Jenny 
Hi everyone!
Greetings from another blog about my (now very imminent) HSCT treatment. If you have been following the HSCT Chronicles, you will know that, before Christmas, I had my successful harvest (removal of some of my stem cells) so that they could be frozen, ready for transplanting this month. Well, the date is now almost upon me and the next part of my treatment starts on the 10th of January.
This time, I will be having stages 4-6 as detailed by The MS Trust:
Stage 4
Stage four of the process is another round of chemotherapy, known as conditioning chemotherapy, this gets your body ready for the return of your stem cells. It may involve either completely wiping out (myeloablative or high intensity chemotherapy) or partially eliminating (non-myeloablative or low intensity chemotherapy) your bone marrow and immune system, hopefully destroying the cells that are involved in MS disease activity. More recent procedures have tended to use the less aggressive lower intensity chemotherapy method. This stage usually takes several days and you may need to take drugs to control any nausea and vomiting which are common side effects of the chemotherapy. You may also be given steroids to dampen down any immune reactions.
Stage 5
The fifth stage is transplantation, also known as stem cell return, where your stored stem cells are thawed and returned to your blood by infusion (through a drip). This is often a couple of days after the conditioning chemotherapy and will only be done once all the chemotherapy drugs have cleared from your system. It takes a couple of hours and is similar to having a blood transfusion. The stem cells make their way to your bone marrow (engraftment) and should start making new blood and immune cells within 10 to 30 days. During that 10 to 30 day period, you have, in effect, no immune system which explains some of the risks and side effects set out below.
Final stage
The sixth and final stage is recovery. AHSCT is a complex, aggressive procedure and recovery can take a considerable length of time. You should expect to be off work for quite a while as typically you need three to six months to recuperate from the procedure. However, some people can take more than a year to recover.
How I’m Feeling
To say that I am nervous is a bit of an understatement. This time around, I will be having a Hickman Line inserted (a thin tube of plastic inserted into my chest so they can administer the chemotherapy and other medicines without the use of canulas in my arms) and five lots of chemo. I think that I am most worried about how my body is going to cope with the side effects – although apparently, some people become constipated, many people actually get diarrhoea as a result of all the meds. I am also worried about the risk of getting infections and a subsequent temperature, as my MS body simply does not function (i.e. I can’t even sit up, let alone walk) when I have one. The nurse in charge of my care told me that antibiotics will be given to me as standard, before any fever presents, to try and reduce the chances of infections happening in the first place. I think the fact that she said “just be prepared for feeling really awful for a few days” is what has made me start to be so nervous!
The reality of being away from my family has also hit me. Last night I was saying goodnight to my not-so-little-anymore 11-year-old son and suddenly I realised that I have never been away from him for longer than a few days. As it is anticipated that I will be in the hospital for around four weeks, I have visions of coming home and realising that my kids have grown several inches in my absence! I plan on continuing with Face Time conversations whilst I am away since they are not allowed on the ward to come and see me (due to infection risk) and I’ll hear all about what they are up to from my husband, who luckily can visit me whilst I’m in isolation.
What Preparations Have I Put Into Place?
Medically, I had to have an echocardiogram (ultrasound to check my heart) just before Christmas. I am also due to have a lung function test and more blood samples taken before I start my treatment. In addition, I have been given some anti-microbial nasal gel and body/hair wash to use every day for the next 5 days so that my body and skin is the cleanest it can be before I have my Hickman line inserted. Let’s just say, posh and sweet-smelling it is not!
In terms of self-care, I have spent this ‘in-between’ stage eating well, doing some yoga, having a break from alcohol and boosting my body with loads of water and vitamins. I have been feeling fine since I came out of the hospital in November (albeit quite tired) but, even so, I have been focusing on chilling out resting – well, as much as I could over the Christmas holidays with two kids at home!
I have chatted to the kids’ school to give them a ‘heads up’ about the fact that I won’t be at home and also started to freeze extra portions of food so that we always have a meal in the freezer. In addition, I have bought myself comfy loungewear and extra socks, books, and snacks to take into the hospital.
So, I feel as ready as I can be I guess! I have to say, I am keen to get things rolling… I still need to pack my bag but am planning on doing that tonight. I am lucky to have friends and family who are going to visit, so I know that I will be able to get some fresh jammies and books if I need them!
My HSCT Essentials:
And, Finally, an Update on the Hair Situation…
In my last HSCT Chronicles, I mentioned that my hair started falling out a couple of weeks after the chemotherapy treatment that I had in my first stage of the treatment. Almost two months on, I can’t recognise myself… I still get that ‘oh shit!’ moment whenever I walk past a mirror, lol. Not all of my hair has fallen out, but a good proportion has… and, typically, it was the 70% of my hair that was not yet grey (I am assuming those wiry little so and so’s are hanging on for dear life!) So right now, I have about half an inch of predominantly grey hair growth which I tend to cover with a hat or wig. I have to say, I am not looking forward to the further hair loss that I am sure to encounter over the next few weeks and I can’t wait to have chin/should length hair again – I am aware that this will take some time though!
Next Steps
I plan on updating you when I am in the hospital – luckily I can take my laptop and phone with me – and I will let you know how everything goes. As far as I have been made aware, the next stage is five days of chemotherapy, immunosuppressants, antibiotics and a whole host of other medications before then having my stem cells defrosted and then put back into me for them to then go on and build a whole new – hopefully healthy – immune system that will not attack itself as mine currently does. Sounds simple, doesn’t it? I know it is a long slog but I am onto the final steps now… bring it on!
Speak to you soon.
‘Til next time,
If you would like to read more about my HSCT treatment, previous blog posts are:
Hi Jen,
You will be in my thoughts all the time. Try to remember when you are at your lowest that it will not be forever you will come out of the other side and be all the stronger.
I have recently been diagnosed with polycythemia which is a blood cancer which I’m told is not curable but it’s manageable with drugs. I will probably have to have a bone marrow sample taken shortly and although I’m dreading it, I will think of you and how brave and inspiring you are to us all.
Take care Jen and as soon as your able let us know how you are doing.
🤗 and 😘
Elaine xxx
Hi Elaine, thank you so much for your comment and well wishes, I am so sorry to hear about your polycythemia 🙁 I hope that everything goes ok, I am always here if you need to have a private chat about the tests etc (I’m not sure if they are the same though). Will update soon xxx
Concentrate on getting yourself through this final stage Jen, I know you have the strength to do it. You have lots of love being sent your way. 💕 xx
I will be thinking about you! Glad you can have your gadgets with you. Truly hoping all goes well. Hugs! Joan
Thoughts and prayers. Best of luck
Thanks so much Declan 🙂
Wishing you all the very best, Jen. You are so brave and a massive inspiration. Thinking about you and sending positive, healing thoughts. Much love, Emma xxx (of Not Just Tired as WordPress doesn’t recognise me today!)
You have done everything you can to be as prepared as possible, including taking care of everyone else while you’re away. Now is the time to focus on you. You can do this, you’ll find ways to manage. I can only imagine how scary and difficult all of this is, not just the treatment but just being away from home, away from your family and kids, but there’s Facetime and there’s your husband to visit you and there’s the strength you have saved away for a rainy day like now. We’ll all be thinking of you. Keep hold of that sense of humour (and I’m sure those grey hairs are just too fond of you to say goodbye just yet) 😉 Sending lots of love and hugs your way xxxxx