So I was diagnosed in April 2021 with DLBCL stage 3. I went through 8 rounds of RCHOP and seemed to be responding well and in October 2021 was in remission.
I then relapsed in March 2022 and had a cancerous cell mass removed from my small bowel.
Because the cancer came back so fast and more aggressively this time, they were sure that it would eventually come back so I was referred to the Haematology department and they then took over my care.
Over the next month I had many meetings ,bone aspirations and blood tests etc and eventually a PET scan which was a 3 on the chart which meant they weren’t absolutely 100% sure I was clear or not.
As they were so unsure, they decided that the next step would be salvage chemo to prepare me for a stem cell transplant.
They wanted to do all this just incase. So wether there was anything to kill, I’ll never know, but it was the safest bet.
In June I had a port inserted & had a lumber puncture to check if cancer had spread into my spine and then started salvage chemo, I wanna say 3 rounds (was all a bit all over the place because after my first round I had a bad reaction to the cisplatin in the chemo) I ended up in ICU with chemo complications, my kidneys almost failed and also had covid.
One of the worst times EVER!! BUT TEMPORARY !!
Once I recovered from that I had another PET scan which came back clear, although I still had to go ahead with treatment just in case there was something microscopic that wasn’t detected in the scan. So one more salvage chemo round.
In August I went into hospital for my stem cell harvest. Now because my arm and hand veins were so messed up from all the chemo in 2021, they weren’t able to harvest my cells the usual way. So they had to insert a femoral line into my inner thigh.
At first they said they’d do it whilst I was awake and inject me to numb the area. This didn’t go too well as I started to feel it and it was so unbelievably painful, I eventually made them put me under.
So a few hours later I woke up with this line in my thigh which ached a bit but that didn’t last long and it was fine.
Hopefully you’ll be able to get it done the normal way, but just warning you as I wasn’t aware that this would be the case and it wasn’t great.
I had 2 days of harvesting as they didn’t get enough cells the first day but this was pain free and I think I slept through most of it.
They then removed my femoral line which was incredibly painful as no pain relief or numbing. They literally yanked it out and then compressed my wound so I couldn’t bleed out. Again NOT fun at all- very sore but its very quick and the pain is temporary.
Ok so then I had about 12 days off at home to relax and had a meeting with my transplant team to hear how things were gonna be.
I had to prepare a lot mentally and physically before going in and get my packing sorted (I was told its usually 3 weeks in hospital but to expect 4 weeks, so that I didn’t get upset if I had to stay longer).
A list of things I took with me :
Preparing physically I had to make sure I was as fit as I could be. You spend a month not being too active (although in the first week of chemo I walked the corridors a bit and used the in room cycle machine). That didn’t last long as I got an infection and was then confined to my room for the rest of my stay, so I didn’t infect any other patient.
We were all separated and so you don’t interact with anyone except the nurses, doctors and visitors (i was allowed 2 guests per day, who had to wear full scrubs and masks)
Mentally, Im not sure I knew what was coming so that was hard to prepare for. I just knew I had to try and be positive as much as possible.
This became increasingly difficult as the time went on. Being isolated in a room for a month is so hard.
Ok so the first week was hardcore chemo (i can’t remember what it was called but it was way more intense that RCHOP!!)
Symptoms : diarrhoea, nausea (minimal vomitting)
The day of transplant was the easiest day (day 0) . The nurses all came in and my boyfriend was with and my parents on video call.
They said a prayer and then started pumping my stem cells back into me, through my port- this took a few hours and I was just sleepy but no pain at all.
Then the hard part starts…..
I got mucocitis which usually happens to various degrees but mine was the usual- although I found it so awful. Your mouth starts to hurt, swallowing and eating and drinking become impossible. My mouth was filled with thick sticky saliva that I either had to spit out every minute or scrape out with a tissue ( I literally went through a box of tissues a day).
My tongue started to peel and the back of my throat. Its absolutely horrendous and I didn’t know it would be that bad ( I expected ulcers but this was on another level)
I don’t want to scare you and this may not happen to you but I want to be honest and prepare you.
Because I couldn’t eat or drink I was fed through my port (the nasal tube didn’t fit my nose). I was encouraged to drink these weird milkshake and juice drinks which were only tolerable with a lot of ice. But I didn’t do too well with those. I also had to use mouth washes to try and keep my mouth as clean as possible.
Showering became such a chore. I had zero energy so some days I couldn't even do it.
I had nausea and diarrhoea and because of the mouth pain and isolation I became very upset and cried a lot. I also had a bad cough (scans showed no major issues but it lasted for about 3 weeks).
You're also attached to your drip stand 24 hrs a day for a month - so that's hard when moving around the room and to and from the bathroom.
They do give pain relief which definitely helped.
I couldn’t see the light at the end of the tunnel so for about a week and a half after transplant I was mentally in a dark place.
Slowly things start to get better I PROMISE) . It so hard to see it but it does.
I left only on day 15 after transplant (so a total of 23 days in that room I think) . I was only allowed to leave once I started eating myself and had no temperature .
Oh yes and they also check temp, and blood pressure all the time -interrupted my sleep a lot. I would try sleep as much of the day as possible so I wasn't awake to feel all the feelings.
Because I was in such a state all the Netflix and books etc I took weren’t used much as I just couldn’t concentrate at all.
The first few weeks at home were tough , still coughing and lots of phlegm, no taste so eating was a real chore. I could barely do anything without being out of breathe and everything took longer and a lot of resting after each little activity, I even had to rest for at least 10 minutes after showering (that was very tough). Be prepared to be totally exhausted!!!!
Im slowly getting my energy back, the taste buds came back after a few weeks and I’m still on the special diet (its like a pregnant woman diet - no raw foods and other things which they’ll tell you about).
I am now socialising in small groups and can finally enjoy a nice glass of wine here and there.
I have my PET scan next week , to see if I’m all clear and then in December I'll hit 100days and my immune system will be normal again. Its still going to be a while before I feel back to my normal self and hopefully Il have my port removed before Christmas and then all my immunisations again (they are wiped out after a transplant) in January.
I know all I’ve said is scary sounding and you may not have any or only a few of my experiences but its better to be aware of what could happen so you can prepare yourself.
If anyone has any other questions then please ask.
I wish you all so much luck and strength through the next few months.
Just remember in your darkest hours ..... it can be done and you WILL get through it. Im proof!
All the best,
Klip
