‘I thought I was stressed – it was a brain tu­mour’

Richard Pow­ell tells Eleanor Steafel what it feels like to live with a cancer di­ag­no­sis that seems to have come from nowhere

The Daily Telegraph - - Features -

When Baroness Tessa Jow­ell spoke so mov­ingly in the House of Lords last month, call­ing for greater col­lab­o­ra­tion in cancer re­search and more fund­ing for brain cancer treat­ments (for which out­comes have re­mained static for more than 20 years), her in­spir­ing words set into mo­tion a de­bate that last week saw the Govern­ment de­liver £45mil­lion in fund­ing for the very causes she had spo­ken up for.

Stand­ing in that great hall on a cold win­ter’s day, wrapped in woollen scarves and a li­lac cash­mere hat, the for­mer cul­ture sec­re­tary re­ceived a rare stand­ing ova­tion from her fel­low peers af­ter back­ing the Elim­i­nate Cancer Ini­tia­tive (ECI), which seeks to find re­search break­throughs through greater ac­cess to clin­i­cal tri­als, as she re­called Sea­mus Heaney’s last words: “Noli timere”, do not be afraid. “I am not afraid,” she said, “but I am fear­ful that this new and im­por­tant ap­proach may be put into the ‘too dif­fi­cult box’. I hope this de­bate will give hope to other cancer pa­tients like me.”

To­day, in a peace­ful home in south-west Lon­don, Richard and Mary Pow­ell know in­ti­mately the dread­ful bat­tle that Baroness Jow­ell and her fam­ily are fac­ing. Like Baroness Jow­ell, Richard’s di­ag­no­sis seemed to come from nowhere. At 55, he was a fit, healthy father of two who did a City job he loved that took him all over the world. He spent ev­ery spare mo­ment with his two sons (Conor, 21, and Joshua, 19) or out on his bike, bomb­ing around Rich­mond Park – one of the “Ly­cra devils”, as Mary jok­ingly calls him. But nine months ago, while hill­walk­ing in Scot­land, Richard be­gan to lose the abil­ity to speak mid-con­ver­sa­tion. “Richard just turned to me and it looked as if he’d gone a bit va­cant in his eyes,” Mary re­calls. “His mouth was twisted slightly to one side, and he was try­ing to make sounds.

“A shiver went down my back­bone. I’d never seen this hap­pen be­fore. But I thought maybe it had been an emo­tional re­ac­tion. I now know that the tu­mour is lodged in a part of the brain that af­fects your emo­tions.”

Richard was ex­pe­ri­enc­ing the first of what would be­come a series of in­creas­ingly dan­ger­ous seizures. He had been tired and emo­tional for a few days, but had put it down to a par­tic­u­larly busy time at work (his top job in avi­a­tion in­sur­ance meant he was re­spon­si­ble for teams in Lon­don, Europe and Sin­ga­pore). By that evening, when they re­turned to Lon­don, he was be­com­ing in­creas­ingly va­cant, and kept slip­ping into pe­ri­ods of be­ing un­able to speak.

Mary took Richard to A&E, where the doc­tor di­ag­nosed a stress-re­lated speech dis­or­der, and re­ferred him to the GP, whom he saw the next day. “She made an ap­point­ment with a neu­rol­o­gist, but that was for three months’ time. They were pretty sure it was some­thing psy­cho­log­i­cal, but they just wanted to rule out the pos­si­bil­ity that it could be some­thing dif­fer­ent. Can you imag­ine if we’d waited that long to get a scan?”

That night, Mary was wo­ken at 2am by the en­tire bed shak­ing; Richard was fit­ting vi­o­lently next to her. “One side of my body was knock­ing and I was chok­ing,” Richard tells me, sit­ting be­side his wife on the burnt or­ange sofa in their cosy liv­ing room. “Mary called one of our sons, Joshua, in to hold me while she called the am­bu­lance.”

“It was ter­ri­fy­ing,” says Mary. “I thought he was dy­ing. It was aw­ful. All I could think to do was to hold on to him some­how.”

Paramedics warned St Ge­orge’s Hospi­tal to ex­pect a pos­si­ble stroke vic­tim, as the symp­toms seemed to sug­gest. Half an hour later, a Cat scan re­vealed it was some­thing far more se­ri­ous. A doc­tor told Richard he had a brain tu­mour and, worse, its lo­ca­tion meant that it was in­op­er­a­ble. Doc­tors hoped it would turn out to be be­nign, but a biopsy two weeks later showed that it was a very fast­grow­ing, grade four tu­mour that, in just two weeks, had dou­bled in size.

“The on­col­o­gist at the Royal Mars­den said, look, we’re not giv­ing you any hope be­cause this is a very dan­ger­ous tu­mour, it’s not good news at all. But we’ll do our best for you,” re­mem­bers Richard.

This is the mo­ment that so many cancer pa­tients the world over will, sadly, be all too fa­mil­iar with. “The doc­tor has said to re­main cau­tiously op­ti­mistic, but that’s very hard,” says Mary. “Liv­ing with un­cer­tainty is the most dif­fi­cult part of the whole thing. You’re com­pletely lost and you’re search­ing for an­swers. You’re given a di­ag­no­sis that you might not be here at Christ­mas time. How do you fig­ure out how to pull the dif­fer­ent el­e­ments of your life to­gether? You go into shock.”

Telling their boys was, they say, one of the hardest things to do. “The first time we sat and talked about what it meant, we were all in tears. The boys were afraid of the con­ver­sa­tion, but af­ter­wards they said some­how it was a re­lief to have talked about the ele­phant in the room.”

Richard em­barked on a gru­elling round of chemo­ther­apy and ra­dio­ther­apy to try to shrink the tu­mour, which his on­col­o­gist be­lieves ap­peared two or three months be­fore his seizures be­gan. “If it had been on the other side of Richard’s head, it could have been taken out,” says Mary. “Yes, but the good news is it’s shrunk, it’s shrunk by half a cen­time­tre, which is great,” says Richard, cheer­fully.

Mary smiles at her hus­band, with whom she will cel­e­brate her 28th wed­ding an­niver­sary next month. “Richard is just…” she turns to him, wip­ing away tears. “You’re so stoic. He sees it as go­ing well. I see a very tired per­son go­ing through re­ally harsh treat­ment. Some­times I wake in the night and check that he’s still breath­ing. I know Richard some­times reaches out at night just to make sure I’m there, be­cause… the thought of some­one you love slip­ping away… you need a lit­tle bit of re­as­sur­ance.”

If they have learnt any­thing in the past nine months, Mary says, it’s that cancer is not a great “fight” as it is so of­ten de­scribed. “You just have to nav­i­gate it with what­ever in­ner re­sources you have, hold on to each other as much as you can, re­mem­ber how much you love the per­son, and know that you have friends.”

Richard has just be­gun his se­cond round of chemo­ther­apy, af­ter a rel­a­tively suc­cess­ful first round. In three months’ time, a new scan will show whether the treat­ment is work­ing – good news be­ing ei­ther a sta­bil­i­sa­tion of the growth, or fur­ther shrink­age. If the treat­ment goes well, Richard hopes to cre­ate some sem­blance of nor­mal­ity in the com­ing months and re­turn to work. “I hope to, but there’s no point me go­ing back and col­laps­ing. There are lots of ques­tions I don’t know the an­swer to.”

For now, Richard and Mary are try­ing to do ex­actly what the doc­tor has told them: to re­main cau­tiously op­ti­mistic. Baroness Jow­ell spoke of her wish to see suf­fer­ers “liv­ing well” with cancer, and that’s ex­actly what Richard, sur­rounded by his de­ter­mined wife and lov­ing sons, is try­ing to do.

“Our lives have been al­tered un­be­liev­ably,” says Mary. “The thought of not hav­ing Richard is just un­bear­able.”

For now, though: “It’s about just be­ing to­gether, and the re­lief that Richard is still here.” When I leave they are still side by side on the sofa, in the warmth of the house they have lived in for 21 years, their dog Lola be­tween them, as the snow falls out­side.

Richard’s story will fea­ture in 24 Hours in A&E on Chan­nel 4 tonight

‘The first time we sat and talked about what it meant, we were all in tears’

Tired and emo­tional: Richard Pow­ell, with wife Mary, has a tu­mour lodged in a part of the brain that af­fects your emo­tions

Liv­ing well: Dame Tessa Jow­ell, right, is back­ing the Elim­i­nate Cancer Ini­tia­tive

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