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Justin1970

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Posts posted by Justin1970

    Bad week

    in MEMBER UPDATES

    Posted

    Hi lily 

    Sorry to hear your having a tough week and that your son picked up a germ I'm glad your feeling better in yourself but sorry your sad this disease really is a nightmare and the pandemic really hasn't helped make it easier, me and my 18 year old even did all the shopping for my elderly parents and my wife's dad through the lock down and I was more vulnerable than any of them I just didn't know it at that time, try not to worry and get upset there is better times ahead,

    Take care Justin x 

    My updates (22 Years old, NSCLC)

    in MEMBER UPDATES

    Posted

    Hi Ale 

    I know how difficult your finding everything and the depression and low points certainly out weigh the highs,I also spent a lot of time in the past wondering what if things were different and recently I went through a really low stage because this disease never seems to end, I'm sure I will feel like it again and dreading it but at the moment I feel quite good and have realised I need to make the best out of the good news I have been given, I'm struggling with fatigue aswell at the moment and not sleeping hardly at all and it's really hard to motivate, thankfully my right side is getting better everyday now so I can do much more,

    the depression will drag you down if you let it so its really important that you stay strong and beat it, easier said than done for sure but we are all here with you fighting so never feel your on your own because your not and if you ever need to talk or vent your anger and emotions just do it because at one point or another we have all done it, 

    All the best Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    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 

     

    Mri scan

    in MEMBER UPDATES

    Posted

    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 

    Mri scan

    in MEMBER UPDATES

    Posted

    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 

    6 month scan results

    in MEMBER UPDATES

    Posted

    Hi 

    I really hope you get some good news from the pet scan,I know how worrying it is but it's great news that the other lesions are no longer viable and hopefully these others can be sorted out soon, I recently had a tumor removed and am hoping no more come up so I have an idea of how you and your wife feel and you are right all we can do is take one day at a time,

    All the best Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi

    The next step is meeting with the consultant tomorrow to find out about the tumor and what is next hopefully no further treatment will be required but I'm not convinced that'll be the case, they will hopefully do an MRI SCAN sooner than last time to find out if anything is growing I will probably find out myself as I'm gradually coming off the dexamethasone steroids and last time I did that I had seizure activity, the steroids have made my face swell and stomach which i absolutely hate as i feel very puffy around my eyes im hoping that will get better when i stop them i do feel a lot better and start physio Friday so im hoping that everything will soon be back to some sort of normal,

    It would be nice to look forward to doing some everyday things and some stuff for Christmas with all the family I'm getting bored just lying about doing nothing lol,

    I hope your mum and you are well 

    Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Just a quick update and a massive thank you for all your messages,

    I can now move my foot and walk again with the help of a stick and I can use my arm and hand a lot better today so everyday it seems to be getting better, I am really tired and don't sleep very well,I was told I would be fatigued for a while so anything I do is very tiring but I can deal with that as I have no pain from the operation apart from a headache, I even managed to have a look around a Christmas Market with my children and grandchildren yesterday which is something I thought I would never do,

    I can't believe I had brain surgery a week and a half a go and was so worried about it going wrong and being left with mobility problems to where I am today it's just such a nice feeling to actually have some good news through this journey even if it doesn't last long I think you need a win now and then,

    I hope your all well take care Justin x 

    Switching to chemotherapy from immunotherapy

    in MEMBER UPDATES

    Posted

    Hi Rosie 

    I'm sorry to hear your struggling with the side effects of treatment I did as well but I took everything they offered me to make it more bearable and it did get better,I ended up with having blood because of anemia and the chemotherapy tablets were worse than the infusion but I took all the pain relief they offered and it did help I stopped them when I no longer needed it especially the morphine I hated that but needed it for my esophagus and swallowing, 

    Stay strong and positive and you will get through this my thoughts and prayers are with you hopefully you will start to feel better soon, goodluck with everything Take care Justin x 

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    Kamoto

    I felt like that last xmas it got really hard to swallow anything towards the end of treatment I didn't have cancer in my esophagus but it was in my lymph nodes so ended up with severe esophagitis and terrible pain whilst swallowing I took a small amount of morphine before I ate anything and it really helped, keep going we all get like this I know I have a few times even over the last few weeks, but I did manage Christmas Dinner last year and im so glad I persevered because I managed to eat with my family even though it hurt to swallow the morphine numbed it enough to do it and we had a great time, 

    So please don't give up because you will have plenty more good thanksgivings and Christmas's this is just a bump in the road ,

    All the best Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Thank you for your kind messages it means such a lot

    I had the staples taken out today which I was dreading but it was nothing like I expected it didn't really hurt  and tomorrow I can have a hair wash which will be nice after a week of sweating lol,I can use my right hand a lot better now and my leg and foot are much better so I managed to take bonnie out for a walk today I have to use a walking stick for support but who cares atleast I'm mobile again lol,i feel so much better in myself now I just hope it's good news from now and can get on with living, 

    I hope everyone is well take care Justin x 

     

    Hi everyone I’m Christine

    in INTRODUCE YOURSELF!

    Posted

    Hi Christinee 

    Nice to meet you welcome and of course you are allowed here, sorry you have to be here though, but it really is a great community and very supportive it certainly helped me through some rough times, please don't feel bad about surviving this horrible disease that's everyones hope on this forum there are so many survival stories it's fantastic and makes all the difference to our moral,

    Goodluck with your results and hopefully no further treatment will be needed and you can get on with living your life as you should be,

    All the best Take care Justin x

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