Living with a brain tumour–

By Vicky Clews

It is said ‘there is a book in each of us’, well, perhaps this is mine.   Firstly I must emphasise that no two people have the same symptoms or levels of cures of cancer and I can only refer to the things that happen to me.

I do not know how long I had had my tumour probably quite a long time. I can look back now and remember things I did or said in the past that were not in my character but everyday life is so busy you don’t even notice them. As they say ‘hindsight is a wonderful thing’.

  My mother had noticed the changes to my personality quite some time ago. We had moved away and as she saw me at regular intervals and so she noticed more. The only problem was she did not tell anyone. Well we never like to upset people without real proof and she only had her maternal instincts. Never discount those instincts, they nearly always result in being the truth.

  I was very weird for quite some months with weekly visits to the doctors throughout the summer of 2004. I had lots of strange and wonderful symptoms, which I can laugh about now. If I was walking over rough ground I was unsteady. The school races at work were hilarious as I wobbled about all over the place. At work if my group of three year olds were sitting down they either had to make a path for me, or another adult would hold my hand to help me through, as I did not want to fall on them. (With my size I would have squashed them flat!)

  A horrible thing was not being able to stop when walking. I would suddenly know that my feet were not going to stop and I would have to throw myself in bushes or at trees or just fall to the ground. I have had a lifetime phobia about falling over with the thought of falling off a kerbstone the worse. You can appreciate how hard that time was for me. I suffered lots of cuts and bruises and the embarrassment of people thinking I was drunk but at least I stopped walking. The worse was at my granddaughter’s school fete as I had volunteered to help on the tombola stall. I was carrying a rather large box full of prizes ranging from various bottles, soft toys, ornaments and a whole set of very expensive china dolls. The noise of the box as I fell on it in the playground stopped everyone, including me. Thank you God that not one thing was broken.

  I knew that this was not right but couldn’t control it and I felt for husband Steve and daughter Anna. They must have been so embarrassed and of course desperately worried, as was anyone who knew and loved me.
  I think that my lack of control over incontinence was one of the worst things. I suddenly had no control of when, where or how many times I needed a wee. Once I knew I needed to go, that was it. I was barely able to hold on until we found a toilet. Poor old Steve was even more embarrassed than me. In the end I would have extra clothes in my handbag and every time we went to mum’s I would run in and borrow her clothes. That was after stopping at least three times on the journey down at the service stations, I know where the toilets are at every services on the M1 and M6!
I do remember the swearing episode, which began before I left Luton, so about three years ago. I just could not stop swearing, which as you know is usually only when Steve has annoyed me, and I want to kill him. I was using every swear word I knew especially the ‘F’ word. When I think back I could curl up in shame. I hasten to add it was never ‘in front of the children’.

 I had trouble with time and place as I missed appointments or was so late they were cancelled and I did not know how I kept missing them.

  I could not find my way about in the car I remember driving to go and see mum in Luton. I was happily going along when I realised I had not seen my usual landmarks i.e. the motorway M6 that takes me to the M1. When I passed by the breweries at Burton on Trent, I knew that it had happened again and I had no idea of where I was or, more importantly, how to get back. That is quite frightening. Luckily I still had enough about me to register road signs and recognise which direction I should have been going. So I was able to turn off at a ramp, go round and rejoin the motorway. It was a very long journey and a lot of mileage but I got to mum’s very tired but safe.

  I have found out since lots of things that I did or said that I have no memory of, usually all bad or awkward. As you can appreciate life with me and being with me was hard and the doctors were no further forward until Anna came in with me and told the doctor, ‘she loses concentration, is badly incontinent and talks gibberish and that I had gone senile!’ I thought, ‘What a thing to say about your old mum’. It did the trick though as the doctor referred me to the mental health team and after an initial consultation they made regular visits and telephone calls and then referred me to a psychiatrist. They were very kind and helpful apart from asking me each time ‘have you ever thought of harming yourself?’ The answer was always no, as by then I would not have known how to go about it and I’m not a suicidal type of person anyway.

  At one appointment I saw three psychiatrists in Cannock hospital and they all said I was sane. What a relief! They suggested a CAT scan, so off I happily went to Stafford hospital. By this time I really did not know what was happening to me. Apparently I had vomited all over myself on the journey to the appointment. Steve and Anna cleaned me up, dressed me in Anna’s top, she wore her coat and then sorted me out at the hospital. I didn’t even know anything about it until just recently! Thank God for my family.

  The scan showed a nice big brain tumour at the front left side of my head. The doctor explained to us what had been found and that I should stay in hospital. I was transferred that December night in 2004 to the West Midlands Hospital in Stoke on Trent by ambulance, of which I have no recollection. Perhaps they had drugged me, as it is quite a distance from Stafford Hospital. I know I had some funny hallucinations.

  I was very lucky as I was told that the Stoke hospital has the reputation of being one of the best in the country for head surgery and I had one of the best surgeons. I had to have a MRI scan which gave a clearer more precise picture of the tumour. The surgeon went through all the procedures with Steve, Anna and I, explaining that it might not be possible to remove all the tumour as it may damage parts of the brain that I needed in life e.g. sight and hearing. I realised that everyone was very concerned for my life but luckily I was unaware of the seriousness of the problem. In all the pre-discovery, discovery and after effects I did not once have any head pain.

  I had the operation on December 11th although the tumour could not all be removed. I came round and I knew that I was now thinking more rationally. I was in for three weeks where I had the best care and attention and made many friends with the staff and patients. Even the hospital food was worth having; there were the most delicious soups, which I had never tasted before. All my dad’s fault as he did not eat white food like chicken soup so therefore neither did I – I do now ! I came home on the 23rd December and Steve and I concocted a Christmas dinner - luckily I had a turkey joint in the freezer. Anna gave us the crackers and a very small Christmas tree with stars around it. We enjoyed a quiet day together.

I had to have 30 sessions of radiotherapy and as you know I am a pretty happy person decided that I would do my best each day to cheer the staff up. So everyday I went with a funny story, a joke or some useless information. I can hear you saying she’s got lots of that! The staff asked me each time what have you got for us today? After a short time they then told me their funny stories. We shared many happy times. I’m sure there is no better medicine than laughter.

  I started the radiotherapy on February 14th and ended it at the end of March. The results of the therapy and the tumour were having a slight hearing loss, slight tunnel vision and changing from being long sighted to short sighted. I was unable to walk more than a few paces and still very unsteady, my memory had big lapses and I still find names difficult to remember. I was lucky that the hospital arranged for me to have an extra banister rail, a special higher chair for the kitchen so that I did not have to stand to peel the spuds and a walking stick.

  I spent the next four months vegetating in a chair watching TV, but not taking anything in. It was a very lonely time as only a few past work colleagues and friends rang or wrote. A couple of them would pop in and my family kept in touch with calls and visits. Thanks to Steve’s sister Deborah for doing the garden.

A big wedge of hair fell out from across my forehead so I brought a wig. I don’t like even wearing a hat so the wig was quite uncomfortable but gave the rest of the family a laugh when they tried it on. I had 12 steroid tablets a day which made me look really fat. They also made me hungry, so it was three breakfasts a day. It is true that steroids are addictive as it took months to wean myself off them. I also had to take one capsule a day, and will do for the rest of my life, to stop me having fits. Then I discovered, purely by chance, Omega 3 fish oil capsules, and they have made such a difference in a very short time. I tell everyone about them and would like to get some shares in the company.

  If I went anywhere I was already self-conscious, as I had turned from being a reasonably plump lady into a fat, bald old woman. Adults would usually look then turn away quite quickly. Young children would stare and ask why did I look so strange? Teenagers would look, point, make some stupid cruel comment then laugh. The first two types were okay, but the last were very hurtful. A special lady from the local St Giles Hospice visited and helped me get information regarding my disabilities and told me of the weekly day hospice for people such as myself. I began to attend the Tuesday group in July and it is truly a fantastic place. The staff and volunteers are like no other apart from those from other hospices. They care, don’t smother, encourage and show an interest. They’re God’s angels on earth.

  Slowly my life has become more normal. I know I shall never drive a car again and I miss the independence but am fortunate to have kind people who offer me lifts. I will never walk a marathon, but never would have! I have been slowly lengthening my walks so now I can go to my granddaughter’s school and began this January one afternoon a week to listening to readers. I have missed the children so much.

I am happy to report, I am now much better and I am alive. I go for regular visits to see the oncologist and have to have ‘follow up’ scans. I will not, for the time being, have to have chemotherapy, as that or another operation will always be options for the future. I know that I will have the tumour for the rest of my life. As long as people continue to pray, support and love me, I will be okay and I try not to worry about anything and stay cheerful.   I had to have 30 sessions of radiotherapy and as you know I am a pretty happy person decided that I would do my best each day to cheer the staff up. So everyday I went with a funny story, a joke or some useless information. I can hear you saying she’s got lots of that! The staff asked me each time what have you got for us today? After a short time they then told me their funny stories. We shared many happy times. I’m sure there is no better medicine than laughter.

   A proof that I am making good progress with my illness is this article you are reading. Last year I could not have contemplated even knowing that cards are exchanged for Christmas, let alone take one and write it. I can assure you that at no time in the past year have I been anything but upbeat. I might get emotional at times but I always did so no change there! I feel so good now that I have even booked to go to Spring Harvest at Easter so it will be like old times with the St. Anne’s crew.

Be at peace with God.

Please chat as you normally would to cancer sufferers

My love to you all.