Sct

Hi Alice ((hugs)) and so sorry to hear you are going through the ups and downs that are often part of this SCT journey.

How did I deal with it?....... as there were no other options I just did. For me the process had to work and if I did not knuckle down and persevere there was no future.

At the very start my wife and I agreed that if one of us were have a ‘pity me party’ the other had to show tough love and snap them out of the mind set. My wife did great but I had lots of parties.

I often post this mental picture as I see the SCT journey to be like a climb up a craggy Scottish Mountain.

These Mountains have well trodden paths with little cairns (stones on stones) put up by the many folks who have walked these paths before us.

At each cairn the path divides in two - these are the points of decision - like..... How we deal with side effects.....? The mental and physical challenges.....!! The picking our selves up 'again' times......!! It’s scan time again....!! How can we move on...?

We do have to look very carefully at where each track will take us. Do we knuckle down and tough it out and keep climbing up or do we take the low path and keep going round the hill and not reaching the summit...... not seeing that view for the first time.

When you look at the cairns they are always just on the tracks that will lead to the top. So each stone that is put on the cairns is a "yes we can do this" decision......... keep putting the stones on the 'yes' cairns....... and every now and then have a look back down the hill and see the starting point and all the little cairns on the paths you have taken. The further you move on, the past looks very small and fuzzy at the edges.

If you keep walking the low paths you will see stones left at the side of the track, these were that hopes and dreams that were lost.

Hi Alice,

I’m really sorry to read about the infection you picked up, here’s hoping you can knock it on the head and get back on track really quickly.

The mental battle is really tough. I felt like the world had completely stopped and shrunk but nobody seemed to have noticed and carried on as if such a catastrophe had not happened. The only thing I can describe the process as is as a slog. Sometimes all you can do is get your head down and focus on the next day, hour, sometimes even minute in front of you. The thing that kept me going was to remember that all of what you are going through is temporary. It can’t and won’t last forever, and it’s just something you’ve got to plough through to get to where you want to be. If you’re finding the mental stuff really tough, mention it to your team, it’s quite normal during this process and I’m sure they’ll know what to do.

Here’s hoping you get over the infection soon Alice and have a bit of a smoother run.

Greg

Thank you both

That's helpful. I do see this as temporary it just feels like still long way to go. I'm not used to being an inpatient for anything so that's new too but temporary. I can feel lump gone down fully which happened straight after first rituxumab so I hope there's not too many more chemos to do before stem cell part 

Thanks Alice x

Yes, totally understand.

I had never been in a hospital over night in all my 58 years so I was the same. When I had my R-EPOCH for my lymphoma I went straight into 5 days straight and 129 hrs of chemo and this was done 6 times so I think I was in the grove by the time my first SCT came along.

Viewing this all as a temporary bumps in the road of life is a good way to look at it ((hugs))

Hi guys

I hope your all doing okay.

Thought I would give an update. My infection which was mainly temperature spikes consisting of shivers and getting hot and dodgy tummy after MATRIX went on for quite a while I don't exactly remember the length. I had antibiotics, chest xrays, several blood cultures grown and my picc line was finally removed. All was negative so they think it was a viral infection. I was inpatient for over 3 and half weeks. At least I will be prepared for SCT staying in so long lol

My pet scan was scheduled in round same time and was told infection would show up on here. My consultant has suggested another pet scan after my next treatment which should be clearer without any infection. Good news is my primary disease site showed quite a bit over 50% reduction and they were pleased it's working. 

I finally got home Sunday but only for 3 days but at least caught up on my sleep. Back again Wednesday to have new picc line put in. Intrathecal Thursday was very dosed up on gas and air which helped lol. Started RICE again Friday think there's 3 days of this. 

I'm over half way through now 

Alice x

Hi Alice, I am doing my happy dance in my Kilt (lol) that you are making progress....... we would always be happy when we were seeing progress rather then standing still.

So glad you managed to catch up on your sleep....... hospitals and sleep do not go together. I did use good ear plugs and a face blind..... it helped a lot..... but I looked like a right pillock.

My Central Lines (Hickmans) were a never ending source of problems, had two infections and one stopped working the night before my second SCT so it had to be replaced - at 4am!!!!!........ but the great Glaswegian staff banter kept us all going.

You are doing great ((hugs))

Hi all

I hope you are okay

I actually feel extremely fortunate as I made it home after RICE, nothing beats your own bed and sleep. I had to go in for blood test Monday and they topped me up with blood transfusion and want repeat blood test Thursday. 

I also received the really good news the couple of abnormal cells they found when doing my first lumber pucture were gone now I've had second lumber puncture. Such a big relief.

All being well I have my last chemo in couple of weeks. Then I start my stem cell transplant.

Alice x

Good news Alice, good news xx

great update nearly another stage finished, hope all goes well in a couple of weeks.

John 

Hi Alice,

glad to hear one stage is a ‘tick’, hope everything else works to plan too....

hugs xxx