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
Jennie Wills
Awwww my heart goes out to you Ali, hopefully things will be different tomorrow xxx
Steve Boot
Hi Ali, sorry to hear about this set back (and the shit timing). Our thoughts and positive vibes with you amazing people as always. Let us know if we can do anything. With love from Steve and Marie xx
Ali
Thank you Steve, he’s been proper poorly. Hopefully he will be out soon xx
Carol Myrtle Hollett
So sorry to hear you have to be apart again. My heart goes out to you both. Hope they get him sorted and that he is home with you soon xxx
HoneyC
Sending our deepest wishes for a speedy recovery Mr C – onwards and upwards xxx
HoneyC
Ali take good care of yourself too – you know where I am this week if you need a cuppa xxxx
Gill
Hi Ali,
this is amazing because I was admitted to hospital on Wednesday, where I still am. It was an end of cycle weekend and we had arranged to go away and work on the garden etc. You know where this is going dont you.
I suddenly lost my voice. I keep a very close eye on my temperature and it suddenly exploded to 98.8. Immediately phoned helpline and they said IN, NOW. I had to summon ambulance, they are wonderful and know you get high priority as a chemo patient because SEPSIS develops VERY quickly. They also get you stable at home whilst passing into back to the hospital who are then aware of your impending arrival. Straight into oncology where blood tests confirmed the sepsis. Hospitals must begin treatment protocols for sepsis within one hour of your arrival.
I have now been taken off all chemo as the side effects are killing me rather quicker than the cancer but I’m in a very scary place with no safety nets now.
How have I learnt all this (apart from nearly 3 yrs of treatment?) Because last October I nearly killed myself because I didn’t want to bother the helpline as it was the middle of Sunday night and it could surely wait until 9am on Monday. Then I didn’t want to call an ambulance because that was for sick people. What did I do? I phoned my son at work 20 miles away who then got stuck in traffic. By the time he got to us I was throwing up and it took 2 of them to get me too the car. Half way to hospital, I lost my eyesight. By the time I got there it was wheelchair for me and I was in A&E but luckily called through quickly. My blood pressure wouldn’t register it was so low and very quickly I was in resus where we had the discussion about resuscitation, which they wouldn’t carry out on me. I was in there for quite a few hours whilst they struggled to get me stable enough to transfer to ICU where I spent the next couple of days. Then onto ward for a fortnight recovering but it was a long, slow recovery.
I’m sorry that this is such a long post, but I hope it may help someone else realise that you cant ignore these episodes, you won’t be able to spot sepsis but hospital will. Never, ever ignore the warning signs that you do get. The temperature is the big one and the extreme tiredness and feeling unwell are all other clues. I’ve now managed 3 bouts with sepsis. Please use Simon’s experience this time as your marker.
I’m sorry this is so long! But it just may be helpful to someone else in our merry little band!
Love and best wishes to you both.
Gill xx