I'm revisiting this post for motivation. The last couple of months have been a challenge to say the least but the last couple of weeks, well, lets just say Ive had to dig deep. As per MyMiracle's WBRT journey, Im now at the 'cant get upstairs stage', muscle weakness and mobility are at rock bottom and I've had to rope in Macmillon Occupational therapist and physio for assistance. So helpful - now I have lots of equipment to help me and an exercise programme. On steroid reduction plan too so that should help.
So glad I popped back on here as I can see MyMiracles Nov, where recovery seems to be underway, equates to my February. This is sooo encouraging. Muscle weakness/mobility issues aside, over the last week I have started to feel generally better in myself and re-reading this has given me even more determination to get this recovery business well underway. Wont pressure myself but if I can at least get upstairs in the next week or maybe couple of weeks, I'll consider this a real win and by the end of the month be able to walk around the block , even better.
First scans to assess treatment success next Tuesday with results on 18th. Eek. I'll keep you posted.
Good news today too, got called to have my covid vaccine tomorrow. Yay.
Take care everyone.
Josie
*****************************
'll start by wishing everyone a Happy New Year. Lets hope in 2021 we can get back to some sort of pre covid normality.
I had the 10 WBRT sessions at the beginning of dec. I can understand why they cant blast everyone with the full 10 as the side effects are really kicking in now. That said, Im not sure how much is down to the treatment or how much is down to the steroids Im needing to take. Muscle weakness is an escalating issue, as Im struggling to walk and get up from sitting. Had a fall too. Memory loss is bad too. We all laugh and joke about it when we get to a certain age but blimey, this is next level. Not whinging though, generally doing well, all was expected and theres probably more to come but itll be worth it .
At the end if the sessions, all my hair fell out very quickly over 3 days. Literally just fell away. Dr told me it wont grow back as its directly on the head over a big area and it kills the hair follicles. However Ive read otherwise. Just have to wait and see what happens. I wasnt too traumatized by the hair loss but was a bit weirded out...I usually have long thick hair so it was....is..... a bit strange looking at bald me. So I decided to have a play about with make up, see what I could do and take a photo. It was a strange combination of feelings ranging from vulnerable and exposed but yet liberating and empowering. Sort of, 'have that Big C, you wont get the better of me so do one'. Bet you all think Im nuts lol. Anyway, its a trusted forum here so im daring to share so I'm liberating my inner fighter even more. Whatever helps, right.
Fingers crossed for my WBRT to be successful. I'll keep you posted.
Josie
PS... the steroids may have made my face swell up but on the upside, its shaved 10 years worth of wrinkles off. Always a silver lining 😁👌
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You are beautiful! Your face doesn’t look swollen to me, it looks glowing! You can really rock the look! Let’s hope that the treatment made your cancer feel as bad as you look good!
I look bad with my hair pulled tightly away from my face so I’m not looking forward to ant treatment that makes me bald!
Thanks Elaine. My face.....and the rest of me.....is a bit more swollen now. I'll keep blaming the steroids and not the mince pies haha. A big thing for me is not looking like the 'poorly person' and having people look at me with 'that look'. People mean well but I dont need it. I bet that makes sense to most of us on here, if not all. X
Makes sense to me. I I want to be treated like a normal person as long as possible. To me that translates into not talking about cancer except fora few friends, living my life with grace and no whining, and retreating when I can’t do those things. My retreats are short but needed to revive my spirit.
Thankyou so much, the photo kind of makes me feel strong. I think I need to issue a cheesey statement alert, 😁 x
As always Josie you are amazing and beautiful inside and out. Totally stunning picture.What an inspiration you are - you have tackled this treatment and it’s side effects with courage and dignity, always seeing the positives and never moaning.
Let’s hope this treatment has really done it’s job, and those side effects go soon.
Stay just as you are my beautiful, nutty friend and you will get through this.
Stop trying to make me cry my wonderful friend. You've been by my side every step of the way, literally even in hospital via facetime, jollying me along, keeping me sane and rational. I have loads of support around me but nothing compares to having a sister from our group walking by your side because you know they just know. And I couldnt have found a closer sister, even though we STILL havent met in person. Cant wait until big C mark 2 (covid) does one and we can get on with our plans. Much love to you xx
You have such a good support network around you with family and friends, which I am glad of, otherwise I would have moved in! You give me such strength and support even when you are unwell. Can’t wait until we can see each other with the 3rd bigC - CakeXx
Thanks for those lovely words Sandra. Thats it with the treatment, no pain no gain as they say. The side effects will go, just have to hang on in there, keep the faith and be gone you pesky cancer cells. 🤞. X
Morning Jo, thankyou for those lovely words. Fingers crossed for success. Im giving it my best shot thats for sure. All the very best for 2021, lets hope we all get successful treatments. X Josie x
You look beautiful. When I went through the hair loss I always walked around without any hair accessories except I had a little thin pink tongue that I wore at night. Stay strong and I truly hope you will be successful in your treatment
Thanks Shelby. I have a few cute little beanies I wear and in the house usually a scarf. I have got a wig too which is very similar to my own hair so Im all sorted. Ive every reason to believe the treatment will work. Im making sure Im kind to myself and not overdoing things or pushing myself. Ive strayed a bit....a lot....with the food but this morning have taken back control and will get back to the good stuff. Best wishes. Xx
I’m drawn towards your beautiful smile and not to your bald head ... you look amazing ! And wrinkle free too !! I hope that the treatment is a success and that you are soon free of the side effects . You’re doing great ! Wishing you all the best for 2021 ! Much love x 💞
Morning Josie,
It’s so nice to see your beautiful, smiling face. Thanks for the update on how you are feeling and getting along. I hope your treatment was a success and that the side effects soon subside. Please be careful of falling and take it easy.
Morning Sophie, thanks for your lovely words. Fingers crossed for the side effects to buzz off and more importantly the treatment outcome. Everyone is looking after me which in itself feels strange, not that I dont get support, Im just usually fiercely independent and the one who sorts everything. Much like you with your boys, we just do it dont we. Wishing you all the best for 2021 Sophie. Take care and stay safe. X Josie x
Thanks Teddie, it'll be another few weeks until I know if its successful. Meanwhile im going to sit back and let everyone look after me to give it the best possible chance. Best wishes. Josie x
Happy new year to you too josie. You look radiant in that pic, your smile reaches your eyes! Sorry to hear about side effects, I hope that starts to turn around for you soon.
One strong lady right there. Wishing you my very best x
Thanks for your lovely words cazlav. Hunkering down with the side effects and thinking it means the treatment is definitely doing its work. 🤞💪 x. Best wishes for 2021. Xx josie xx
Hi Josie. Hang in there Josie. This is my personal experience. I finished WBRT in September. By December my hair started to grow back not in patches but all over my head. I had muscle weakness too. In fact I lost muscle mass and a lot of weight. I was so tired and fatigued for most of 2 months. I only started to feel normal in November. I couldn’t climb stairs and walking tired me but in November I was able to walk for a kilometer albeit slowly and have worked up to 2.5 kilometers now. I didn’t experience memory loss though. I was prescribed Memantine before my WBRT and am still taking it now. It is an anti dementia medication. Ask your radiation oncologist about it. Josie, hang on in there. You will get better. I lost so much weight I thought I wouldn’t pull through. I lost appetite and couldn’t eat much. I survived mostly on drink supplements - Prosure, Ensure, Supportan. Thank God I am so much better now. I have gained 3 kilos and am now eating well. I can now climb stairs and do not feel as tired when I do chores. My last MRI showed the lesions were very much reduced. I am scheduled to have another MRI on Saturday and I will have SRS to zap the remaining bigger lesions. Have faith, put all your trust in God🙏 You look wonderful by the way. Have a Happy New Year🎉
Hi, MyMiracle, Sounds like you had a very tough 2-3 months but thankfully you're recovering now. I seem to remember you struggled a lot with GERDS. I've been ok for the first month but once you start to feel it, it seems to escalate very quickly, well mine has. I haven't had any tummy issues thus far but of course that could change. Thankyou so much for sharing your recovery story, it is really encouraging. If I start to feel my recovery wont happen, I'll take strength from your post. I mentioned the Memantine to the neuro oncologist and she advised me that they don't use it as a matter of course in UK but if someone has a severe reaction, then they would reconsider.
Big congratulations on the success of your treatment and the reduced lesions and now you'll be having the targeted SRS RT. That's amazing news, you must be so relieved.
Best wishes for 2021 and thankyou so much again for the recovery story, I can focus on that from now on.
You look fabulous ! I hope I can rock this look. I start new treatment on Wednesday ,side effect hair loss . I just started to look into wigs but hoping I have the courage to go all natural or cap/ scarf . We will see ...it is damn cold here in Canada in the winter so a head over is a must . I totally understand your dislike of the what I call “the pity “ look. Me too !
Wishing you continued strength to get through the side effects , even if you are not feeling great you look fabulous ! Take good care of You !
Thankyou so much. I visited Canada once - Calgary in the winter - no way no head covering with or without hair lol. I hope I've not mislead anyone, I won't go out without a head covering, I'd feel I'd be drawing too much attention to it. The photo was really only a bit of fun for me and I decided to share it with you lovely ladies on here and hope it gave someone else a bit of confidence to feel empowered, I'm sure everyone can rock the look in their own unique way, just don't be afraid and have a bit of fun with it if you can. I know it's not that easy though, I didn't reveal myself in person to my husband, I sent the photo by WhatsApp to him to give us both a bit of time to digest it, I felt weird and I knew it would be a little scary for him (boiling down to that ill looking sort of thing again). I needn't have worried at all, we were both fine. Just as an aside, I was told by my oncologist that the hair loss would be permanent because it was directly on my head and the RT would kill the hair follicles. However further up the thread on here, MyMiracle had the same treatment and her hair started growing back so I'm just going to sit back and wait to see what happens . I did buy a wig which I dropped on so lucky with in a sale because it's very similar to my natural hair and a really good one but I was all set to go back and get a "best" one, going to hang fire now and just use the one I have - only wore it twice though, prefer the scarves and cute little beanies I have. I use the ones that just look like ordinary little hats so you cant tell I'm a baldy underneath :). I wish you all the very best of luck with your upcoming treatment. Here's to a good 2021 for us all. xJosiex
I finished WBRT on December 10...Good to see your story of coming through this...I’m finally starting to get my energy back... supposed to get my new glasses this week... And hopefully some normalacy with that....
Im so glad you're getting your energy back, that's great news. Did your vision change with the treatment, mine has I think. It wasn't great anyway but I'm blind as a bat now . I get lots of dizziness so it could just be to do with that. I'll give it time and when I feel well enough, and safe enough from covid if that ever happens, I'll do the same and visit the opticians. It's so reassuring to hear from people like you who have gone through the same and are coming out of the other side successfully. Thankyou so much for sharing, it's a great comfort to me. It will also help when I'm feeling rock bottom with the side effect because I don't think I'm there yet, it'll help to know you and MyMiracle fought your way through it and inspire me to do the same. Here's to a good 2021 for all of us. Very best wishes for your continued recovery. Let's show Mr C .his marching orders together :). Take care and stay safe. x Josie x
I’ve always had bad vision. However with the tumor on my occipital lobe. I have double vision....the decadron at the beginning corrected it but now it’s back. 😱 so now they ordered me new lens but said it would take 1-2 weeks for them to come in...like seriously people I can only see 3 foot without shutting one eye to see...I need to at least be able to drive and go to the store...😀...2021! It can only get better! 😀🎉😀
My daughter said to me well mum, if anyone has the right shaped head for it, you do. Hahaha, made me chuckle, who'd have known eh lol. Thanks Gwennie. Best wishes for 2021. Take care and stay safe. x Josie x
Josie! May I just say that you look gorgeous and glowing! God bless you and help you heal quickly as you deal with after effects.
In the meantime, just know that lethargy and weakness is typical following radiation. You have such a positive outlook that I’m sure you will feel stronger in a matter of weeks!! You are an inspiration!
Josie, you truly look absolutely amazing!! Thank you for sharing your beautiful photo. Im sure your post will help, and be an inspiration to, others if/when they are facing similar treatment.I love that you’ve found the silver lining - the ironing out of the wrinkles - you sound like an awesome women.
I am wishing you a very happy and healthier New Year. Take care. Vicki xx
I think a positive attitude makes such a difference when we're facinh life's trials and tribulations. Þhanks Vikki, really appreciate the support. Best wishes. Josie x
Wow Josie not only are you beautiful but your spirit and attitude are so encouraging!! I had 14 session of WBRT (there were too many lesions to count) in oct 2019 my hair did not start growing back for almost 8 months there is a bald patch down the center of my head but I’m growing my hair back with a comb over 😃. It is curly and grey now too not sure about coloring it yet. I also took mementine and luckily the hair loss was my only side effect . I also take tukysa, xeloda and herceptin and brain scan last week showed zero lesions in brain !! So although it’s not funicular guess it’s part of our journey. My husband and adult kids have yet to see my head in over a year but you have given me the courage to show them . Praying for your health and great scans!! ❤️❤️❤️❤️🙏🏻
Oh wow, massive congratulations on the zero lesions. Thats incredible. So pleased for you. Im so glad my post has given you the courage to show your family. Ive heard about hair growing back in a different texture and colour. Im sure you rock a good comb over until the gap fills in. Brill that its coming back 👌. Hetes to success for us all in 2021. Best wishes and stay safe. X Josie x
Wow! I don't know what you looked like before, but, except for the hair loss, no one would know what you just came through. Being able to be vulnerable "to the slings and arrows of outrageous fortune", and still smile so glowingly is a sign of real strength. Good on you!
You are absolutely glowing!!! I would never guess you have any side effects!! I hope the treatment kicked cancers butt. Take care and keep up the wonderful attitude!!
Josie, you look stunning! Your radiant face and genuine happy smile is amazing! I’m sorry for the radiation side effects you’re experiencing, but hope that the result will be so worth it.
I had SRS in cerebellum in October and will have an MRI in 2 weeks. Finger crossed.
You’re such an inspiration to me! Please continue sharing your story. Hope that 2022 will be kind to us all.
Thanks so much. Crossing fingers and toes for success. Pleased to hear you had the STS. Praying for good outcome for you. 🤞🤞🤞. Keep us posted. Best wishes. Josie xx
you are beautyFULL! i like to emPOWER myself with the following quote from a Japanese Buddhist philosopher, "The human spirit is the strongest force there is. As long as our spirit remains unbroken, there is no defeat." may you be at ease.
I’m sorry you are having such crappy side effects. Radiation wipes out all your energy, or it did for me. Your picture is wonderful. You look gorgeous and you are glowing. ❤️
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