Justin1970 Posted January 18, 2023 Author Share Posted January 18, 2023 Hi lily Thank you I had the ct scan done today for the chest abdomen and pelvis so won't get results for atleast a couple of weeks, tomorrow is scan of the brain again and face mask fitting,i am worried about having the mask made my friend had it done and he said it was a really strange thing, they said my hair will start falling out in a couple of weeks I'm absolutely dreading that but have bought a new hat ready i can't believe i got through all the chemotherapy without losing my hair and now i will,I'm still not sure all this is worth doing but I know if I don't it's like i have just given up on everyone and everything I've fought for up until this point, I know everyone on here is going or gone through similar things but I really have had enough of cancer now it really is relentless and changes your whole life, I will definitely update you all, Thanks again for your message hope you're well take care Justin x Izzy 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 18, 2023 Share Posted January 18, 2023 Listen Justin, some look more handsome with no hair so don't knock it until you've tried it Wishing you the best of luck. I am sure the mask fitting will not be nearly as bad as the surgery or chemo. Hope it goes so fast. Take some Ativan if your doctors allow, it usually makes me less edgy. Let us hope the whole brain radiation fries this darn cancer lesion once and for all. LouT, Izzy and Justin1970 1 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 18, 2023 Share Posted January 18, 2023 Are they molding the mask to your face Justin? I had that done for my gamma knife radiosurgery. It was a little strange but not that bad. The unknown always is. I wasn’t able to open my eyes and a little hard to open my mouth but I got thru it. My treatment was about 20 minutes long.I lost my hair when I had chemo but it started to grow back really quick.Wishing you the best and sending prayers and positive thoughts your way. Pam Izzy, Justin1970 and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 18, 2023 Author Share Posted January 18, 2023 Hi lily and pam I've had the scan and the mask fitting done this morning there was really nothing to it it wasn't even uncomfortable, the radiographer said that I won't lose all my hair either and that I didn't have to cut my beard,I start the treatment next Thursday till the following Wednesday excluding weekend, so all in all quite a good day seeing I was worried sick about it all take care Justin x Pstar, Tom Galli, Izzy and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Izzy Posted January 18, 2023 Share Posted January 18, 2023 Well done Jus for today I know how worried you were, very very proud of you it never ceases to amaze me how brave you are putting yourself thro all this, it must be so tough for you and I know your doing this for all of us just wish I could help you like I did when you were little x breaks my heart that you have to go thro all this I just wish it was me, just remember how important you are to us all and how much we all love you, you'll get there of that I'm sure, and remember there's no love like a mothers xxxx love you sweetheart xxx all my love xxx mum xxx Pstar, Justin1970 and LilyMir 1 1 1 Quote Link to comment Share on other sites More sharing options...
Kamoto Posted January 19, 2023 Share Posted January 19, 2023 Hi Justin. Do what is right for you. I hadn’t seen what your up against but all I can do is pray for you. Kindly kamoto Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 19, 2023 Share Posted January 19, 2023 Justin, Well, once again, you've gotten through more scary stuff. Good for you. Who knew we had the fortitude to just keep putting one foot in front of the other? That's really all this seems to be some times: The Big Lung Cancer Slog. Well, at least you have a little time before your next phase to rest a bit, or enjoy a guilty pleasure. Keep it up! Karen Justin1970, Izzy, Tom Galli and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 19, 2023 Author Share Posted January 19, 2023 Hi Kamoto, Thankyou for your message and prayers, Hi Karen, Thankyou, It really does seem to be one thing after another,I really do hope that this treatment will work it is strange how we find the strength to keep fighting after all the setbacks and failures, hopefully the chest scan will be good and I won't need anymore chemotherapy for a while, luckily I can still take bonnie out for a walk I really look forward to that, I hope your well take care Justin x LouT, Karen_L, Izzy and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 22, 2023 Author Share Posted January 22, 2023 Hi everyone Just an update, I had another seizure yesterday so obviously the brain mets, fluid or the swelling is getting worse, my right side mobility is worse again and my right arm and hand is swollen possibly water retention from the dexamethasone, I start the wbrt on Thursday but I really have doubts about the effectiveness of it and can't really see the point in going through it just to be let down again by another treatment but the alternative is to just give up, it really is a nightmare situation to be in, I want to be positive about it all but can't seem to allow myself to be, I may go a bit quiet on the forum for a while because I don't want to bring everyone else down with me it's so sad to see my family like this and I know how hard it is for them, hopefully i won't have anymore seizures before the treatment starts and this time it will work, I get the ct scan results of my chest on the 16th February so a bit more anxiety,hope your all well Take care Justin LouT, catlady91 and Izzy 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted January 22, 2023 Share Posted January 22, 2023 I'm so sorry to hear that you're going through this Justin. Please DO post on here and say how you're feeling; this forum is for support and help, not just for success stories. You're not bringing anybody else down. I can understand your frustation and disappointment. I think you should go ahead with the treatment. If the doctors didn't think that there would be a chance that it would work, they wouldn't offer it to you especially not on the NHS which is known for their cuts and budgets. Some treatments don't work unfortunately, but it doesn't mean that others won't. Many people on here have gone through trial and error with treatment. Perhaps you could talk to your oncologist about if you have any cancer markers or your level of PDL1 so that targeted therapy or immunotherapy may be options. Perhaps you could also see if you're eligible for any clinical trials. Clinical trials have been a lifeline for many cancer sufferers who wouldn't be here today if it wasn't for the trials. But I definitely think that it's positive that you have options and that the doctors aren't giving up and are trying different treatment options. I know it's very hard but try to keep your chin up. Nothing is impossible. There have been people with lung cancer who have been where you are and years later they're living to tell the story. Tom is one of them xx Izzy, Justin1970, LilyMir and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted January 22, 2023 Share Posted January 22, 2023 Thanks Catlady for your positivity it means a great deal. Jus is feeling pretty despondent at the moment as nothing seems to be working, I've said the same thing they wouldn't waste funds if they didn't think there was a good chance it would work, it's so hard for him and he worries so much about everyone else, I feel so helpless as all I can do is be here to support him and as a mum you just want to make it better. I have faith that this will be the one that will work for him, thanks for your support it's much appreciated, Take care, Isla LilyMir, Justin1970, LouT and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted January 22, 2023 Share Posted January 22, 2023 Never lose hope. The doctors obviously still thinks there's a chance. Surgery isn't always the best option for people. I've heard that it's possible for undetected cancer cells to be left behind during surgery and they start to grow again. Incurable doesn't mean untreatable, hopeless or terminal. Cancer is being treated more and more like a chronic illness like AIDS or diabetes. Some argue whether or not cancer is truly curable as it can always return. There are more and more treatments being approved. When is the next meeting with the oncologist? When my mum was going through treatment she wrote down a list of questions to ask and she'd write down the answers and doctors comments for example when the doctor said she had "excellent response to treatment". It really helps to have a record of what is said and to ask questions so you're as well informed as possible. We're here for you. You're not alone. The majority of us have been through this dark hole but there is a light there even if it doesn't seem likely xx LouT, Izzy, Justin1970 and 2 others 3 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted January 22, 2023 Share Posted January 22, 2023 Absolutely !!!!! As I've said where there's life there's hope xx catlady91, Justin1970 and LouT 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 22, 2023 Share Posted January 22, 2023 @Justin1970, this is our support group, not our celebration forum, and it exists mostly for these times when a patient needs as much help and encouragement as possible so please stay in touch here and keep the updates coming. Someone may have a suggestion or advice for any situation. If anything, people will send you their prayers and best wishes and keep you company on your journey. I am still stunned you have to wait weeks for a chest CT result in your current situation, it is criminal in my view. If you have family members who are good at advocating, have them push for immediate reporting on your chest CT so you all know what is going on. I find it extremely hard to believe that your radiation oncologist, who will start treatment soon, does not know what the situation is in your chest, this does on make sense. Also, can they not push the treatment time any earlier given your seizure? Were your oncology doctors informed of the latest episode? We are all rooting for you Justin, keep fighting. As @catlady91 also mentioned, if radiation does not stomp the brain mets, ask for clinical trials. Many people survive because of clinical trials. Take care. Izzy, catlady91, LouT and 2 others 3 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 22, 2023 Share Posted January 22, 2023 I agree with cat lady and Lily. Please keep us updated and share your feelings. We are all here for you. Sending thoughts and prayers your way. Pam catlady91, Justin1970, LouT and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 23, 2023 Author Share Posted January 23, 2023 Thanks for your messages I'm just a bit down about it all now that's all, it does seem to be one thing after another because nothing worked, I will ring the cancer team today about the seizure activity on Saturday and hopefully they will give me a higher dose of the steroids to stop it I haven't had any further problems so far, I'll get this radiotherapy out of the way and try and get the results of the chest scan quicker, I won't give up fighting and really appreciate the support rom you all thanks again and take care Justin x BridgetO, LouT, Izzy and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 23, 2023 Share Posted January 23, 2023 Justin, We are not only here to learn about good scans and NED...we celebrate those posts because of our sincere desire for everyone to survive this disease. But make no mistake about it; we are as much here to provide support to our LC Family when things are tough, unpredictable, and downright bad. So, don't stop posting unless you need a break from it. We are speaking honestly when we say, "we are here for you.". No need for you to stop posting or worry about "bringing us down". Our thoughts and prayers remain with you during this difficult time. Lou LilyMir, Tom Galli, Scruboak and 3 others 5 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 23, 2023 Share Posted January 23, 2023 Stay the course Justin! Tom Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 24, 2023 Share Posted January 24, 2023 Justin, Just to be completely honest, what makes you think none of us are already down? I mean, stupid lung cancer is no picnic. Over and over we remind each other to take one day, one hour at a time, to seek beauty and joy, to love our closest people deeply. Sometimes we have to work hard to find the positives in each day. But that's part of our shared work on this forum, isn't it? To remind each other to live and love deeply and fully today. Now is especially the time for you to be here. If it helps you, report in every day, as often as you need. I think of you daily, and send strength. Karen Scruboak, LilyMir, Justin1970 and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 24, 2023 Share Posted January 24, 2023 Well said @Karen_L, we are almost all suffering one way or another, if not physically then mentally. Each day has at least a grief period for me, not to mention the constant struggle with treatment side effects. The other day we went for a play date outdoors so my son can socialize a bit outside of school. We remain masked everywhere and stick to outdoor stuff with others. It was so depressing to see how everyone our age was seemingly having a happy go lucky life, no cancer, no worry, no precautions, parties, vacations... just like how life would be for a family of a first grader. Felt so depressing that I am now the cancer stricken person, ruining life for my family too. But then again, you listen to people and their "problems" and see how none of us is really happy it seems in this day and age. I wish I can go back to being healthy like them, while maintaining my new talent of not caring about absolutely anything except my family and living quietly in peace. Stay in touch @Justin1970, you are a special member of this forum who is always there for others so don't be surprised that many will be here for you, anytime, every time. Justin1970, Karen_L and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted January 26, 2023 Share Posted January 26, 2023 Others have said it better than I can but I'll put in my two cents worth, even if it's not original. You have a family who loves you and, in addition, you have a Lungevity family her who is rooting for you all the time. Hang in ther, Justin, and keep us up to date. LouT, Tom Galli and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 26, 2023 Share Posted January 26, 2023 Justin, I'm so sorry for what you're going through. You may not remember my story, but I almost died from sepsis exactly one month after my chemo and radiation treatments ended, almost 3 years ago now. I was extremely sick and I was ready to give up. I couldn't see a way out of my suffering. But somehow I made it through those extremely difficult days. I understand how you feel, and delays only add to your feeling of hopelessness. Try to take one day or one hour at a time. We are all pulling for you, please stay with us. LouT, LilyMir and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 26, 2023 Author Share Posted January 26, 2023 Thank you for all your kind messages and support, I did have some seizure activity yesterday but it passed fairly quickly, I'm back on the dexamethasone 8mg per day and start the radiotherapy treatment today for 5 days I think it's only 7 minutes per session of radiotherapy I'm not sure why it seems such a low amount of time, I know you are all going through the same thoughts as I am I just didn't want to let everyone down but I will keep you all updated I promise, Thanks again to everyone take care Justin x Izzy, Scruboak and Tom Galli 2 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 26, 2023 Share Posted January 26, 2023 Good luck Justin! 7 min radiation per session is plenty, it is X-rays after all, and whole brain means they need not calibrate locations carefully etc I guess. Hope this one fries the bugger! Stay hopeful. Justin1970, Tom Galli and Izzy 1 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 27, 2023 Author Share Posted January 27, 2023 Hi everyone I did promise i would keep you all posted it's 3.15am here in the UK and I can't sleep but nothing I'm not used to now lol, So I had the first treatment done yesterday and it was alright nothing to worry about to be honest unless your claustrophobic then I would be difficult, I wasn't long in the machine had to have a few scans before the treatment started but I would say all in all approximately 15 minutes, I have another session today at 4.30pm and 3 more next week then I guess the side effects will start, but I'm glad I went through with it even if don't have much faith in it working atleast I tried Hope your all well Take care Justin x catlady91, Izzy and Scruboak 3 Quote Link to comment Share on other sites More sharing options...
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