7th February - CT results

I didn't sleep at all last night I was still up at five am pacing the floor and dreading my results. Eventually I crawled into bed at six, I must have fallen asleep as Lee woke me up around eight appointments at ten forty but need to get there early as I don't have a pre-assessment appointment for my bloods and as I'm provisionally booked in for my chemo on Wednesday I'm gonna need them doing.


We checked in and sat and waited. We'd been waiting around an hour when I saw Louise my named nurse on clinic. I went up and showed her the wedding pics on my phone. "I'll bring the album next week" I told her.
"That would be lovely. Are you for this clinic?"
"Yes I'm under McEvoy now, I'm here for my CT results so keep your fingers crossed for me."
"Who are you seeing?"
"Dr Jagdev"
"Oh, she's not here today its Dr Trigolli or Dr Ralph" 
"Well I'd rather not see him he's a prick"  Louise held her finger up to her lips and pointed to the room at the side of her with the door open where Dr Trigolli was sitting with two patients... oops.
"I'll make sure your in with Dr Ralph" she told me and I mouthed an apology and smiled and headed back to my seat.  I grinned at Lee, "Oops I've just put my foot in it"
"Why what have you done".
"Well Dr Jagdev's not here Louise told me its either Dr Trigolli or Dr Ralph. I told her I'm not seeing Dr Trigolli because he's a prick and who should be sat in the room next to where we were talking with the door open ... but Dr Trigolli, with two patients... oops".
"Dr Trigolli? Do I know him?"
"He's the one that gave me the last lot of CT results and said it didn't matter if it was one tumour or four the outcome was still going to be the same... the one you nearly thumped".
"Oh yes I remember so we're not seeing him then?"
"Nope cos I told her he's a prick" I smiled and Lee smiled back. "Bit of a bugger that he heard me... ah well at least he knows what I think now. I think we'll be waiting longer to see Dr Ralph but she's the one we saw last time". I explained to Lee.
"Oh well she's worth waiting for she was good last time" Lee agreed and we settled down to wait.  It was another hour before we were finally called through by Dr Ralph herself.
"Loraine McEvoy?" she called and then smiled when she saw me.
"Then name confused me" she smiled. "How are you both?"
"Great thanks" we replied.
"And the wedding did it go okay?"
"Yes it went well".
"I've a medical student in with me today, do you mind if he sits in?"
"No that's fine". Dr Ralph showed us into a room and asked us to take a seat.
"And, how have you been feeling since treatment stopped?"
"Fantastic" I smiled. "Really good, hence I'm dreading starting the treatment again".
"Well your CT scan results are back" I grabbed Lee's hand and squeezed it. "The results are good" she told us. "I'll pull up the notes then I can tell you what they've said..." There was a pause as she got all the information in front of her. "The tumour on the left of your pelvis has shown slight shrinkage, however nothing major in size. The most change is with the second tumour it hasn't shrunk but there's a change in the appearance of your tumour and it looks dead in the middle".
"Really?"  Lee was beaming and I just felt...well... a bit numb really I don't think it had sunk in what she was saying.
"So what happens now?"
"Well, I think we should change your chemotherapy from Cisplatin to Carboplatin as we discussed last time you need quality of life and I think we are all in agreement that on the Cisplatin you really haven't got any. It should be less toxic for you and I think you will tolerate it a lot better. What I suggest is that we do another three cycles of chemotherapy over nine weeks and then repeat another ct scan.  How do you feel about that?"
"If that's what you think is best then yes okay".
"So when would she start?" Lee asked.
"Well we've provisionally booked you in for tomorrow Loraine, is that okay with you or would you like a week off to get to grips with it?"  I looked at Lee it was his birthday tomorrow.
"Is that okay with you?"  He nodded.
"Okay lets start tomorrow then. But I'll need my bloods doing first I'm not booked in for pre-assessment".
"Yes we're aware of that the nurse has arranged for you to go down to the oncology day case unit they will do your bloods there".
"OK and when do I come back to clinic?"
"I think you should go for your first cycle. We'll see how you are with the side effects and then we can discuss them back here in clinic in say, three weeks?"
"Okay".
"Now about the anti-sickness medication.." Dr Ralph began.
"I really don't want the syringe driver" I interrupted.  "You have said the sickness shouldn't be as bad so can we try Cyclizine tablets again and see how I go?"
"The syringe driver did work though, didn't it?"
PICC line in my left arm, the syringe driver in my right arm with a box attached to it.  Without being crude when I go to the loo because I stand up and have to undo my bag it takes two hands, the syringe driver box doesn't quite reach the floor so I need another hand to hold it when I'm going to the toilet. Its awkward if you know what I mean? And as much as I love Lee its not normal for him to have to accompany me to the toilet. I just want a bit of normality and peeing on my own well that would be normal".
"Okay. Fair enough we will try you on the oral cyclizine without the syringe driver but if it doesn't work I'll make sure the team are aware to put you back on the syringe driver, okay?"
"Okay thanks".
"So have you got any questions?"
"Yes the carboplatin does it take less time than the Cisplatin?"
"Yes it should do because you don't need as many fluids pushing through with it being less toxic".
"And you Lee, any questions?"
"No thanks".
"Right we'll see you in three weeks then".  We both said goodbye to Louise in clinic and headed to reception to make an appointment.  "I've to make an appointment for three weeks" I told Andrea the receptionist.
"Its suspended at the moment Loraine we'll have to send you it in the post".
"Dr Ralph said to overbook if necessary but not to leave without an appointment" I added.
"Okay nine forty okay for you?"
"Yep that's fine".
"Where to now?"
"Oncology for bloods we've to ask for sister Fiona".


"Fiona's a little busy you'll have to take a seat" We were told when we got to reception. 
"God I hope we're not waiting forever Lee last thing I want is to be stuck in here all day especially if we'll be here all day tomorrow".
"Be patient" Lee smiled.
"I'm sorry we're gonna be here for your birthday".
"Don't be its fine. I knew it would probably happen".
About fifteen minutes later Fiona called us through.
"Hi Loraine, do you want to come through"
"Thanks"
"You confused us with the new surname" she smiled. "Did the wedding go well?"
"Yes it was brilliant thanks".
"So they forgot to book you in for pre-assessment then?"
"Yes".
"Right well if you'd like to take a seat lets get you sorted out". I sat down and that's when the fun began once again my blood did not want to flow. "Do you always have this problem?"
"Yep, it happens regularly" I told Fiona. "I think its just in an awkward position that's all it does bleed back eventually it just takes time".
"Its very resistant Loraine"
"It always is".
"I think I'm going to have to find a vein Loraine because this isn't working. Then we'll have to send you for a chest x-ray"
"Again?"
"When was the last time you had one?"
"When I had the last lot of chemotherapy in December" I replied.
"Oh so its been a while then?"
"Well yes it has, but its in the right place Fiona, this happens regularly its just temperamental that's all there's never anything wrong with the line. Its been like this since day one".
"Well I think we should send you for a chest x-ray anyway and just look again. Right sharp scratch and there we are, I got your blood".
"Good. I need to go to the loo" I told her. "Sorry but I think my bags leaking, I could feel my top getting wet".
"Okay you go" she stood up and let me run to the loo. I had no spare stoma bags with me... idiot that i was I kept saying I wouldn't do this anymore but I always do.  I stuck my bag back down as best as I could and cleaned myself up. It was lifting at the top.  "You okay?" she asked as I came out of the bathroom, that was all it took for the tears to start to flow.  "Oh Loraine don't cry".
"I'm sorry its just been one of those days" I explained. "I don't have any spare bags, I can't go for x-ray because it will just continue to leak until I change it."
"Hey its okay we an do the x-ray tomorrow".
"I'm just so frustrated my line never bleeds back its only done it once. The whole point of having the line in was so I didn't have to go through this all the time. I'm having to constantly go to chest x-ray to check its in position and it always is. But nothings ever resolved."
"Okay, I understand. Listen I'll give you the card, go for x-ray tomorrow before you come for your treatment at nine thirty and we'll take it from there okay?"
"Okay" I dried my eyes and we left. I felt stupid I think I was just overtired along with everything else. I should be so happy right now the results are good but I just feel a bit numb.
"Come here" Lee gave me a hug. "You okay?"
"Yes just tired and well, I wanted more I guess".
"Its good news Loraine".
"I know I just wanted more".
"Come on lets get out of here" Lee grabbed my arm and we headed for the car park. "Are you okay?"
"I can't explain how I'm feeling. I haven't been expecting this to go away I'm resigned to the fact that I am going to die. I went today expecting her to say there had been no change I wasn't prepared for more chemotherapy. Its not I'm saying I was going to give up on the treatment and walk away I'm not. I just I wanted to hear the words its over no more treatment. I want to enjoy the time I have left with you Lee I don't want it to be full of hospital appointments and never ending sickness."
"Lets just take things one step at a time see how you go on this treatment like Dr Ralph says then go back for a review of your treatment in three weeks like we said. If its not working we try something else".
"Okay".
"Are your mum and dad in?"
"Should be I told mum I'd come straight there as soon as we'd done to tell them know about the results so they said they'd wait in. I have to be careful about how I tell them though Lee"
"What do you mean?"
"Well I don't think they've really come to the terms with the fact that my illness is terminal yet and if I give them the slightest bit of hope they're going to get carried away and then when the worse happens they won't be prepared".
"Oh Loraine, come here" Lee pulled me into his arms. "Listen, you can't go around protecting everyone all the time. When the time comes and you die your mum and dad will be upset and there is nothing you can do to stop that from happening".
"I know, I just want to make it easier for them that's all. This cancer thing is so damn hard".
"Come on lets get to your mum and dads and explain everything".
"Okay".


We got to my mum and dads about thirty minutes later but the car wasn't in the drive.
"Maybe dads gone out" I said as we pulled up outside the house. We both got out and went to the door I tried the handle and rang the bell but no they weren't in. I stomped back to the car and got in and Lee followed me.
"You okay?"
"No, no I'm not. I'm upset I thought my results were at the forefront of every ones minds at the minute. God maybe I'm being selfish I haven't slept in days worried about what the outcome would be. They said they would be here waiting for me to tell them the news and they're not here".
"Listen they probably just got delayed somewhere try your mums mobile", so I did but her mobile was switched off.
"Lets just go home" I sighed and got in the car and Lee took me home.  When I got in there was a message from Lorna asking how it had gone so I rang her.
"Hi sis"
"Hi,"
"I've been to mum and dads, they're not in".
"Oh".
"I'm a bit upset I thought they were as eager to get my results as I was", I babbled.
"Well I know they went to Morrisons this morning but mum said they were going back home to wait for you to call in."
"Well they're not there I wanted to tell them first that's why I'm a bit well miffed I guess. Anyway results are there's some slight shrinkage to one tumour and although the other tumour hasn't shrunk it has changed in appearance and the middle of it appears to be dead. So tomorrow I start chemotherapy again for nine weeks and then they will do a follow up scan. I'm moving from the Cisplatin Chemotherapy to the Carboplatin. Its less toxic so I don't need as much fluids which means it takes less time and I shouldn't be as sick this time round. I'm not having the syringe driver this time I've asked to be put back on the oral tablets I'd rather put up with the sickness than go through that again".
"Well it all sounds positive Loraine. How do you feel?"
"I'm nervous about starting chemo again tomorrow and I just wish the results had given me something more significant, does that make sense?"
"Yes it makes sense. But for now, you'll just have to work with what you've got. I don't understand where mum and dad are though".
"No me neither, never mind eh. I just, well I just thought they would have understood the importance of today that's all".
"I'm sure they did sis".
"Well I'm not going back out again so I'll text mum tell them to come down here when they get back. Right I'm going to go talk to you later".
"Okay bye sis".
"Bye". I turned to Lee. "Lorna thought they were waiting in as well has no idea where they are".
"I'm sure they'll turn up".
"I know"
"Fancy a cuppa?"
"Yes coffee please" I replied and sat down.  I tried mums phone again but still no answer so I plonked myself down on the settee.  Another twenty minutes had gone by when I got a text from mum saying coming down now. What was that supposed to mean?  I was still frustrated and a bit miffed when I picked up the phone to ring.
"Hi its me"
"Where are you?"
"At home. I thought you were waiting in for me to give you the results?" 
"I didn't think you'd be home until later"
"Mum I told you my appointment was at ten this morning I said I'd be a while but I would call straight in on the way back from the hospital. You said you had no plans and you would both be in waiting for me to get back. My appointment was at ten its just after two how much later did you think I would be? I only went for the results".
"Sorry love how did it go?"
"I didn't want to tell you over the phone mum that was the whole point of me calling in to tell you".
"Well why don't you call down?"
"I've already been down mum. I'm not coming back out". I was being stubborn I suppose but I was still really miffed that they hadn't waited in. 
"Well we will call up to you then, shall we?"
"Okay I'll put the kettle on".


"Hi, I'm sorry love" my mum said hugging me as soon as she walked in.
"Me too, I don't think you realised what a big deal this was for me. I just expected you both to be there waiting anxiously for the results and when you weren't well, I was a bit miffed. I thought this meant something to you".
"It does love of course it does".
"Then where were you?"
"We just nipped up town. We weren't gone long. I'm sorry love,"
"Its okay I'm sorry too I'm just overtired I think I haven't slept for days. Sit down I'll explain about the results...." 
"That's good then" my dad said after I'd explained what the doctors said. "The treatments obviously working for you".
"Initial results are good dad yes. But like I said it doesn't mean its gone its a good start that's all". Lee put his arm round me and I smiled.
"I'm gutted we have to start treatment on Lee's birthday though I wanted us to do something together tomorrow and now we'll be stuck at the hospital instead and who knows how I'll feel after".
"Well you could go out tonight instead couldn't you. Why don't you go for a carvery at the Cock and Crown Lee would like it there".
"We've got Logan though"
"Take him with you and Jenna she's going to be home early tonight isn't she you could all go have a little celebration for your results and Lee's birthday".
"Yes I suppose we could. I just well I'm tired".
"Well why don't you go for a lie down until later then when Jenna gets home later you can go".
"Yes I suppose we could"
"If you don't want to its fine" Lee said but I could see the disappointment on his face.
"You know what, lets do it lets go we can have a nice meal... I need cheering up".
"Okay".
"Right we're going to go" my dad said getting up.
"Okay see you later".
"Bye".   


We went to the Cock and Crown with the kids later that evening and had a lovely meal.  In fact we were just ordering dessert when my mobile rang it was an unknown number but I picked it up anyway.
"Loraine its Kyle"
"Kyle?"
"Yea I just wanted to know how you got on the day" (I should explain at this point Kyle has a strong Scottish accent so I'm trying to write this as you would hear it). I had received a text from him earlier that day and I'd meant to text him but I'd forgotten.
"Its so nice to hear from you I was going to text you back I just haven't got round to it sorry".
"Well I just thought I'd ring and see how you got on?"
"Well the results are okay they show that there is some shrinkage around one tumour and the other has changed in appearance and they think it looks like its dying off."
"So what happens now like?"
"Well I'll start chemo tomorrow for another nine weeks then they'll repeat the CT scan after that and see what the results are".
"That's good then. I'm thinking about coming down and seeing yous when I get a car sorted like".
"That'd be nice Kyle and I know Lee is looking forward to meeting you".
"Right well I'll let you go then and I'll catch you later".
"Okay thanks for ringing and let your mum know the news for me"
"Aye I will".
"Bye kyle".
"Bye".
I smiled around the table at Lee and the kids. "You okay?"
"Yes I'm fine a bit shocked to be honest. Kyle text me earlier along with everyone else I meant to text him back but I hadn't got round to it. Its nice he wants to know how I am, isn't it?"
"Yes really nice".
"He wants to come down and visit when he gets a car sorted. That's okay isn't it?"
"What you asking me for?"
"Well I wouldn't want you to feel uncomfortable with him being Dave's son" I explained.
"Don't be daft its not his fault his dads a what do you call him again, a dick?"
"Yeah that's it and no its not, he's a nice lad".  We finished our meal and headed for home after having dessert. Logan gave Lee his present when we got in a Leeds united sign (which is not going up in the house I might add) and a frosted pint glass with LUFC on the side he was over the moon.
"Thanks Logan they're really nice mate".
"Glad you like them". It was a lovely ending to an informative day it looks like things could be on the up.