The waiting game begins again...

15 minute read time.

My Dad has now finished his 4 chemo sessions...so now is the waiting game
again. We find out a week on Thursday (May 16th) whether Dad can have more
treatment (maintenance chemo) or whether we just "wait for it to take its
natural course...". To say I'm scared is an understatement. I am trying to stay
positive but I know that Dad most probably will have to have a scan before they
can do anything....What if it has spread? What if the tumour in his liver has
shrunk (they said halfway through chemo that his blood test results suggest it
has) but the lung one hasn't? I just feel petrified. Dad is SO positive too...I
continue to be utterly amazed by his attitude but I know he is scared about the
16th too...

 

So much has happened since I last blogged. I've been meaning to write for
ages but at times I just struggle to get any words out. I still need to write a
blog post on my wedding and once I am in the right place I will do
that...Anytime I mention the wedding to my dad he says how it was "bloody
brilliant....perfect"....That moment of him giving me away was one of the best
of his life & I am SO glad he was able to do that...he loved that day more
than anything...

 

I was really ill a few weeks ago (just before Dad had his last lot of
chemo)...that was horrific as I couldn't go near him for a good few days and I
literally see him every day. It was around the time when his blood count was low
too so he had no energy & when I spoke to him he sounded a bit down...that
was so hard as there was nothing I could do. Normally me and my husband Marc go
in and see him every day and in my mums words we "lift him"...not being able to
do that was awful. I was an emotional wreck and on the Sunday night I text my
brothers and sister to let them know dad was a bit down and asked them if they
could pop in and see him/make sure they call him...I just felt so helpless.
Thankfully a few of them did make sure they called him/went in to see him which
cheered him up a bit. And luckily I was back on form to go to dad's last lot of
chemo with him on the Wednesday...

 

Dad's last lot of chemo went fine...there was over an hour and a half wait as
they were running late but dad being dad never complained once. We had gone out
for a fry up at his favourite place, the Tuck Inn, in the morning which really
set him up for the day & he loved that! He ordered his usual of well done
bacon, toast, loads of mushrooms and egg. He loved it! :)

 

Chemo was harder this time in a way...they said the veins in his left arm
were too hard from where they have used that arm all the other times then they
said on his right arm the veins weren't any good and asked him if he was not
relaxed. That broke my heart a little bit as on the outside he looked as relaxed
and brave as he always does but on the inside I thought he must be so scared.
They tried a vein round the back & caught a valve (i think she said that was
what it was?!) and it bled...Dad was just as brave as anything & shrugged it
off...I was nearly on the floor so he took the mickey out of me instead!!
Eventually they got it in and he started his last lot of chemo. Dad was his
usual self...laughing & joking with the nurses. They asked how he had been
since his last lot and he said "Yeh fine...I ran the marathon on Sunday"...he
said it SO seriously & then said "and I won it..." haha!! Made me crack up
:) He was joking around with the nurses all afternoon...they must love him! They
were all busy & stressed that day but Dad just always lightens the
atmosphere with his amazing sense of humour. Mum went & got us some
chocolate from the hospital shop..me & mum shared one bar then dad eat his
and when it was near the end of the bar he tried giving it to me & mum (he
always does that...he'd give you his food even if he was starving!)...we said no
then he sat there scoffing it...smirking and taking the mickey again cos he
knows how much I love chocolate :)

 

Dad has been fine since that chemo...the 3rd and 4th lots seemed to hit him
worse than the 1st and 2nd but only in terms of tiredness. And no matter how
tired he has felt he has still walked about half a mile a day and cleaned the
whole house for my mum every single week. His attitude is "I'm not going to mope
around all day..I want to be up & about doing everything"...I cannot explain
how inspirational he is. His sense of humour has been keeping him and all of us
going. The other day Marc was saying how he has to go to Oxford for a work
trip...I was messing around saying "I hope there's not going to be any stunning
girls on this course"...Dad said "Oh yeh...Oxford is full of beautiful women...I
better go with Marc so I take the attention away from him as they'll all be
focussed on me"! Then this Saturday Marc and I took in a subway for him (steak
& cheese...his favourite!)...and we were chatting for ages. Dad looked fit
& strong & I thought to myself how if you didn't know anything was wrong
with him....you really would not guess. He has put on over a stone in weight (we
constantly call him porky/fatty boom boom!)...his legs don't look half as
frail...when I hug him I don't feel bones anymore...and his face has got SO much
more colour to it and it looks fuller. He was saying about his appointment on
the 16th....then he mentioned about it spreading. I'll be honest...that hadn't
even crossed my mind :( How naive...I just assumed that with chemo it wouldn't
stand a chance of moving elsewhere at the moment. I said "Well you haven't had
any symptoms have you"....and he started twitching his arm and shoulder...with a
really serious look on his face then started laughing :) As we went out the door
he said "Na I'm a council boy mate...we don't give up"...and he had the look of
strength, bravery and determination in his face...

 

I tell him how proud I am of him ALL the time but he just shrugs it
off..."Na...it is what it is" is what he says...and just says how he refuses to
give up. "Bring it on" is what he says to having more treatment and said he'd
even have more of this cocktail of chemo if he could (although the consultant
said he won't be able to because the side effects get worse). Dad is prepared
for anything other treatment brings though because he just doesn't want to give
up...he wants to fight it with everything he has.

 

Yesterday we went to the seaside...me, my mum, my dad and the 2 dogs. Dad was
so tired this weekend but he insisted he wanted to get out and get some fresh
air. We went to the leas in Minster...one of my dads favourite places. I took a
sneaky pic of him laid on his side on the grass....I thought how happy, carefree
and GOOD he looked. He looked relaxed and he had his glow back (he loses that
sometimes on his "bad" tired days...) I brought him a hotdog and chips and he
wolfed it all down...he said how little seaside cafes are his favourite and how
if anyone was to take him out for a meal he would be more than happy with
that....that's my dad tho...easily pleased!! We then walked along the seafront
and sat on the bench whilst my mum went & got an ice cream. We had a giggle
at the people in the beach with their tops off and bikinis on...it wasn't THAT
hot!!! Then Dad said how most of the benches were memorial benches and how he
had known some of the people who they were for. We looked at the one we were sat
on and it said their date of birth...Dad said "See....46 years old he was (dad
can do calculations in his head in seconds...so clever!)...that puts things into
perspective doesn't it"...he is thankful that he wasn't younger when this hit
and just sees it as something that happens as you get older..I could have
screamed out "NO!!! You're NOT old...and I wish to god this wasn't happening now
or ever"....but I just blurted out something about how any of us could go at any
moment..I sometimes find myself doing that. I just get lost for words and I'm
sure I don't always say the right thing but I find it hard...

 

We stopped off for another coffee on the way home and dad was chuffed to
bits...he said he had really enjoyed the day & he just looked happy and
content. He had really wanted me to go too (my hubby was at golf so couldnt
come)...so I think he was glad I did and he was saying in the car of the places
he wants to go to over the summer....whistable for chips on the sea wall...being
one!

 

My mum is struggling with things. I think she finds it hard because she
thinks everyone is focussing on dad and no one cares about her and how she is
coping. Of course that's not the case but everyone IS focussing on dad because
he is the one who is ill. She has been really ratty this weekend and I've found
it draining. I love her to absolute pieces but this weekend she has pushed me at
times. On sunday I helped her go through their garage as they are hopefully
going to downsize to a 2 bedroom property to help financially now dad can't work
and Mum can then think about retiring (she is 68 in august after all!). Dad
really didn't feel great on sunday...he just felt lethargic and had no energy.
He wanted to chill out and watch the footie. Of course he felt guilty that he
couldn't help but I was helping mum so she wasn't doing it alone. I had helped
mum with the food shopping in the morning and Marc and I had taken her for
coffee beforehand...she moaned how dad didn't help her take the dogs for a walk
in the morning and how it was "boring" doing it on her own. I tried to explain
how this is dads bad weekend & how tired he is and how he had sounded
drained when i had spoken to him that morning. I kept my temper but then ended
up crying my eyes out in the middle of the cafe...i just felt frustrated,
upset...I TRY my best to keep everyone happy but I hate the thought of anyone in
the family struggling and I felt helpless but also mad that mum didn't seem to
understand that dad CAN'T do everything he used to do...

 

We bumped into one of mums friends when we were shopping who lost her husband
to lung cancer a couple of years ago...that was hard. My eyes welled up when mum
was talking to her about dad & how I didn't break down there & then I do
not know. We went home & started on the garage then...and mum was constantly
calling dad out to help & moaning how she couldn't do it all & how she
was aching & just snapping at dad a lot. She seems very volatile at the
moment...I worry that she isn't talking about it & is in some sort of
denial. I asked how her friends were being and she said they were being
supportive etc. but I know how I feel in terms of talking to people. I talk to
Marc about it all and he is the only person i fully open up to about it all. I
don't really talk to my friends much about it...I don't feel sociable at the
moment at all & at times I feel incredibly lonely but then the thought of
chatting to anyone about it all fills me with dread (apart from to Marc). So I
get how lonely it can be...I just worry about her so much at the moment...

 

Dad is worried about her too...if I say anything to Dad about it, he says
"Don't be too hard on her...she's doing her best"...he never once moans when she
snaps at him or moans about being tired etc. Instead he feels really
guilty...which breaks my heart. He blames himself for mum being tired...he
blames himself for not being able to do more....he blames himself for having to
give up work as mum won't be able to give up work now until the find a smaller
house...NONE of which is his fault. He sent me some heartbreaking texts last
week saying how bad he felt about it all. I phoned him at lunchtime & he
said how he was worried how mum would cope financially if anything happened to
him...that broke my heart & I didn't know what to say at all....

 

Some days are incredibly hard. Yesterday evening I was so tearful...Marc
whisked me away on a "date" to whitstable...we got an ice cream, went for a long
walk then went and had a couple of drinks in the pub...it was the first time all
weekend I felt myself & felt relaxed. Then we went and got chips & it
was just perfect...just what I needed. On our walk we agreed to start running
tonight (been meaning to for weeks) and I said how we could go after work but I
would still want to pop in to see dad every night & he said "Of course we
will...I love going in to see him every night too"....that made me cry again. He
just GETS me like no one else does...he gets how important it is to me that I
spend as much time with dad as i can & do anything dad wants to do &
help out around the house etc. His support is everything to me. The fact that he
agreed to plan our wedding in 3.5 weeks when we had not planned to get married
until at least next year if not the year after was one of the best things anyone
has ever done for me...but all Marc says is "Course I would...I was desperate to
marry my princess"...his support is second to none...I cannot imagine how I
would get through any of this without him...

 

So now the waiting begins for the appointment on Thursday 16th May. This
sunday we are going for afternoon tea at a beautiful manor house near us...I
cannot wait for that! But past that I am not planning anything. There is SO much
I want to do with my dad...go & eat chips on the sea wall...go to Colchester
zoo again & feed the giraffes...go to a posh steak restaurant in London (we
got dad vouchers for his birthday last year!)....go to Kew Gardens....and loads
more. Marc & I are off work the last week of May & I want to do stuff
for us (we agreed last night that we MUST take time for ourselves)...but also I
wanna take dad out too...I guess it depends what happens with further treatment
etc...

 

I failed my 2nd driving test the other week too...Dad was FUMING!!! I failed
for something SO silly (put the indicator on at a mini roundabout & it
switched itself off)...so I was so upset & had a good cry. Dad was amazing
as ever & made me feel better within about ten minutes (as he always does!).
I have rebooked for Thursday 30th May and I am DETERMINED to pass...for
Dad!!!

 

I have also put in to do Race for Life with some family & friends...we
are called "Dave's Dollies"!! We are going to get tshirts made for it & i'm
determined to raise at least £500....I have also put in to do the marathon next
year...a BIG thing for me as I have never done anything remotely like that but I
want to run it for Macmillan or cancer research and of course...for Dad. I just
want to make him proud all the time. I can't think too far ahead though as that
is a long way off & my way of dealing with everything is to take one day at
a time...

 

Please keep everything crossed for my amazing dad on Thursday 16th May...xxx

Anonymous
  • FormerMember
    FormerMember

    HI Sarah,

    Your thoughts and feelings totally mirror mine.  You have such a wonderful relationship with your dad and it's obvious to see that, just how much you love each other.  He needs you know and you are very lucky to be able to support him and give him all the love he needs.

    Re: your mum, this is tough on her too but the main priority is your dad and I'm sure she understands that.  it is a very difficult situation for everyone but you will continue to be there for you mum, more so in the future.

    The way you describe your dad and how he is handling it, including his treatment sounds just like mine, they are so scared but always thinking of us and how to make us feel better - totally selfless.  I realise now dad's words and actions during his illness, particularly in the end were only to make us cope after he had gone.  His main priority was always us. 

    I know it's hard but try not to worry about the apointment at the moment, just forget about stupid cancer for a week.

    Well done on the races you've entered too, I feel alive and inspired when I do things like that, I've done 3 events now and I've raised over £2500, doing one this year too.  It makes me feel close to him.

    Keep smiling xxx

  • FormerMember
    FormerMember

    Hi Molly,

    Thank you so much for your lovely message xxx How are you holding up?

    You sound incredibly brave & strong...something I really do not feel at the moment and looking too far forward I literally do not know how I will possibly cope :( It just doesn't seem real most of the time that MY dad...my hero...is terminally ill...I just feel like I'm in a daze 99% of the time.

    I aim to carry on raising as much money as possible and one day I will really throw myself into it and do as much as I possibly can. At the moment my time is limited as we are spending every moment possible with dad as well as working long hours etc.

    Thank you again for your lovely words...sending you big hugs xxxx

  • FormerMember
    FormerMember
    Hi Sarah, reading your story is like reading mine. My dad has recently been diagnosed with small cell lung cancer which is extensive. He has had 1 cycle of chemo so far & we are back or bloods & next appt on 15th may. I too see my dad every day & work long hours so its a full time job but I find it difficult having time for me as I feel guilty & wan to spend all m time with him. My mom has also been angry with me for no reason which I find really hard but I suppose she needs to be angry at someone. This cancer has come from nowhere & ripped us all apart. I hope we both have lots more time with our dads as I'm not ready to let go don't think I ever will. He is my hero & I love spending time with him, so good luck for next week & keep in touch xx Clare xx
  • FormerMember
    FormerMember

    Hi Clare...

    I'm so sorry to hear you are going through this too...sending you a big big
    hug!!!! You sound exactly the same as me and how I feel about my Dad. I
    literally would spend every second with him if I could...I hate leaving him. How
    have you found people have been with you? Friends etc. - have they been
    understanding? Some have been great and totally understand that Dad is my
    priority right now and nothing else really matters. Others just haven't "got it"
    at all...and some think that because the last appointment was "positive" that I
    should relax a bit and not stress about spending all my time with him which
    annoys me so much. He is terminally ill & this will get him...as much as
    that kills me to say & I can't even bare to think about it...so of course I
    am going to spend every second I can with him.

    I'm sorry to hear your mum has been getting angry with you. I know what you
    mean about it ripping you all apart...I feel like that too. To start with I felt
    like we all pulled together...now I have times when I feel SO lonely and I worry
    that when this gets him it will rip us all apart even more.

    I too feel guilty if I'm "enjoying" myself and if I ever feel a bit
    happier...it suddenly hits me and then I feel awful. It's so hard to realise and
    accept that nothing is going to be the same again and the future just fills me
    with dread....I feel bitter when I hear of other people looking forward to
    holidays, looking forward to starting a family etc. I DREAD all of that because
    I know that things like that will be in the future...and dad won't be around
    then :(

    Sorry for the rant hun...please feel free to rant back :) Good luck for next
    Wednesday hun and please do let me know how your dad gets on. Big hugs xxxx

  • FormerMember
    FormerMember

    Thanks for your reply Sarah.

    What you are going through now is the worst bit I think, your dad is incredibly scared and how the hell can we even comprehend what is going through his mind.  But I promise you the relief you will feel will be your prodominent thought and for me, that is still my strongest feeling that my wonderful dad is no longer suffering.  We no longer have to see oncologists, visit hospitals and worry what will happen.  I know he isn't with us now, but the suffering for someone you love so much is just unbearable.  You WILL cope, you will be alright.

    I agree right now the most time you can spend with your dad the better, he needs you and you need him.  This time, these memories you have total control over.  You are in a lovely place to be able to plan your dad's last months with him, not many people get that chance.

    The hardest thing for me is that dad will never know anymore what I do, like my triathlon on Sunday, he would have loved to be there, but he wasn't.  He didn't know I even did it.  He won't know how my life will pan out, he won't be there when I get ill, he won't be there when my time comes.  As time goes on the memories of the cancer fade, but I've still got 38 years of having a dad and it's so hard to believe that he is no longer with us.

    Keep strong and carry on doing what you're doing, your actions now will comfort you in the dark times ahead. xxx