“Your husband has a brain tumour! It's a Grade IV Glioblastoma! Cancer! Inoperable! Incurable but treatable!”
These are the words no one wants to hear. Cancer! When you get news like this your world simply falls apart into about a million pieces. You're numb with shock. Cancer! Why us? What causes these things? No one knows. Cancer! The word reverberates around the room.
Then you start to digest the words. They can't remove it. They can't cure it. They can treat it. What is the treatment? If you can't cure it, how long will my beautiful man, Ron, live with it? The treatment is radiotherapy. This might stop it growing. On extremely rare occasions it shrinks the tumour, leading to a better prognosis. There is no forecast as to how long Ron will live with it.
The Radiotherapy Mask - 'Hope'
The First Signs of the Problem
Until six months ago everything was fine. Ron seemed healthy, active, fit. Suddenly, out of the blue, he had a fit. Then, an hour later, another very severe seizure. Right-sided paralysis was instantly obvious, but wore off within a few hours. At first Ron's speak was slurred but that returned to normal fairly quickly.
Within twentyfour hours we knew this was something serious. An MRI scan showed a mass in the brain, and a biopsy confirmed a Grade IV Glioblastoma – a vicious, aggressive tumour which, by the way, we nicknamed Adolf. The oncologist laughed at this.
The initial treatment is radiotherapy – six sessions over a two-week period. You wear a special mask during the treatment. It is fitted to your head and bolted to a table to ensure your head is always in exactly the same position. The mask is plastic. You can see and breath through it, but all the same it's not that pleasant. Once the radiotherapy ended they give you the mask. A somewhat gruesome souvenir. Some people keep them, others destroy them. We named ours Hope, pinned it to a wig stand and gave it hair and a fascinator. It's a brilliant talking point and seems to help people get over their reticence when it comes to talking about the Adolf, the cancer.
After treatment you wait three months for an MRI scan. The scan can't be done any earlier because all it will show is a very angry and aggravated tumour site. Nothing new will be learned until the tumour calms down. This takes several months during which you discover the 'ultimate stress diet'. During these three months I lost over a stone in weight while Ron slept all day and all night – that's what radiotherapy does to some people.
The three-month wait finally ended. Amazed, the consultant said the tumour had shrunk. Don't be fooled! This is good news but the cancer is not cured! It does mean the outlook seems better but there is still no forecast on life length. Adolf might start to grow again in the future. Apparently, most glios do. Who can say when? Non one will take a guess but for the time being we are once again in a state of shock.
And just because the tumour has shrunk doesn't mean the damage it has done instantly repairs itself. Adolf has left Ron with right-sided weakness, loss of balance, and extremely shaky hands. He can walk fairly well on the flat, but downhill is difficult. He can't straighten up sufficiently so the weight of his upper body, leaning forward, pulls him downhill too quickly. It's going to be a long, hard, struggle.
In all of this you still have to laugh. Ron tells people he's going to see his oncologist, his neurologist, and his ornithologist!
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Credit: Licensed under CC BY-SA 3.0 via Commons - In the UK we have some a government agency called Social Services. In our case this is a most social and welcome service. Help arrived in every form. Physiotherapists and occupational therapists visit regularly, working with him to improve his stability.
Social Services supplied rails on our indoor and external stairs. In the early days a walking frame helped Ron around the ground-floor of the house, but it is too wide to manoeuvre around the upstairs.
A brand new wheelchair arrived. It's very heavy which means I can only push it on flat pavements. The slightest incline and I'm snookered! Uphill is impossible and downhill is dangerous as the chair tends to run away from me.
A four-wheel pusher thing with a seat, a rollator, also arrived. At first, that seemed great.
Credit: "Rollator" by DirkvdM - Own work. Licensed under CC BY 3.0 via Wikimedia Commons - https://commons.wikimedia.org/wiki/File:Rollator.jpg#/media/File:Rollator.jpgUphill brilliant. Ron pushed it all the way to our local shops. The return journey was difficult. Ron can't control the rollator downhill because his right-sided weakness means his hands can't grip the brakes sufficiently to slow it down. Another nightmare. I have to hold on to him and the wheeler!
Credit: Copyright image by Frances Spiegel. All rights reserved.Another aid we have from Social Services is a bed lever. This device slips under the mattress and has an upright rail which Ron uses to haul himself out of bed. Every time he moves it squeaks like mad, but it certainly does the job and saves me getting up each time.
The best thing we've got did not come from Social Services. We bought it from a mail order catalogue – it's a 'HandyBar'. Credit: Copyright image by Frances Spiegel. All rights served.If you look in the doorway of most vehicles you'll see a door latch. The 'HandyBar' hooks into the latch and is used to help people in and out of cars. It also has a built-in window breaker and seat belt cutter.
Despite what seems to be a long list of negatives, there are some very positive things happening. The right-sided weakness is slowly wearing off. Ron is becoming stronger. He doesn't need the rollator for short walks. The wheelchair helps on longer outings and it's amazing how many people in the street will help on inclines.
Angels and Miracles
Do you believe in angels and miracles? We do now but we didn't before. Adolf has shrunk for the time being. That's certainly a miracle. Ron is improving slowly and we believe his guardian angel is watching and helping.
We have no idea what the future holds. We're under no illusions. In the meantime, we've just celebrated our forty-seventh wedding anniversary and will continue to celebrate anything and everything when ever we can.