The start of the next fight

Sleeping was even harder than the other nights, so many thought going through your mind and not sure how to  process them, dreamt of Liz from the tri club last night not wanting to do something. Weird. Then my thoughts turned to if I was strong enough to fight this and if I was ready and if I could. The answer has to be yes, I also asked why me, but why anyone. I am scared , but may be not of dying, but the process of getting there if that sounds weird. How will I know  when to fight and when enough is enough.  I feel  tearful and sad, but I know the time I have left will have to be the best party out.

As the staples were removed from my head yesterday I have had my first hair wash since the operation which feels a lot better.

 

Results meeting

A bad nights sleep if you call it that, I was on a private mission not to need stronger pain killers, as head was very uncomfortable.   I suddenly feel overwhelmed, suddenly you do not know what normal is, how will life pan out and how will I adjust to the changes. I asked Celia to come in before work as talking to John felt wrong. I have always chatted to Celia as we train together for the walks. A  good cry made me feel better and just accepting  there will be bad days and that is ok.  My left hand side feels horrible, which they warned me, it does not feel that it belongs to my body, I have to think about everything I do , from walking , to getting a cup from the cupboard.

Well it was bad news, grade 4 tumour and an aggressive one, 6 weeks if chemo and radio in 3 weeks time followed by a further 6 months of chemo. A  Shock, but I lost a sister 25 years ago in a riding accident, so I have had longer than her. Telling people is another thing. Telling the girls I will not be around to see them have grand children , get married is hard, but I do know that I will live life to the full. Am I scarred yes, who would not be, will I fight it yes and I will fight it hard. I Do not feel any different at the moment, but when it sinks in I know it will be hard, but at least I will have time to do a bucket list and I will party and live life to the full.

Just told Irene , my close next door neighbour, I think she could have hit someone. I do feel like crying and running , but there is nowhere to go, so I am I just going to accept it and live.

Invited to meeting for results

Another funny nights sleep, dreamt of a random family at the sailing club.  Another day begins and my usual text to Celia, which in some odd way brings great comfort, not sure why!. I made my own breakfast, Weetabix, I need the fibre, never realised  you could have such discomfort below !!! Elaine came to walk Bertie and then I had the usual bath etc., although slow to do, I am doing with confidence. Mo  arrived to do the table plans for the dinner and dance , it was a slow process as the phone rang and Elaine brought Bertie back and had a coffee, the day is my own so just let it happen .I think we have put everyone with who they want to sit with, Mo said they was no change to my  planning method, we have done the Dinner for years. Flowers from work, present from tri club  friend also lift my spirits today, at the start of the week it made me feel over emotional, now it is lovely that so many people care!!  I am beginning to accept that being looked after is ok, quite nice  really, but not for too long.  

Appointments have come through and although I want to know things, I am scared what reality might be, but I believe in  fate and what ever they say I will  be ok. So tomorrow I will know .

The afternoon I saw the new puppy that arrived in our road, We went to help choose her as it is Bertie's half sister, a cocker pooh. She is lovely and a cuddle does anyone good. Half an hour later home and tired again. I hope that all my past fitness will stay for a bit , but simple walking is hard. Before the tumour I could do a 6 mile power walk and then 2 hours later I could go on an 11 mile bike, pushing pace and still be able to go shopping afterwards. Not any more!!!. Bike coming in at the end of the week to go on indoor trainer, maybe will have to be Sophie road bike , I will take it slow.

I now feel calm about the results, if bad I will fight it and I will fight it hard, so bring it on.!!

 

Starting to recover

Usual nights broken sleep. Boxes again . TV on and Donald Trump again. Woke up when John woke Sophie up.

Sally and I went out today to bank some money today for the Dinner and Dance(I am Social Sec for Thornbury Sailing Club). We also went to the doctors to get more tablets. Then village shop for bread, where we bumped into people we know, which was good to break the ice as we live in a village and everyone knows each other. It has made me realise the facing people after having a brain tumour removed is not only hard for you, it is also hard for everyone that sees you for the first time.The close people around are looking tired and the shock of the past week is coming to the surface, in a way it was easier  for me, as I was in the moment, being  given drugs for pain etc. I now need to make sure everyone is ok and their lives get back to normal (ish). I do not want to be a pain, but would panic if I was left on my own and those feelings I hate.

In the afternoon I was wiped out and I did not even want to talk, which is a first as I could have a degree in chatting, I can even chat  while doing a hard swim.!!

I need to be patient!

Usual  nights sleep, woke up with boxes in so on goes the TV and Donald  Trump. To break the cycle, what joy. Head sore but not painful. Then woke up for tablets. For some reason, I feel tearful in the morning, I think it is because what was certain is no more. Coming to terms with the fact that simple tasks are hard.

Had plenty of visitors today and family around to look after me, this is hard as I have been the carer, even writing a words takes forever.

I also went for a short walk to the  end of the road today and struggled with the slight incline on the way back, which was very  frustrating to say the least.!  I will try to be patient, not something I am good AT !!!!.  

Starting to recover

The reality of the situation is sinking in. I am so glad I can only memorise so many telephone numbers as it now feels embarrassing how I told people. There is no easy way to tell someone you have a brain tumour, but morphine made it very easy and the people I phoned I knew very well. My sense of humour has always been on the eccentric side.
I have gone from a daughter, sister, wife , mother, friend to someone who needs help, never knew putting clothes on could take so long! I have always been happy to strip anywhere and confident with my body, but when the choice has gone, the dignity kicks in.
Walking has to be thought of and the Julie I knew is there, in spirt, but not in body. But It will get there, Edinburgh Moon Walk 26 miles in a good time will HAPPEN. The journey there might be hard, but with humour, it will be possible. I also want to do a novice tri.

Only woke up once, hurray. Put TV on, could not turn it off and had to ask John for help, slept till John got up to wake Sophie for college. The usual having  a bath and trying to feel  dignified, having gone from someone who can have a full blown conversation while changing after swimming and not worrying who see my body, to be aware  that I do not want anyone to see my body, the choice has gone.

A small walk in the park is challenging, going from a runner. Power walked to thinking about every step is different and todays walk I felt  tearful, grieving for what I have lost I could do,  but making sure I making sure I will get better, to run, walk, chat .I feel I have lost the person I was and have to regain something new, but I am very positive and do believe, that things happen for a reason.

Waiting to have the Tumour removed

Finally, I got a room early morning in the neurology ward.

After more tests, the neurologist came around mid-day to confirm I had a brain tumour. She explained it has been there a long time, but unsure how long. The tumour had been resting on the bone, and fluid had built up which had been putting pressure on the brain, hence the horrendous headaches. They were unable to confirm or deny if I was going to make it out okay, but said they needed to do a biopsy to find out what type of brain tumour they were dealing with. I was at the top of the emergency list the next day (Wednesday) to have the tumour removed and a biopsy completed.

 Later on that day, another consultant came around to explain the procedure again, along with the complications and that the results of the biopsy will take 1 week to be returned.

At about 11pm that day John returned from Israel and came in to see me and Sally and Jack went home for some sleep. He stayed for about an hour but I had been kept awake all day and was getting very tired and I eventually went to sleep.

 Wednesday came, and I rang my husband, John to ask him to bring in my Soo toy (small cuddly toy), which got my daughter through meningitis 20 years ago), for good luck. I was told he needed to be quick in case I went into the op. The toy actually proved to bring good luck, as if John didn’t bring the toy in I would have been waiting for the op all morning/ early afternoon on my own. At 11 O’clock mum and sally came in to visit, and John went home.

Just before mum and sally came in the nurse went through a few things about the op and she told me I was going to ITU after the operation.

My friend Emma was on her way in and luckily came in just at the right time- although my mum and daughter was there, I needed a friend I could talk to. After a little chat the nurses came in and off I went to the op at about 4pm. That was a long wait since  I had been woken up at about 6.00am and was expecting the operation to happen at about 9.00 or at least during the morning.

After a 4 hour operation I was taken to the recovery ward. My family phoned at 9.00pm to find out what was happening and were told I had been out of the operation for 1/2 an hour and to phone back later. Later they had trouble getting through to anyone but at 10.30 I phoned them to say I was ok and was allowed 1 visitor.
My daughter came to visit but because I was on the recovery ward and it was late it took some time for someone to let her in. 
We had tea and toast (very British) whilst putting the world to right. At 1.30 in the morning the nurse came in and told her to go home because I kept talking and wouldn't go to sleep while she was there.