Jenny Hi everyone,
Just a quick update from me in regards to my HSCT Treatment for my Multiple Sclerosis.
IT’S STARTING!!!
After what seems like forever, but is really only a few months, the dates and times of my treatment have come through. So far, I have been to the hospital where I will be having the treatment to give consent, have my bloods taken and to be weighed/measured prior to starting.
Tomorrow (Friday the 26th October), I will be having more blood tests and then I start my chemotherapy on Monday. Just to remind everyone, HSCT is a 6 part treatment which entails chemotherapy and removal/replacement of your stem cells in order to replace or ‘reboot’ your immune system. The MS Trust has made a very informative video on the procedure, which you can see below:
Over the next couple of weeks, I will be undergoing stages 1-3 of the infographic below; chemotherapy, growth hormone injections and harvest/freezing of my stem cells. As I live a couple of hours away from the hospital that will be treating me, I will be staying overnight most of the time so that they can keep an eye on me and monitor my health.
It looks as though stages 4-6 will happen after Christmas – a good thing, I guess, as hopefully I will still be able to enjoy the holidays with my family and not feel too rough!
Hair Today, Gone Tomorrow
Now that my dates are through, it is starting to feel very real! I have been shopping for hospital bits and bobs (new jammies, a book holder, cosy socks and snacks), my friends bought me a fab box of Neal’s Yard goodies to treat myself with whilst there and I have had the chop to help to prepare myself and my family for the likely hair loss that I will experience as a result of the chemo. Let’s just say that I definitely prefer myself with longer hair! But friends who have had chemo before have said that it is easier to contend with hair loss if it is shorter and, if it doesn’t fall out, at least it will grow back!
Apart from the hospital tomorrow and then again on Monday, I will mainly be resting up at home over these next few days. My husband is working on Saturday, so I think that I will take the kids for a cinema trip and do some Halloween cooking with them since there’s a chance I won’t be here for the night itself.
I have also started a YouTube channel (get me!) which I plan on updating as my treatment progresses. I figure that I might not always feel like blogging so talking is the next best thing! Here is my first and only video so far for anyone who is interested (I didn’t hold my phone the right way!). I chat about myself and my MS:
I hope that everyone has a fab few days and I will be back soon to let you know how I am getting on 🙂
If you would like to read more about my HSCT treatment, previous blog posts are:
The HSCT Chronicles: Telling the Kids
The HSCT Chronicles: To Wig or Not to Wig
Oh Jen, I smiled all through this, as I have nothing but pure admiration and love for you!. I adore you with short hair (yes, I have a Pixie cut), but it really does suit you, and it will make any hair loss easier to deal with. I love your video also! you go girl!. I can only imagine what your nerves are like at the moment, but you have an awesome family and friends who love and support you, together with your online fam. Been thinking of you all week, and will be on Monday also. Keep smiling lovely!.xx
Thanks as ever Toni 🙂 I am glad you like the cut – I don’t think that my husband or kids are used to it yet! They keep saying that I look like my mum, which I don’t think is a bad thing personally! I am so lucky to have all my family and friends behind me, and my online MS fam is definitely part of that! xxx
😊xx
i like your new hair cut. Good luck for the HSCT!
Thanks Tracey 🙂
Jenny, this is great! I wish you all the best and will be following your progress with great interest. Ed
Thanks Ed 🙂
Wow. Good luck on the road ahead. No more limbo land. Enjoy your weekend with the children. I’ll be following your journey x
Thanks Karen 🙂 I know the aim is not to get my mobility better (I wish!) but to try and halt the current damage which is still happening. Fingers crossed x
In my thoughts and prayers over the coming weeks and months. Hope all goes well
Thanks Declan 🙂
Can I ask are you on any other DMD’s ? Or do you follow OMS?
Hi Tracey, I do follow OMS, but unfortunately I think that I started a bit too late. I have had MS for 25 years+ and was just transitioning into SPMS when I started OMS. I have SPMS but am still having new inflammation despite OMS and having tried Tecfidera!
Hugs. Thanks for doing this. Hope HSCT goes well x
Thanks so much Joan 🙂 x
Wishing you all the best with your treatment protocol Jenny. BTW I love your short haircut – it’s adorable! Your positive attitude is so inspiring, and I know it’s going to benefit you as you go through your HSCT. Blessings to you!
Thank you Terri 🙂 x
Jenn, good luck with the treatment! Im wishing you all the best for the upcoming treatment! Xo
Thanks so much Carol Anne! xx
Xxxx 💟😗😘🌻
Thinking of you, Jen and love the hair cut!! i have followed your Youtube channel so looking forward to keeping up with your progress – sending positive vibes and gentle hugs, C x
Thanks so much Claire! Lovely to have a new follower on YouTube, still trying to get my head around it, haha. Talking out loud doesn’t come as easily to me as writing does sometimes 🙂 xx
I don’t think I would be very good at it – although my family might disagree as I can talk to anyone about anything normally. Looking forward to following you x
Your hair looks amazing! sending positive energy your way!
Thank you! xx
I like your new hair cut. It looks nice. Yes it is easier to cut your hair than to have to watch it all fall out and have to part with it. Good luck with the HSCT treatment! It seems very full on that they’re actually going to wipe out your whole immune system so it will be like you have Cancer and then put back in your stem cells. All the best. The Halloween treats look nice. I like the healthy mandarin ones. I will be thinking of you. PS: I have a new website now all-hearts.org which you can follow when you are in hospital, but the follow buttons aren’t working at the moment so you haev to either subscribe to recieve emails or manually add it to your followed site.. NO information on treatment on there.
Thank you! Yes, it is a pretty invasive treatment, but if it means that I have an immune system without MS, I am willing to try. I have had a read of your new blog – well done! Looking forward to reading more 🙂
You are so lucky. Yes the treatment is intense. Sounds awful when you’re going through it. But if it completely gets rid of your MS you’ll be a normal woman again. I wish there was some sort of treatment available for my conditions that at least improved my quality of life.
Unfortunately I won’t be a normal woman again as I have lots of long term damage that won’t get better from the treatment (problems with mobility etc). Hopefully it will stop any new damage from happening in the future.
But if will stop the MS from progressing, right?
Good luck!
I’ll still have progression from the damage already there, but hopefully it will stop any progression from new damage. Fingers crossed! 🙂
All the best with your treatment. I have been thinking of you.
Thinking about you Jen and sending all my love. I imagine you’re feeling a whole host of emotions right now. I really do wish you all the very best for Monday and your journey ahead with the treatment. I bet it was hard cutting your hair, but it looks fab. 40 and fabulous hey! ☺️ Take good care of yourself xxx
Thanks Emma 🙂 . It was hard cutting my hair, but I have to say it is a lot easier when getting ready – I just have to blast it with a dryer for 1 minute then go (If I leave it it would be a frizzy mess). I also worked out that it DEFINITELY looks better when I have a bit of make up on – which I guess defeats the purpose of an easy hair cut. I use up the extra spoons sorting my face! xx
Just wanted to let you know I have a new website up and running if you want to continue to follow me and keep up to date with my posts. My Facebook page is Allheart Australia which you’ll recognise the symbol and my Twitter page is AllheART
@ArtAllhe
There are some new blog posts on there you might all want to read and some more to come if you follow me.
https://all-hearts.org/2018/10/26/the-allheart-story/
https://all-hearts.org/2018/10/26/five-fast-facts-about-dysautonomia/
https://all-hearts.org/2018/10/25/how-you-can-support-people-living-with-dysautonomia-and-help-raise-awareness/
https://all-hearts.org/2018/10/17/welcome/
Also wanted to let you know that I’ve updated three of my other blog posts and added new things, new suggestions of colouring in books etc.
coolncreative.wordpress.com/2018/08/05/art-and-recreation/
coolncreative.wordpress.com/2018/10/19/october-is-lupus-awareness-month/
https://coolncreative.wordpress.com/2018/10/16/luis-and-the-aliens/
The follow button isn’t quite working on my new page so you will have to add your email to subscribe to updates and manually copy paste my website address into your followed sites.
Looks great 🙂 I wish you all the best of luck with it xx
Thank you. Just about to post a new blog post now. Also haev FB and Twitter page you can follow me on.
I’m glad it’s rolled around so there’s less of the anxious time of waiting, and it sounds like you’ve been very busy with the preparations. Shopping always gets a thumbs up, especially when it involves jammies and snacks! I understand preferring yourself with longer hair (I feel the same) but you look absolutely stunning, so beautiful with the pixie cut!! I hope you can have a wonderful day with the kids tomorrow and enjoy the cinema if you go. The YouTube channel is a great idea, will subscribe to that one now. Wishing you a lovely, but restful (!) weekend and all the very, very best for the start on Monday Jen 🙂
Xxxxx
Thanks as ever for your comment Caz 🙂 . We did end up going to the cinema, it was enjoyable as it has been such a miserable day here weather wise, it was nice to just sit in a warm cinema. Thanks also for your comment on my hair cut – I am slowly getting used to it and have to admit that it is much easier to take care of than my long hair! xx
Love the hair!!! Wishing you all the best. Can’t wait to read your blogs on the treatment. Best thoughts for you. 💛
Thanks so much Jamie! X
Wishing you the best Jen
Thank you 🙂 I’ll let everyone know how it goes x
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