Tests, Biopsy's and more tests!

On 21st August I was sent for my CT scan, my first of many cannulas was put in and I don’t remember it being too bad. I had to drink some vile fluids that highlight your insides and injection they give you in the scanning room makes you feel like you are weeing yourself! Lovely! But aside from that the CT scan was fine. The picture shows a CT scanner.

Just before I was sent down for my CT scan I met the Haematology team from Burton Queens. I had been getting upset as no’ one seemed to be telling us anything but right on cue a whole host of doctors entered the room!
Dr. Ahmed, Dr. Zai Lala (who we called Dr. Zai pronounced Zi), Macmillan clinical nurse Pat Holland and a few junior doctors. Dr. Ahmed explained to me and my mum that they strongly suspected the shadow on my x-ray was ‘Lymphoma.’ They also used the word ‘Chemotherapy’ when explaining treatment but I didn’t pick up on this. I was trying to drink the CT scan fluids and struggling with it as it was so vile that I didn’t pick up on everything the doctors were telling me. The word Cancer wasn’t used to us that day but my mum realised that’s what it was because they talked about chemotherapy. However she didn’t mention it to me as she didn’t know if I had realised this yet and also she didn’t want to frighten me.

It was explained to us that I would need a bronchoscopy which is where they put a camera down your throat and into your chest to have a look at what’s going on. The initial plan was to try and get a piece of the mass to do a biopsy on to get a full diagnosis but they weren’t very hopeful they would be able to do this from this procedure. It was also done to check that there was nothing actually in my lung. I was told if they couldn’t get a biopsy from the bronchoscapy I would most likely have to have a full biopsy taken from my chest which would involve going under general anaesthetic and the surgeons opening up my chest to take a sample of the mass. This would need to be done at Glenfield Hospital in Leicester.
I was told that they would come back the next day with more information and also with Dr. Smith, another consultant. I first realised that lymphoma was a cancer because I looked it up on the internet on my mobile phone in the hospital. Stupid really because you find all sorts out on the net and half of it is a load of crap! But anyway wikipedia told me that lymphoma was a cancer of the blood. Needless to say I was shocked! But until the doctors told me anything I decided not to worry too much about it.

In the following days I had my Bronchoscapy. Probably the worst procedure I have had done while in hospital. I was talked through it beforehand and was told I would have a local anaesthetic to numb my throat while they put the camera down it and also that I would be given sedation so I wouldn’t know much about it. As my breathing was so bad lying flat was an issue so I was constantly coughing which made it more difficult for the doctors and more uncomfortable for me. If I had it done now I’m sure it probably wouldn’t be as bad though I’m in no rush to experience it ever again! Anyway they injected into my neck, twice I might add! And yes this did numb the area so I didn’t feel any pain, just more discomfort as a camera was after all being put down there! Also the doctor was talking to a load of student doctors/nurses explaining what he was doing as he was going along which to be honest I could have done without and it meant I couldn’t talk to my nurse properly! Anyway even though I was sedated I was pretty aware of what was going on! I was very glad when it was all over!! The picture is me, Rachel, Laura and Mand. Laura and Mand came to visit me in Burton Hospital when I was ill.

The upshot of the procedure was that there was nothing in my lung but the mass was pressing on my lung which meant I couldn’t breathe properly. They failed to get a sample so I had to go to Glenfield Hospital. I had the biopsy done on the Friday after the admission on the Monday. I was in Leicester from the Thursday until the Saturday and I had the surgery on the Friday morning. My doctor was Greek, very funny and reassuring and everyone there was great. They double checked in Leicester to see if there were any other lymph nodes they could get a sample from which involved me having an ultrasound scan but there was nothing. The procedure itself was fine, I was nil by mouth for a day I think which was hard! I also had to have a cannula fitted which was a bit painful but nothing major and they tried to insert a bigger one into my wrist but it hurt me too much so they did it after I was asleep! All I remember then is them giving me the mask to breathe in anaesthetic and I was gone! I woke up, high on drugs and asking if the x-ray in the corner was mine! I was also desperate for a drink but had to wait for a while, I also asked for more morphine which I was later sick from! I also threw up from the anaesthetic and I was pretty groggy for the rest of the day! I had my chest drain removed, something which was very painful, as soon as she started pulling until she finished I screamed! Loudly! My mum and sister had to leave the room!

Once back at Burton things were explained more clearly. They initially thought I had Hodgkin’s lymphoma because of my age but it turned out once they got the biopsy results back it was non Hodgkin’s. This changed things somewhat, I was told it was still 90% chance of a cure and it was likely I would respond to RCHOP chemotherapy. However I would definitely lose my hair and my fertility could be affected. I had already had some fertility nurses come and discuss the option of freezing my eggs but after seeing what it involved I decided not to. The chances of success were slim and it would delay my treatment by 3 weeks or so. After speaking to Dr. Smith he advised that really we couldn’t delay treatment and also that RCHOP, although it could affect fertility, it wasn’t always the case and many people went on to have children. It wasn’t an easy decision but I couldn’t risk delaying treatment and it would be different if I had been in a long term relationship but I wasn’t and there are other options should I lose my ability to have children.

So now we were waiting for a full diagnosis, I was back in Burton, basically on oxygen most of the time and also nebulisers which help clear your airways. I was also put on steriods to help clea my symptoms. I was still sleeping propped up but I had a cool bed that was remote controlled!

I had several vistors from friends, both from uni and home, which I really appreciated and made things so much easier, I also had lots of support on facebook and texts from my friends, my dad made endless phone calls to people to keep them updated as i was too weak to do that. My mum, dad and sister visited everyday, all day and thats something I really appreciated as I would have gone crazy if I had of been on my own!!

So now we were waiting....