Living with Broken Happy Ever Afters

I’m trying to be strong with all that’s going on with me.  It’s important to me that I stay real.  That I accept what’s happening, and what’s going to happen, and I think one of my main missions now is to make sure that those I love accept it.  I am trying to step back a little and watch them interact together.  A mother is often the glue that keeps everything together.  I need to have peace in my mind that when I am no longer here, the close family unit we have won’t fall apart – that they will be there for each other.  I need to see them making decisions that won’t include me, to encourage them to reach out for their dreams whether I am there or not.

It sounds so good.  So enlightened.  “Oh Katie is handling this well.”  To a certain extent this is true, but do you know what?  It hurts.  I know it’s the right thing but that doesn’t stop it hurting.  A current example of this: we moved into our “forever” dream house two years ago.  Mikael is starting to sort out the basement rooms, one of which will be the rec room.  We already have a pool table down there and had an idea of it being a bit modern meets retro, complete with a pinball machine (I’m a pinball queen) and jukebox.  That’s not going to happen now because I know that Mikael wouldn’t get the use or fun out of it that we would have had there together.  Now I am watching as he designs something completely different for the area.  I’m trying to stand back and not be too involved because this has to be a space he loves and wants to use, not one that reflects me, and this creates a lot of emotion within me.  I need him to do this on his own, but then I think about what should have been and it saddens me.

This morning I was watching something about Pink on Facebook, and her song “Broken Happy Ever Afters” was mentioned.  Those words immediately resonated in my heart because they sum up exactly what has happened to us.  The décor for the rec room may not sound that important in the grand scheme of things, but the original plan – like rocking chairs out on the deck – was part of our happy ever after plan for our old age, and it’s been unexpectedly shattered.

I feel conflicted about having this little pity party, because it isn’t who I am.  I still firmly believe in living in reality, in acceptance of what can’t be changed, in seeing the positive in all things, but at the same time, I have to be honest, and acknowledge and mourn the broken happy ever afters that we live with.

If you got this far, thanks for listening.  I do appreciate it.

A Long Overdue Update

Sooooo, it’s been quite a while since I updated the blog and while there is a bit of procrastination involved, mainly it was because the super chemo pretty much knocked me out.  Perhaps for some people this treatment works great, but my body was very vocal in its negative response.

I took the special treatment alongside my “usual” chemo for two cycles, and five months later I was still enduring the side effect aftermath.  One of the worst things were the severe burns, one of which was 14” x 5” right across my stomach (yes, including the stoma area which made life very difficult for quite a few weeks) – and some of these side effects didn’t appear until a few weeks after the second treatment!  For a number of months I hardly left the bed unless going to the bathroom or hospital for more tests or treatment.

My consultant approved a break in chemo over the summer as a scan showed my body was responding to treatment and the cancer was stable.  This meant we got to the UK for a few weeks.  While there things went wrong and a hospital visit discovered an infected cyst beside the colon.  They treated it with antibiotics, but back in Sweden I was put in the hospital for a week and required a small procedure to clear out the infection.  Now they are waiting to make sure the infection is completely gone before restarting chemo.  The CT scan taken upon our return from the UK showed that during the hiatus from chemo, the cancer had become unstable again.  I had another CT scan this week to check for infection, and if there is none showing, then I can expect chemo to start again in the next week or two.

I still can’t walk far.  I can get to the kitchen but not stand for very long once I’m there, so I plan what I am going to make for supper carefully before I even start to go to the kitchen.  We have bought a wheelchair, my warrior princess chariot, and this means I am no longer a prisoner in the house.  Mikael can take me shopping, and for coffee.  We used it in the UK and he would push me along to the harbour for coffee.  I never thought I would see the day that I looked on a wheelchair as the key to freedom.  It is frustrating, but after so many months of being unable to go anywhere, I am thankful for the possibilities this now opens up.

If I’m honest with you all, I confess to being scared at the thought of the chemo restarting.  My consultant intends to use the same chemo that I had last session, and the rational side of my brain knows that it’s not pleasant but I can handle it.  Unfortunately a little voice in my head keeps reminding me of what happened with the special chemo and how my life became suspended for months because of that.  I won’t be having that special chemo again …EVER… but the fear of becoming incapacitated like that again lives on.

And currently, that’s how it is.   My boys are healthy, the sun is shining, and despite my limitations, life is good and with the help and support of Mikael and friends, I continue to fight on.

I Have a Mutation!

Here we are again, day 14, the end of another cycle with cycle 5 beginning tomorrow.  So how has this cycle gone?  To be honest, not well at all.

To begin with, there was good news.  When I got to day 1 of cycle 4 not only did I not need a blood transfusion, but I was told that I had a mutated gene.  This means that Iam a suitable candidate for some kind of superdrug they could add to the chemo which has the potential of expanding my life expectancy up to a year.  So from 3-5 years, we go to 4-6 years.  Great news right?  Cause for celebration.  Of course, there are side effects, so much so that this superdrug comes with it’s own compulsory add-on antibiotics!  Fine, for another year, we’ll take the antibiotics, a few more pills aren’t going to make much difference.

The problem has been that the tiredness brought on by the new combined chemo regime has made life as I knew it non-existent for the past 2 weeks.  Here at day 14 of cycle 4 I am still unable to find the energy to do anything.  Mikael has taken me out for coffee a few times, which has meant I walk a few steps to the car, a few steps from the car to the coffee shop, and then back home again where I collapse on the bed as if I had ran a marathon.  Another of the worse side effects this time has been the amount of mouth ulcers which meanst it hurts to talk, and eat.  Not being able to talk to Mikael, and more especially our boys (who like to debaate philosopjy, history, religion etc for hours) has been really hard, and despite the pain, I have still had to talk with mam every day for an hour otherwise she would speak to no-one and become more confused about things like what day it is.

So today we were at the hospital for the routine bloodwork ready for tomorrow, and told the nurse about what happened.  I feel such a hypochondriac when listing out all the side effects I have had this cycle.  She will talk to the Dr about it.  I told her that if the superdrug gives me no life while it is being taken then there no point in taking it because without it I have 8 days out of every 14 when I can forget all the problems and just get on living a more or less normal life with my family.  However, given that it may be doing some good I’m willing to compromise with a half-dose and see if my body tolerates that better.

I have to say that Mikael is a star.  When he’s at home he’s in and out of the bedroom to see if I need anything and keeps the cream cheese and crackers coming.  He’s also pretty much single handedly running the house.  Despite the exhaustion, I have managed to do supper this past week, and that’s been a struggle, but otherwise, Mikael’s taking care of everything – especially me.  I am so blessed to have him as my husband.  I try not to be needy but some days, well some days he probably wishes he was somewhere else – especially when I ask him about the state of laundry room……!

In other news I bought a new toy for myself.  It’s going to make such a difference to my stitching because it die cuts fabric. No more wobbly edges.  I am so excited to have it, but I haven’t even had the energy to take it out of the box.  Also another side effect has been that the tops of my fingers have been affected by the drugs – it attacks the skin so really I have been incredibly lucky not to have faired worse in this regard, but it has meant that I can hardly type never mind hold a sewing needle or crochet hook.  I really hope we can do something with this coming cycle so that I be more productive.

I’m prepared for the worst though.  I know that maybe this new cycle may be as bad as the last, and so I have Amazon prime video, and a number of TV series and movies already in my favourites box all ready to distract me if that’s the best I can do.  Acceptance Katie, accept what is inevitable and move through it with as much grace as you can muster.  Bright light at end of tunnel, only one more cycle after this next one, and then it is assessment time to see what improvement has been made. 😊

Thanks to everyone who continues to support my journey.  Your good wishes help get me through the rough days.

Once More Into the Breach….

Tomorrow is the end of cycle 3.  Halfway through this block of chemo.  I’m anxious about what will happen on Thursday because I don’t handle uncertainty very well.  I like to know what’s going to happen, but unfortunately as this cycle proved, the test results from tomorrow’s bloodwork determine what happens on Thursday, and this won’t be known until I get to the hospital on Thursday morning.

The reason for my anxiety is that the chemo is only supposed to take about 2 hours, but last time my blood level was too low and so directly after the chemo they did a blood transfusion which meant the 2 hours became almost 7 hours.  That’s a long time to be in the hospital, especially when you weren’t prepared to be there that long.  Even more especially when you have to go back first thing the next morning for the next chemo.  This time I am more mentally prepared because I know it might happen again, and I know not to make plans for afterwards because they may not happen!  I just wish I had some advance warning.  Did I mention that I’m not good with uncertainty?

On the plus side, this cycle they added a fourth anti-nausea medication and it worked really well.  I still had some nausea, but with this new one, plus the other 3, life was much improved.  So much so that I was able to make it out of bed and with some effort made it to Mikael’s parents on Easter Saturday for a few hours. I did my egg painting (or stitching in my case – made a little felt rabbit head and put that on my egg. I painted a base as a collar for the rabbit so I wasn’t disqualified! LOL), and was at the supper table although I wasn’t up to eating. Mikael took me home immediately afterwards.  I was exhausted, but Mikael’s mamma was so happy that I turned up that I was so pleased I had pushed myself to go, and felt pretty proud that I managed to be part of the family Easter tradition despite what I had originally thought.  I know that this wouldn’t have been possible without the additional medication so I am so thankful for the drugs that help me cope with the side effects.

Other than that, not much to report at the moment.  I did have a bit of emotional downturn this past week.  As the new chemo cycle draws closer, and I know I will become a shadow of my usual self for almost a week, I wonder if the chemo is working.  I worry if it isn’t, whether they will decide to do a new course with different drugs and if these will be even harsher than the ones I have now.  Then I think if they aren’t working, I am going through all of this, losing almost a week in every two, for nothing.  It was a momentary lapse.  I know why I am doing this.  I am doing this because I have to do everything I can to get as much time as I can with my family.  I have read a few journals of people who had the same diagnosis as I have, and their stories, wrote a few years or more ago, show a far worse treatment and side effect program than I am experiencing.  This makes me so thankful for the researchers who work to make more effective drugs that, whilst still having a lot of side effects, seem to be far less violent in the body than those described in the journals.  Despite the slight lapse in positivity, I know how lucky I am to be getting the treatment I am.  Mustering together my inner strength, and crossing my fingers that no blood transfusion is required this time, onwards I go into cycle 4.

5 Days and Counting

Today’s vampire visit marks the end of cycle 2.  What have I learned about chemo so far?  Well, I now know that the chemo removes me from the land of the living for 5 days.  After that, there are a further few days when I am half-zombie, half-ancient crone who can hardly stand up straight, and then life improves somewhat.  In the past 6 days I have felt pretty good, almost like my usual self as was.  Still really tired most of the time but able to do “stuff” like going out for morning coffee with Mikael, and chatting with the boys, preparing meals, shopping, etc.  Even doing the most mundane things seems an achievement but I am so thankful to be able to move around and do them without feeling sick.

The nausea is by far the worst of the side effects for me, or at least is has been for the two cycles I have completed.  Think of feeling travel sick, and the car isn’t going to stop moving for the next 5 days/nights and you will get some idea about how bad the nausea is.  To be completely honest yesterday and today I have been filled with nervous anxiety because I now know what I face.  5 days is a long time when doing anything, including reading which you usually can’t do enough of, makes you feel sicker than you already feel.  On the plus side, I know this will pass, I just have to count down the days and know that after day 3, things will start to turn around slowly.

Knowing that I will be out of it for 5 days means that I can now somewhat plan ahead.  This is a good thing.  It means I can tell people, make sure you have what you need from me by Tuesday because after that, you will wait at least a week until I catch up with life again.  This is especially important this week because it’s Easter, and there are things that need done as I won’t be able to participate in our Easter celebrations this year.  I will be one pretty miserable bunny over the weekend because Easter is my favourite holiday here in Sweden.  All the family gather at Mikael’s parents on Easter Saturday.   We chatter, paint our eggs and eat a lovely supper prepared by Mikael’s mamma.  The egg painting tradition is legend in the family now.  At one time the grown-ups painted, but mainly it was about the kids.  Now the kids are all teenagers and there is a real feeling of tightly fought competition as everyone hopes their egg will garner enough votes to be named that year’s winner.  This is a family of illustrators/artists so yep, it can be competitive.  Mainly though, it’s just good family fun and tradition  and I am really sad to be missing from the table this year (not that I have any artistic capability).   Still, I have to be thankful that I am still here, and once I get through the 5 days I will be reunited with the family and able eat my chocolate eggs! 😊   AND I bought a huge pillow which will allow me to sit upright and snooze in comfort this time so that’s going to a definite blessing this time.

So that’s how it is folks.  My eggs are sorted and I think I have done everything I need to do so that I can step back into the shadows for the time it takes to recover from the worst of the cycle 3 chemo side effects without feeling guilty about not doing something I should have done.  All that remains is for me to wish you all a wonderful Easter weekend.  Happy Easter everyone.  See you all on the flip side.

Unexpected Heartbreaking Conversation

Well I’m supposed to be sharing my journey with you, warts and all, so I should tell you about something not so up and positive that happened last night.  Something that just about broke my heart.

Connor (our youngest, 14) came into my workroom around 8pm and asked if it was possible for us to go on holiday to the US.  The conversation went something like this:

Me: “Hmmm, we had wanted to but there’s a few problems with that now.

Connor: “I thought it would cost too much.

Me: “Well, it’s not just how much it costs to go, but with the additional bits your mamma now has, such as this metal port, airport security isn’t going to be a walk in the park, esp in the US.  Then there’s the insurance.  It would cost more for my insurance alone than the rest of the trip put together because of having the cancer.

Connor: “We could go when that goes away.

Silence.  In that second I realized Connor didn’t understand the implications of what we have been talking about and my heart just about broke.  I thought we had been clear about the situation.  Apparently not.

Connor: “It will gt o away, I mean eventually right and we could go then.

Me:Do you want me to tell you the truth about what is happening?

Connor: “Yes.  Of course.

Me: “We will fight it every way we can, but it’s not going to go away, baby.  Not ever.  They can try to contain it.  They can try to reduce it.  But they can’t cure this type of cancer at this stage.  Not yet.

Connor:  “Will it kill you?

Me: “Yes.”

Connor: “When?

Me: “That’s a tough question because they have statistics and guess work but not specific answers.

Connor: “What do they think?

Me: “It depends on various things, such as whether they think I can have surgery or not, but maybe up to 6 years, maybe half of that.

He looks at me and says “Well that’s not so bad mamma because I will be almost grown-up then. I will be ok.  It would be much worse if you were to die and I was only 15.

We talked a little more, the conversation ended and he went off to raid the fridge as teenage boys do.  I sat there and thanked the universe for the specialness that allows him to process information, and detach analytical fact from emotional attachment.  Yes, I could have lied to him.  I could have fudged the truth.  But I have raised my kids that the worst thing they can do is lie to me, so I can’t change the rules now just because the truth isn’t pleasant.  I also want to make sure that both of the boys have time to accept what is happening, have time to ask questions, to make sure they do stuff with me that’s important to them, and to spend time talking with me about whatever is on their minds, because our time together is now even more precious than it was.

Sometimes, the emotional pain of this is far worse than the cancer itself.

Interview with the Vampires

Today is the end of chemo cycle 1.  I survived.  Go me!  My prize for survival of cycle 1 however is promotion to cycle 2 that begins tomorrow.  The last day of the cycle is bloodwork, and so off to the hospital I went this morning to see how this new port works.  And guess what?  The hospital vampire I saw today said that they didn’t do port bloodwork in their department.  What?  Guess what I will be discussing with the chemo nurse tomorrow!   Thankfully, this morning’s vampire took time to find a viable vein, warmed it up, and managed to get blood first time.  Impressive!  Sometimes I feel that I should carry “well done” stickers in my bag to give to the vampires who don’t need a second (or more) attempt!

Today I feel emotionally fragile.  This is not a good week for me.  Not only do I have chemo tomorrow and Friday, but it is the one year anniversary for losing my sister.  Exactly one year ago today I found Pauline unconscious in her flat, resulting in her being admitted to the critical care hospital.  A year ago tomorrow would be her 49th birthday.  A year ago on Friday she was put onto life support.  A year ago on Saturday we lost her.  To be honest, I remain far more sad about this than I do my own situation.  I miss her so much.  We never got along very well in our younger days, but life has a way of blurring the black-and-white differences and in the past few years we would chat on messenger throughout the day, most days.  So many times something happens and I go to open her chat box and then am overcome with an emptiness as reality reminds me, she’s not there anymore.  My life is emptier without having her to chat to, laugh with, and yes, squabble with.

So, it is with a heavy heart that I approach chemo cycle 2 tomorrow.  On the plus side, I’m organised.  I have ordered my comfort food (Heinz Veggie soup, and Cadbury’s Double Decker bars) from the British Corner shop online, and I have what I hope is an easy craft kit to keep me distracted from the serious nausea that was by far the longest lasting and most severe of the side-effects in cycle one.  I know some of you will be curious to know what I’m going to make so I will say it’s an Easter project using really pretty felt.  I think it’s cute – hopefully my idea of cute does not translate into my darling hubby’s idea of tacky!  It’s getting made anyway cos I like it! LOL  If I manage to create something in the next few days, I’ll post a photo on my next update.

Meanwhile, I hope that all of you are having a wonderful day, and thank you for your continued support.

A Belated Thank You!

If you know me, and know me well, you know that I am somewhat deficient in social graces.  Oh sure, I can put on a mask and turn in an Oscar winning performance, but deep down the real me is the most extreme introvert you will ever meet.  Really!  Because of this, it has been overwhelming to read the comments of love and caring on my Facebook update about my colon cancer diagnosis.  I don’t know what I expected, other than to make sure that should something happen, family/friends couldn’t say “why didn’t we know?”.  I didn’t want Mikael to be in the same position that I was in last year when Pauline (my sister) died, and I had to inform her friends.  In Pauline’s situation there was no time for a warning shot across the bow, no time to let people know she was in hospital never mind in a critical condition.  It happened too fast.  In my case, I had a choice to keep it hidden, or to come clean and let people know what was going on.  I chose to learn from Pauline’s situation and tell all.

What I didn’t expect was the amount of love and caring support that I have experienced from family and friends around the world.  I am so blessed to have such a large support group and if positive energy alone was enough to heal me, I would be the healthiest person on the planet right now.  Seriously.  As it is, I must be one of the world’s luckiest people to have such friendship.  You have no idea how many times I would read a message over that week, and emotional tears would fall onto my keyboard.

As I said, I’m an introvert, I’m not a social animal at all, but as I read the messages on FB I was aware of the different groups of friends who have touched my life, most of you going back 18 years or more (pre-dating FB!).  Family (blood and otherwise) who are always with me in spirit, friends I made working at the University in the UK (which feels like forever ago!), the MAJIC girls who were all trying to be first-time mommas at the same time back in 1999, the Momwriters with whom I shared Jake’s traumatic birth story in 2000, and the friends I have made here on Facebook through the various interests I have.  It occurs to me that these were all social networks when social networking wasn’t a part of our everyday dialogue.  It occurs to me that perhaps I’m not as insular as I had thought.  It also occurs to me that as Sally Fields said “You like me!” I didn’t know that.  I thank you for your friendship and your support throughout the various stages of my life, and especially now as I face this challenge.  I no longer feel so alone, and I thank each of you for your continued friendship.  I have no words to tell you how much that means to me, so from the bottom of this introvert’s heart I will just say a belated, but simple, THANK YOU.

And We’re Off – The Chemo Journey Begins

Thought I should maybe say something on how my chemo is going to be structured.  I am on a 14-day cycle.  Day 1 and Day 2 are chemo-input days, then days 3-13 are rest and recovery days, with day 14 being visit-the-vampire days to check that my blood count has redeemed itself back to a normal value ready for the new chemo cycle beginning the following day.  The current schedule takes me up until the middle of May.

I am now on day 5 of cycle 1 (C1:D5).  The side effects haven’t been as bad as I anticipated so far, although I have to confess that I saw very little of Saturday, having slept most of the day and night.  I remember reading somewhere once that your brain can’t cope with two different areas of pain at the same time, so if you want to distract yourself from one pain, you should find another.  This would appear to be true because far worse than the side effects (so far this cycle) has been the pain and inconvenience caused by the surgical procedure I had to undergo in order to put a port device into my chest that will allow the hospital to give the chemo shots, and take blood, without needing to play hide-and-seek with my incredibly shy veins.  Being incapacitated down my right arm/hand while this implant heals over is no joke, my left hand has no idea what to do with the mouse buttons and apparently is in no hurry to learn (old dog, new tricks syndrome perhaps?)!  Thankfully, the pain from this is healing and I am now able to type a bit, if not yet stitch, once again with my right hand.

Despite the pain and fatigue for days 1-3 of the first cycle, yesterday I did notice that I was able to do something.  Not much, but something.  Something more than I have been able to do for months because I just haven’t had the energy to think about doing something never mind actually doing it.  I want to stitch.  So much fabric, so little time (even if I lived until I was 90 there wouldn’t be enough time!)  Yesterday however I was focused enough to get a book out and think about making something.  Today, I am even considering venturing into dressmaking having seen a dress that is so me on the stitching tv channel this morning.  This provides me with as much optimism as to  how the  treatment may positively affect my life status, as it will fill Mikael with dread as to how the same activity will negatively affect the bank balance! Hahaha   Oh how I adore sewingquarter.com!

The Fight Begins

Today I had my first meeting with my Oncologist.  She didn’t tell me much that I hadn’t already read in my patient notes (here in Sweden we can access our patient records online), but she did give information as to how things were going to proceed.  As we knew from the patient notes, surgery was currently not an option for me so it will be chemotherapy, plus probably radiation.  If things with the chemo/radiation go well, then perhaps surgery will be put back on the table (pun intended!).

So chemo begins 8am on Thursday morning with a small operation to insert a port on my chest into which they will insert the drugs, and out of which they will be able to draw blood – this is a good thing because I have very shy veins as even a simple blood test can be a lengthy, frustrating procedure (3 nurses and 5 failed attempts to get blood today before they hit a slow but co-operative spot).  The plan is that I will have 2-week cycles.  Week one will have two consecutive days of chemo, and week two will be a rest week to allow the body to recover from week one.  The plan is for this to go on for about three months after which they will do another MRI and see how the cancer is reacting to the treatment and then they will decide what happens as a result of that.

Prognosis was all about statistics, and depends on whether or not I have surgery.  People with stage 4 colon cancer usually live up to 5 years if they have surgery, but perhaps 3 without – give or take a year or two.  So from that I figure somewhere between two and six years.  It could be a lot worse.  You can accomplish a lot of things in that length of time – ask my kids how much I can pack into a 2-3 day mini break!

It feels good that they are starting treatment so that the rate at which the cancer is spreading should be slowed down if not halted.  Mikael is really happy about this.  To be honest, I feel scared.  I really hate the idea of having to go through the surgical procedure to insert the port.  It’s a local anaesthetic so I would be much happier if they just did it up in a treatment room in the Oncology Dept, but nope, it’s a full blown circus of pre-op starvation, hospital gowns etc. I’ll be the first to ‘fess up that I am not the most gracious of patients when it comes to surgical procedures!  I’m also concerned about how the side effects of chemo will affect me.  I know what I could expect, but not what I will experience.  I think that’s the underlying problem.  The unknown always scares me.

So there we have it.  After weeks of uncertainty and  countless tests, my fight back begins in two days.