After starting off the week all productive with card and jewellery making, it ended in a cold! Friday woke up really bunged up and feeling s**t! On the plus side managed to get a far amount of 24 watched, working myself through the box sets! Felt better on Sunday and a visit from Sals and co cheered me up. It was a lovely day too, you could even say hot so we sat outside in the garden! Not one to complain about the weather but I hope it doesn't get much hotter, its not very comfortable wearing a headscarf in the heat.
The next week passed by uneventfully. Lisa had a party for her birthday on Saturday night, which I went too but was pretty whacked from the cold so didn't stay long :0( Never knew a cold could hit you so bad.
Wednesday - dumdumdum, the day of the port fitting! Got to the hospital in good time, checked in and then was taken to the room by the nurse. Went through all the paper work and had my obs done, which all in all took about half an hour. Had to then change into the hospital gown and dressing gown. Tried to just stay relaxed and watched morning TV while my stomach was going berserk, never had an operation before!
At about 10.30am, the Dr came to see me, who was going to be inserting the port. He went through the procedure with me and asked if I had any questions. He explained what a port was - 'An implantable port is a thin, soft, plastic tube that is put into a vein in your chest or arm and has an opening (port) just under the skin. This allows medicines to be given into the vein or blood to be taken from the vein'. He explained it would make my life a lot easier, assured me I would get used to it and become quite attached to it - well I don't know about that! Have to say once he was gone was more nervous, it sounded more scary then when we had talked about it at last chemotherapy!
Shortly after he had gone the nurse came to collect me. She was very nice and walked me down to theatre. She asked me how I was feeling and I told her I was nervous but she said I would be fine. Went into the anesthetists room and got onto the chair. Had a cannula put in my arm and then was given some sedation, which when it first hits you makes you feel really light headed. The guys were really relaxed and nice, in fact I think they chatted, joked the whole time! Was then wheeled into the theatre and had the procedure done. Don’t really remember much of it, you are kind of in a trance state, although I know I talked to anesthetist and consultant throughout and didn’t really feel anything just some pushing and pulling but that was it really. Tried to scratch my nose at one point, and was quickly shouted at to not move! Also remember seeing them stitching me up, the thread and needle kept going up and down above my head! Had to spend 10 minutes in recovery afterwards, they checked my obs and then I was taken back down to my room. All in all it was a lot quicker and a lot less painless than I thought. A unique and strange experience.
Afterwards the Dr came down to see me and check that the port was ok and not too bruised or swollen. Had a look at it and it was very neat and didn’t look like it had the dressing on it, it had it was just see through like a second skin. Afterwards I was free to go.
That was the easy bit, over the next few days my arm was very painful and I couldn't really lift my arm above my head, it was very sore. Still managed to go out Friday night though for Lanny's birthday though...
My Doctor rang on Thursday with my scan results, he said my scan results were positive, the main bulk of the cancer was now negative and he was really pleased with it, but there was a small area of pet positivity in the left side of my neck. The consequences of this being that he wants to give me eight cycles of ABVD now not six which I had hoped for. He did say that 8 cycles is the standard for Hodgkin’s lymphoma.
Got off the phone and was very upset, 8 cycles felt like such a blow. So I hadn't reached the half way point yesterday after all. What with now having to have eight cycles and a port; tied to handcuffs for a while longer then!
Had to get up early Tuesday to go to my PET scan, wasn't allowed breakfast so that made getting ready all the more easy! The PET scanning unit was a relatively new department in the hospital. Had to answer a few questions before they took me through, just went over some details and they checked I was healthy enough for the PET scan. Then I was taken through to the scanning bays, had to go on my own because they don’t like you to mix with people as you are radioactive!
Had to get changed into a gown (attractive), be weighed and measured and then I was taken to a bay. Had my blood sugar levels checked and then was given the injection of radioactive stuff that was in a metal syringe! I then had to sit for an hour and a half and try to relax so the radioactive stuff could work around my body! I had to remain as still as possible in order to get a reliable reading as possible. The time actually didn’t go too slowly as I had plenty of magazines to read. When the time was up the nurse came to get me, had to empty my bladder and then it was off to the scanning room. The scanner looks really similar to a CT scanner, it is a large tube like structure with a bed coming out of it that moves in and out, it is quite spacious so I didn't feel claustrophobic. It was a bit cold so they got some blankets to wrap around me once I was lying on the scanner. Had to have my arms above my head and was told to shut my eyes because of the bright lights in the scanner. They did a CT scan first and then the PET scan. The PET scan lasted 28 minutes, at first it felt like a life time, but once I relaxed it didn’t seem to take to long and before I knew it they were lowering me out the machine, I was opening my eyes and trying to adjust to the bright lights! Some music to listen too would have made the time go faster, but you can't have everything!
Saw my consultant afterwards and he did the usual chest checks and said he was happy to proceed with chemotherapy tomorrow. He said he would ring with results of the scan when he knew. Started to feel a bit sick while I was talking to him.
The car journey home wasn't fun, started to feel very sick and had to stop several times, must have been the radiation they gave me. Spent the whole evening feeling queasy.
Chemotherapy didn't go as straight forward as usual on Wednesday, they had real trouble getting my cannula in. It took two nurses, numerous attempts and a lot of patience before it was in! They said this was a real concern as my veins weren'tlikely to put up with this much more and they wouldn't get any better if we persisted. That is when the nurse suggested I have a port fitted. As soon as she mentioned it all sorts of thoughts started running through my head, 'I don't want something permanently under my skin', 'its alien'. The nurse sat and told me more about it and also showed me another lady who had one, it was very inconspicuous but still felt wrong to me. To be honest though it is the best option, can't have another day like today, not only did it take ages to find a suitable vein, the number of attempts had made my arm sore and the chemotherapy had to be administered really really slowly cause the veins were irritated and it was painful. The first time chemotherapy has been a real struggle. Came away feeling quite dishearted as I would have to go back next week to have this port fitted, should have been more chuffed at possibly completeing the half way point.
Wednesday I spent the morning with Charlene and baby Freddie - went to the park and everything, Freddy can't fail to put a smile on your face - he is just such a dude. And then on Friday I met baby Rowan, just a few week old! He was so cute and we didn't hear a sound from him throughout the meal!
Saturday night had a BBQ with some mates - not to be repeated, had a bit of a dodgy stomach after that one and was sick the next day - nice!!! Obviously BBQ food is another food I have to avoid, along with takeaways, soft cheese, pate and sushi! Can't wait to have a take out curry and go for Chinese once this is all over!
Spoke to my Dr and he said he suspected strongly it was the BBQ food - BBQ's are the most common cause of food poisoning apparently and he advised I have lots of milk, apparently it is good for stomach bugs! Not the best preparation for my PET scan on Tuesday.
I got diagnoised with lymphoma in January 2009 after a year travelling and having the time of my life. This blog will hopefully raise awareness of lymphoma and about what life is really like living with Hodgkin's.