Wednesday, 31 July 2013
First few days of cycle two.
Friday when I went to hospital I wasnt sure of where to go, not that I didn't know the directions, but all I knew was I was getting the chemo, so I didn't know if I went to the que to see the docs or straight round to the treament area... so I went to the one that came first which was for the doctor. Turned out to be the right choice, normal routine for the doctor, wait, give bloods, wait, see doctor, but instead of going home I had to wait longer and wait some more... and then maybe finally, no, wait, oh here we go in for treatment and wait there while I get the chemo into me and the retuximab infused.
During the blood samples last week the forgot the do a special genetics test to see if it was maybe a genetics... defect...? can't think of the right word, but the Lymphoma may be caused by that. So they had to take an extra sample for that this week as it wasn't done last week, during this time the nurse was looking for the notes for it and the line popped out, I calmly stopped the blood going along the vein with my finger and told the nurse, who was holding the other end of the line, who jumped and got a cotton bud, ammusing, I thought so anyway. So had to be stabbed again to get the samples for the genetics test. Turned out that it was put into the wrong bottles so had to be taken again, stab count three.
The talk with the doctor was just your run of the mill how are you? yeah i,m fine glands are swollen checks glands, glands not swollen fu glands you where swollen yesterday, oh well, i guess that's a good thing. It was with a doctor I had had before as we recognised each other, but she had a file with my name on it and I didn't have a clue what her name was. I'm pathetic with names, good with faces, embarrasing with names. Im guessing if I ever get married I will forget my wife's name on our wedding day.
Finally in getting the line put in to get the IV drips the nurse was finding which vein to use, all of which where well pumped up and very visable, this didn't help much. First attempt in we got the flow back of blood going into the syringe, but when putting in the fluid from the syringe to make sure it's working, the fluid was just going under my skin, attempt one fail, stab wound four. Next attempt was on my other arm, my right arm and same thing happened again, seemed to be going well untill putting the fluid in which just went under the skin again, attempt two, stab wound five.
She went and got another nurse to try who was a little bit more brutal (which I prefer, gets it out of the way faster) when she went in all we heard was a POP and I felt the force of it up my arm!!! was impressive, my veins have addapted to being stabbed and thickened up so much. But at least stab wound six of the day was the final one and I recieved my treatment with no bother of side effects apart from the crappy piriton, but that even seemed to pass a lot quicker than what it normally would. Was home for a late dinner that night.
The following morning I felt a bit nauseous but I litterally took a small drink of orange and it was away, fingers are still a bit numb though, if these are the only side effects I'm getting from the chemo I'm a lucky guy, I guess the years of different drugs has prepared me for this in some way. Hair seems to be thinning a bit too but I think thats more of my receding hairline than from the chemo, but if anyone asks i'm blaming the chemo. Blaming may be the wrong word, I've been wanting an excuse to shave my head for a few years now, so this is the perfect opportunity.
I've not been walking as much this week though, but I have changed my breathing exercises to actual exercises with weights and on the bike machine, was on the bike machine for about an hour and a half on Sunday and felt like I could push it on a lot longer, I was very pleased and not even sore the next day, went full pelt for just under 5 minutes aswell at the end. Weights haven't been anything spectatular just using a dumbbell with 5KG on it.
But all is going good so far this week "it's hard to feel sick, when you dont feel like there's anything wrong." In fact I feel as good as I have for quite a few months...
Wednesday, 31 July 2013
The week leading up to the second Chemo.
Following the hospital appointment on the Wednesday...
Thursday and Friday things where still very good, felt a massive improvement in my chest on the Thursday which was great I could actually talk withought coughing.
Unfortunately on the Saturday my glands all seemed to swell up again in my throat, back and groin. But I didn't get in contact with the hospital about it as they said when I was in hospital that "your glands could swell up before they go down", so I let that one go, but they stayed swollen untill I returned to hospital on the Friday.
One other thing that started was my finger tips felt numb, as if I'd been playing on the guitar, but with both hands and my taste was a little funny, but not sure if that is due to the chemo or the mouthwash I am on, I think it's the mouthwash though.
Don't mind not having the taste though, as I smoked for years and got used to it, when I stopped smoking a few months back and got my taste back to I didn't care for the taste of a lot of things, they where quite vile, so I'm now glad I can eat these vile things again with knowing they're vile.
Continued with walking and doing my breathing exercises and I am able to push myself a lot more now which I do do, a lot, too much maybe, but what's the point if you can't challenge yourself. To spoil myself after getting paid I bought myself a nice projector, not a top of the range one though, but a bargain cheapo, lets test it out jobby, which is great and have it set up in my room with my lovely new self built computer, flashing out X-Files episodes which I'm up to season 9 (last season).
Pushed myself more on the Thursday and went on a hilly walk, coughed a bit but felt great afterwardsWednesday, 31 July 2013
First Treatment and visit in hospital
My first treatment of R-CVP was on Friday 5th July after being diagnosed with Marginal Zone Lymphoma the previous day, 4th July (incase you couldn't work it out). The ward i was in I was with 3 other guys who had been there for a number of weeks, they where very friendly and a great bunch to be with (Martin, Charlie and Michael) they where also very supportive.
The morning of the chemo I had a nice shower and then went for an x-ray to see the progression of my chest to see if it was possibly clearing up (which was just the same as on the Wednesday) and returned to have the Chemo ready for me just before lunch.
Got my piriton in me and while it took effect they done all their checks on the bottle and drips etc, I hate the piriton makes me drowsy for the rest of the day, anyway the gave me my the two chemos which i hadn't had before my Prednisolone and began me on the Rituximab (both of which i had been on before as an immunosuppresant).
I was quite calm and relaxed and really not that bothered about getting chemotherapy, from a fairly young age I knew at some point I was going to get cancer, not that the doctors had said I would and I had certainly been in much worse sittuations especially with my stomach bleeds, lying in bed, incredibly drowsy having been throwing up stomach fulls of blood for five hours or more. On more occassions that i cared to count.
I also know not to get excited about new things as over the years the times that i've heard about this miracle drug and this one that works brilliantly with people with ITP etc that just don't, so ive learnt not to get excited about things untill it it works brilliantly on ME and is a miracle drug for ME. Everyone reacts differently to drugs and experiences.
But the day went fine and didnt have any problems with any of the drugs, no apparent side effects and all was going fine, all the while coughing because of my chest, which they still hadn't found out what had been causing that.
Over the next few days only one thing seemed to be causing me problems and that was when i tasted something, whatever side i tasted it on, the ear and neck on the same side hurt. Not chewing, just tasting, my guess is that the glands where swollen and my saliva glands where caught up in it and that's what was causing it, just a guess though. Finally on the Tuesday night the nurses came in to move me to another private ward because they had found out what was causing the problems with my chest....
Turned out it was some type of Virus that is common in people that are on immunosuppresants and have ITP, didn't take in the name of it. They moved me so the other guys in the ward did not get it aswell, as I would not be good to be around if they didn't have an immune system with being on chemo. I'm quite a reclusive person and like my own time so I was happy enough with this, had my Nook for reading, Kindle Fire for films, Phone for socializing and Vita for gaming, couldn't be happier.
The following day on the Wednesday the physiotherapist came to monitor me and see if I was fit enough to go home and make sure my respiration and heart rate where ok, which they where and was allowed to get home (10th July) was a bit dissapointed as i didn't get much time to sit around by myself and do whatever, but it was still nice to get home.
The virus they told me had to just be worked out of my system by myself, so was going on walks and doing some breathing exercises to try and loosen things up and it slowly improved to the point it is now where it just seems to be a bit of guck I need to get out rather than the virus being there anymore.
Retuned for a checkup the following Wednesday and the counts where all good and didn't have any problems and they where happy that I didn't need to come back untill my next cycle of chemo on the 26th July...
Wednesday, 31 July 2013
A little bit of background info...
In 1994? I developed serious health problem which turned out to be Autoimmune Hemolytic Anemia which is a rare blood dissorder that effects the red blood cells (RBC), where your own body destroys your RBCs. I was on various immunosuppressants to try and stop/slow this down and attending hospital weekly and biweekly for a number of years.
In 2000 the doctors decided to remove my spleen as they thought that is where all the damage is being done. Which turned out not to really help, instead of my body destroying my RBCs it changed to destroying my platelets, another blood dissorder called Idiopathic Thrombocytopenic Purpura (ITP), combined, this is known as Evan's Syndrome.
I have now had ITP for 13 years, using different immunosuppressants to try and stop this, none of which had made a good enough impact for long term use and having to attend hospital each week since. Two to three years ago i began to get stomach bleeds on about a monthly occurance and some very close calls.
A year and a half ago I began treatment on Romiplostim (Nplate), things where going well and then from April this year things seemed to be going incredibly well untill i started to develop a bad coungh which kept getting worse and worse, nothing seemed to help it.
Finally I had a CT scan and the results came back that I had swollen glands in my back. Two possibilities, first was Glandular Fever and the second was a form of Lyphoma, more tests where done and over the following couple of weeks the doctors where focussing more on which lymphoma it was than anything else.
I began seeing a new doctor who is in charge of patiants with Lymphoma and he decided to keep me in due to my cough, following day we find out that it is Marginal Zone Lymphoma and begin on R-CVP on the Friday (5th July)......