Why the blog?

Short Sharp Scratch is a satirical and uncompromising blog charting one man’s adventure with cytoreductive surgery.

The aim of this blog is to chart my passage (not my back one) as I undergo complete cytoreduction surgery in connection with a recurrence of my bowel cancer. It is primarily intended as a medium by which Ali and myself can update family, friends, colleagues and anyone with a passing interest in this particular surgical procedure. To that end I hope that it will prove useful as a support page to others who are currently or in the future undergoing cytoreductive surgery.

Holding our nerve

There are many twists and turns in this cancer “journey” ( I actually hate the term journey but for now I cannot think of any other thing to call it).   When I last left you we were waiting for the results of Simons CT scan which was done following an increase in cancer markers.

Time dragged waiting for the call,  the difference in the current times is that we had to forego a face to face consultation and this was done over the phone.  We have a good relationship with Simons oncologist and I know that we have to operate in these ways currently but it was not the same,  and I feel he felt the same. It must be incredibly difficult for him to give negative news over the phone, but as always Dr S gave us his time and expertise.

So the detail of the results,  Simon has seven tumours/nodes currently, in the scan 2 months ago three of the lung tumours had started to alter and grow.  Now, all seven are growing,  they appear to have all woken up from their chemo induced slumber and have started to do what we dreaded they would do.  We were expecting at this point to be put back on chemotherapy but currently that is not going to be an option.  I just need to clarify at this point that even though due to COVID19 there is a stop on new chemo treatments unless absolutely clinically required this is NOT the reason no treatment is going to be given at this time.    The treatment options available for Simon are limited, and when I say treatment I do not mean curative, we are trying to hold things if possible or slow progression. As Simon is feeling the benefits of being off treatment and is feeling well the team do not want to start treatment until it really need to be started,  its a bit like Russian roulette but we are having to hold our nerve a bit. They need to take advantage of its effect and we need to hit the cancer at the optimal time.  This chemo can only be given for a relatively shorter period than his last regime and so timing of starting is the essence.

The hospital team are going to keep a close eye on Simon, so its blood tests every two weeks, chest x-ray in four weeks, phone consultation in four weeks and repeat CT in eight weeks,  this way if things are getting out of control we can reassess the situation.   We are buying time with this,  whilst we have Simon in the best health he has been in for 12 months (apart from the magnificent 7 growing in him) we should be enjoying life, making memories going places……….oh hang on a minute we are on lockdown.  This is a cruel twist of fate that we have Simon feeling good, I have retired, we have a camper van on the drive and we are stuck.

I feel frustrated for us both, whilst we are so fortunate to have a beautiful home and garden, I can see every day the effect this is happening on Simon,  making memories does not always have to be done away from home,  and we are making the best of things but I would dearly love to be away in our camper van, seeing family.  We feel deprived of family time,  time that Simons children can spend with him.  Both our families and Simons Mum and Sister have not been able to spend time with us.

These are challenging times for everyone, and the world we now live in is different, and will remain so for a long time,  this time has affected us all.

We have no bucket list,  we have no grand desires, we just want to do simple things.  Sadness and fear take over us,  nighttimes being the worst time for Simon where he gets gripped with fear.  I feel lost at the moment,  scared of the future, being on my own and mostly being without Simon,  I try to put those fears to the back of my mind but they haunt my dreams.

We decided a week ago that even though Simon is one of the “shielded” people we would take advantage of having Dartmoor literally on our doorstep.  We can walk onto the moors from our home and do so for up to an hour every day, even the days when we do not feel like going out, we go.  The moors is perfect for our mental health,  we feel the fresh air, we are watching the lambs and foals appear and this has generally saved us.  We count ourselves as fortunate to be in this beautiful part of the Country.  It is also a place we can very safely go and see and have contact with no-one.  Yes this was a risk but actually the benefits far outweighs the risks to us.

We are watching and waiting to see what happens in the coming weeks, we are hoping that things do not grow too quickly and when restrictions are lifted a little we can venture a little further.  We know when Simon goes back onto chemo it will be a tough cycle regime and so his health will deteriorate with the treatment.  We await restrictions to be lifted, we keep Simon well and look forward and not back.

As always, onwards and upwards my Mr C


Living in Lockdown & Beyond

Wow! Doesn’t it feel like we are in the middle of some disaster movie, and you wake up every morning thinking you have had this weirdest dream and then realise this is reality.

I have never known anything like this and never want to again,  at the beginning of this year I do not think any of us could have seen this coming.    I think this will change our lives forever, the number of people affected and who have sadly lost their lives is a staggering number and our hearts go out to all of them.

Usually we see our families a lot and not seeing them is very difficult.  We have used video calls to both our Mums and family members which is a great way of keeping in touch and seeing each other.

We had before the initial lockdown started to reduce how we were socialising and also taking care where we went.  Mostly I did the shopping to reduce the risk to Simon and he just went out locally and to families houses.

However we then received information that he was one of the identified 1.5 million high risk people,  it was quite surreal even if it was not totally unexpected.  it was via text message on the Sunday evening simply saying he was a risk, to log on and register with Gov.co.uk.  It was a strange moment and one that was unsettling,  Simon was now going to be housebound for 12 weeks at a minimum. The following day I went to do a needed food shop, but just by doing that it meant that we had to separate ourselves for 14 days, this meant sleeping, sitting, eating etc.  We are very fortunate that we do have room but Simons mood dropped at this thought and so a radical move had to be thought of.

When we began this lockdown we had been booked to go away in the van and so I said “why don’t we set the van up on the drive, with awning etc, it will make us feel like we are away.  And so this is what we did, Simon actually slept in the van, the neighbours thought this was highly amusing.

Some things were organised really quickly, our GP practice phoned and trialled video calls with Simon, they also put arrangements in for prescriptions to be done over the phone and that they would be a priority for him.  The Oncology team changed his appointment to a telephone appointment which duly took place.  We had decided for Simon to have a three month break in treatment, this was with agreement by the Oncology team and something they recommeneded by them due to the effects of chemo on him.  The plan was that he would have a scan in May and see from that result what the next plan is.  This comes with anxieties as to what is going on inside him during this time.  I cannot stress how the mental anxiety if the greatest issue now for Simon,  his side effects of the chemotherapy are reducing, fatigue still blights him but he is getting around and able to do so much more than he was, but his mental health is something that we deal with on a dai

Whilst his healthcare needs were met the one thing we had difficulty with was food shopping,  as a high risk person we were told that Simon would be given priority food deliveries from supermarkets, this has been a challenge to arrange,  we did receive the Government food parcel,  this was a great surprise.   Whilst we were waiting for the cogs in organisation between Government lists and supermarkets to get things sorted my sister did a food shop for us. However after two weeks and some media interest we have managed to succeed in getting slots for food delivery.  This makes life easier and whilst I am extremely grateful to our family for helping us am glad that we have this sorted and so reducing the risks to family members having to go to supermarkets more often.

Like most of you we are enjoying the change in the weather and spend time gardening and really just pottering, we cannot do anything else and feel privileged to have some outside space to go into.  I do think our garden is going to look amazing this year.  This does not distract from the fact that we were going to use the time Simon was off chemo to have some camper van adventures and be free from hospital appointments,  the lockdown has put pay to that and it is very difficult not to feel bitter about our situation and cheated.    I know we are actually safe within the boundary of our home and are fortunate to have a garden to be in.

Until 6 weeks ago we were frequent flyers at the hospital and to suddenly have that break whilst was good in a lot of ways it actually creates anxiety, you feel suddenly adrift with no lifejacket.  This week Simon called to check on scan dates and follow-ups,  it just was going to give us a way point to feel more secure.  He was told that he his scan would be at the end of May however they would like a set of bloods including CEA (cancer markers) just to keep tabs.  The lovely Registrar said she would call us with the results.  This created a feeling similar to scanxiety, not sure why but we both felt anxious that the cancer markers were going to show something.  After a couple missed calls the dreaded results were in.  Simons cancer markers were raised,  in fact they were the highest they had been for four years.  This shows that something is growing, So an urgent plan for a scan in the next week is being put into place,  with the need to get Simon back onto some chemo regime quickly, we then hit a problem of Covid19.  With this a lot of chemo has been halted, new chemos not starting and the risk of chemo vs Covid19 needs to be assessed. On top of this we have been told Simons oncologist has changed,  new Consultant is looking through all of Simons notes. We will see what decision they make.

This news has been devastating for us both, we are scared and worried about what the next few weeks will bring us,  Coping with cancer is one thing but Covid19 thrown into the mix has given us an extra hurdle to work around.  So we live in lockdown still , marking time and waiting for the date and time of the CT, this will then have to be reported and a clinical decision on what happens next made.  We feel that time is against us and have so many questions.  As always we will regroup and sort out a plan.

Onwards and upwards Mr C


Waiting for Spring to arrive

I am like all of you we are fed up with this weather, when is Spring going to arrive and when is the rain going to stop. On top of everything these continuous grey days do not help the mood. for anyone. We have had days out,  have tried again to go away only to have the trips shortened by Simon not feeling well.  Saying that we are waiting for Spring the time has come again for Simons latest scan,  these three months roll by so quickly it appears.  Since Christmas I would say Simons health has taken a battering  and whilst we thought sit was the effect of chemotherapy we were hoping it was nothing else causing the decline in his health.  Whereas as year ago Simon would recover quite quickly between chemo cycles he was now hardly recovering, if at all.

We had an appointment with oncology the week prior to the scan where we met the lovely Leonie, she is Dr Sherriffs registrar and we have a good relationship with them both.  She raised a concern that the chemo was not making Simon quite “toxic” as he had been on the treatment for so long.  it appears that the side effects are getting to the point now that Simon is unable to recover enough and is likely to end up with him being seriously ill and admitted with side effects.  It is a fine balance between having chemo to keep the cancer in a stable place and the chemo actually causing harm now.

As we have said previously the run up to scans is an absolute nightmare of anxiety and tension,  we look at every symptom and feeling and try to second guess what the results are going to say.  So as we have done on quite a few occasions we trundled off to oncology last week.  We again  met with Leonie and we at first discussed the side effects of the chemo, how Simon was feeling etc and then we got down to the scan results.  We were hoping to hear the words “Stable” but unfortunately this was not going to be the case.

So, firstly the things that haven’t changed, the two nodes in Simons neck and the para-aortic node has not changed,  however the four nodules in his lungs have seen changes in three of them,  now this is minimal change but the view is that the chemo has started to not work as well as it was.  With the chemo regime and cituximab the drugs put breaks or a wall in the way of the cancer to grow, however cancer is a canny bugger and after a time will work its way round everything put in its way, and this is what appears to have started. Whilst we knew at some point this was going to happen it was all very surreal to hear.

We went in this appointment wanting to ask for a break in treatment, we thought of about 6 weeks but now we have other options.  The suggestion was we took a three month break from all treatment and for Simon to have another CT scan with a possibility of trying another chemo regime (possibly Lonsurf).  The second option was that we took the 6 week off and went back onto the current regime.  It was clear that Simon needs a break from treatment to try to let his body recover from everything, but the thought of having these changes occurring already and having no treatment for three months also had its own anxieties.  The oncology team are very clear that at the moment the chemotherapy is a big risk to Simon and a break is needed.  So our plan is to stay off chemo and see the team at the end of March to review the situation, however we feel returning to the current regime is not going to be workable as the side effects from it are getting worse and he is unable to manage these drugs.

Its been a week since we were told all this information and in this time Simon has not been well at all, today he has spent most of the day in bed and we know this is chemotherapy,  I actually never thought we would ever be having the conversations we are having about quality of life vs treatment side effects,  it is clear that if the chemo carried on like it is Simon has such side effects the quality of his life is seriously reduced. So we have some knowns and unknowns:


  • Of the 7 nodes and nodules Simon has currently three are showing signs off growth
  • The side effects of the chemotherapy are having devastating effects on Simons body
  • He has had 30 cycles of treatment in the past 15 months and a total of 46 in the past 4 years
  • Every day of the past four years Simon has made me proud to be his wife
  • We are going to kick the arse out of every day
  • We have a camper van that will take us on adventures


  • What the path will be in the coming months
  • What a scan will show with three months off treatment
  • If we will get offered another chemotherapy line of treatment
  • We haven’t and will never ask for time scales
  • When the sun will come out and the rain will stop

So we move onwards and see where the next stage takes us.  Whilst we allow ourselves some time for reflection on the whole are looking at making a load of memories and having fun.  (as long as coronavirus does not stop us in our tracks!)

As always onwards and upwards Mr C.



Angels in Uniforms and angel wings

Its strange that the New Year comes and goes and then life gets back to its routine again, already we are well into the second month.  I actually started this blog update weeks ago and it was going nowhere and I thought it was sounding like a diary and I was not putting down in this where our minds and lives were going and so I closed the laptop until I knew this would be a blog that I want it to be.   We started this blog two years ago when Simon was in Basingstoke for surgery,  we wanted it to be an account of the major surgery and treatment he was having in the hope it may help someone else.  We were at that time looking for a curative treatment,  this has now altered and the blog hs followed the twists and turns with us.   I am now signed off work until my retirement date, did I actually say retirement date, that sounds so weird.   Being home together is something we both love,  yes there are times when we have our own space, but mostly our days are together.

I am able to sit with Simon for the length of his chemo,  I would normally be at work and would see him on and off throughout the day,  its a time where you sit,  watch and the realities of the world you are in fall around you and can overwhelm you.

Lyd in the chemo unit at the hospital,  it has three bays, each with 6 recliner chairs in and a couple of cubicle rooms for individual treatment.  Simon always likes a window seat, which is a majority of the time available.  The Lyd Team,  I actually do not know where to start with this team,  they are all amazing,  we have been under the care of this team for some time and so know every single one of them well, but their care, attention to detail and amazing attitude to all their patients and each other makes such a difference.  They have made such a difference to us,  they do not only offer treatment but care, conversation and hugs when required.  We have got to know them and they have got to know us,  we are there twice a week and so it’s something that is going to happen. The team on Lyd make a difference to this whole experience for us, from the reception team, nursing team and Debbie the volunteer who comes around with the drinks trolly, we cannot thank them enough.

When we go for Simons chemo we have a bag of things that we need to take:

  • Blanket, Simon sleeps for a lot of his day and so like to rest his head on a blanket
  • Earphones, sometimes you just want to shut the world out for a while and listen to music or something downloaded.
  • iPhone stand
  • Numerous chargers for phones etc
  • Snacks, 7-8 hours of chemo and you need a distraction of food, so a selection of snacks and sweets come with us.
  • Drinks, bottled water and lucozade sport
  • Jaffa cakes
  • Medication
  • Change for car park
  • Spare stoma bag (you never know when you will need one)
  • Something to read

Every patient is different with who and what they bring with them, some come with no-one and nothing,  we prepare for every eventuality, and those that no Simon will know this is something he does for everything. Whilst you are sat there you see so many people whose lives have been altered, changed and shortened in some cases by the dreadful disease.  One of the things we do not do is engage in a lot of conversation with others, and it seems everyone really does the same,  we are in our own bubble, patients and carers/partners sat supporting, sometimes chatting or in silence.   Simon sleeps for a lot of his,  he has a reaction to the IV Piriton that sends him to sleep and so he sleeps for hours.  It is this time that I sit, crotchet, listen to music etc, but somehow this time and this experience is a personal almost intimate time,  there is something about watching him in a complete restful sleep.

The lack of conversation with other patients during this time is something that we prefer,  if you get a group of patients that chat there will be questions raised about your illness or diagnosis that no one wants to really discuss (there are a few exceptions)  However, Simon was having his picc line flushed and dressing changed a few weeks ago and got caught in such a conversation,  he was asked about his diagnosis,  how long had he got (!!!) and had he made his funeral plans, as he hadn’t he was told he should do them before he is on his last few days and its too late………. This resulted in one thing, I was waiting in the car and Simon emerged from the hospital distraught, anxious, fearful and every negative emotion. This conversation shook him.  I am sure these patients would not want to have upset anyone, they talked openly about there mortality and time they had left without regard that others wouldn’t want to be in on those conversations.  Its not that we don’t talk about such things as we do.  We know Simons life is going to be cut short by this disease, we have discussed this but this is done is short conversations when we are emotionally able.  We know at some point soon we will have to ensure all Simons wishes are set out but this will be done in our own time.   It was such a destructive conversation for him.

Simon and I are both avid Social Media users,  however one platform I use as support is Twitter,  Simon doesn’t follow me on Twitter as he knows that I am in contact with cancer patients or family of those patients.  I have sought comfort in knowing these people from across the country and a few abroad, asking advice, following their treatment and generally having contact with them.  However in recent weeks this group of people has reduced in number as they have passed away,  I have used several of these people as waypoints through this and finding this number reducing has been hard to handle.  We both have known people with cancer, not only the last four years and we have both lost close family members, however, now when we here of people loosing their battle against cancer we both feel a stab of pain, loss and the fear creeps back into our heads again. I am thankful that I have had contact with some truly inspirational people and their support though virtual is missed greatly.

So onwards and upwards,  life and our little adventures carry on.


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



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.


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.


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


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.


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


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