Stem Cell Transplant (SCT)

Hello ,

sadly this is all too normal, but you will improve, it’s a gradual process, though, so it won’t be till you look back and suddenly realise you’re getting there!

try to challenge yourself a teeny, teeny bit each day, then as you get a bit stronger, a bigger challenge. Exercise is an odd thing, by doing it you get stronger and will then be able to do more! Even getting out of bed counts in the early days! It sounds counter intuitive but exercise does help with fatigue! 

sending you a big gentle hug xxx

Hi , so good to hear from you again and most definitely this is the place to post.

As moomy says........ you are on a normal post SCT recovery....... it just takes time and it is important that you don't get frustrated by this - you have been through a lot so your body is on catch up.

There are some interesting...... and funny stories about bowel movement and other issues that can be found in this thread...... Amusing stories from your SCT journey

The months and for some, years post SCT can be a challenge, but again we have tried to collect our thoughts and advice in this thread........ Life after a SCT - A Survivor's Guide

Your son is spot on......... what we go though in the SCT journey is all for a purpose and it is important to keep our minds firmly fixed on the greater good in all this.

Please keep posting as stories like your can be a great encouragement to those looking at the Magical Mystery Tour

If we don't talk again - have an amazing Christmas and healthy New Year

Thanks Mommy, it is good to know that things will improve.

Hi Mike

Thank you, I am really looking forward to the new year hopefully not being so nauseous...

My Mantle Cell Lymphoma journey (I posted this on my Facebook to let people know what happened to me as a lot of people didn't know and to remind people that there is always hope)

Hi everyone, 

I think it is time to come clean to what has happened to me during the last ten months or so. I decided to post this so everyone that reads it know that when every thing seems to be against you, there is always HOPE. Never give up as no one knows what happens next, advances in medical treatments are discovered all the time and what we might have thought it was a death sentence about three to five years ago, today can be treated and sometimes cured.

In March/April of last year (2019) I was diagnosed with Mantle Cell Lymphoma. It is a rare type of cancer which is normally very aggressive and some 3 to 5 years ago, would have been a death sentence. At the time of being diagnosed, it was pretty advanced and classified as stage four.

I was told that because of the type of lymphoma and how advanced it was, I was going to be given stronger doses of chemo, “industrial” doses. 

The treatment given was part of the Nordic Protocol which involved six cycles of chemo given every 21 days. Chemo was given via a PICC line, which is a tube, inserted in my arm, which went to close to my heart. Within those six cycles, Stem Cells were extracted and stored so they could be re-introduced later on in the treatment. By the way, as a side note, the stem cells were stored in liquid nitrogen... science.

By the end of the six cycles, I was told that a lot of the lymphoma had disappeared. As Mantle Cell Lymphoma is naturally aggressive and unpredictable, the left overs, even inactive, needed to be wiped out so the next chapter commenced, the very awful one.

The next stage which some people call it "the big show" or the "magical mystery tour" involved given me a semi-lethal dose of chemo which is meant to wipe whatever is left (even good stuff) followed by the Stem Cell Transplant which involved the re-introduction of my stored stem cells to produce the good stuff again. For this I was in hospital for two weeks in isolation and constantly monitored. This part of the treatment was not fun! 

Now is the recovery stage, which it will be hard but I will get there. Fatigue, complete lack of energy, unable to walk more that 15 meters without having to sit down and catch my breath, chemo brain and plenty more symptoms, which I rather not go in detail.

And now the good news, I just had a PET/CT scan (6 Jan 2020) and it showed no cancer so all the pain and suffering together with a healthy attitude, good humour and the great care I received from the doctors and nurses at the Canberra Hospital paid off. My next appointment with my specialist will be on 20^th Feb when hopefully I will be given the all clear to return to work. The support I received from work and my work friends was invaluable. Michele will be glad when I return to work as she has been putting up with me every day since the beginning, looking after me, driving me to appointments and believe it or not, she watered the garden, love you Chelie.

Nothing would have been possible without the work of my specialist, Dr Phillip Choi and his team of doctors and specialist nurse Jenny Northey, the great team of nurses at the Canberra Cancer Centre at Level 4 (I could try to mention everyone’s name but I am afraid I could forget one so won’t try). Last but not least, the nurses and doctors at Ward 14B, this is the place I spent the two weeks during my magical tour as well as some unscheduled visits. In addition, the support I received from my family and friends was invaluable, making sure I kept on fighting.

To all of you, THANK YOU, I owe you my life.

Remember, NEVER be afraid to confront the worse life sends you as you do not know what can happen. In my case, strength and my everlasting desire to annoy people kept me going, I still have another 6 billion people to go, I couldn’t leave this earth with unfinished business… and lets not forget my Latin charm, cancer could not overpower that.

Hi again and this is great news and great support and encouragement to those who have to go down this route.

It can be hard work but perseverance, persistence and a positive mind set can get you though.

Now to move on and build your all new life - do look in past and encourage others on their journey.

Great stuff, and putting it in your Facebook page does tell all your friends and family what was going on. (Daughter opened a caringbridge forum and made me co-editor in case she popped her clogs during her second, donor, SCT, but of course she didn’t!) 

do keep popping in to let us know how you’re doing from time to time.

hugs xxx