Jenny Hi Everyone!
Just a quickie from me today as I am still feeling the effects of my recent time in the hospital and, more specifically, the effects from the lack of sleep I had there! I was woken every three hours, day and night for observations, as were the ladies that I was in the ward with so that impacted on my ability to rest.
I will attach my most recent YouTube video which explains it in more detail, but basically, I spent from Saturday 3rd November to Thursday 8th November as an inpatient so that I could have the growth factor injections that I needed in order to have a successful ‘harvest’. This is where they remove excess stem cells from my blood in order to then freeze them, ready to reinsert into my body during a later part of the HSCT treatment.
If I lived closer to the hospital, I would have been shown how to give myself the injections, but the fact that I live 2 hours away meant they wanted me to stay in hospital in case any problems were to arise. The injections themselves were fine – they were in my stomach, which led to a bit of tenderness, but nothing that I couldn’t handle. On the third night, I was woken with excruciating back pain at 2 am. I had been warned this was a possible side effect of the injections and a good sign that they were doing the job to help produce a lot of stem cells. After a bit of a wait for paracetamol (yet again, it hadn’t been put on my drugs list pre-emptively), I finally received some and that let me sleep again until 6 am, when I was woken for observations.
All this pain was worth it though when I had a successful harvest of my stem cells last Wednesday. The harvest itself was painless, with the exception of the canulas being placed in my arms, one of which was veeeerrrryyy big. I did have some tingling in my lips and face which I was told was down to the harvest stripping calcium, so I was given chewy calcium tablets to compensate, which seemed to help. The harvest lasted 4 hours, after which I went back to the bed on the ward to find out if it had been successful. At 7:30 pm I found out it was and wouldn’t have to have more injections or sit through another 4 hours of harvesting! After a final night in the hospital, I was back home to see the kids arrive back from school on Thursday 8th November.
The Positives
Although I am still tired from my time in the hospital, I have to say that all of the staff were lovely. I even managed to get a free massage as they had volunteers on the ward happy to provide treatments. I had a back massage right before my harvest which was just what I needed after my night of back pain. I was also on the ward with some lovely ladies that I could chat to and I had the time to read 2 books and catch up on IPlayer. I was lucky to have my husband with me as much as he could manage. He was with me through the whole harvest and we were even allowed to go out one afternoon to watch ‘Bohemian Rhapsody’ (highly recommend!).
The Negative
Just the lack of paracetamol when I really needed it. I discussed this with the consultant when I left and he agreed that the errors with medicine shouldn’t have happened (it also happened with my anti-sickness medicine after my chemotherapy).
Here is my YouTube video detailing my recent stay in hospital whilst getting my harvest:
As to what is next, I have been asked to attend for an echocardiogram prior to my next stay in hospital. Whereas initially, the plan was to get me in for my next lot of chemo and stem cell transplant before Christmas, now it looks like it will be January/February time. I have mixed thoughts about this: on one hand, it will let me have Christmas and New Year with my family. On the other, I just want to get it over and done with. I am conscious that I should avoid big crowds/be mindful of hygiene to reduce my chance of getting any bugs prior to my next lot of treatment. I am also aware that there is a big possibility of losing my hair following the chemo I just had and I do not relish the idea of going a few months without hair only to get yet more chemo which will make the hair loss continue for even longer.
Ultimately though, I know that this is only a little thing and I am so lucky to be offered this treatment in the first place. If it helps to reduce the chances of my MS worsening, it will be worth it.
Until next time,
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 fact your blogging abs video blogging this is amazing to people like me who don’t have this option yet but thinks about it all the time. I can’t thank you enough 💕💕
Stay strong! Excellent info
Thanks Susan 🙂 xx
Eugh, that’s what I’ve hated about hospital stays when you can’t sleep because of both the noise of the ward and the constant wake up for blood pressure and other tests and such. I’m sorry you’ve got lack of sleep on top of everything else to weigh you down.
I like the whole ‘harvest’ thing, sounds quite sci-fi-esque!
That’s amazing news about having a good harvest of cells. And what a lovely mini treat with the massage. It also helps when you have some friendly fellow inpatients to spend your ‘incarceration’ with, but I’m sure having your husband there wasn’t bad either 😉
I can see where you’re coming from with the Christmas issue, that can’t be an easy one for you because there’s no ideal time to have the next lot of chemo and the transplant.
Thank you for sharing your journey with us. This will provide invaluable for anyone in a similar situation or who goes through this in future, not to mention those of us who are struggling just to see the grace with which you fight your own battles. Hats off to you, Jen.
Sending love and gentle hugs from a distance so you don’t catch my flu! 🙂
Caz xxxx
I hope that you are feeling better now Caz? The massage was lovely, such a nice treat before the 4-hour harvesting procedure 🙂 I have come to terms with having to wait until after Christmas now (hence my sharing Christmas recipes!), it is good to have something to focus on before I go in again and it will be lovely to be with the family. Unfortunately, my hair has now started falling out after the chemo. I have been trying to style it so the patches aren’t too obvious, but it is tricky and I may have to admit defeat and shave! But other than that I feel ok, which is very lucky. I know a person who had the same thing done in Sheffield the week before me who has been quite ill, so if hair loss is all I really have to contend with at this stage, that’s not too bad. Take care lovely xxx
Wow Jen! It’s such a huge process, but the benefits will be all worth it. So pleased you got to spend some quality time with hubby and here’s to a relaxing Christmas for you all. Thanks for the update also. Have a good week!xx
Thank you so much for keeping us updated Jen! I know hospital stays are just plain exhausting, but I am glad you are home now. I never understood how they expect anyone to rest in the hospital when they wake you every 3-4 hours! Your journey with this process has been absolutely amazing and I am so happy things are working out and there was good news about good harvest cells! I hope you are able to get lots of sleep and feel good! Your grace, strength and determination are so inspiring and you touch a lot of hearts Jen!
Sending you lots of gentle hugs from an ocean or two away! Lots of love sweet lady!xxx
I am glad to hear you are now at home and getting to spend time with family. You are so lucky you had nice staff, but then again I guess with this kind of intense treatment they have to be nice and that you met other ladies on your ward who were also nice which I’ve never met, I an always the youngest one. I just saw Bohemian Rhapsody and it is sooo good! Queen is my playlist pick. I have a had countless ECGS and echo so I know what you’re going through.
Take care and try to relax and enjoy yourself and your time with your family over the Christmas period.
Free massages from volunteers. That sounds good. I am in need of a massage myself. We should be doing more of that in adult hospitals as there are so many things in children’s hospitals but once you move into adult care there’s nothing. You should check out my post about this on my Allheart Australia FB page. By the way I love your new haircut.
Thanks so much for the comment on my hair. It is starting to fall out now due to the chemo, so I may have to buzz it! The massage was lovely, definitely something that should be offered more. I think the problem is that they are volunteers, so no-one is actually paying for it, it depends on the goodwill of people xx
I missed these posts Jen, keep positive.
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