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Day +4 post transplant
Morning,
Currently sat in isolation following a MUD (matched unrelated donor). Stem cell transplant, day. Zero was on Wednesday and it really did feel like I was being given my life back after being diagnosed with perhipial T cell lymphoma in November. I've been through 4xchop chemo, intrathecal and Iv methotrexate reformed and IVE chemo just to get to the point where stem cell was an option for me, it's my best chance of avoiding relapse and in all honesty I was not sure I would get here. I'm keeping positive overall but am experiencing some side effects now, particularly tummy trouble. The transplant team and nurses are amazing and I have been able to 'do up' my room to make it a bit more homely which I think has been good for my mind.
I'm doing good with keeping active so my legs haven't failed me yet- has been a problem on previous stays. I stretch daily and am trying to do the excersises the physio has recommended.
I'm also very lucky to have access to a complementary therapist so have oils to smell and reflexology which feels like a treat amongst all of this.
Reading the forum has been helpful to see what to expect and it's good to know that side effects are normal.
It's a strange position to be in, and a year ago the thought would have been frightening, I have had a good year though, found so much joy in this and lived so well! Just got this last hurdle! The sun is shining outside and wish I was out in it... but I need to remember I'm lucky to be here and I will value that sunshine even more when I get out.
Bit of a ramble of thoughts here!
Hoping to hear your stories and how you got on,
Currently sat in isolation following a MUD (matched unrelated donor). Stem cell transplant, day. Zero was on Wednesday and it really did feel like I was being given my life back after being diagnosed with perhipial T cell lymphoma in November. I've been through 4xchop chemo, intrathecal and Iv methotrexate reformed and IVE chemo just to get to the point where stem cell was an option for me, it's my best chance of avoiding relapse and in all honesty I was not sure I would get here. I'm keeping positive overall but am experiencing some side effects now, particularly tummy trouble. The transplant team and nurses are amazing and I have been able to 'do up' my room to make it a bit more homely which I think has been good for my mind.
I'm doing good with keeping active so my legs haven't failed me yet- has been a problem on previous stays. I stretch daily and am trying to do the excersises the physio has recommended.
I'm also very lucky to have access to a complementary therapist so have oils to smell and reflexology which feels like a treat amongst all of this.
Reading the forum has been helpful to see what to expect and it's good to know that side effects are normal.
It's a strange position to be in, and a year ago the thought would have been frightening, I have had a good year though, found so much joy in this and lived so well! Just got this last hurdle! The sun is shining outside and wish I was out in it... but I need to remember I'm lucky to be here and I will value that sunshine even more when I get out.
Bit of a ramble of thoughts here!
Hoping to hear your stories and how you got on,
Comments
It's so lovely to hear from you - Happy day +5 to you!
I actually felt a little lump grow in my throat reading your post as everything you have said is extremely similar to how my experience of my earlier post transplant days were (almost 6 years ago!). I too decorated my room to help my mind and put photos all around my room of friends and family to remind me of the good times and make me look forward to more of them once I was recovered! This helped so much. I was also known as the 'pink girl' as I was 24 at the time of transplant and I scattered my room in pink heart pillows and cupcake bedding!! Not everyone's taste but it was definitely better looking at that thank the plain great clinical walls
Do you mind me asking how long you are in hospital for?
I was in isolation for 6 weeks in the end, and was dreading being in the same room for that long, but the rest and isolation was needed if I'm honest - so make the most of it! I also suffered with a funny tummy, sickness and severe tiredness. I slept my way to recovery... with stretching here and there to keep my circulation going and I loved making use of the therapists. My favourite was the reflexology also and the oils really helped with my sickness.
Another similarity was that my transplant day was 1st July so was also in isolation during the VERY hot and sunny days... longing to be out there in the heat and to feel the sun shining down on me. BUT it really was worth the wait and it sounds like you have a great positive attitude which again, which is definitely the best way to be! You will be out there again before you know it... and trust me, it's actually too hot at the moment. Not very pleasant to be honest!
You will undoubtedly have those down days (as we all did/do) but the light at the end of the tunnel is near, so stay positive and keep up the good work
How is your appetite? After my transplant, I was warned I wouldn't want to eat and would need a tube to feed me... but I refused this and forced food down me to keep my strength up and I really do believe this helped my recovery! I hope you're able to eat too?
Sending best wishes and if you have any other specific questions, we will do our best to help!
Keep us posted.
Nichola x
I don't think there is a set timescale for getting out, best case would be day +14 but I think it's best not to take anything for granted so not thinking about getting out yet,then I can avoid disappointment. 6 weeks is a long time! But sounds like you had a nice room too, it does make a difference, especially a duvet that's washed at home so it smells nice!
It's great to hear you are so far past transplant, how are you doing now?
Clare
Just eating as when you can, no matter how big or small, will help keep your strength up
Post +14 days would be amazing, fingers crossed for you - it's really great to have a vision of where you want to be when... that's what kept me going
I am very well thank you - I now have check ups just once a year, which usually consists of a 'hello, nice to see you and see you next year' kind of thing
After the first year post transplant of being on a serious cocktail of drugs (I rattled when I walked, ha!) I then just had a regular top up of penicillin for a total of 5 years which I came off last year. Being 'medicine free' felt a little strange at first as you spend so long relying and depending on them - in a weird way become your best friends... but it's nice now to give my body a break from it all.
The transplant has changed my life - not only for the obvious reasons, but in the way I chose to live my life now and how I think. Once going through something like this, it's part of our lives and makes us who we are and I will forever be grateful to everyone involved, from the nurses and Drs to the Anthony Nolan team and my Italian hero!!
I suffered quite badly with fatigue (still do sometimes) but try and fight it by staying active (when I can) - and I actually managed to complete this years London Marathon with my husband, which was a huge achievement for me both mentally and physically. Something I NEVER saw myself doing - even before I had my transplant! But there's something about having the transplant that makes you more determined to beat it and achieve the things you didn't necessarily think you could ever do... when there's a will there's a way!
I hope you're feeling well today and I wish you a very speedy recovery!
Anything else, please just shout
Nichola x
I hope things are progressing well and you're coping with the tummy trouble OK. For me it was only really bad for a short while and did improve, but it was some time before things got better and it was quite some time before my appetite improved.
If you can manage to eat something it will help and I found the nutritional shakes helped quite a bit and were tolerable. I did lose quite a bit of weight so anything you can do to minimise this is good, no matter how hard you find to eat. The threat of the feeding tube was also the best incentive I was given to try and eat and thankfully I managed to avoid it.
It's also good that you are managing to maintain some exercise.I confess to being lazy following my transplant and spent a lot of time in bed. I think Nicholas description of 'sleeping to recovery' is quite apt and probably did much the same myself. It was amazing how quickly I lost the strength in my legs and how long it took to get it back when I eventually did start to exercise again. It's interesting to see that you have access to a Physio, which is something I didn't and I think is an area some hospitals fail in as there is an element of rehab in getting back mobile again.
Your mention of IV methotrexate takes me back to quite an unpleasant stage of my treatment as I also had that and struggled with the amount of fluids that had to run through me to keep my PH levels in check. I seem to remember I was on this for a couple of days but during that time I had that many lines into me (the methotrexate and up to three fluid lines spread across both arms) that at time I felt like a marionette! Sleeping was night on impossible without laying on the lines or getting them tangled so I barely slept during that period.
On the other hand I didn't find the intrathecals that bad, though they gave me headaches for a couple of days in the early days. I had ALL and as part of the Trial protocol I was on I had intrathecal treatments regularly during my treatment and also for a year after my transplant, such that I lost count of how many I eventually had. I was having them weekly at one point!
It is good to get home so do look forward to that which in my case happened on about day +21, though it was short lived and thanks to a fungal infection in my mouth I was back in hospital within 3 days. Having looked forward to going home so much and feeling a sense of achievement by getting there it was a real kick in the teeth to end up back in hospital so soon and was definitely the lowest point of my experience. I ended up being referred to a Clinical Phsycologist as a result but by the time I got to see them the infection was starting to improve and I was feeling better about myself.
We all have ups and downs along the way but if you can focus on the end goal which is to recover and get back to leading a normal, healthy and long life, those low periods will soon pass and like me you will be able to look back and reflect how far you've come.
I'm glad that you've found the forum useful and hope that you stick around to keep us posted on your recovery and join in the discussions where you can.
Best wishes,
Steve
Nichola, this has all had such a positive impact on me too, I was a workaholic, I've now realised that there's so much more and have done so many amazing things with friends and family since diagnosis, have refound hobbies, I always made sure each and every day counts. I find 1 thing I am grateful for each day and will now step back from most situations and apply a different perspective to it... It seems counter intuitive given what's been going on but I am so calm, relaxed and genuinely happy. I hope I can keep this in mind as I go back to work as I love my job but will seek to get a better balance, have even been doing online courses to help me with that while I'm in here.
Strangely Steve I empathise with the fluids for methotrexate, being hooked up for 6 days solid also takes its toll which is why it doesn't feel so bad this time as I get breaks throughout the day.
I haven't used any shakes yet but am managing a bit of food, and eating lots of yogurts. My mouth thankfully is improving now, I'm on a morphine driver as it got quite bad and that has been managing any pain really well. I did have some difficulties with side effects and have spiked a fever so went through the drill, blood tests, antibiotics, etc... But it resolved quickly and aside from a common cold I am fine.
I am holding fluid though and putting on a fair bit of weight so having water pills today to try and get rid of it.
Overall I'm doing good, Day 11 now and I'm inproving and blood levels should start increasing early this week. I was also really excited to start GCSF injections, I think it's because they now mean my white cells will be coaxed into production so recovery of blood counts feels even closer.
Hoping the worst is over, but I guess it's taking each day as it comes.
Clare