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Tick tocking through the day

I am sat in my chair next to Simons, five hours in to cycle 6. Lyd Ward at Derriford is set out in bays of 6 recliner chairs, we always choose a chair by the window, not only do you see outside (weather permitting you want to look) but the window open gives you a steady waft of fresh air throughout your day. For a room with six patients and each one with a relative there is a silence like a library and other then the radio playing quietly in the corner you can hear is the tick tocking of the pump drivers, all working to their own rhythm, the tick tocking is broken with the occasional alarm and the nurses come in to change the bags of fluid.

Every time the bag of fluid is changed the same questions are asked, confirmation of name, hospital number and date of birth but today this routine has bought about a different response, why, it’s Simons birthday, and not just any birthday but his 50th. What a way to spend it, however, we had a weekend of family gatherings and cake prior today to ensure this momentous event was not missed.

When I say cake, I mean CAKE!

Though the family were together Simon was not feeling his best, it was always a gamble organising something when he was so far into treatment but we managed it.

So today……

Working our way though the day. Treatment is interspersed with snacks, music and films, the wonder of technology and how it can transform you to another place for a short while.

As I sit here what is staggering is the number of people going though this unit for treatment, all with families sat with them and people like me sitting listening to the tick tocks.

Onwards and upwards my 50yr old Mr C.

TTFN

Trims, suits and cycle 5(21)

Here’s the thing around all this madness, and this world that we live in, occasionally normality happens.

Do you remember the saying “a watched kettle never boils” well here’s a new one, “a watched head doesn’t lose its hair”, we knew one of the side effect of this chemo was hair loss. Well it went from, you will lose your hair, to possibly lose your hair, so like the never boiling kettle, like a pair of numpties we have sat and watched. Simons head has been inspected like some monkey and we have gone from “yes you are losing it to no it looks normal”. Don’t get me wrong Simon didn’t care either way if he lost his hair, but it has become better entertainment than watching Dancing on Ice. With all this watching in mind we decided to get his haircut this weekend. Now, Simon being Simon (rolls eyes skywards) he only gets his haircut in one place, Number 8 in Truro, yes that’s 120 mile round trip, however needs must and so Saturday we took the road West.

For someone desperate for a haircut he found the whole thing fab, if a tad tiring and so a snooze mid cut was the order of the day!

Once his thinning but not losing hair was sorted we then went to look at Simons favourite Truro clothiers Trevails, looking to spruce up his wardrobe, and find something for my sisters upcoming wedding we found an outfit that put the best smile on his face that I have seen for a while.

I think you will agree that this is a typical Simon outfit and he looks fab-u-lous!

All this shopping was a welcome break for us and actually felt like we were a normal couple shopping on a Saturday.

Monday came round quick enough and we were thrown back into normality for us and by 9am this morning were making our way to Lyd Ward for number 5 cycle of chemo. If you have never seen anyone go through chemotherapy then you have been very fortunate in your life.

Chemo is for Simon a 6-7 hour appointment where he is systematically given a series of drugs through his picc line with differing side effects that work in different ways. One of the first thing to be administered is piriton (IV), anti sickness and calcium. These have an immediate effect on him, mainly sleep, he goes from talking to sleeping in one very swift move.

He slept like this for a couple of hours, I leave him to go back to work whilst this happens. Once this has settled, and he has woken up he will watch films, read, chat to the amazing nursing staff and generally wait for the bags of drugs to do their thing. He is attached to a pump for the next 48 hrs and generally is able to function normally around bouts of nausea and tiredness.

Number 5 is now underway, after cycle 6 Simon has a CT scan booked, this is going to bring a whole lot of anxiety with it, but until then it’s carry on as we can.

Onwards and upwards

TTFN

Just rolling with things…. and living!

So it’s Sunday, there a chill in the day but for once it’s not raining. I would like to say it’s springlike but according to the weather reports there is a beast from the east due this week…… Simon and I both love snow and so the possibility of some of the white stuff being around adds a spring to our step. I hoping I will be able to post snowy pictures and all things white.

We are in the middle of cycle 4, I say in the middle but all the drugs have stopped however the effects are real and the middle weekend of the cycle brings a host of effects, fatigue, skin changes and these few days Simon struggles with the emotional rollercoaster. So we just roll with things and see where things take us.

Yesterday we shopped, had our usual Saturday breakfast in Tavistock and pottered. When fatigued Simon has a plethora of books etc to read…..

In the quiet of a room the world can seem a distant place.

Today post breakfast flourish of activity, whilst the energy levels and weather let him, so between cups of tea and regular sit downs there is a lot to do…..

The cars get a well needed clean, disappointed he started with his and not mine……

Simon has continued to work through this chemo regime, I am staggered by his resolve, concerned that he is doing to much, but above all proud of him every day that he gets up in the morning and gets himself to work. Work is normal, work is keeping life normal.

We have been writing this blog for nearly a year now, in fact it’s coming up for the anniversary of us making our way to Basingstoke. That was a life changing time for both of us which almost seems a life time ago. The blog was and is an outlet for us and somewhere we can give an insight into life with cancer, and life living with someone with cancer. To date 24,000 have read the pages of our ramblings and I thank you for that, thank you for the support and messages as we have meandered our way through this. We have a long way to go and I am thankful to have so many people with us, there are days and nights where we can feel very alone, days we want to be alone, and days we want to live, and we will continue to do that.

So as ever, onwards and upwards Mr C.

TTFN

Saturdays are for doing …..

Following on from my earlier post I wanted to show you how we brush ourselves down, kick our own butts and do “stuff”.

We started the day in Tavistock, we love our Saturday morning mooch in Tavi, we do this every week. We had an impromptu coffee with friends we met, thank you Jock and Julia for your company.

We we ventured into Plymouth for a bit of shopping……

Just to prove it’s not just men that suffer shops.

Then we went onto to eat.

It’s no secret we LOVE our food, a quick meal followed by a drive home via Plymouth Hoe.

Then …….

Its all got a bit much, fire lit and fast asleep. Today has been a good day, we have felt positive, even in the drizzle. It’s days like today that we notice things, and we live for today.

It’s is a good day. Tomorrow will be prep for the week as Monday is cycle 4 day, so it’s prepare food for the week, catch up on a bit of work and just be……

TTFN

Easing into 2019…. spots n’all

I take it all your decs are down and put away, house looking empty and Christmas feels like a lifetime ago!

Happy New Year to you all. Our Christmas seemed to fly by, relaxed by the fire, watched films and spent some time recharging the batteries.

New Years Eve saw the start of cycle 3, Simon tried to bring the NYE party to the chemo unit…..

I promise you he didn’t drink the gin, and neither did I…. well not on the ward but once home that bottle had my name on it.

So we didn’t party, or even stay up until midnight (part animals through and through).

This chemo has bought about different side effects, some not visible but one of the side effects of the Cetuximab is a “rash”, this has turned out to be quite a bit more than a rash.

The rash arrives after a few days of chemo and will go within the week for the cycle to start all over again. We knew it would happen but Simon never does things by halves and he certainly has had a reaction. This reaction is caused by the immunotherapy drug and our take on it is if he gets this side effect it must be doing something and so as always that’s the positive of having a nearly 50 yr old husband look like a teenager.

We have through the past three years since Simon was diagnosed tried to keep a positive stance on everything however over the past few weeks we have allowed this pesky disease to creep into the dark parts of our minds and take control. This has been terrible on us both, it’s a long mental game where you have to keep control of your wits as like a controlling demon this disease will want to control you. There are certain reasons for this:

1. Cancer is a bastard, no other word for it!

2. It’s winter, darker days and longer nights. The nights are Simons nemesis. He hates them.

3. Everyone is planning their year, holidays etc and we are again in a hiatus and waiting.

We have the ability to change this, to drag ourselves out of where we are. We both work, yes, Simon is working the days and hours he can. We both are career people and have job roles that we have worked hard to get, but they both have a considerable amount of stress attached to them. However, our work keeps us grounded, in reality it is normal life. Without this we would both be on a different place, probably rocking backwards and forwards on the settee.

We have decided we need to plan, small trips, meals out and treats to break out of the hold this disease has on us. So watch this space and I promise to post pictures of us out having fun……

Onwards and upwards, TTFN

Merry Christmas from us both.

It’s that tinsel and turkey time of year and we are quickly getting to the main day.

I remember last Christmas and wondering what the year would bring knowing Simon was being referred for surgery at Basingstoke, now those days seem like a lifetime ago and different challenges fill our minds.

Cycle 2 has been completed and Simon got through this pretty well, however the last 24 hours the effects of the chemo has started to affect him. Firstly, hair thinning, just a slight change but it’s there. Secondly, his skin, we knew the side effects of the additional treatment was that he could/would get facial and back acne, his skin is now changing. These are things that we can deal with and like everything else we will.

The mental strain is all but real and that is for both of us, we will get through this.

Our plans for the big day are completed. Food shopping completed and presents all wrapped. Just must remember to get the turkey out of the freezer…..

Thank you for following our year with us, the story will continue into 2019. Onwards and upwards Mr C.

TTFN and Merry Christmas 🎄

The life line…..

This week we are inbetweeners, as in between Cycles 1 and 2. Like all treatments before we had an appointment with the oncologist to “see how things are going” etc.

Simon gets anxious about these appointments, as if they are going to surprise him with some dastardly details that we didn’t know about.

However, this week we were thrown a lifeline. The clever people in the labs at the hospital had been testing the samples from Simons original tumour to see it there was a mutant gene (no ninja turtles), if there wasn’t then they could add an additional drug to the chemotherapy cocktail they were already giving him. The good news for us was Simon was not a mutant, or rather the tumour wasn’t. With this knowledge they can add this drug to his chemo regime. This one is called Cetuximab, this is a monoclonal antibody (apparently).

Here is a link to some official info on the treatment.

https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/cetuximab.aspx

This is a life line to us as the research and information we have read about this therapy is really encouraging. Like most drugs there are side effects, but we will take those if this gives us a better chance of fighting this disease. Another weapon in our armoury.

So, cycle 2 starts on Monday, bring it on as we, as always are ready and we are bringing out the big guns. The hope is that three days of this treatment, and Simon gets a week to recover before the big day. We know with this cycle Simons hair will start to disappear, hats at the ready!

TTFN

Picc Lines, Pumps and paraphernalia……

Yet again I am writing to you to talk about chemotherapy, and the past week. This has been cycle 1 of a new regime, but really it’s cycle 17 if you take into account this is the third lot of chemo. Where as Simon has previously had infusions and mountains of tablets this time the dreaded chemo is administered via Picc line. We thought this might be cumbersome this has actually worked really well.

The Picc line is fitted easily, and with very little hassle. Picture below is it being fitted.

This will stay in situ for the 12 weeks of chemo, flushed weekly by the lovely nusrses on Lyd Ward

This chemo regime, FolFox, is given over three days; day 1 infusion on the oncology unit, and then Simon is sent home with a pump for the next two days.

I’m not saying my conversation was boring but Simon has a multitude of programmes, films and random documentaries to watch, it passes the time away and ensures Simon drops into his own world and away from the comings and goings of an oncology unit. So for this session the wonders of Deutschland 83, Apollo moon landings and speeches of Tony Benn kept him occupied, thank god for headphones I say!

Side effects of this cycle was always going to be minimal to start with (when compared to 2-6), waves of nausea were the greatest side effect, abdominal pain and Little Simon (his ileostomy)particularly objected to the medication.

Saying this Simon worked from day 3, no matter how rubbish he felt he got up and went in. I think the biggest side effect we have had is when he stopped the dextromethadone (steroids) which he takes to counter the chemo but when they stopped he crashed emotionally and mentally. This is a known side effect and it appears other chemo patients have had the same thing, something to discuss with the oncologist I feel.

So numero uno is done, and for cycle 2 we expect an increase in symptoms and a decrease in hair, so expect to see a shot of random headgear, and so we carry on this bloody battle.

It’s not all been bad though, the house is decorated inside and out as we prepare for Christmas, and we have spent quite a bit of time picking one of our cats out of our Christmas trees, Derek has found a fondness for the front room tree and posed beautifully for me.

So as we move onto cycle 2 and Christmas the fight continues.

Onwards and upwards TTFN

Here we go again……

Sorry it’s taken a few days to get back to you, but here goes.

It’s always a concern when the oncologist starts a conversation with the phrase “well, it’s more complicated than we would have wanted it to be” trying not to go into panic mode we pinned our ears back to listen. So here is the picture we have been given, three lesions in Simons lungs, lymph node in his neck and a rather menacing thing in his abdomen.

So where do we go from here, we have a plan, firstly Simon needs a Picc line fitted, this will look something like this:

With this in place Simon will have 6 cycles of chemo over the next 12 weeks, he is having 5FU (the FU part not wasted on our current mood) or otherwise known as FOLFIRI.

Once this is completed a re-scan and go from there with ablation on the lung lesions still on the table at this point.

They are also retesting the original tumour to add antibody therapy to the chemo cocktail.

It’s all very simple to rattle off the treatment plan etc but DO NOT underestimate the effect this has had on us. Utter devastation is an understatement, we had planned so much which has currently stalled. However, fortunately for Simon he has an obsession with hats which will come in handy over the following weeks and months.

So the blog is going to be more active than it has been, it’s going to be a place where we can tell you what happening, how we are and for me personally a place that I can share my feelings quite freely.

Let’s get a few things clear, we are not giving up, our dark humour is ever present and Christmas has certainly not been cancelled.

Dear Cancer, we are taking the fight to you and are ready.

Onwards and upwards, TTFN

The Show must go on…..

No one ever said this would be easy, and my god this year hasn’t been easy at all. As we got through the summer we thought there was light at the end of the tunnel, it appears though that the light at the end of the proverbial tunnel was a train coming the other way.

We knew that Simons CT scan was due at the end of October, this was to check for anything untoward, to plan his stoma reversal and to kick this year out. CT scan done and we went for results and to find out how we can plan what happens next. There is something about a Doctors face when they face you that you know somethings not going to go our way……. it appears Simon has some company in his lungs, in fact the company has company. As soon as they mentioned a trio of problems I think we both shut down and all sense of time and reason went out of the door. All I knew was that Simon was to have a PET CT scan to see if the three lesions were all there was, be discussed at the MDT (Multi Disciplinary Team) meeting and we would be seen in oncology in 4-6 weeks…….. in fact with the assistance of the lovely Radiology team and Maria, one of the Cancer Nurse Specialists, we have got this done in 2 weeks.

The past two weeks have felt like torture. We have talked, sat silent, worked and I have found the ability to cry just about anywhere, on the bus, in meetings, you name it’s happened. However hard these two weeks have been we have got to today when we go back for more results and a plan.

We are now sat waiting to leave for the hospital. Breakfast eaten and random 70’s and 80’s disco music playing round the house, it’s a bid to break the tension and distract us from whatever the day will bring. Jane, one of my sisters is coming with us, she came two weeks ago and tried desperately to speak reason to us, but she was unable to get through the fear, and quite frankly the desolate feelings we both had. She is brave to agree to come back for round two but I need her to listen with us.

So, I will report back for part 2 later today. Onwards and upwards Mr C.

TTFN

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