Setback Number ? We’ve Lost Count!


God damn Hickman line! Just when you think that a hospital readmission is a distant memory, the God damn Hickman will quickly remind you of who is boss!

In my previous blog, I mentioned how my husband was getting back into some sort of norm, working full time and looking more like himself – recovery can trick you into complacency.

It’s the middle of May and we are away from our house for the weekend. We both wake up early on the Saturday morning as the sun’s rays break through the bedroom curtains and the birds are singing outside – their dulcet tones pleading with us to get up and start the day. We both live for days like this – eager to enjoy every minute of nature’s beauty on an unusually hot spring day.

Two percolated cups of coffee later, we sit at the breakfast table discussing what we’re going to do that day while the children are still in that blissful Saturday morning lie in state upstairs. My husband is on his third Hickman line – a dreadful line protruding from the chest where treatments can be given and blood extracted without interfering with a vein. It is a constant reminder that all is not well. I have the onerous task of flushing it out and changing the dressing every week. It’s not a job I particularly like to do for fear of infection. Each time the line is cleaned, you’re exposing it to the many possible infections knocking about. Although I must admit, I do rather enjoy slapping the antiseptic gloves on – I almost look like I know what I’m doing!

Cautiously my husband says, “I’m afraid that if you flush out the line, the infection that’s there will be pushed in.”

“Do you think so?” I almost second guess him. It is fair to comment that at this stage, my husband is acutely aware of EVERYTHING that is going on in his body – to the point of proving doctors incorrect when the origin of an anomaly comes up and there have been quite a few.

But the bloody Hickman has to be flushed out! I don the antiseptic gloves, slapping them in my, by now, comedic way and flush out the line. All well so far. We go about our day as planned but in 15 minutes that is to alter drastically.

My husband’s pallor takes on a ghostly shade and he has to lie down.

“I don’t feel well.” I think he’s joking to be honest.

“Are you serious? Stop the messing!”

His body convulses into a ‘junkie’ shake and sweat beads form on his forehead – cartoon like. He is shaking uncontrollably. I have not seen him in this state since his bone marrow transplant and it’s quite scary. I stare at him thinking, “This can’t be happening! We have a whole sunny day to enjoy!” I know what’s coming next.

“Call the hospital.”

I get straight through to the transplant ward and am told in a terse voice, “Bring him in immediately.”

We are a two hour’s drive away and I try to conceal the panic arising from within. My husband reads me well and immediately rings his brother to drive him.

“You stay here and let the kids sleep on. Stay until tomorrow. No point in you coming up to the hospital staring at me and getting stressed out. It’s just an infection. It’s not cancer. I’ll be fine.” Selfless and caring. My relief is palpable.

The brother he has called is the brother who had a rendezvous with Non-Hodgkin’s Lymphoma nine years previous. He knows the score and has been the one who my husband gravitates to when he’s at his sickest. He is there within minutes to rush my husband to the hospital – he knows how setbacks feel. I am grateful beyond belief.

I have a vision of this infectious bug lurking in the line – ready to pounce into action. Waiting for the magic flush. I imagine a spikey cartoon-like bug with three eyes, laughing hideously as it torpedoes down the line like a pro – navigating the final bend to dump its toxic infection into my husband’s blood. Mission accomplished.

Re-admissions to the hospital are soul destroying. We had slowly stepped back into some sort of normality – work, family life, walks, day trips – that you almost become blasé about recuperation. That you’re one step ahead of it. But a setback will very quickly shepherd-hook you back to wherever it wants – without warning. It’s crap!

He’s immediately hooked up to an IV drip and two antibiotics are pumped into him in the hope one of them will kill and destroy. Bloods are taken and sent to the lab for cultures to be grown. I imagine my little cartoon-like bug with three eyes, flailing around a petri dish, fighting for its life.

His hospital stay lasts five days – it seems like 10. You go into automatic mode of visiting. Sitting on the edge of your seat – trying to string out the small talk. Trying to talk up the hospital food which my husband says, “You wouldn’t feed to a dog.” Dinners lie untouched on his tray – gravy congealing on ‘steak’. Carrots, the foot soldiers of vegetables, are inedible. How can you screw up carrots? We walk to the hospital restaurant to eat. Everyone looks miserable. The sick in dressing gowns doing the hospital shuffle in their slippers wondering when they will escape. Neither one of us wants to catch anyone else’s eye. We just want don’t want to be here.

He’s in an oncology ward with three women. He’s quickly named Romeo by the dinner lady! His three ‘roomies’ are in various stages of cancer and chemo treatment. One lady screams out in pain during the night such is her agony with the disease. It’s unpleasant for everyone. But I want to scream myself – my husband DOES NOT HAVE CANCER anymore! Put him in a recovery ward with patients who are recovering. He has already done his stint with chemo two years ago and I feel it’s unfair to expose him again to it. But he just gets on with it – it seems to bother me more than him.

By day three, a decision has been made. Since the Hickman line is the source of the infection, it has to come out. That throws up another quandary. My husband needs the line for his photopherisis treatment as his veins are non-compliant. They scarper at the mere sight of a needle. It is decided then that an approach of ‘wait and see’ with a smattering of ‘fingers crossed’ and why not throw in a rabbit’s foot as an amulet, is employed to see if my husband’s recovery can carry on without the treatment. Two months later I still have everything crossed.

Day five – my husband has been given his ‘get out of jail card.’ This setback has knocked the wind out of him. He leaves with too many antibiotics – his stomach’s lining must resemble shipyard steel by now to have endured the thousands of tablets ingested. I am reluctant to countenance the side effects of the steroids never mind the antibiotics and the rest!

We’re home by Wednesday evening. He is absolutely knackered. On Thursday he gets up for work. He’s not going to let this get the better of him. He’s not fit for work but I keep shtum. This cancer gig and recovery separates the men from the boys. Like I said previously – his resilience is remarkable.


2 thoughts on “Setback Number ? We’ve Lost Count!

  1. Im glued to your blog. It sums up so perfectly everything I feel but am so deep in the throws og it with my husband that there is no time for me to figure out my feelings. My husband age 42 was diagnosed with a similar condition in July. Weve been through six months of treatment and into Jamess next week for transplant. Its so useful to hear your story. Yourself and your husband are amazing and by the sounds of it you are winning this horrendous battle. We have three young kids too and my own health issue. Its just a living nightmare. I very much hope you can out all this behind you soon.

    1. Ann Marie, I am so sorry to hear that you’re going through this. It took me two years before I could write my blogs as it was too raw. You have a lot on your plate at the minute. I hope you have family and supportive friends to help you through this. I am on tomorrow on Newstalk at 7.45 am with Colette Fitzpatrick to talk about the carer as I want to highlight that. I’ll email you privately and best of luck. Enda has been to hell and thankfully he is on the way back – Cliodna

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