What’s can­cer mum?

Deal­ing with a par­ent’s ill­ness:

The Irish Times - Tuesday - Health - - Front Page - Sheila Way­man

When Au­drey Kin­dregan (39) was told that her can­cer had re­turned in 2014, her big re­gret is that she lied to her then nine-year-old son Oisín about it. “I lied be­cause I was afraid. We had fam­ily and friends who had passed away from can­cer. He was more aware of it. He’s very bright, in­tu­itive, he knew some­thing was go­ing on.”

Oisín was only six when Au­drey, a pri­mary-school teacher in Co Gal­way, was first di­ag­nosed with cer­vi­cal can­cer in 2011. A rou­tine smear had in­di­cated low-grade ab­nor­mal­i­ties and she was told to come back for a fol­low-up six months later, which then led to the di­ag­no­sis.

At that time, she and her hus­band Shane did use the word “can­cer” when talk­ing to their son about why his mother was go­ing into hos­pi­tal for surgery, but it didn’t really mean any­thing to him at that age, she says.

“We didn’t feel the need to have a big talk with him – he wasn’t ask­ing too many ques­tions. He knew I was go­ing to be okay – that’s what we told him.”

Au­drey had a rad­i­cal hys­terec­tomy in Fe­bru­ary 2012, fol­lowed by five ses­sions of brachyther­apy (in­ter­nal ra­di­a­tion ther­apy). “They thought ev­ery­thing would be fine then – they got it rel­a­tively early.”

So, when she re­turned to work at Scoil an Chroí Naofa in Bal­li­nasloe in May of that year, “I went on about my life think­ing ev­ery­thing was okay”.

How­ever, it is al­ways at the back of your mind, she says, and when she had some ab­nor­mal bleed­ing two years later: “I said to Shane, ‘I think it’s back’.”

She re­mem­bers she was pre­par­ing to do a chil­dren’s sum­mer camp when she was con­tacted one Tues­day morn­ing in July, 2014, with the re­sults of the biopsy, which con­firmed her fear.

“They wanted to see me the next day. I was a bit an­noyed, think­ing they’ll wait, I will go in on my own time.”

They had said come in at 11.30am and “I said, ‘I’m ac­tu­ally not avail­able at 11.30’,” she re­calls with an en­dear­ing gig­gle that un­der­lines her sense of hu­mour. “They con­vinced me to come in at 2pm any­way.”

It was af­ter that, know­ing she was fac­ing more treat­ment, that Au­drey tried to spare Oisín the truth.

She had been putting clothes in the hot press when she turned to him and said: “Oisín, you know when peo­ple have can­cer, some­times two years later they need to have in­jec­tions just to boost their im­mune sys­tems.”

He ac­cepted that, she says. But then peo­ple started send­ing cards, flow­ers and vis­it­ing and he be­came very sus­pi­cious. He was “lis­ten­ing at the door, pick­ing up half sto­ries and he was very wor­ried”.

She kept re­as­sur­ing him she was fine and, while she tried not to be in bed too much when he was around, the treat­ments that started in Au­gust 2014 were tak­ing a huge toll.

Worst ex­pe­ri­ence of my life

“I ended up get­ting chemo, ra­di­a­tion and brachyther­apy again, and it was hor­rific. The ex­ter­nal beam ra­di­a­tion was the worst ex­pe­ri­ence of my life. It was the area I had to get it done in. I was burnt out­side, I was burnt in­side, it was just hor­ren­dous. It was a big or­deal.”

She was re­gret­ting she had lied to Oisín, but felt she had to keep up the pre­tence. “I thought I was pro­tect­ing him and I wasn’t – he was all con­fused.”

How­ever, she didn’t want to ad­mit to him that she had lied. “It would have been im­por­tant for him to know I was telling the truth. We are very close.”

She had told him the “in­jec­tions” were go­ing to make her feel tired and as she strug­gled to re­cover from the treat­ment, she blamed the doc­tors for not want­ing her to go back to work yet. “I tried to ex­plain it all away and one lie led to an­other lie.”

By that Christ­mas, she was “com­ing around”, but “I was never nor­mal again,” she says, with­out any sense of self-pity. As some­one who has had to re­flect deeply on her own mor­tal­ity, she has an aura of down-to-earth hu­man­ity, see­ing through the triv­i­al­i­ties of life that pre­oc­cupy so many oth­ers.

When her mother died very un­ex­pect­edly in Jan­uary 2015, “that was an­other big hur­dle to deal with”.

Au­drey was aim­ing to go back to work in April 2016 and had just de­cided she needed an­other month off when she had more bleed­ing. “I shouldn’t have had more bleed­ing and I felt ‘here we go again’.”

Her gy­nae­col­o­gist knew from look­ing at the biopsy that it was can­cer­ous, be­fore a lab test con­firmed it. “My op­tions were pretty lim­ited at this stage. I had had the max­i­mum amount of ra­di­a­tion and chemo would only have been pal­lia­tive.”

The one cu­ra­tive op­tion was an op­er­a­tion called a pelvic ex­en­ter­a­tion, some­times de­scribed as a “sal­vage” pro­ce­dure. “They were go­ing to clear out the pelvic cav­ity essen­tially.”

This third time, she knew she had to tell Oisín the truth, and also that it had come back in 2014 too. He said he had sus­pected that and was very hurt that she had lied.

While Au­drey ex­pected to lose both her bowel and blad­der in the surgery, only the lat­ter was re­moved and she now uses a urostomy bag.

“That was very tough – I was a month in the Univer­sity Hos­pi­tal Gal­way. Then I was in a week in respite care in a nurs­ing home. Oisín al­ways thinks that’s funny – I was the youngest by about 40 years,” she gig­gles again.

That was Au­gust 2016 and re­cov­ery was slow. “It was hard to do any­thing at all. I am still not sup­posed to lift. I have pain in my hips, pain in my legs, pain in my pelvis.

We didn’t feel the need to have a big talk with him – he wasn’t ask­ing too many ques­tions. He knew I was go­ing to be okay – that’s what we told him

Kid­ney prob­lems

“I have ra­di­a­tion dam­age in my bowel, so they are talk­ing about pos­si­bly tak­ing my bowel out at this stage. I have lym­pho­doema in my legs.” She also has kid­ney prob­lems from the ra­di­a­tion and is on a long-term an­tibi­otic.

“I try not to take too many tablets be-

cause they can cause prob­lems in them­selves – the side-ef­fects, you have to take more tablets for that. I don’t want to rat­tle when I walk.”

A com­pli­ca­tion for their fam­ily lo­gis­tics is that Shane, an air­craft main­te­nance en­gi­neer, had to move from Gal­way Air­port when it closed in 2013 to Dublin Air­port to work. His em­ployer has been very good, Au­drey says, giv­ing him time off dur­ing some of the worst times, but he had to go back to work and stays in Dublin most of the week.

Bills

“Just be­cause you have can­cer, the bills don’t stop com­ing through the door,” she says. “He had to go back and that is the way life is.”

Au­drey de­cided dur­ing the past sum­mer she would go back to work too – and did in Septem­ber. “I did three suc­cess­ful weeks and then my kid­ney started play­ing up and I had to take some time out.

“The con­sul­tant didn’t want me to go back to full-time work but I am a bit stub­born and I like my lux­u­ries. I didn’t go through all of this just to be sit­ting at home for the rest of my life feel­ing sorry for my­self. And me be­ing up and about and go­ing back to work gives Oisín a sense of nor­mal­ity as well, and that is very im­por­tant to me. All through this he was my pri­or­ity.”

Au­drey had heard a cou­ple of years ago about Climb (Chil­dren’s Lives In­clude Mo­ments of Brav­ery) pro­gramme, for chil­dren aged five to 12 who have a par­ent, or sig­nif­i­cant other adult, with a di­ag­no­sis of can­cer. But the near­est cen­tre de­liv­er­ing it was Tuam, which didn’t suit.

How­ever, when she learnt that the East Gal­way and Mid­lands Can­cer Sup­port cen­tre in Bal­li­nasloe was run­ning the six-week pro­gramme for the first time last Novem­ber, she signed Oisín up.

Sim­i­lar cir­cum­stances

He def­i­nitely got a lot out of it, she says. “He got to meet chil­dren in sim­i­lar cir­cum­stances as him­self and it was a safe en­vi­ron­ment to talk about some­thing so threat­en­ing.

“They ex­plore feel­ings over the six weeks; dis­cuss cop­ing mech­a­nisms for deal­ing with each and how to recog­nise what feel­ings you’re hav­ing.”

Oisín too is en­thu­si­as­tic about it. “We did games and art,” he says af­ter he re­turns with his fa­ther as his mother fin­ishes the in­ter­view. “We learnt about can­cer – the three treat­ments: chemo­ther­apy, surgery and ra­di­a­tion and my Mam had all three. Ev­ery week we talked about an emo­tion. I do think it helped me a lot.”

Hav­ing seen how the pro­gramme ben­e­fit­ted Oisín, Au­drey did the two-day Climb train­ing her­self and will fa­cil­i­tate the next

pro­gramme at the Bal­li­nasloe cen­tre. “I wanted to give some­thing back and it was really up my al­ley.”

Mean­while, she is look­ing for­ward to cel­e­brat­ing her 10th wed­ding an­niver­sary with a re­turn trip to their hon­ey­moon des­ti­na­tion – Las Ve­gas. Re­la­tion­ships are tough with­out hav­ing to throw what she’s been through into the equa­tion, says Au­drey, who is “so grate­ful for all the sac­ri­fices Shane has made to look af­ter me”.

She takes life day by day, “ev­ery milestone that comes along, I am just happy to be here for it”. And she is al­ready look­ing for­ward to Oisín’s Con­fir­ma­tion next April. As a Catholic, prayer is im­por­tant to her, although, not sur­pris­ingly, she has had her “God, why me?” mo­ments.

But she sums up her ap­proach to life with the say­ing “we’re here for a good time, not for a long time”.

“I am used to be­ing sick, I am used to be­ing in pain and I am used to think­ing like that. I say it out to peo­ple and it shocks them but it is just nor­mal for me.

“I think there is too much se­crecy in re­gard to can­cer,” she adds, “and I am just not like that.”

My op­tions were pretty lim­ited at this stage. I had had the max­i­mum amount of ra­di­a­tion and chemo would only have been pal­lia­tive

PHO­TO­GRAPH: CYRIL BYRNE

Au­drey Kin­dregan with her son Oisín: a pri­mary-school teacher in Co Gal­way, Au­drey was di­ag­nosed with cer­vi­cal can­cer in 2011 and breast can­cer in 2014.

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