after getting over the initial shock of the diagnosis in march. things started to happen pretty fast. appts here and there etc, i started to do more research on my disease and realised that "lymphoma" is not just of one type of disease it has 30 different types!.

agressive types or indolent types or intermediate types, so of course you have the wait to be told what type you have, so along came the blood tests and then the small biopsy operation to take a sample of the mass to determined the type.

the biopsy took place in april and it semed an eternity waiting to get the results back from the lab which was approx 3 weeks i think!!, then came the phonecall from my oncologist to come in and discuss the results with her. i was told i have an agressive type of lymphoma and would need to be treated agressively with a type of chemo called 'r-chop' and this would have to start soon. and i would have to do another few tests. firstly a bone marrow biopsy test. and then to another hospital for a pet scan, this was all new to me these tests id never heard of these things before, so in the beginning after the diagnosis it is very overwhelming what you have to go through to get the correct stage and type of lymphoma yoiu have,

i asked my oncologist for a bit of timeout to come to terms with this new chapter of my life. so i went with my partner for a weeks holiday to the isle of man,

all i thought about when i was there was how much time left do i have or will i fight and defeat this horrible disease, after  a few days i got a call while i was on holiday from the oncology nurse asking me to phone the hospital immediately as they have more news!,

i thought "oh no" there cant be more bad news can there? why would they phone me so urgently whilst im on holiday which they knew about, it must be urgent i thought otherwise they would of waited to contact me when i returned back from holiday?

so out of so much curiosity i phoned the nurse to say what was wrong and that do i need to come back straight away, and she just calmly replied " no you enjoy your holiday and we see you when you return. i asked her " cant she tell me what it concerns?" so i can have an idea at least to enjoy the rest of my break without wondering all the time! and she said " she couldnt discuss it over the phone it would have to wait til i got back from holiday"

i tried to enjoy the rest of my break but of course i couldnt and was just anxious to get back home now.

soon after i got home i went to my oncologist to for the news. i was asked " how was i feeling?" i said i was fine which i was really i was asymptomatic and felt quite healthy compared to last year with the weekly episodes of vomitting and stomach pain.so then came the news from the oncologist. they had got the diagnosis wrong and although i have a small bowel lymphoma it is not an agressive type at all. it is a very indolent type called 'small lymphocytic lymphoma; otherwise known as sll/cll, it is very similar to cll, except cll is in the bone marrow and blood whereas sll is in the lymphatic system mainly.anyway after hearing that news i didnt know whether to feel relieved or worse, i suppose i felt more relieved as it wasnt an agressive type and i was told it was less than 5% growth rate of cancer cells. however it isnt curable! whereas the agressive types of lymphoma can be cured most of the time. so mixed feelings really i suppose,

 was told i could wait for tratment until september as i had planned to get married from last year this september which was only 4 months away. on that same day i had a bone marrow test which wasnt a nice experience at all! after that i was told to make an appt with another hospital for a pet scan to see if i had lymphoma anywhere else,

along came the appointment a week later to have the pet scan. then a week later my oncologist called me in for the results of both the pet scan and bone marrow biopsy, i was pleased to hear it wasnt in my bone marrow and it wasnt anywhere else, just localised in my small bowel, so that was something i suppose at least to be less worried about,

i wasa refered to another hospital in london for a second opinion for treatment and whether it was ok to delay it for another 4 months. i suppose i felt more confident in going to this hospital as they were the hospital who over ruled my initial agressive type of lymphoma from the first hospital i went to. and gave me the correct diagnosis of sll/cll, so i expect they would know what treatment to give for it, after a few weeks i went to the hospital in london and the oncologist asked if i still wasn't having symtoms?  to which i replied "no"

he then said " that he saw no reason to start treatment immediately and that it could wait til september and the treatment plan would be fcr chemo for 6 months followed by  maintenance rituxan which would be done once every 6 months for 2 years after the chemo,

so that was that i now had a summer break from june til september until going to any hospitals or tests to which i felt quite relieved to get back to a little bit of normality even if it was for just a few months. it gave me my breath back  because as i said its quite overwhelming flying around all the different depts/and hospitals getting the staging tests done. these next few months will give me time to come to terms with all whats happened sonce march this year. and give me time to do research on how i can help myself with this ugly disease,

as time went on and i got closer to september i started to get the weekly attacks of nausea and abdominal pain again, and i had opted to have my treatment done at another hospital who had specialists in lymphoma and namely my type sll, this hospital in cambridge was recommended by a few people to me, and i had heard that addenbrookes hospital was one of the top hospitals in the uk,

so i asked my local hospital to refer me to there.

i soon got my appointment and saw the specialist who had seen all my results of scans etc and we discussed treatments etc.and he immediately started me on steriods to start shrinking the mass i was told. i was taking prednisone 35mg per day and allopurinol 300mg per day and laransapole 30mg per day, i was also told by my doctor that as my lymphoma was just localised there was radiation to consider in this case rather than going the chemo route straight away!! i had been to 3 different hospitals beforehand and they all said i must have fcr chemo,

so this was new to me and i was quite fond of the idea of going the radiotherapy route first as it would be done on a low intensity basis. and hopefully that would be far less disruptive to my life right now than having all the side effects of chemo surely?

so i agreed with the doctor that i want to go the radiotherapy route and delay the chemo til i really need it one day. just to be sure as it was approx 4 months back since i had scans the doctor suggested another mri of the neck down to the waist. as things could of changed! so an appt for scans was made for a fortnights time. in the meantime i started the steroid medication. the first week soon after taking the pills in the morning. i got stomach cramps and felt very tired which was unusual i was told by the nurse,

my appetite grew so much too i was eating like a pig! but i needed to put on a bit of weight as i was underweight anyway. after the first week i got use to the medication i was eating well and had so much more energy! i really felt well the best ive felt in a long time. i took things for granted and went out for a chinese meal and ate alot of different spicy foods that friday eve,

oh dear! the next day i was sick and had stomach pain. i was taught a lesson i might feel better but i still have to watch what i eat as it will irritate my intestines again until i make a full recovery hopefully i have to still be sensible with my diet,

lesson learned ok, it came around to my next appt at the hospital for scans in the morning and seeing the oncologist in the afternoon, ( a whole day at the hospital) waiting from the scans in the morning to the results in the afternoon was a very anxious time. so then came the afternoon appt with the oncologist who told me  " that nothing had changed the lymphoma had not grown or spread anywhere else and radiotherapy could still now be an option as it was still localised lymphoma, i guess i was relieved the scans showed no change, the doctor would see me again in a fortnight being now 17th oct 2011 and in the meantime i can reduse my prednisone dose down to 25mg per day week one then 15mg per day week two which im at now,

After episodes of weekly vomiting and abdominal pain on and off for the last 2 years. I underwent a gastroposcy in may 2010 and was told I had the "h pylori" infection. And that was the reason for my symptoms! So after taking a triple therapy of antibiotics in June 2010. The symptoms disappeared,
Great life back to normal. Until sep 2010 that was and the symptoms were back again! So again back to the doctors and he suggested that my partner be tested for "h pylori" as there is a chance she may have it and could of re-infected me.
My partner's test was positive for h pylori,
So we both took the triple therapy of antibiotics together, and hopefully that would be an end to it once for all, it worked for a few months. Until I got the symptoms back again. So in march 2011 my doctor sent me for a barium meal scan. And there was evidence of a blockage in my small intestine!
The doctor said after reviewing the X-rays
" you have typical crohns disease" will probably need a bowel resection operation, ok I thought so not "h pylori" then causing the problems,
But to be sure the doctors wanted me to do an MRI scan. So I did an MRI scan 2 weeks later and 2 days later my consultant called me on the phone while I was work,
"you need to come in to see me straight away" he said! I knew at that point it wasn't crohns disease it had to be something mote than that!
So I took myself off calmly to the doctor and sat down shaking al
Almost, and he calmy looked at me and said
" you have a disease that affects the immune system" I thought straightaway "aids" and then the words come out if his mouth " you have non- hodgkins lymphoma of the small bowel" oh I said as I'd never heard of it! I thought it was some kind of inflammatory disease similar to crohns! So I left the doctors and went home and casually turned on my laptop to do some research on my newly diagnosed health problem.
There the shock hit me!
'LYMPHOMA' a cancer of the lymphatic system. My god I have cancer! I quickly turned the laptop off in shock and disbelief!