Category: Blog (Page 1 of 10)

Scan results and time to rest

The wait for scan results is something that we have discussed several times, but as time goes on it seems that each scan brings with it more and more stress.  Simon and I talked about this and we know that every scan gets closer to the one we don’t want to get, it would be the one where we hear that the chemo is not working so well.  I am normally the one that will remain positive but this time I feared the worst,  I kept thinking that over the past few years we always got bad news in November and thought this would be the same,  I am not supersticious but could not help but fear the worst.

HOWEVER,  this was not the case this time.  As usual we sat in a room for several minutes on our own waiting for Dr Sheriff to come in,  these minutes dragged and I mean dragged,  however he knows us well and so gave us the news that the scan was stable.  This is the best it would ever be,  and the relief on the room was obvious.  So our onwards and upwards is another three months of treatment, and scan again.  Time to breath again.

One of the drugs Simon is on is Cetuximab, this is by far giving him the most side effects which is to his skin.  So looking at the side effects he is getting the Consultant has reduced the dose to 55%,  this comes with it a host of worries, does this decision, though for the right reasons, mean this will actually stop working now.  For now we will take the reduction and go through the next three months until the next scan.

For me work and home life has reached a limit that I need to take a step back from work.  I have tried to juggle work and home and I have realised I cannot do both.  So after a visit to my GP I am taking time off work to try to get everything back onto an even keel.   My mind works overtime,  my head full of everything that is going on in work and at home and to be quite honest with you, I need to stop.  With work in mind I have made the decision to take easy retirement and come the end of March next year will be retried and will be at home with Simon full time.  This was not a difficult decision, we need to be together and to spend time living.

So we are heading into Christmas, house is decorated and we have plans to see all the family over holidays.  Thank you for again staying with is for another year and following this journey we are on.

Onwards and upwards,  TTFN

Family ties and when new life brings hope.

There are times through all of this  crap that events happen that bring us joy and hope.  You may not realise this but for Simon and I our marriage is our second marriage for both of us.  Simon has two children but I was never gifted with children, something that at the time (and still can be) was difficult to deal with. We do not in this blog discuss our families too much but here is a quick run down on who we actually are to put some context into this blog.

Simon,  he is the youngest of three children,  he had two older sisters, Michelle and Sarah,  Sarah sadly died from bowel cancer at the age of 46, Michelle lives down in Cornwall with her family and so does Simons Mum .  Simon has two children who play a big part in our lives,  his son lives abroad and his daughter lives nearby and we see her regularly.  We are also very close to Simons nephew,  he stays with us regularly.  I love having these two as my step children (it is a pleasure to get to know and help guide these two), Simons nephew is as close to a step son I could ever have.

I am the youngest of four girls, I know my poor Dad!  I am incredibly close to my sisters and as a family when times are hard for any of us we come together and are a force of support for each other and a force to be reckoned with.    My sisters have three children each and though it was hard for me to not have children I feel my 9 nieces and nephews have filled this void in my life and I love them like they were my own.  My sisters were incredibly generous in letting me be close to their children through their younger days,  this is something I can never thank them enough for.

As the years of not having children has past I have found a second wave of sadness,  this is not having grandchildren.  I see my sisters pleasure at having this pivotal role now with the arrival of Grandchildren  and I feel a loss all over again.  I would have never have thought this would actually affect me,  it has been over 20 years since I had IVF treatment and my life without children was something I was used to.

These feelings have somewhat caught me by surprise ……..  anyway to lighten this somewhat,  I had the absolute pleasure of being with my sister last weekend when her daughter Kate had a baby.  Kate asked if I would be a birth partner with Joy and so at 01:10am last Saturday I had the call that the baby was on its way.    The whole experience was something I will hold with me forever,  along with the absolute respect and awe I have for my youngest niece to be there when another member of the family entered this world, it was just so amazing.  Isaac William came into this world at 11:20 weighing in at a whooping 9lb 13oz bundle of loveliness. So amongst the madness of this life we are in, there was this life, starting out, loved by everyone and my heart has soared.

It is so easy to get caught in this spiralling life that we have and not to look outside of the circle we are in but occasionally things happen that make us lift our heads.

This week is scan results week,  the 3 monthly scans to appear to be coming round quicker and quicker and the anxiety levels within the house are again at the max.  It is hard to explain how this makes us feel,  we so many thoughts and scenarios going through our heads right now,   Simon appears to be well, other than the side effects of chemo therapy,  we are quietly going into our appointment this week prepared.   The chemo goes on and this week Simon had his 40th cycle of chemotherapy.  40th………. it seems unbelievable that  he has gone through so much and has body has taken so much punishment from the drugs they have given him.   BUT this is what is keeping him alive and in the darkest days we reflect this.  We know the side effects,  these are not only physical but emotional and mental.  I know the days when a dark cloud is going to hover over the house and remind Simon that his darkest thoughts are heightened by chemo and steroids and that this cloud will move away.    His mood has been affected of late and he has struggled with the hours on his own, whilst I have been at work, to help with this we call on friends and family to ensure he has company or a phone call to keep him on his toes and of course the daily chore list.  The daily chore list consists of things that need to be done and I have made it my mission to draw a different picture of the cats …….

Christmas is flying towards us at a rate we can hardly deal with,  it is a time of year that we dearly love and make the most of but for this year Simon has struggled with the enormity of everything,  we have agreed with a scaled down version this year.  He does not want presents or cards in the house,  he finds this so difficult and does not want to see presents coming in,  I have had to tell all the family this, and though we have found this difficult what we are doing is somehow more important,  we are giving the family time together,  in this materialistic world we live in where time together is limited we feel this is the greatest gift.  So next week the decorating of the house begins,  we will have a house that looks and feels like Christmas, it will be welcoming and we will fill it with the people we love.

I will send a short post with scan results later this week, but for now onwards and upwards Mr C

TTFN

 

Planes, Trains and Automobiles

When I last updated you we were planing a few things, well we did it! And as the title of this update says we used several modes of transport to get us on our trip.  There were a few planning things we had to consider, firstly Simons treatment, being on chemo on alternate weeks we had to ask his Oncologist if we could delay one of the weeks.  Then pick a destination and go from there.

Firstly, train to London for an overnight stay, then we flew to Edinburgh, then picked up a car……… with most of our holidays there were hiccups in the organisation, train strikes and alike but we got there.  Our final destination was Luss, on the banks of Loch Lomand.  I have to say we found a little bit of heaven and the weather was unbelievable.

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The photo is of our hotel. We used our time well, boat trips, sightseeing, driving around the beautiful Scottish countryside as well as catching up with family.

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I can’t tell you how great it was to get away, feel normal and not have cancer as the main topic of the day.  We felt normal, were a normal couple on holiday.  There were several things ticked off on this trip:

  • Getting away
  • Flying, we both love flying, with Simon being diagnosed with blood clots earlier this year we thought this was not possible.
  • Scotland, we loved our last visit to Scotland.
  • Caledonian Sleeper,  one of Simons list of things to do.  This was AMAZING!

It showed us that with a bit of planning we can get away.

Introducing Conrad

So after our trip away we knew we had something to look forward to when we got home and that was Conrad……… who is he?  Well let me introduce you.

 

Following our motorhome holiday earlier this year we fell in love with the freedom a home on wheels and decided to treat ourselves.  This gives us freedom to not have trips away but actually day trips.  So with the weather not exactly being on our side we have taken the van out for days, lunches, cups of tea and days by the sea.  We know that in the coming months this is something we can use to get away and just have adventures. So be prepared for news of our trips.

All in all things are ticking a long,  Simons health remains the focus of our lives,  we have the next scan at the end of this month and so that is another hurdle to face.  Both of us are struggling at times with the enormity of “the future”, it is difficult to explain but unless you have walked a step in our shoes the I am sorry you are not qualified to comment……… its amazing that people do, whether its because they do not want to really listen, cannot cope with the subject or whatever………. just please refrain from saying “just get on with living” as that really gets my goat……

Thats us for now,  TTFN and onwards and upwards Mr C

Looking for the manual…..

Firstly sorry for the delay in updates, but as you can imagine we needed some thinking time

We live our lives in a world of instructions, policies and rules, you can’t buy a toaster without having a multi-lingual manual telling you the multiple ways to brown a bit of bread, and I want a manual for this. Over the past four months since the last blog we have tried to make sense of things, tried to be practical, in fact practical is what we do.

How should we be acting, what should we be doing, I really don’t know. There does not appear to be a manual for this, no instructions, so we are making it up. So there may be days when we do or say things that are wrong but we actually are just a little bit lost.

Simon has now stopped working, the affects of chemo, juggling work and home life just were getting too much and so the decision was made to take his leave from the work arena. This was very difficult for Simon, his colleagues and us both.

There are times when emotion overwhelms me but mostly I have hammered reality into a secure box and am trying not to think about what is happening to us. I can get up and go to work, food shop, cook dinner, just don’t ask me how I really am. I am going through the weeks one week at a time and on Friday just relish the thought I have got through another week.

There are however people who can support and assist us. Through our GP we had a visit from St Lukes Hospice palliative care team, we now have a member of their team that is there to support us. This visit was a huge deal for us and opening the front door to someone from a hospice was huge, this sort of thing was definitely in my locked and sealed emotion box that neither of us wanted to open, but we did and we sat and chatted to this wonderful lady (Carol). At this point please let me add that Simon is not in need of the hospice at this time and emotional support is what they are going to give us both. We know that at some point in the future this team will be in our lives, but for now they will stand in the shadows until we reach out fully to them.

So, unable to find a manual, or google search that helped us we decided to use a line from one of our favourite films, The Shawshank Redemption……..

Get busy living or get busy dying………

There is no bucket list, no top ten places to visit, we are just going to live our best life. This has taken several turns, and we have been busy planning things.

Firstly, we have sorted out Simons study/man cave, he now has a blokes place, TV, PlayStation, books, just a place for him to chill and watch the random rubbish he normally subjects me too……

The big thing we have done is buy a campervan……..this is currently a VW T6 that is being converted and we should pick up in a few weeks. There is much excitment with this and that we are going to be able to hit the road and travel, have overnight stays or go on day trips. I am going to leave full updates on when we get the delivery of our purchase in a few weeks. Safe to say Simon is uber excited about this and there are random daily deliveries of everything campervan.

We are also going on holiday, we are planning a week away. This is being done by delaying a chemo cycle for a week and via London we are going to Scotland by sleeper.

Cancer is robbing us of a lot of things, at times it overwhelms us, but we are not done living yet.

Onwards and upwards Mr C

TTFN

The longest day……

The day when scan results are due are the absolute worst, and this one was up there with them. The six week break in chemo had done Simon good, it was a good recovery time and enabled him to feel relatively normal (whatever that is), but the lead up to his appointment has been incredibly tough. We resorted to going through scenarios, Simons glass half empty and mine half full way of coping gave us a wealth of “what ifs”, we knew that one of us would be right…….. in fact we both were right and wrong.

So yesterday we busied ourselves in the morning, went out for lunch and then made our way to Oncology. We get called, the usual weigh-in and we get shown into the consultation room. Let me put this room into perspective, small, hot and no windows. It consisted of a couch (examination variety) and two chairs at either end of the couch, so we were not sat together. With us two, Dr S and the Cancer Nurse specialist the room appeared very full!

My list of questions and notebook on my lap and we were ready. It started with the usual niceties and then ………

The P word

So initially we were told that the six areas of known cancer were the same size but still showed they are “active”, however there was a seventh which was a lymph node in his neck. We questioned what next and what were our options. Due to the location of the lung and abdominal lesions surgery is not an option, neither is ablation, radiotherapy and anything else we thought of.

We asked a question and got the answer, Simons treatment is not curative but has moved into the palliative stage. Just that word made my world stop. Simon and I had discussed this could be the case prior to the appointment, and so whilst it was not a surprise it was a moment in this nightmare that will stay with me forever.

So here is the plan, Simon returns to chemo on a few days, this will be the same regime, this will be until the cancer works a way around it, there are a couple of other drugs that can be used, and these will be discussed at some point in the future.

We learnt new things, from Simons initial surgery he was in the high risk range of patients, this increased with the first recurrence and increased more with the second, this information now drives the decisions made going forward. I am not sure why this was only told to us now, but made a lot of things clearer.

We were given the opportunity to discuss timescales and decided against it. Neither of us wanted to start that clock running as we know it would rule our lives.

Suddenly the game has changed. The world seems a different place today and our conversations have been different, final, sad and with a heavy heart.

The waves of emotion are those that have overwhelmed me, I am heartbroken. I am allowing myself a few days to collect myself and gain control of these feelings l.

We have practical things to deal with and a list of things we want to do together. It’s a list but not a bucket list. We know this blog will now alter as we deal with the future twists and turns of this disease and we will both be writing updates and our usual ramblings. We have the supportive arms of our family and friends around us, we will need them in the coming months.

Onwards and upwards Mr C.

TTFN

Sun, sea and a motorhome

We are back from our week away, a week that has gone so quickly and we are sad it’s over.

We loved our motorhome adventure, and got into campsite life really quickly. Staying in St Ives, Weymouth, Charmouth and Dartmouth. We had the freedom of the road and loved every moment.

Simon got the measure of the motorhome really quickly and as his co-driver I didn’t get a look in! Anyway, as Co-driver my main role was “hedge watch” and letting the main driver know when the road was slightly narrower than our MH.

Since starting this blog we have told our story through Simons cancer treatment, and in that time we have not had a lot of fun, however this week we have smiled, laughed and generally enjoyed ourselves.

There were times when we talked about things, Simons anxiety at times took him over but we did what we wanted, worked through those moments.

Simon loves the sea and so our week away consisted of boat trips, sitting on beaches, and relaxing And generally being near the water.

We saw new places, made memories, and had time together.

I couldn’t have asked for more, we will be planning more trips away, we needed the break and we got that.

Onwards and upwards Captain Cowls

TTFN

Down the rabbit hole……

The whole thing about this cancer thing (I refuse to call it a journey, and it’s certainly not an adventure, so for now “thing” will do) is the appointments……. some are just to see how things are going, particularly if you are undergoing treatment and then you get the appointments when results are due.

This week we had one of those. We have been in this cancer “thing” for three years now and they get no easier, if you read cancer forums they mention scanxiety a lot, this is the anxiety caused by scans and results and trust me this is real.

We waited in the waiting room, the waiting area in Derriford is not the best, chairs round the edge of what feels like a walk way and you watch people getting called in for their radiotherapy or Consultant appointments. It reminds me of sitting outside the headmasters office (which I did a few!)

Eventually we were called, Simon was weighed, he gets weighed a lot and we always laugh as his jacket, wallet, keys get removed, like a sort of slimming club, but no prizes in this one.

We went into the Consulting room and waited for a few minutes for the Consultant and Cancer Nurse Specialist to arrive. The usual formalities were said and general enquiries about Simon since they last saw him and then I said “you won’t get much out of us until you tell us the scan results, we need to hear them”…….

when they start with the word “well…..” followed by a pause you know it’s not going to go well, this is when we both, like Alice in Wonderland, fall down a rabbit hole, the world whizzes past you, you can see and hear things going on and you desperately try to grab into something reassuring but that all becomes flimsy and breaks away in your hands…….

What it turns out he said was no change, now whilst no change could have a positive spin it means that in three months on chemo the six little buggers have not reduced in size or anything……..

The world stopped and we hit the bottom of the rabbit hole grabbing each other’s hands…….

We have two options, another three months of chemo, but we would be in the same place with nothing reducing, or a 6 week break and a PET CT scan which would give us a better picture. We went for the latter. Now for some detail…….

we need the 6 week break for the PET CT to give us an accurate picture, chemo can alter the results. Simon also needs the break from treatment, he has endured (and I mean endured) 6 months of chemotherapy every other week and his body needs the break. However, we are on a tight timeline of treatment now, the cetuximab Simon has as part of his chemo is governed from some pretty tight NICE guidelines and if he has a break longer than 8 weeks then the funding and the drug is stopped. So we need the break, PET, results and next appointment to all go like clockwork as we are up against it.

What after the PET? We don’t know, there is a lot of unknowns now, and we are facing the tougher end of this “thing”. If the cancers are no worse than we currently know about Simon could stay in the current chemo regime whilst it is holding it, at some point the cancer will be immune to the treatment (we don’t know when that is).

The tumours in his lungs are not suitable for surgery as they sit in the four corners and apparently taking his lungs out would not help, no shit Sherlock! We also have the neck lymph node and the “thing” that lurks near his aorta. We have written a list of things to ask at our next appointment, these include:

  • Radio frequency ablation, they only do one lesion in Plymouth and we have four, who does four?
  • Stereotactic ablation, is this possible
  • Research trials, can we get on a trial
  • Royal Marsden? Is this an option or other centres?

This has been an extraordinary tough week, Simon has convinced himself there is no hope, I am clinging to hope, I haven’t starting singing yet and like to proverbial fat lady I don’t plan on singing for some time.

We are using the next 6 weeks to live a bit, we have taken a week off work, hired a motor home and are planning a road trip…… we need to live, feel the breeze on our faces and stick two fingers up to the “thing” for a while.

As always onwards and upwards Mr C

TTFN

Rugby, cycle 11 (28) and greenhouses

Following our disastrous Easter weekend we found our week picking up. Simon was getting better, the weeks delay in his chemo had really made a difference to him. We then got the opportunity of a treat, or rather I did and dragged himself a long. I haven’t really talked about families much in these blogs, but I love ours, they have been a constant support, have been there for us and occasionally offer treats. One of my nephews is a physio for Harlequins rugby and they just happened to be playing one of our local teams, the magnificent Exeter Chiefs (sorry Chris!) and WE GOT TICKETS!

So here we are enjoying a day out, even though it was bloody freezing!

It seemed a far cry from the previous weekend when I was quite honestly feeling helpless that things had not paned out as we had hoped.

Anyway, The Chiefs beat the Quins in a great match, two points in it and my loyalties to Exeter were tested with a certain Physio working pitch-side and spending a bit of time on the pitch.

Simon has today got back onto the chemo treadmill, so 6 hours in hospital receiving treatment and will for the next 48hrs be attached to a pump. He is certainly not feeling the love for it all tonight. We will head down get through this week, we have next CT results which in itself brings a whole lot of anxieties.

I go through cycles of handling things and the life we have been dealt to feeling totally helpless and the darkness follows me around. We both have the pressure of work that pulls us both into its clutches and everything else. So we both need places where we can retreat, mine is my greenhouse, it’s a place I go to, put the radio on and do stuff!

As you can see I have been out here a lot! I’m quite impressed with my little greenhouse but now I need to start getting this little lot into the garden and the battle with slugs will begin. The garden is something we both enjoy, Simon is slightly obsessive about getting the grass looking right, and loves seeing the stripes on it when it’s mowed.

So that’s our life this week, we have a long weekend ahead of us being the Bank Holiday. As ever onward and upwards.

TTFN

Post Easter (part 2)

What a week! What else can I say.

Last weekend was a scare and a big one for the pair of us, but as always Simon has bounced back, not fully recovered but we are getting there.

So when I last wrote Simon was in hospital and he continued to be so until Tuesday. Sunday he doesn’t really remember a lot of, but then he slept most of the day. But I remember every second of it!

Monday I was sent a list…… “things I need”, now Simon likes a list and so I knew I had to remember everything he wanted/needed. No pressure there then. Pillow, socks, slippers, dressing gown, t- shirts, short sleeved shirt……. and so it went on. So off I went with my “packed full” bag on wheels, pillow under my arm. It was a relief to see him looking slightly better, and that he had eaten.

The drivers for Simon going home was temp back to normal, blood pressure and heart rate back to within normal limits, these through Monday all starting to return to normal and stay there as well.

Tuesday we made our escape and it was great to get him home, chemo is delayed by a week but actually that is better for Simon and gives him a break for a week. For the rest of the week we have had time at home together and have been for little trips out the house and doing normal things. We have today had Simons three monthly CT scan, these bring with them a heap of anxiety and fear, we have a 10 day wait for the results and to know if the chemo has continued to work. Finger tightly crossed.

Thank you for all the well wishes we have had, we are continually overwhelmed by people.

So we continue as normal, onwards and upwards Mr C.

TTFN

Easter what Easter (part 1)

For the past 20 weeks Simon has had chemo every two weeks, we have settled into the battle rhythm of our current situation and how we manage the side effects, treatment regimes etc.

The Easter break was something for us we looked forward to, it fitted in with Simons treatments and so we knew there were windows of opportunities of doing “stuff”, in fact I made a list of things we could get done in the garden, as the weekend got closer the weather forecast improved and so we had great expectations…….. however cancer always has a way of kicking us.

Thursday Simon had trouble with his stoma, not in a output way but he had developed an ulcer. We saw the lovely stoma care ladies at the hospital who in no time were able to give Simon dressings and treatment.

Friday Simon was not quite himself but it was bloods and Picc flush day, please note Good Friday (Bank Holiday for most of us) and the chemo team were in for a full on busy day. Simon was from first thing showing signs of being unwell. Fatigue didn’t just affect him it overwhelmed him, in fact he slept for a majority of the day. He didn’t want to eat (massive alarm bells in our house when we go off food!), Saturday the situation didn’t improve and to be honest we had frank discussions on getting advice from the hospital, in the end Simon agreed to call the following day if he did not improve.

Calling the hospital for help is something we always think twice about, however we need to make sure we are sensible with Simons condition. When he called they said they wanted him admitted. This all suddenly started to escalate.

So off we went again to Derriford, when Simon got out the car he actually didn’t think he could walk from the car to the ward, for the first time he asked for a wheel chair, then bit by bit we walked in.

Once we were in Brent everything began to dawn on us, and high temp, high BP, raised pulse ….. treatment for sepsis began. This is an on going story and currently the thought is this may be from his Picc line but this is still to be established.

So yet again I’ve had to leave my Cowlsy in the hands of hospital staff and once again this disease has thrown us a curve ball.

All sorts of emotions I am feeling tonight. I’m angry our plans were changed, I’m jealous that the world and his proverbial wife has been out in this amazing weather having fun and we have been in hospital (with, I have to say a lot of other people). We don’t do the “it’s not fair” conversation but however life’s a bugger at times.

So that’s our weekend so far, this is to be continued……..

onward and upwards Mr C.

TTFN

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