Trying to figure out how to do this is confusing! However am going to try this and see how I get on!
Being as I am a nurse, the journey I have been on with my husband as a result of his brain tumour, has taken me on a journey that I have witnessed many many times in my career. Its put me in a position of where I have wondered many times of how to approach, support and care for people both of the patient and spouse perspective of how it must feel, the different emotions that a person experiences when they recieve bad news.
I now know.
For me, the most frightening part of it was diagnosing my husbands tumour. I actually recongised what was happening to him. The week that it happened we meant to have gone to Spain to spend a few days with my sister. It was only the Ash Cloud that prevented us from going. If we had got on that plane, my husband would proberly have died. Thats a fact. Strange how things work out. Then of course we spent 3 whole days together in Woolocombe on a short break we managed to get instead of Spain. It was on that break that I saw my husbands symptons. The unusual headaches, the confusion of word meaning- he'd say coffee and mean tea stuff like that. I remember at one point looking in the mirror of our caravan bedroom and trying to suss out what was happening. I knew it wasn't a stroke- he had full use of his arms and legs- I then found myself thinking..'Is it an infection? or.....I hope to goodness its not a brain tumour'. I was already thinking about it.
Then came that day- what I now call the worst day of my life. 22nd May 2010. When I knew I had to do something fast. We had gone to the garden centre after having got back the day before- I had planned to make him go to the doctor on the Monday. However at the garden centre, we went to get in the car, he said to me-' Shall I drink?' I said 'Pardon'. He repeated it- I said to him- 'Do you mean shall I DRIVE?'- He said ' Thats the word!' I then knew that I had to get him to the doctor THEN!. The rest just rolls into one. The GP who saw him, referred him to our local neuro hospital, he was scanned and by 6pm- we had a diagnosis. He had a brain tumour. We then found out the next day that it was a malignant brain tumour- that he, even with the operation, chemo and radiotheraphy - as his was a glibastoma mulitforme grade 4- the tumour was likely to grow back within two years.
We are now seven months on from that day- in fact nearly 8 months! Its strange because when I look back on the journey- I feel for US life is ALMOST back to normal! Note the word ALMOST! Intially when my husband came home, he was dependant on me a lot of the time. He couldn't walk far, he was very frail. He felt weak, and he was recovering from a massive shock really. He had had major surgery, was told his life expectancy was very uncertain, had lost his driving license for the time being, as a result he couldn't do his job, was no longer a joint bread winner so many things had happened to him. I had to help him through that lot! The thing is, its something that I WAS aware of as a nurse because of patients experiences and I have met loads of carers in the past, actually BEING a carer has made me a much better nurse! I've always been a communicator - as my husband says, I could talk for the whole of Great Britain! But I now know the difficulties that patients and carers face when dealing with stuff! I took 3 months off to look after my husband and we are extremly lucky in the fact that my husbands quality of life is very good. I know it is. I see people looking at my husband thinking 'Is he really sick?' yet there are days when he can just about get up and walk around the house. If I am at work, I have to phone him to remind him to eat, drink etc etc. I still arrange his medication for him, particulary his chemo. But we are very lucky.
As for me, the biggest impact on me is I have no time. I am so busy. Sorting out not just my issues but having to deal with my husbands as well. Our relationship has shifted too. We used to have little time together as we were both busy working as well as having our two grown up children around the house, and time together was precious. It is even more so now yet its weird! We bicker more now! Yet its an acceptable form of behaviour! We can snap and growl at each other if we are irritated and the other doesn't take offense! We have been married 26 years so I guess its part of the fact that we feel comfortable enough in each others company to be able to be ourselves. We don't have to pretend to be happy if we are feeling fed up and if we want to snap we can. But, each day we have, to me is so precious. Like the lovely walks we had with the family and the dog in the snow, the laughter and joking that we still share. We do laugh, we do enjoy life...in fact we appreciate each day even more now......
We both have completly different ways of seeing the future. Hubby says ' WHEN the tumour comes back' where as I prefer to say 'IF the tumour comes back' He says I am setting myself up to fall. I say that I prefer to deal with the tumour IF it returns. I am forever the optimist! Yet I do keep my views there to myself with him. He gets irritated with my 'Pollyanna' approach in the fact that 'Everything will be alright!' Its just how I deal with it. I think its down to the fact that over my career I have seen so many families experience sudden death and I appreciate the gift of time that we have. I know how fortuate we are.
I have changed as a person. Especially at work! I no longer take rubbish from anyone! I have become very outspoken and if someone upsets me- they know it! Straight away! I do try to put the brain into gear before I open my mouth! I used to hide any feeling and bottle it up. Not anymore! That person knows they have upset me and why. I think its good. It means that I don't bare grudges and also that it makes person aware of how they treat me. I also battle for every patient that comes my way even more so. If I don't know the answer to a question, quirey or worry then I don't rest until I find someone that knows that answer. Part of a patients/carers concern is lack of communication. If people are not given the information that they require that is when they can become agitated or in some cases aggressive. If health professional give the information that patients need it lessons the fear a patient/ carer feels and it actually makes the health professionals job easier! The RIGHT information needs to be given too. Some people want to know everything, some people DON'T want to know everything. The health professional needs to think about the individual.
We don't know how long this tumour journey is. I hope that we are one of the 10% that goes over that 5 year diagnosis. As I told my husband I would like us to share our 50th wedding anniversary! You can image his face when I said that! :) But seriously, I don't plan to sit around waiting for this tumour to come back. My husband is going to enjoy every bit of life he has left to the best of his ability and I plan to help him on every part of that journey. The health professionals that have given us this precious gift of time, I will never be able to thank them enough.
21st May 2011
Well- a year has passed. As I look at the time, this time last year, we were coming home from holiday and I was beginning to fear very much something was happening to my husband. It was a year tomorrow that I took him to the hospital and our whole world was shattered.
Steve has done so so so well. He has an almost normal quality of life in the fact he is independant, he can get on public transport, walk the dog, he does bits around the house, I am back working full time and have been since September. Steve is hoping to get back to work, all be it part time, and not as a driver but in a warehouse, and that should be happening soon. He is going to try it, and if he finds it too much, he is going to leave and be a house hubby. I feel very mixed feelings at the moment, I feel he may find it too much, but if he doesn't try he will never know. He gets really tired from time to time, and his word muddling is there. Its not any worse but its not any better. Its part of him now. He also gets odd reaccurance of his old symptons. His stomach has changed in the fact he can no longer eat the spicy foods he used to enjoy - i think thats down to the chemo myself. He gets really sick if he does.
I have found that I am very tired, tearful and also at times, reclusive. Thats hormonal and also due to the various pressures and things I have to do. I get knackered! ONe thing that has improved is that my daughter passed her driving test in April and it means she also can run her dad around places. Shes been a little star.
We've been to some lovely concerts and shows- saw the Lighthouse family, and Olly Murs as well as seeing Hairspray and we have got tickets to see George Michael in November and we are both really looking forward to that. We also have a couple of breaks in the UK lined up. I try to keep things short term- no more than 6-7 months in advance. We just don't know what the future holds so we are cautious but happy.
Both our daughter and our son continue to support and help us yet we are happy to see they are still carrying on with their lives as normal which is so important.
I so hope that this positive, no regrowth of symptons continues. Steves positive and fighting attitude is definatly helping me help keep strong. So many GBM 4 patients have had such different journeys than us and we continue to thank every single new day for arriving.
The words of a song from the lighthouse family describe our journey to a tee.
'when you are close to tears remember, some day it will all be over, one day we're going to get so high. Though its darker than December, whats ahead is a different colour, one day we're going to get so high.
Remember the day we were close to the end, wondering how we made it through the night,
it was me and you cos we are going to be forever you and me, always flying high in the sky love
Don't you think its time you started, doing what we always wanted, one day we are going to get so high, cos EVEN THE IMPOSSIBLE IS EASY WHEN WE HAVE EACH OTHER'
We are going to keep on fighting this Steve! You and me! x
