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.

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

Mr Ben, meals out and the Moors

The chemo continues every two weeks, there is a “battle rhythm” that we have got into. Day one (infusion day) is a 7 hour treatment in hospital and the only day Simon has off work. This is followed by two days on a pump that he has attached to the Picc line. We know that on days 6 & 7 Simon struggles with side effects that also affect his mood and mental health.

We have just finished cycle 10 (cycle 26 in real terms), one more cycle and then the next CT scan to see how things are going. So yet again the anxiety of that result is looming already. We won’t get that result until early May when we see the Oncologist next.

The side effects of this regime are tiredness and also the effect on Simons skin. His skin is sore, splits in fingers and toes and the “mab rash”. There is not a lot we can do for this other than the emollient cream. The tiredness comes up on him quickly and so often I find him like this……

We had our routine appointment with the lovely Dr Sheriff this week, this is a “how things going” appointment. We are now long termers in the department now, we know the staff, whilst it’s great to be known it’s also a stark reminder that we have been with them for them for three years now. You get sat in a consulting room waiting for the Consultant or his Reg to arrive, this is when a game starts. These rooms have three doors in them and it’s a “guess which door” they will appear in. When Dr S came in Simon relayed that we had this which door thing going…… “Like Mr Ben” he says and so our consultation started on the many hats of Mr Ben and the music that accompanied the programme……

The past month has been incredibly difficult, it’s an emotional rollercoaster and through all of this we are trying to keep our careers going. Work is a double edged sword as in it keeps us going and living a normal (ish) life but also both our chosen careers come with stress and pressure where as we bring work home and often work evenings and weekends to keep on top of things. Our evenings, once work and dinner is done, tend to be a crash in front of the TV and watch random programmes, however, we’ve had a date night! I know a proper date night, getting dressed up, booking a table and having a meal.

It felt normal and good, and the food was great, we love the Cornish Arms in Tavistock and it didn’t disappoint. We need to commit to doing this more often.

So we are now at today…… for Spring it was unbelievably cold and Simon decided we need to go for a walk…… we are so lucky to live on the edge of Dartmoor and so a wealth of places to walk. This afternoon we both wrapped up (as if it was winter!) and took on Cox Tor, the wind was biting, but we paced things at a sensible pace and got to the top. Simons face says it all, shear determination got him to the top.

We are doing ok, carrying on and trying to live the best life we can. We keep each other going, I have his back and he has mine. When the going gets tough the Cowls get fighting.

It’s bowel cancer awareness month this month, if you are concerned about your own health then please get checked out.

Onward and upwards Mr C.

TTFN

Music and Palaces and all things London

Sorry we haven’t updated for a while, so here is the first of a few posts to go on.

One of the things we have missed is our weekends away, not that we were always travelling somewhere but actually the freedom to say “let’s get away”. We loved our holidays etc and we have missed taking them. We haven’t been able to plan much due to several reasons, Simons treatment regimes, surgery etc has got in the way and also I think we lacked confidence in getting away. Our home has become a place of safety and where we can lock the world out. Work, treatment, home, repeat has been the order of the day.

However, for a weekend in March we escaped the West Country for an invitation that was too good to miss and we went to London.

The reason we went to London was to attend the Royal Albert Hall for the Mountbatten Festival of Music, suited and booted we had an amazing time and I think you will agree Mr C looked great.

The evening was amazing and everything we wanted it to be and a real treat for us.

This was our view from our seats:

So that was our Friday night.

Saturday we decided to embrace London and to be tourists f or a while. So off we went to the Royal Mews, walked the Mall, Trafalgar Square and then onto Covent Garden…… at this point it was as if Simons batteries were removed and he suddenly said he had enough. Being true to himself he would not let me get him into a cab but we went by tube back to the hotel. I’m not quite sure how we got back there but we did. Once back in the hotel he slept for three hours.

We loved our short break but this took it out of him completely and he was really unwell for days afterwards with exhaustion. We will know next time to pace things and give Simon time to recover from the exhaustion.

So that was London……. and the adventure continues

Colds, coughs and clots

I remember when I used to gauge a bad week in it raining, or Tesco’s didn’t have something I wanted, I would swap last week for one of those.

So where do I begin in this one…..

Since Simon started chemo we have been really careful about people being around him with coughs and colds, but this time of year it seems everyone has something and unless we shut him away or put him in bubble wrap it’s very hard to avoid the dreaded bugs, we had done quite a good job until about 10 days ago. Simon came home from work doing a remarkable impression of sneezy, and my god he sneezed!

This was a start of sore throat, cold/flu type symptoms and him genuinely feeling rotten.

When you start chemo you get a pack of information and in that pack is a card with emergency numbers and a list of symptoms that if he gets them he needs to phone the hospital. One of them was a raised temp, along with flu symptoms, etc. We played Russian roulette with a thermometer but no matter how many times we took it it was raised and so after a pretty hefty debate I called the hospital. We duly gave the symptoms etc and were told to attend Brent Ward to see the doctor.

Brent Ward is the oncology ward, we have never been on the ward and Simon has never wanted to be in it, purely because of the psychological effect of being on the ward and what being a patient on one could lead to. Being in this ward was a major struggle for Simon to deal with but thanks to the nurse caring for him and the Registrar who spoke to him they made this stay bearable for him. Once again the brilliant NHS staff have done their magic. IV antibiotics administered by the bucket load and within 24 hours Simon was home again.

We now had Simons CT to prep for, these are, as I have said in previous blogs, steeped in anxiety, fear and any other negative thought and feeling you can throw at them. His scan was early morning which was good and the imaging staff within no time had him in the scanner. We had already discussed how the results would be fed back to us, Simon wanted me to get them first and then relay to him….. sorted. Scan complete, Simon left and I walked back to the office. Within 30 minutes Simon was calling me, the radiology department had called him and could he come back to the hospital, present himself to ED as they had found blood clots in his lungs…….. another full day in hospital seeing Doctors etc, Simon will now have three months of clexane injections and in blood thinners for life. Apparently blood clots in patients with cancer is common and so this was actually reassuring. Still something else to get our heads around.

Scan results day!

Following all of this we had an appointment with the oncology team to discuss the CT results with us. Of the six tumours Simon has four have reduced in size, the oncologist was clear to say these are all small and a reduction in size is a really positive thing. So we move forward with another 12 weeks of chemo and then another CT scan.

This news is so encouraging and we take this with quiet reflection and move forward. Through all of this Simons drive and strength to get through this continues, he continues to work full time.

As always, onwards and upwards Mr C

TTFN

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