Jenny 
I just thought that I would write a quick update on how things are going with me following the start of my HSCT Treatment, which started at the end of October. I have now had stages 1-3 as detailed by the MS Trust below:
Stage 1
The first stage is known as mobilisation, where a combination of drugs are given to encourage your blood cells to move from your bone marrow and into your blood stream so they can be collected. Mobilisation is carried out by giving an infusion (through a drip) of a chemotherapy drug (cyclophosphamide) and injections of a synthetic form of a natural growth factor called G-CSF (granulocyte-colony stimulating factor). Your MS symptoms can get temporarily worse during this phase.
Stage 2
This involves collecting (or harvesting) your stem cells, it typically happens about 10 days after mobilisation once blood tests have shown that there are enough stem cells present in your bloodstream and takes between half a day and one day. You are connected to a machine which collects your blood through a needle in your arm, separates out the stem cells and then returns all the other components of the blood to your body.
Stage 3
The third stage involves freezing (or cryopreserving) your harvested stem cells, ready for when they are returned to your body at a later stage
Stage 4 and beyond – when I have more chemo, my stem cells are put back into me and grow a ‘new’ immune system – looks set to start after Christmas now.
Down Days
I have to admit that I have been finding the past couple of weeks really, really hard. Initially, when first I came out of the hospital, I felt really positive, glad that I was taking the step to take control of my MS by hopefully putting a stop to the ongoing inflammation. I felt fine physically when I came out, except for being tired, and was so happy to be at home again with all my comforts. Now though… I feel like I am in ‘limbo land’.
Although I am grateful that I am going to be able to enjoy Christmas with my family, I also just want to get it all over with. Without any doubt, I know that a big part of this is due to my hair loss, which started only a week or so ago. I am now very patchy (have a look at my Instagram if you want to have a nosy!) and am wearing a variety of headwraps and scarves, trying to get the courage up for wearing my wigs, which look, well, obviously not like my hair. Although they are nice wigs – have 2 to choose between. I think that I feel frustrated because when I spoke to the Neurology registrar in hospital, he was very flippant about the fact that I will be having a couple of hairless months before I actually go in for the second part. He was a young doctor, a similar age to me, and when I expressed my concern about the time I would have to wait before the next part of treatment and the fact that I will have these side effects, he said ‘it is hair, there are some good wigs around’. It isn’t as simple as that I am afraid, mentally it is a lot to take on.
Taking Stock
So on one hand, I am aware that I look shit but, on the other, I feel bad because I know that so many other people every day have to go through hair loss due to chemo and other drugs for other illnesses, or because their bodies are fighting against them, in the case of alopecia. Those people do not choose to put themselves through this but I have, to hopefully help my MS. So I feel like I shouldn’t complain, I am lucky to have the chance to do this and am grateful that I can try something to hopefully dampen down my MS.
As you can see, my mind has been in turmoil for the past couple of weeks! I have been trying to take my own advice toward thinking more positively by keeping going with my healthy eating, yoga and the little things that make me happy – reading, crafts (I have taught myself some macrame skills!) and crochet. The crochet and macrame are actually gifts for others, which makes me feel good. I have also spent a lot of time thinking about the upcoming holidays, how we can do it frugally and make it more meaningful, rather than just buying presents that will be abandoned within a couple of months.
I have also been so, so lucky to get loads of support from both my ‘real’ friends and family and also my ‘online’ chronic illness family. I appreciate it more than I can say.
Anyway, I thought that I would end today by sharing some positive quotes that I am trying to focus on. I am now going to do a bit of yoga and I am meeting a friend for coffee later, so hopefully those things will cheer me up a bit too.
I really hope that everyone has a fab weekend 🙂
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
The HSCT Chronicles: It Starts!
The HSCT Chronicles: Days 1 – 5
Thanks for the update Jen. It’s easy for those not going through it to try and give advice, so I’m not going to. I can’t imagine what you are going through, mentally and physically, but I have seen loved ones go through chemo for cancer, and I know how difficilt it is. This treatment is to halt MS progression, your MS, so no guilt should be attached to this. I love the positive quotes!. I hope today is kind to you, and wishing you a lovely weekend. If it helps, when someone asks me how I am, I always reply ‘I’m better than I was yesterday’. One step at a time, one day at a time. Lots of love.xx
Be easy on yourself Jen it sounds like a grueling treatment. Take it one day at a time. xx
Thank you so much xx
You are brave, strong and human; an outstanding combination
Aww, thank you so much xxx
I would like to see whether that neurology registrar could go through one ounce of what you have with your grace, hair loss included. I bet he’d be a crying mess saying how nobody understands how he feels or how hair is more than ‘just’ hair. I’m sorry you had to have such a flippant response, but at the same time I’m not surprised. I love the quotes you’ve shared, the Radmacher one (about courage not always being a roar) is one I posted yonks ago and I love it, I think it’s so apt for many of the ‘chronic illness community’. No matter how mixed up or stressed out or exhausted or whatever you feel, please know that we’re thinking of you and we think you’re a beautiful, amazing badass, whether you feel like it or not (and I’m always right, so you can’t argue the point).
Sending hugs Jen, I hope the weekend goes okay for you… xx
Thanks for your comment Caz, I apologise because I always think that I have replied and then haven’t! I must think of the reply in my head. I love that quote too <3 It helps me to look at some to try and think more positively. All these fab comments from people like you make me feel so much better - I even shaved all the rest of my hair off after writing this post as everyone's comments on here and Instagram help so much! I just bit the bullet and did it, though I have to admit that I still get the shock of my life when I walk past a mirror without my scarf on, haha 🙂 xxx
Jen I can understand your mental mindset and it is totally justifiable so don’t compare that you did this willingly. You didn’t willingly give yourself MS to be put in this place and your attitude to it is beyond AMAZING!!! You look beautiful. Keep your head up and smile. Wishing you the best.
Thank you Jamie xx
Great quotes. There’s nothing better than positive quotes.I am much too tired now to read all of your post but I hope things are going well with the treatment and I wish you all the best!
I am so glad you get to spend Christmas with your family.
HSCT treatment sounds full on though and I can understand why your brain would be playing turmoil and how hard it must be for you to be in isolation stuck in the hospital for so long. Just exhausting! A day in ED is bad enough for me with all those monitors beeping. You are so brave and strong to go through all of this.
Thank you lovely, I sometimes don’t feel brave and strong at all, just trying to really concentrate on the positive (hopefully) long term impact it will have! xx
Well much braver and stronger than me. For me being in hospital is enough and living with a chronic illness the rest of your life. Anyone who manages to get through chemotherapy is strong.
First I want to thank you Jen for keeping us all updated on this process. I can’t even begin to imagine how hard this has been on you mentally and physically, but you still sound so incredibly strong and optimistic about everything. Not to make myself sound like a vain person, but I think the hardest thing for me would losing my hair. At the same time, I know people go through this everyday and they do not think about it. I might be wrong, but I am not even sure this treatment is available in the states, but that is just because they are ALWAYS the last to do something good for the people. I wish you nothing but the best with everything Jen. I also really want you to know that I admire your strength and you are an inspiration to all of us sweetie! Sending you LOTS of love my dear!
Thank you Alyssa! Yes, I know exactly what you mean about losing your hair, I wouldn’t consider myself vain either but it is a MASSIVE change and even a shock, even though I knew it was coming. My strength has certainly been tested but I have to try and keep thinking about the end result, which for me would hopefully be reduced progression. Fingers crossed! I do think that it has been around in the States, but it is considered experimental there, whereas here it has already been approved for certain people. I believe that it is very, very expensive, so I have heard about people going to Mexico/Russia to have the treatment as it is so much cheaper there. xxxx
You are so welcome Jenny! I can imagine it being a huge change and a little difficult to adjust to. I do hope after everything you are going through, this will reduce your progression. I still say you are an amazing person with strength I can’t even comprehend! I think you are right that it is here in the states, but very expensive and still and experimental thing. We will see what happens in the near future. Until then, I wish you all the luck and positive vibes in the world! xxx
Jen you are beautiful inside and out, I admire you so much for taking this opportunity to try to stop the progression of your illness . Until someone actually goes through what you’re actually going through we can’t begin to understand what symptoms and emotions you are feeling.
The fact that you are blogging about it is awe inspiring because hopefully it may give others hope to try the same thing.
Keep smiling Jen, it’s not forever even if it feels like it is at the moment 🙄
Sending you love and strength
Elaine xx
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