Stem cell transplant 1: week 1: conditioning chemotherapy week

Day 2: tuesday 31st July 18:

Today is the day I started my chemotherapy regime which was stated on my treatment protocol. I had IV fluids, I spoke to the dietician who informed me that I need to have a NJ tube inserted just in case I got mucusitous or lost that much weight I needed feeding nutrients etc to keep my body going. This made me so emotional and confused, as in the last clinic at addenbrookes I attended I was told that my 3 lemin hickman line would be suitable to feed me if I needed it. I told the dietitian this and she said "that I was told incorrect as if they fed me through one of my hickman line lemins the nutrients would go into my blood stream and not my stomach which would cause me alot of problems I didn't need". The dietician also informed me that if i decided not to have it inserted at the beginning (now) and then if i then got mucusitous or i lost so much weight i needed more nutrients etc they wouldn't be able to then insert a NJ tube as it would be too late or they wouldn't be able to get it in the correct place because of all the ulcers being in the way. The dietician said "you have a couple of days to decide whether you want it or not" I told her "that I understand I need it etc, but I think I want to get a second opinion from my doctors and speak to them", she replied "that's fine".

Day 3: wednesday 1st August 18:

Today I started a new chemo drug amphotericin (ambisome) which was part of the protocol/regime. Ambisome is bright luminous yellow and is a drug that can cause major reactions so if you have to have this drug you are ment to be given a small amount to see how you cope with it first before you have a full dose of it, 

 the nurse who was looking after me didn't get told that bit of important information, she connected me straight to a full bag of ambisome, made sure I was okay and then told me if I felt funny or anything to ring my bell, She then left me.

As soon as she got outside my room doors I started to feel funny my face started swelling and my throat felt like it was closing up. 

I rang my bell as soon as I started to feel this happen luckly she wasn't too far away and came straight back to see if i was okay as soon as she noticed my bell ringing. She came in and saw I was having a major reaction she ran and got some other nurses who came in my room armed with IV medication (piriton and hydrocortisone) to stop the major reaction I was having. The nurses stopped the infusion and proceeded to give me the IV medication that they came armed in my room with. The nurses then informed me they will go speak with a doctor and find out what they going to do now regarding having ambisome as I've had such a major allergic reaction. A couple of hours later the nurses came and told me that the doctors want to give me a drug called campath instead of continuing with the ambisome. They came and connected me up to the campath chemotherapy drug, and checked I was okay which I was but a little bit sleepy as IV piriton and hydrocortisone makes me feel a bit sleepy, the nurses then told me again if I feel funny or anything to ring my bell and they will come back asap. Then they left me, a little while later I started to feel shaken, hot and cold, feeling really sick and even being sick, banging headache on the left side of my head. So I rang my bell and the nurses came back they said they believe I've had a reaction to campath also. Then later on I had my normal chemotherapy and some more IV fluids. During the night I had a fever. 

Day 4: thursday 2nd august 18:

Today I felt extremely sick, I also had a headache and had massive cramps in my stomach. The cramping was that strong it was excruciatingly painful, I was trying to get comfortable but I couldn't get comfortable in no matter how I was laying or sitting or even any direction of position I was in, mum and dad visited and they said it was like I was in labour giving birth as I was so agitated with the pain. The nurses gave me some IV buscopan to try and get the cramping to calm down. Then I asked mum to come to the toilet with me as I didn't want to go on my own, I then passed 2 large fleshy blood covered clots from my vagina. I started to cry as the fact I've just passed something unpleasant and looking like that worried me very much but on a good note my cramping started to become less. I sorted myself out and rang the call bell one of the nurses came and I told her what had happened they toke the cardboard thing away (had to go to the toilet in the cardboard things so the nurses can measure everything). The nurse spoke to the doctors who then wanted to know whether the clots I passed came from my bladder or elsewhere in my body. The nurse asked me where the clots come out of my vagina and I said I really didn't know. They tried all different things to try and tell but still we didn't know and nor did the nurses. So then doctor ordered me to have a catheter put in as having it inserted could tell whether the clots came from my bladder or somewhere else (if they come from my bladder it wasn't good). So the catheter got inserted and I absolutely hated it, everytime I moved or walked etc it felt like it was pulling, and every time I felt the urge to need to wee I couldn't for some reason relax and just wee wherever I was as I wouldn't wee, so i would have to get up and go sit on the toilet to wee in my catheter. After a little while  (a couple of hours) the nurses said that they and the doctors believe the clots didn't come from my bladder. So I then asked if I could have my catheter removed as I couldn't get used to it. A little while later the nurses came and removed my catheter and then I had to start to get used to weeing normally again. During the night I found a rash on my arm the nurses gave me IV piriton to stop it from itching so much. 

Day 5: Friday 3rd august 18:

Today I had a sleepy day today, I ate 1 piece of toast.

Day 6: Saturday 4th august 18:

Today I felt extremly sleepy, my 3 lemin hickman line wouldn't bleed again, mum and my brother came up to visit and brought me pictures my little cousins did for me to decorate my room some more, today I ate 1/4 of a bowl of rice crispys, 1 pack of pom bears, and later on 3/4 of a pack of pom bears.

Day 7: Sunday 5th august 18: 

LAST DAY OF CHEMOTHERAPY!!!!!!YAYYY!!!

Today I was having a sleepy day again, but I did manage to sit in my chair for a little while. I had some IV medicine to hopefully stop me bloating. I cried about my NJ tube, today I ate 1/4 of a bowl of rice crispys, 3/4 of a small pot of mango and orange sorbet. At 3am I was told by a nurse that I will be NIL by mouth from now as I am having my NJ tube inserted about 10-11am, I then cried some more as I was so scared and even though I needed the NJ tube I didn't want it. At 4am I rang my mum who was at work doing a sleep in to see if she would come up for when I had my NJ tube inserted, unfortunately she wouldn't get to me in time for it to be inserted so she said that she would be there for when I come out from having it inserted.