In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“I used to tell Mum ‘I love you’ every night in case they were the last words she heard. Mum’s last 10 months were the happiest Raymond and I had known her have since losing Dad and, to spend them together with her living with me was very special – I couldn’t have loved her more.”
My Mum was originally from Hornsey, North London. Her Dad owned a fishmonger’s on Holloway Road and used to rent out a room to American servicemen. At one time he rented it out to an American man of Cuban descent who was working at the American air-base in Royston. Jorge saw my mother, who was then about 19 or 20, emerging out of a pea-souper fog, heading for the fishmonger’s. He was immediately taken by her beautiful emerald-green eyes and later went back to Royston where he declared that he had met the woman he was going to marry.
When Mum and Dad got engaged, my grandparents expressed their wish that Jorge didn’t take their beloved daughter off to live in the U.S, but wait for a year to make his decision. Happily, they decided to stay in North London and, in effect, Dad gave up his country and family to be with Mum. I have a box of love letters that Mum and Dad exchanged while they were courting, which I haven’t been able to bring myself to read yet.
Mum and Dad were absolutely devoted to each other – real soulmates. She was such a family person, never more fulfilled than as a wife and mother. So it almost destroyed Mum when Dad died suddenly in 1997 after a massive heart attack. She never came to terms with losing him.
In July 2014, Mum was the victim of a “distraction” burglary. A man knocked on the door in fake uniform, carrying fake ID. He stole Mum’s wedding, engagement and eternity rings – all jewellery with great sentimental links to my Dad. I was heartbroken for her.
Mum wasn’t hurt, but three days later she fell on the way to the pharmacy to pick up a prescription. The pharmacy patched her up and she seemed OK. However, the next morning she felt pain in her left elbow so my brother, Raymond, called the GP out.
The GP thought Mum’s elbow might be broken so called an ambulance to take her to A&E at Barnet Hospital. It was confirmed that the arm was broken and Mum was put in plaster from her shoulder down to her knuckles.
We put the fall down to delayed shock following the burglary, uneven pavement stones, and being dehydrated. Mum didn’t mention feeling dizzy or having a headache before she fell.
Mum came to stay with me to recuperate as there was very little she could do with one arm and, after the burglary, I thought staying with me would boost her confidence. On top of this, I live in a flat and work from home. She had physiotherapy and I made sure she did her exercises, so her elbow seemed to heal quite quickly.
However, I started to notice that when she was getting dressed she would find bending her right leg very difficult; it seemed to have stiffened up. I did mention this to her physiotherapist and we assumed it was just her right-side over-compensating for the damage to her left elbow. Plus, she had had her left hip replaced in 2008.
In hindsight (a wonderful thing), I now believe that her right-side had not stiffened up at all, but had, in fact, weakened due to the tumour in the left-side of her brain, already beginning to affect her right-side. I also think the fall may have been a partial seizure.
Mum settled into a routine and seemed so happy that I discussed with her that maybe she should stay with me until at least the end of the year, or for the rest of her life. We also talked about selling her house and moving nearer to me and I know she was considering this
Mum did have a really bad headache one morning so she stayed in bed. Looking back, she had had a similar bad headache one morning in March or April of that year, but never had any vomiting. She sometimes complained about feeling a bit giddy when she took her regular walks around the block with me. I made an appointment for her to see her GP as I thought it would be a good idea for her to have a check-up, bearing in mind everything she had been through, as well as a review to see whether her blood pressure tablets needed adjusting.
Raymond and I planned for Mum to have a trial run back home over the weekend of 22nd/23rd August. On the Friday morning beforehand, I noticed her right arm twitching imperceptibly and wondered whether it was a trapped nerve. I sat Mum down, but when she got up again she found it difficult to walk. Fearing that Mum had had a stroke, I rang for an ambulance, while checking that she could talk and raise both arms. Her face appeared symmetrical, she could smile, talk and even lift her bad arm, but she kept taking her glasses on and off and putting them on the back of her head – just like Eric Morecambe used to do. I also noticed that she was holding her right arm slightly bent upwards, like a meerkat. She said she felt strange and told the paramedics, who did a brilliant job assessing Mum, that she could see sparkles.
Mum was taken to Northwick Park Hospital, which was quite far away, but it had a good stroke unit on standby. On arrival, Mum was still holding her arm awkwardly, although seemingly unaware of it herself. She was just about to be taken off for a scan when she had an obvious seizure that lasted about five minutes. She then had another one not long afterwards when she was being given her medication.
The medication seemed to do the trick and in the afternoon she was more lucid, could answer questions correctly, knew who I was and no longer thought I was 100.
After a long wait and a scan, I remember Raymond and I being told – quite brutally, I have to add – that it looked like Mum had a brain tumour and because of where it was, and her age, she would probably only have radiation treatment.
It was a huge shock to me – part of me knew that it probably wasn’t a stroke, but I thought maybe she had an infection or it could be the start of epilepsy or Parkinson’s. A brain tumour was just not on my radar. After losing Dad, I often thought Mum would end up either having a stroke or developing a form of dementia.
Raymond and I really thought we were going to lose her that very night.
Looking back, there were little clues to her having a brain tumour. When I examined the cash books Mum used to meticulously complete, I noticed that, from March or April of that year, her writing looked a lot less uniform and there were crossings-out. I remember that, having always enjoyed doing jigsaws, from around that time she hadn’t managed to complete one and complained that she couldn’t focus and felt muddled.
I also recall that when Mum was staying with me, I would ask her if she could make a cup of tea and she would turn the switch on where there was no plug in the socket and when pouring the kettle I had to be ready to move the cup towards the kettle or the water would go all over the worktop. She also couldn’t turn on and off taps so I changed the taps in my bathroom to make it easier for her. I put all of this down to being in a new environment, the shock of the burglary and recovering from her fall, but her hand-eye coordination was probably already impaired.
Mum was in hospital for two weeks where she was diagnosed with a GBM4 in the parietal lobe. She was 78. She wasn’t in any pain and we were told that they didn’t need to do a biopsy to confirm the diagnosis. Mum had had a deep vein thrombosis (DVT) twice, so there was a big concern that she would bleed profusely on the operating table.
After she was discharged, we had an appointment with an oncologist who said he wouldn’t recommend chemo or radiotherapy as there wasn’t much point if it wasn’t going to cure her. Raymond and I knew that she wouldn’t be able to go through all that, so we agreed that medication be used to manage her condition.
Mum simply said: “Oh well, I’ve had a good life and a very happy marriage”, which still makes me weep when I think of it, because not only did she mean every word, but she was able to just casually drop it into a horrible conversation.
I was able to look after Mum on my own, with the help of a Macmillan nurse and a district nurse coming in once a week. Raymond would come over every afternoon after work and at the weekend.
Mum’s medication kept her as stable as possible, although either the steroids or the tumour sometimes made her muddled and obsessed and she certainly developed an appetite. At times she could be child-like and quite funny; she would even use a bit of bad language!
She contracted a chest infection in December, from which, to my utter amazement, she recovered.
On a couple of occasions, there were tears – frustration and the tinnitus that she had been plagued with for years, but otherwise she was the happiest she had been since Dad passed away. She would look out of my big window in the sitting room and look at the birds or watch dogs being walked.
It was only in March 2015 that Mum started to deteriorate and sleep more. Since diagnosis, she had gone from using a walking frame to a stick, back to a frame and then to a padded commode chair, which acted as a wheelchair.
Then came a time in March when I couldn’t hold her up on the bed and I had to let her slip onto the floor. It took the paramedics over an hour to arrive, lift her and put her back into bed, although Mum had seemed happy enough on the floor, covered and supported by a duvet and pillows, asleep!
From that point, I had to get carers in, which was hard as I had to accept that the time I had left with Mum was diminishing and that the tumour was progressing. At first we had one carer three or four times a day and then later this went up to two carers four times a day.
For a few months now, I had been sleeping in the same bed as Mum, for her reassurance and to keep an eye on her. The night before a hospital bed arrived for her, I heard Mum whimper, which she tended to do if she needed to turn to her left – she could no longer coordinate that type of movement and I used to turn and hold her while she slept or until she was able to turn to her right. On this occasion, she managed to put her arms around my neck and kissed my forehead. I think she thought I was Dad.
The only saving grace was that Mum was able to take each day as it came. I don’t think she knew the dying process had begun as I doubt her brain was processing that kind of information. When she became bed-bound, I stopped work and I lived in the bedroom with Mum for two weeks, surfacing for food etc. when the carers or Raymond were around.
It was just after Easter when Raymond and I realised the end was near. She went into a deep sleep for 48 hours and then passed away very peacefully at around 7pm on 18th April 2015. I was sitting with her when I noticed her breathing had suddenly changed, but she found the strength and love to look at me one last time. I had rehearsed many times what I would say to her: I love you… Dad is waiting for you… Go with my blessing and I will see you again soon…
I had read somewhere that you should open the window when someone has died to let the spirit soar. I remember opening the window and seeing a robin on a branch very near the window. It was quite comforting as often when Mum was looking out of the window, she would say: “Look, there’s my robin”, or get upset when she couldn’t see her robin.
Raymond and I had to wait over two hours for a doctor to come and confirm the death and then another hour or so for the funeral director to come to take Mum. It seemed horrible at first to be sitting with Mum, but then I was happy that she wasn’t alone. When someone dies at home you aren’t spared the realities of death and its aftermath.
Mum had wanted to stay with me, rather than go into a hospice, and I believe she had as good a death as she could possibly have. She wasn’t in pain and her medication didn’t seem to upset her too much. I had thought she would be falling over having seizures, or losing her sight or ability to communicate. In that respect she was lucky, although lucky seems an inappropriate word for such a terrible disease.
I used to tell Mum I love you every night in case they were the last words she heard. Mum’s last 10 months were the happiest Raymond and I had known her have since losing Dad and to spend them together with her living with me was very special – I couldn’t have loved her more.