Wow...so I feel pretty drained this week. Dad has started on his erlotinib (tarceva)...him and mum went away last weekend just shortly after he had started taking them. It sounded like they had a lovely weekend away...everytime I spoke to Dad he sounded relaxed and happy. And so did mum...I think the break has done her the world of good too. Dad's appetite hasn't been great but when they were away he had a fry up every morning (his favourite so long as the bacon is burnt to a crisp!) and it was a carvery in the evenings so he was more than happy (he can eat a roast dinner even when he has no appetite!). I missed them both...it was the first time me and Marc (my hubby) have had to ourselves since last year. I don't mean that in a bad way...not in the slightest. We see Dad every day and if and when we are out I am always worrying and wanting to get to see him. But I knew he was having the most relaxing, lovely time so I felt more relaxed for the first time since this all began. Funnily enough me and Marc ended up having a really really lazy weekend & fell asleep on the sofa for 2 hours on the sunday...I think winding down actually made us realise how tired we are.
When Dad got home he was SO happy to see his boys (the two dogs!). We had been looking after them all weekend and been sending him picture messages of them snuggled up with us which made him laugh...they are such funny characters! I had dad in stitches on the phone one day when they were away saying how Ollie (one of the dogs) had fallen asleep in the bed with us with his bottom right near my face and he kept blowing off...the smell was AWFUL! Dad couldn't stop laughing when I told him!!!
On the monday that they got back Dad's face was REALLY red. We thought it could just be where he had caught the sun but when I kissed him goodbye he felt really hot. The next day I went in to see him after work and I didn't notice anything until he said "Look Sar..my face has come up a bit"..."don't worry though...it's just the tablets" he said...he ALWAYS makes sure I'm not worried...he'll tell me something then back it up with "don't worry though...I'll tell you what that is...all it is...". Bless him. His face was covered in spots...like acne. It upset me...I went out into the kitchen and pulled myself together...I didn't want Dad to think that I thought his face was THAT bad. It wasn't in all fairness...it just upset me that he is having to go through all this. His foot had also swollen up...his left foot/ankle. That night I really did sob to Marc...I just hate seeing Dad in pain/discomfort. And the thought that it's going to get worse just breaks my heart.
I told Dad he needed to ring the emergency number but Dad is one who never likes to complain, make a fuss etc. He doesn't want to use that number unless it's an absolute emergency. He said he would call the hospital on Wednesday morning which he did and they told him to book an appointment with the GP for his foot/ankle and also get a prescription for some steroid cream for his face. I was FUMING....of course Dad rang the doctors and there was a week wait for an appointment...I knew from my research that it COULD be a blood clot or swelling caused by his liver...the whole not knowing is AWFUL...Thankfully my mum rang the doctors and demanded that the doctor call my dad which he did and they sent him to A&E about his foot.
I was SO worried that day...I was at work and couldn't get home (I work in London and we live in Kent...) and he was going to A&E at 6pm. They then sent him for a scan on Thursday morning and thankfully it wasn't a blood clot but they don't really know what has caused the swelling...it could just be the chemo going through his body....dehydration making him retain fluid...I don't know. I have been forcing him to drink lots of water as he only really drinks tea and coffee! He proudly told me today how all morning he has only been drinking squash and fizzy lemon & lime water...bless him.
Today is the most upbeat I have heard Dad (not seen him yet...going to see him tonight!)...we were chatting on my lunchbreak and he was saying how amazing mum is being and how he thinks their weekend away did them good. Then he was saying how he had some of the chocolate I brought in for him last night and it's the first bit of chocolate he's had in a while and it was lovely....so he thinks his appetite may be slowly making a return. His skin is more flakey now than spotty which is good...he said it looks better than yesterday. The nurse also said yesterday that his skin won't stay like that throughout the treatment which was a relief as I think it's pretty itchy and uncomfortable.
Dad text me on Wednesday saying he was a bit fed up..I think lately this has all started to get to him a bit more...he said he felt like he was an incovenience to everyone...e.g. my brother had to take him to the hospital for his scan yesterday. I told him to not be so silly...we are all there for him and he is never ever an inconvenience to anyone...we are all more than happy to help and will do anything for him. We took him in an early father's day present too that night...the Status Quo album...he was sooo chuffed. It's the little things...but they really seem to perk him up :)
He just sounds so much more upbeat today. He did say that one side effect of the tablets can be depression...and he said he has felt a bit down this week. Of course he's still been laughing and joking around...even making a joke of his skin saying how he was going to wait until the spots got into one really big spot (they won't!) and then he was gonna squeeze it...haha yukkk!!! Then he said today "Marc likes really hot curries doesn't he....I'm going to smear loads of that on my ankle on sunday...that will clear the bastard up!". I asked him the other day how his "toilet" was looking...because I was worried his liver may be playing up (i really do worry with every single twinge) and he looked all serious and said "well....." and paused..."my appetite hasn't been all that good lately...so I haven't tasted TOO much of it"! I cracked up!!! His humour through all of this just amazes me. He's not stopped being my funny, dry sense of humour dad :)
It's fathers day Sunday and me, Marc and one of my other brothers are taking him for a curry. I cannot wait for that. That's one of my favourite things to do with dad...go for a curry. Sounds simple and nothing big but we love getting all the popadoms and dips etc. and I'm hoping Dad will eat a good size meal!
There have been a few family rows the last couple of weeks and I have found that hard to deal with so at times I've felt so drained and down about everything. At times it is really really hard to feel positive and upbeat...of course I am in front of dad but at times I just feel completely drained and panicky. I've had a few panic attacks during the evening and not slept great at times but nothing that I am too worried about at the moment. I have also realised who I have there for me & who I really don't. Some friends/family have been beyond amazing...others not so much & that is something I won't forgive easily...I expected it from some friends if I am honest and I think it does take something like this to make you realise who is there and who really isn't. In a few weeks me & 17 girls (friends and family) are doing race for life for Dad...those people and our other friends/family that have been there and not put any pressure on me (e.g. if i haven't wanted to go out or do something) are the ones who count.
I was talking to my manager today about it all...she lost her dad 5 years ago to exactly the same as what my dad has. She said how she was just very very grateful that she got to have 2 very good years with her dad (from diagnosis) and she spent so much quality time with him and did so much with him. This is how I need to be...grateful that Dad is still here and I am spending so much time with him...laughing, chatting, smiling, reminiscing. I really do treasure every second and feel the strongest bond with him ever. I have this time with him...no matter how long it is...to be with him and to make sure I am the best daughter to him that I can be.
Sometimes I get so upset...I beat myself up about not spending enough time with him when I was growing up...moaning at him for chomping on his food, sniffing etc. (I am VERY funny with noises...I do it with everyone!)...and generally moaning about silly things and causing him stress when I was growing up. But as Marc says...that was just me growing up...like any normal kid does. And EVERYONE moans about stuff that isn't even important...that is life.
He is right I know...and I know Dad is proud of me and I have this chance now to do everything I ever possibly can do for him. This year I have got married & passed my driving test....Dad got to see both and it made him so proud!!! Next on the list is to get insured on Marc's car and take Dad out for a spin :) Then it is buying our first house...Dad will be over the moon when we do that as we have been saving hard for years!
It's been a rough couple of weeks but positive and strong head on now. My mission this week is to keep Dad like he is today...positive, upbeat and strong! xxxx
