My Trev and his Burkitt Lyphoma

1

2009-12-23T14:24:03Z

17 sleeps

2009-12-19T19:54:44Z

thats how long i have to go till i get down to the hospital to see trev.

cant come quick enough.

thankfully hes been able to find the energy to call me most days and he texts me still everyday but im sure everyone here knows how important it is to have touch and to feel the closeness of people you love.

Hes been on a chemo drip for the past 24 hours. it made him very ill last night and he got some sort of infection. he told me earlier he will be getting blood tonight. i guess that will be his platelets going low again?

i wish i knew more. information is so important! ive been on probably all the main cancer info sites to find out what i can....but its never really what i need to hear! i need to know how trev is doing from the nurses etc but they dont really tell you much over the phone.

Ive got his consultents number, think i might call her. dont want to bother her...i know how busy these people are. i just feel somewhat disconnected right now...

waiting for the hospital to phone

2009-12-09T13:44:08Z

Im here in the kitchen staring at this screen. harassing google with all the new words which have cropped up today.

After calling the hospital as my lovely man was too ill to talk yesterday and i havent recieved any texts from him today i was told his tumours are breaking down too fast. apparently theres problems. apparently the nurse couldnt tell me via the phone call i had made. so here i am waiting for them to call me back so they can confirm i am indeed Trevs partner and not some loon pretending.

im so scared.

my heart is beeping all over the place and my poor kids want mums attention and ive had to ask them to leave me be.

10 mins and still no call.

Ive found tumour lysis syndrome. which im assuming (read...jumping to conclusions) that it must be. some sites say its normal for burkitts lymphoma to end up with lysis.

i just wish theyd phone. i have to collect a friends child from school in about 20 mins, i so want to know whats happening before i leave the phones here.

so want to go to trevs room and hold his hand.

this is too scary. wish they would just hurry up and phone.

im very far from my man

2009-12-06T09:33:29Z

I couldnt feel further away. Had to return home to scotland after spending 2 weeks with him at his home and in hospital.

Trev has been feeling poorly for about 6 weeks. Flu type aches and shivers and a raging sore belly. Docs told him he had a torn muscle and then changed it to having indigestion.

The last doc he saw could see how ill he was and sent him straight to hospital for an endoscopy. That showed up abnormal lumps in his belly. Straight for a cat scan the next day which showed up lesions on his liver.

He was diagnosed with cancer a few days after that and then we were told just about a week ago that it was a lymphoma. It took some time for the type of lymphoma to be diagnosed but we know now he has Burkitts. Its also now likely to have spread to his bones. A marrow sample was taken the other day to confirm this but the docs say its very likely.

Hes had a really terrible hospital experience throughout all of this. He was treated very unfairly in the first unit he was in down to him having a colourful past (which was put behind him 7 years ago, but he still got judged for it) but now things are better in that sense and the staff seem to be treating him well.

The day i had to fly he was told he was being moved to another hospital nearby, I couldnt go with him so had to say my farewell as he was strapped to the hospital gurney and about to be blue lighted to the new hospital.

I felt like i was letting him down so badly. Id been staying in his hospital room with him for the previous 2 nights. Just doing the little care tasks made things so much easier for him. hes a very private man and so much of that has had to be thrown out the window.

I spoke with him this morning as he goes into day 2 of treatment. he sounded far more positive but in obvious pain. If i could take the pain from him then id do it a hundred times over.

Im not sure when im going to be able to get down to see him next. I was hoping to be able to go next week mebbe but to be honest i have 3 kids here and im trying to sort out my work rota and all the other wee things that crop up. All i want to do is be with him. I feel my heart weighs about 5 times what it should.

To Trev.... I love you very much. You are part of me and Im so scared of losing you. so scared when i see you in pain, and so mixed up between being hopeful for the future and then being told to be realistic and accept it might not work out that way. All i do know for sure is how much i love you and how much i need you. xxx