author Share Posted November 28, 2022 Hi I would presume from what was said its the same cancer as my lung so no new biomarkers and at the moment I don't need anymore cancer treatment, it would be nice to have a break from it all for a bit now, Take care Justin LouT, Karen_L, Izzy and 2 others 5 Quote Link to comment Share on other sites More sharing options...
AleHondaa Posted November 30, 2022 Share Posted November 30, 2022 Hi Justin I’ve been catching up on your thread since my absence of the forums and I need to say that you are inspiring. We’ve all been through so much with all this fighting but damn you are a trooper. Keep giving it your all and never give up! Regardless on how bad things can be, they tend to get better. I learned that by being inspired by everyone on here including you! Keep Fighting, Ale LouT, Izzy, Tom Galli and 3 others 5 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 30, 2022 Author Share Posted November 30, 2022 Hi Ale Thank you for your message and support,I'm not sure how any of us fight the way we do but I do know we have to, I'm not sure I've been very inspiring to anyone lol,but if I have helped even one person through this in any way I'd be happy, I will keep fighting and wont give up ever, I hope your well and on the better side of everything all the best Take care Justin Tom Galli, Izzy, Cody foote and 3 others 6 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 21, 2022 Author Share Posted December 21, 2022 Hi everyone Just an update on what is going on in my cancer journey, as you know I was getting better and the physio was working well and I had a lot of my mobility back in my right side, but I stopped the dexamethasone steroids last Tuesday and unfortunately yesterday I started to feel like my arm,hand and leg were feeling strange and today I can't really use them again, my wife rang the cancer nurse who told her its very common for this to happen after brain surgery and to go back on the dexamethasone for another three weeks, I have a brain mri scan on the 28th December and a ct body scan on the 17th January so will know more then, I was beginning to think I might have a good Christmas this year after the bad one we had last year but sadly I don't think it's meant to be, if by some chance or miracle I get a little bit better in the next few days I will let you all know, I hope you are all well and enjoy the holidays Take care Justin x Izzy, LouT, LilyMir and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted December 21, 2022 Share Posted December 21, 2022 I am so sorry to hear this Justin, this must be quite distressing. I take it you respond to Dexa so hopefully it is just inflammation or something related to recovery from surgery and you feel better soon. Can you reach your oncologist and/or surgeon ASAP? I recommend that you not allow a nurse to handle your symptoms again and to demand talking to your doctors directly. Also, can't they move the MRI and CT to earlier? It may help to remind them that last time they dismissed your symptoms they messed up big time... This cancer journey is never certain and full of heartache but we must persevere. I have my CT scan tomorrow and I am so nervous too. Please try to have good time with family while also pressing hard for your doctors to take every symptom with the seriousness it deserves. Keep us posted and best wishes for a happy holidays. JHP, Justin1970, LouT and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 21, 2022 Author Share Posted December 21, 2022 Hi lily Goodluck tomorrow with your ct scan I really hope it's great news, When i had the surgery the surgeon did tell me there was a chance of this happening as there was a lot of inflammation and fluid and as everyone responds differently when coming off the dexamethasone it could be to soon, when we spoke to the cancer nurse she said she would have to talk to my oncologist so that they could advise what to do so rang us back with what they said hopefully by going back on the dexamethasone for a few more weeks will sort it, Please don't get to nervous about tomorrow and enjoy Christmas i bet your son is getting excited lol Take care Justin x Tom Galli, LouT, Cody foote and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted December 21, 2022 Share Posted December 21, 2022 Thanks Justin! Trying to relax a bit with calm music, in fact we had a big snow storm that shut Vancouver down today (yeah embarrassing but Vancouver cannot handle 30cm of snow, even all flights are cancelled!). It looks like a winter wonderland out there and it is -10C and with windchill feels like -15C so definitely feels Christmasy and we went tobaggoning in the neighbourhood today. Wishing you and the family the best, keep positive. Justin1970, Tom Galli, Izzy and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Izzy Posted December 21, 2022 Share Posted December 21, 2022 Jus !!!! Of course it will be a nice Christmas you've got a great family that will make sure it is, the future is much better than it was last year so let's enjoy it, your stronger now and yeah you've had a little setback but at least it's a normal thing not a new one x come on show us that spirit we know you have x can't do this on our own xxx love you very very much sweetheart xxxx Mum xxxx LouT, Cody foote, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted December 21, 2022 Share Posted December 21, 2022 I'm sorry to hear you're not feeling great Justin but like the nurse said it's normal so try not to worry. Unfortunately cancer treatment comes with many side effects. My mum has lost eight teeth because of the heavy radiation that she received and developed shingles and very bad pneumonitis due to immunotherapy. Even now she feels more tired than usual even though she's been off treatment for almost 2 years. Stay positive. Like your mum says, you're in a much better place than you were last year and you've got a wonderful and supportive family. The good news is that the surgeon said that the surgery was a success. Unfortunately cancer treatment comes with side effects but don't let it get you down or dampen your spirit. I wish you and your family a wonderful and very happy Christmas. Try to celebrate how far you've come x Justin1970, LouT, Tom Galli and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 21, 2022 Author Share Posted December 21, 2022 Hi mum and Monica Thank you for your messages,I know it's expected I've just had enough of it all going wrong now but I know it's part of the process, I will stay positive it's just a nightmare when you think your getting better and then you feel rough again, Monica I hope your mum feels better soon and you have a wonderful Christmas Take care Justin x BridgetO, catlady91, Izzy and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 4, 2023 Author Share Posted January 4, 2023 Hi everyone Just to let everyone know I was quite good over the Christmas period and even managed to do the cooking with my wife, unfortunately I've been cutting down the dexamethasone steroids to 1mg after starting them again for 3 weeks and the same thing is happening again my right arm hand and leg aren't working very well and feel very heavy, the oncologist has put me back on 2mg per day until I get the results of the MRI scan next week, I just wish I could stop the steroids but don't think I ever will I can't stand the way it has bloated my face and neck hopefully 2mg per day will be enough to reduce the swelling or fluid in my brain if that's what it is and be a low enough dose to stop the swelling in my face, I hope everyone is doing well and enjoyed the holiday all the best Take care Justin Cody foote, LouT, Tom Galli and 2 others 1 4 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 4, 2023 Share Posted January 4, 2023 Hang in there Justin, I am so sorry to hear this is still an issue for you, hope it will just be inflammation from the surgery. This cruel disease keeps messing our lives even when we survive, endless side effects and life alterations but keep your eyes on the main prize, you are still alive and kicking and enjoying life with your family whom I know cherish every day with you. Keep us posted with the MRI results, does not hurt to bug radiology and ask why your results are not out yet. My CT scan results were never relayed to me by my cancer centre (horrifying) and I do not see my oncologist until Jan 19! However, my amazing GP called me and told me the (good) results despite him being on vacation until mid Jan (he gets copied on reports). Now that is a great doctor, compare to my mostly heartless oncology team... LouT, Izzy, Tom Galli and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 4, 2023 Author Share Posted January 4, 2023 Hi lily Hopefully the steroids will kick in quickly and I think 2mg is a low amount from what I have read so hopefully not to many side effects, I get the results on Wednesday so not to long to wait I felt alright on the 2mg I only wanted to come off them because of the swelling in my face but like you say I am still here lol, it is relentless though never plain sailing is it lol,hope your well Take care Justin x LilyMir, RJN, Cody foote and 2 others 3 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 5, 2023 Share Posted January 5, 2023 So sorry to be replying to this thread so late Justin. Sorry you have to go back on the steroids but I guess it is a small price to pay for mobility. Hopefully they will reduce the swelling and you can get off of them for good! Praying for you. Pam Tom Galli, Izzy, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 8, 2023 Share Posted January 8, 2023 Oh, dear Justin, Steroids can be so hard. 2 mg. is a small amount. It may be that your body just needs more time to withdraw from them. I know when I was coming off them after large doses for 7 months, I got down to 2.5 mg, then had to go to 1 stupid mg. for a while while my body decided to wake up. Moonface is a lousy side effect. They say drinking a lot of water can help. Who knows. I'm just glad you had a good Christmas with your family. Our small cancer support group all agreed yesterday that all too often, lung cancer can be a full-time job. Hang in. K Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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