Hi everyone I'm Cornishman and I'm having my 2nd dose of chemotherapy after a 11 month gap from the 1st lot and,this 1 is tough going as it's 3am and I can't sleep because of the steroids I'm taking for the next 3 days,so I thought I write here and share my experience.
The chemotherapy I'm on is R- GDP which was change from R-CHOP that I was going to have but,my consultant call me up to ask to see me to tell me this and why they decided to change it,to R-GDP ,which is a tougher treatment of which would be better for my overall out come.
So I've just done treatment 3 of 4 this Wednesday and it was another long day at Headland unit but,it's worth it for my out come, I'm having problem's with tiredness all the time,no interest in food at all which I know is not good, so I'm forcing myself to eat something, which has to be quick and easy as I lose interest very easy.
As I mentioned I've got 1 more treatment to go next Wednesday, then I have another appointment the following week,to find out about my stem cell transplant which I'm having and,at the moment I know very little about but that will change on the day of appointment, I'm a little nervous about it but it's all for the best hopefully.
If anyone out there has any advice about what's good to eat or tiredness I would be very grateful as I could do with some advice.
Thank you in advance and I hope you all are keeping well
Cornishman
Hi , good to see your update but not the challenges you are having - this living thing can be hard at times but you just need to push through.
Going off food can go in cycles, so try not to sit in front of a large plate of food but rather snack on anything that is safe to eat when you are on treatment.
We used to have a pot of good home made soup on all the time and I would often have cups throughout the day. Actually mashed potatoes with cream, cheese and some gravy was another favourite as it was sloppy, had a lot of taste and full of protein. Some folks say that trying strong tasting foods like curry was good...... but I could not face that. Lots of Scrambled eggs and porridge (being Scottish) but mindless snacking.
In light of your impending visit to see the Stem Cell Transplant (SCT) Team, I advise you come and join our dedicated Stem cell transplants for blood cancers Forum as going through SCT is a very different journey from normal cancer treatment so talking with folks who have walked the walk can help...... and yes, I help out on that forum.
Your meeting with the SCT Team may be full on so it’s good to be prepared.
Folks who have been through SCT tend to call this 'The Talk'. It's where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving permission to your team to take you to the point of being open to very bad infections and side effects, then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.
The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.
I was given a 5 page connect form away detailing everything they had said and I I was willing to go ahed I had to sign it and return it and this started the process.
You need to ensure you have a good understanding so I would always advise you have a note book with you. The note book is the place where you start to put down ALL the questions that comes to mind. These questions often come to mind at silly o'clock. Put them in the book and park them until your appointment. The note book also helps you sleep.
The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out and you say 'well, yes I have' A lot of people freeze at these meetings and are overwhelmed by information. So you can go through questions one by one, making sure you take notes. If you don’t understand something you stop the Consultant and ask them to put into a form of language that you understand.
I would also recommend that you always have two sets of ears as the information can come thick and fast and two people can hear far more than one and its someone to sit and have a cup of coffee with after and talk through what was said, rather then rushing home and not unpacking it.
I have been through two SCTs with cells from my brother so know full well what this journey is like but you will get some great support in the SCT Forum.
Always around to help out,
Just driven down to Edinburgh so on catch up.
Yes, big plates of food was a total switch off and very disheartening when I was leaving half, so mindless grazing works. We had a few pots with mince and a chicken (cut very small) in a cream sauce that I could dip into. We discovered orzo!! and that was great with mince. I should have taken out shares in Ambrosia rice/custard.
Have you been told what type of SCT they are looking at?
I had two Allogeneic SCTs (Allo) using Stem Cells harvested from a matched donor - my brother.
The other main type is an Autologous SCT (Auto) where your own Stem Cells are used.
I can give you more info if you want.
22 degrees in Edinburgh and the three granddaughters need to go to the park - hard life
