Feeling tired

I woke up this morning feeling tired and a bit weepy. It was Bertie that got me out of bed. He
pounces on the bed and does not leave you alone, John must have sent him up. I just could not face swimming, John is checking when I can do front crawl again.  I spent the morning doing housework and potting around the house.
The girls and I went into town to meet and old friend which was lovely and then Primark for  a few bits. Then we went home as I seem very tired today, emotionally, mentally and physically. Being brave  and strong is hard work, I am scared of the treatment and how I will feel having the mask on my face. I will pretend I am swimming the River Dart, the last 2k was horrible as I lost my way a little , got very cold and very tired, but I did it, even though I ended having the shakes and ended up in the warming tent with mild hyperthermia and strangers helping me take my wetsuit and all my wet  cloths  and wrapping me in blankets. Back to the treatment, I am sure after the first week I will be fine and will wonder what I was worried about . Back home I just sat with Sophie and watched another Christmas movie.
The girls  and Jack have booked and paid for a meal at the local pub, so I am off out later with John.
Not so much wine as last night, as light weight Julie can not take it.

Its John's Birthday

While it is John's Birthday.  I should have made him  a cup of tea in bed, but I somehow forgot, but I did make his packed lunch to go to work and give him a wallet  and mars bars for his birthday.
My day starts with Shaun and Mo coming in to offer me chance to go on the back of Shaun's motorbike ( it is on my bucket list, I was not allowed a motorbike, but I did ride Clare's moped badly behind my parent's back years ago)  dressed as father or Mother Christmas with loads other bike going through Bristol, how cool is that!
Sarah from work came and took me to  Wyevale for a cup of tea and we shared a cake, trying to cut down a bit, which was lovely as I miss going into work and the people. The thing you loose  when you are ill is your sense of identity,  who you are has gone as you are not working and not playing sport, you also have people taking care off at time some of the time. Working at the nursing home you are used to caring for people not the other way round .I am also a bad patient!!!

Richard phoned on the way home to say he had been swimming and he could pop in so Richard and Gavin came in for lunch and Richard came to Blaise Castle to meet Sylvia ,  someone I used to work with at Ashley Down College, we were both support workers with special need adults , 16 years upwards. A job a was in for 11 years before I took voluntary redundancy, another job I really loved, we had  many laughs especially  the last year as Sylvia encouraged me , ha ha. Anyway we chatted about how I was and how the last year at college was good as we were lucky enough to be in the same class twice a week.  Anyway going back to Blaise, Bertie was a little monkey and kept running off , after squirrels etc., so on the lead he goes. Our usual cup of tea follows, cold today so we did not sit for long.
When I get back I pop over to my neighbour and friend Janet for a quick catch, which I  have always done .
We are off later  for a Meal so hence the blog  being done , as  after a glass  wine I will be hopeless at writing it , as I am a lightweight when it comes to alcohol. Making the most of my glass of wine as once the chemo starts the wine stops.

Back to Normal

Today life was  nearly back to normal because I walked Bertie in the Park at 9 am and meet up with Judith and her dog Slinky, the dogs love each other and chase the ball together till they lost it.
I returned home to find that I had had a visitor and she had left some flowers which was a lovely surprise. House work  needed doing, mum did offer to come up, but Sophie needs to learn how to do things as I will not be as active when the treatment kicks in and in some way prepare her for when I am not here!, so washing and tidying the kitchen was done, this is hard as neither of us are naturally tidy people, I(n our heads we are house proud)it just needs to be put into action. .Over the years I have taught her to cook, so now she very good cook.
Anna came in for coffee and a light hearted chat, on my bucket list is to buy something designer and Anna is the person to go shopping with.  After  lunch  we went to the mail to collect John jeans, then Morison's  for food, all boring stuff.
In the Evening I went training, Power walking  around Aztec with Celia , Mum and Elaine, the team. I did not manage the  full 4 1/2 miles. I managed just 3 miles and felt tired, but it isn't just about the walking , our team name is the Walkie Talkies and we live up to the name, so I will walk till the treatment does not allow me too.  Next week is the 4 1/2 miles.
Sophie picked me and back home to see John and  a cup of tea. I am also hoping John will pour me a glass of wine later, making the most of that too as I am sure wine and chemotherapy do not go.

A day in Poole

My day started with a run/power walk along the sea front. It felt just good putting on my running clothes, we had to  search for the trainer as they were still in the car. We managed  just3 miles, a combination of walking and running.(the distance on the  workout is not correct as the phone gave up, should have had my garmin watch)  We also managed to talk, Sally  has been brilliant, but admitted to finding it all  very hard.  My legs  felt very tired at the end , before I was ill I could power walk 6 and still have loads of energy!. Back for breakfast and then out to Sandbanks where we played crazy golf which was really good fun, followed by lunch in the café on the front. We walked along the sea front and the harbour afterwards, I never get bored of this and we have been and done the same things many times.
Back to the flat for a cup of tea and clear up before heading home, we phoned my mum up to say we were on the way and would pick the dogs up and she offered us Sunday lunch, mum does the best Sunday lunch, so at 6 o clock we were there. Phil and Sarah were there and I talked about Sophie, John and I doing a Relay Tri in May and asked if he would do a team one and he said he would do one on his own. So now I have blogged it, there is no going back Phil!!. I also have a list of other people that I get to do this one.   Sally has said she would do and I will badger other people.. I am also not giving up on the idea of doing the Moon walk in Edinburgh with Elaine, Celia and Mum.. I know this one will be a big ask. I know 26 miles is a long way, but with having registered, hotel and flight booked I am not giving up on my dream yet.  Sorry back to Sunday lunch, which was delicious  and the banter around the table never changes. Strictly to follow, poor Ed Balls leaving, but it was his time to go. Not sure who I want to win.
Back home to unpack the car and chill in front of the telly.  Another thing that has been decided is that we will visit Ireland and see where Jack lives. in half term if it fits in around treatment.


I apologise if I go of track with the writing the blog, but those who know me well, will say I can do that when I talk to you.

Quality time

Poole is lovely, I am very luckily, I draw back the curtain and watch the sea, all is ok for the moment in time, I am not ill and not starting radiotherapy. We went to see Poole harbour side this morning to see Father Christmas come in, then we went into Bournemouth for some lunch.

 We parked just before we got to Bournemouth, so we could we could walk along the front and look at the sea. We then went  to walked through the park to Christmas market.We had a simple hog roast from one of the stalls for lunch , followed by shopping for present, educating John in the art of Christmas shopping for when I am not here and also leaving him a list of what people like. There are many things he needs to learn! I will write a list on the things he needs training in ..... It never seems to leave me that I might not be here for many more Christmases or I could be too ill shop with them. When I saw them walking together as 3, I thought that is what it will be like soon.

I am happy, but I know the illness is terminal and it breaks my heart at time. Even the happiest moments remind things will never be the same again. I have asked them to do each other stocking when I am not here! To be honest I am writing this with tear rolling down my cheeks , but the blog does help.

After shopping we came back for a rest as I still get tired, the girls do each others hair, they need each other more that ever. I also get to watch a really rubbish film.

A lovely walk down along the seafront to the restaurant , although going down the steps from the flat was very dark.  The meal was lovely, glass of wine and spag

bol , what more could a girl want !

With new hat, scarf and gloves we walked back, to hear the waves gives you a feel good feeling, I was tempted to go for a paddle, but that can wait till the morning after I try to run for the first time since being ill, It might just be a power walk, but I will put my kit on to try. Sally is coming with me, she is a brilliant runner and last time we were here, we went out together but trained on our own.

Ps the Mask you see on the cancer advert is the same as the one I will wearing for the radiotherapy.

What a day

My day starts of with going to the BRI hospital to oncology. I am having a mask made for the radio therapy , when I am called in nervous to say the leaset but the man is lovely and explains what will happen. So I have this plastic sheet with loads of holes in it draped over my face, then he moulds into my face,  then I have to stay still till it goes hard for about 4 minutes, bingo a mask is made for your treatment. Next is a CT  with the mask on . This is not nice as the put the mask over your face and screw it down so your head will not move .Not the best thing I have done in my life!! This is all mentally challenging so I grateful for the swimming and long distance walking as it as given me the tools to cope with what is going on.
To finish the morning I have a MRI  scan, 3 of them so far, but I still do not find them pleasant. I also have the injection of fluid put in and that makes me feel weird. I am left very tired after all of this and almost tearful, but to constrict what I am saying it also gives me a fight in my belly seeing everyone suffering from cancer , it makes me want to fight.

I go home to the girls and mum and they are baking cakes. I try explaining what has gone on, but it is hard as I am so tired.  WE are off to Poole,(john parents Place) they are away so we are having a break,Packing is needed, no sooner said then done and we are driving to Poole, bad traffic we arrive at 5.20, in time for Neighbours, then out to the local Harvester for a meal down the road.

We  know the area very well.


I am happy to share my journey with who ever wants to read it, so if anyone wants to pass the details of the blog on , please do so. It may be boring in places  and not make sense, but for those that know me well I can talk a lot of rubbish!!

MRI not CT

well this is the 4 attempt at this as this computer is not doing what I tell it  !!!


The days starts with a lovely walk with Bertie , Emma and Betsy came too. both dogs love the ball being thrown and was a delight to watch them in the fields. With what has happened the last 4 weeks, it has made me realise the simple pleasure in  life a free and the best.


I then had a MRI scan which I was really dreading, because after each one came more bad new, so lets hope this one will not deliver more bad news. The scan itself was ok. I had to stay still for 1/2 hour, so I sang to myself "she will be coming round the mountain", I like the part red silk pyjamas, because I would like to wear them coming round the mountain,,,  I also sang Que Sera Sera, a song the residents like at Glebe. It go Que sera sera what ever will be will the future not ours to see Que sera sera. How true that is.  This is going to be sang at my funeral. I know I should not really say it, but if I blog it everyone can learn it and the church will not be quite.


In the afternoon I went to Shoebox and again I done the sweets to go into the boxes, we left at 5 . This has been good for me as no really knows me and therefore no knows I am ill. I also get to seat in a  lovely church and eat lovely ginger /pear cake at break time.


In the evening I went to a committee meeting at  the sailing club, this is my last one as social secretary as my term as come to an end. I wanted to go just to finish things off. 2 more events left, Laying up Supper, where the social team cook a meal and have a quiz afterwards. I have handed over Father Christmas as I will be mid way through treatment.  John is also on the committee and by going we get to spend time together. Saying that going to hospital has meant we do spend time together and it is quite nice !


I will go now as I am drinking a small glass of wine   and enjoying it.
Dreading tomorrow as BRI for more scan and info on the treatment.

I did swim and shop

I did swim today, Close to bottling  it!!!, but if John could have pushed out of the car he would have done, but I did get out on my own¬. luckily as I was walking in I saw one of the people I swim in the lane with, she knew about the tumour and was very supportive , then I talked to the receptionist about it. I want to be very open , so talking does help. Sarah was leaving , but we chatted, telling Hilary was hard, but if the elephant is out of the room you can move on.
I saw Cathy in the pool, I allowed her to swim 1 length with me, then I told her to get on with swimming! . normally I swim 70 lengths.  I only done breast stoke and float work .I have never liked float work , but need must !, but it felt good. I felt week , but I swam. I can not wait to do front crawl.  I think I only swam about  12 lengths as I ended up chatting to   a regular who wife is going through cancer. My love of chatting is back and so is my spirit.
This afternoon shoebox and the local church, bagging up sweet to go into the box. I love doing this as it is a time to reflect. Mum and Sophie are there, but they are doing other things.
CT scan tomorrow which I am really dreading as each time I have gone thing have got worse, I will try not to be to much of a pain to John, but as he put so affectionately when he arrived back from Israel that I have always been awkward , so nothing will change now.
Going to the Mall later with Girls and Walking with Emma in the Morning to keep busy.
Went to the mall with Sally and Sophie , bought Sophie some boots. I am very aware that when I am have radio and chemo that once the treatment kicks in I might not be well enough to do this. I am also aware that long term Sally will have to get used to shopping with Sophie , which is different!
We saw one of Sally friends up there and she joined us for a glass of sparkling wine at the bar, which was good fun..

forgot to say

last night the financial man phone up, I do not like him anyway, at the last meeting I  near enough showed him the door as he belly ached on that my pension was not enough. Well he was on the phone the same time as Julie , Sophie handed me the house phone and he would not go, so I was rudish again, I stopped short of telling him that there was no way I would make my pension , I told John that I would phone him back, but he said no, I think he thinks I will be very rude! but what I trying to say is that I have felt no anger towards anyone or anything , but if this man had walked in the house, I do believe he would have walked out quickly.

Good old Tuesday

I wake every morning and I feel, what will the day bring and how will I feel, I am now off of all the post op tablets and I have stopped taking paracetamol., but my head still feel weird.
I had a phone call at 9 ish   to arrange  a time a time for my first lot of chemo, reality is setting in.
Mum and Phil came up for dog walking and we walked to the park in the village, we have to walk down  hill and back, I  was pleased with this as although nowhere near peak fitness, it was not that bad,  Dad came in for a bit and had some lunch, dad wears his heart on his sleeve like me and you can see how hard this is for him and you so want to protects and you know you can not.

Julie came to out and about, which was great, at that point during the day, laughing with her it felt like the past 4 weeks  had never happened. It also feels odd that Sophie and the family have to drive me everywhere. I am swimming tomorrow, much debate has gone into this, but if I do not swim I will scream, I know only boring , breast stoke or float work,I will swim with Cathy in the fast lane so she can keep an eye on me ands overtake me every 2 lengths. I used to swim hard, although some might disagree with that as Cathy and could chat too...
We did debate the bike, but I will wait for that as I will only go on my old racing bike, we thought too soon, but wait till next week,,,,,

another post today

I hope it will help me
The better I am feeling, the more the emotions are over taking. I think in some way I preferred it when I was on morphine. Sally said I was loud on the ward and she did not know what was going to come out of my mouth. That is nothing unusual as I have a habit  of opening my mouth before the brain as time to think.  I am also a worrier by nature and wear my heart of my sleeve. I am also a complete control freak and I have never felt so out of control .


I feel so sorry for John having to live though this, he never signed up to nurse his wife. I do not want to a pain to him. The same for Sally. It will hit Sophie in a different way. Even seeing other members of my close family come to terms with this hard, I will not be there to nurse my mum  and dad in old age if they need it or help them out .


Looking forward to the counselling from Hammer Out. I have had it in the past, after Sophie and when my sister Clare died 25 years ago in  riding accident.

What is normal

My panicky feeling tend to be in the morning and evening. I have always had  that side to me from the age  of 13., so panic are something that I have dealt with over the years. It is also something that should be talked about and not ashamed of. For anyone having them, mental illness is real and it is a subject not talked about enough.


While there goes my rant . It is nearly 8 o clock and John is still at working , sorting out some problem, Sophie is upstairs and Bert is cuddled up to me.


I got a lift to collect the sick note for work today(not driving is pants)then I delivered it to work. I chatted to Carey my boss , It would be lovely to return to work when I can as it is a job I really love .
I have many friends at Glebe House (Nursing Home) the staff there are amazing. I am now going to the works Party. Sarah and I had arranged lifts before the illness and Jane encouraged me to go. Something to look forward to.  Seeing everyone was great, plenty of hugs and chatting to everyone about the tumour, being open that is rubbish and that it ok to talk about it. It effect everyone around you, not just close family and friends, but work colleagues who you spent hours each day with...


In the afternoon I went to the mail with mum  and Sophie , 20% off , can not resist a  bargain, also  I want to do all my Christmas shopping . Treated myself to some lovely food from the food hall.
Home from the mail and Celia came in from work for a quick coffee and chat. 


 

Another Day

I Slept like a log and still managed to feel rubbish when I woke up, but I slept.
I wasn't sure about writing the blog today as I feel I am getting boring, but the need is still there and it makes me feel good.
With all the post op drugs finishing I am feeling more panicky about what lies ahead, scans at the end of the week and the discussions about my treatment and the anxiety that the treatment will work and how I will cope it and if it work.


My day itself has been good, we went to the sailing club to watch John and Sally sail. I Sophie dropped me of  at the gate and I walked Bertie to the club house. We stayed till Sally and John finished sailing, had  chat then came home,  the club is like a second home to us all !
Late Roast Beef lunch, which to my surprise was good, we are not very good at cooking beef.
It was lovely to do some gardening and pottering around the house, all for normal for now!!!


Elaine took me this evening to her church for a reflection service, I think it is called that. Well for someone who finds it hard to sit for an hour, I really enjoyed it and it felt great, also shed a few more tears, not sure where they are coming from. When I got home I heard I had a phone call from Janine, someone who helped me my horse when Clare died, I have now arranged to meet her in a couple of week. I am so determined  to end this day well.


Contacting McMillian  and Brian Tumour Support tomorrow for help as it well overdue , also going in to work with sick note which I need to collect.

satuday

this morning I should have been walking if this illness had not come, 6 miles on the Downs, I am missing my old routine and the way it made me feel good.   We did go and watch Sally play netball and her team won.


In the afternoon I went to Weston  Super Mare with Celia and Sophie. A walk on the pier and a play with the slot machines, the some early Christmas Shopping. A brilliant afternoon. I want to do all the Christmas shopping before the radio / chemo starts


It is only when I get home and stop that things become to much. I am aware that I need some counselling , so I will have to get that sorted. I so want to be strong for everyone, easier said than done.

Usual phone call to Celia to say I am ok. I did think about swimming today, but bottled it ! Also the sensation of water over my head is weird. I miss swimming very much with my friend Cathy . I will check I can swim before the treatment starts. Instead I mixed fruit up for the Christmas cake, how exicting!!. Mum also said dad would come up for company, but I said no as I just need to be on my own.

Julie came for a brief lunch, then Shoebox and bagging sweets for an hour, home for tea and dog training . Sally took us, Sophie and Bertie are going for thier gold citizenship award.  Sally stayed and watched for a bit and then went to ALDI shopping, not that exicting.  A day to feel normal.
Tommorrow when I feel brave I will look at the hammer out literature. I will also phone the people over the next couple of days I have not phoned back. The Queen of chat is suddenly finding chatting and being socialable hard. But as Sally pointed out I have always been Chatty but I am only sociable in small Doses. Hence the anti social sports.loving cycling on my own and training in the lake for up 2 hours for the long distance swims, also when i meet my friends it is not to sit and chat, but  either walk or swim. I nver really sit down for that long, always to busy. I can not tell you how horrible this all feels and i hate swearing, so I determined not to go there.

Reading about the diagnosis is hard

Woke up feeling shaky and must accept this is a bad day. Walked Bertie with Mum and Phil , then popped into the local church for Peace. Letter came through from hospital and it was the average time people have to live with the brain tumour. It is horrible, I just want to run and run. I am fed up with feeling rubbish.I am also fed up with tear rolling down my face, I do not want to feel the victim. I need help to come to terms with this, we all do.

I went to shoe box again at the local church, it was just the tonic I need, chatting to Morag while bagging up sweets and while staring at the cross makes me feel a sense of calm. Being in church, surrounded by people I do not know is good.

In the evening I met Sue(I was her Bridesmaid when we were young) It was great to catch up, as we do not see each other that often. We had a coffee, then a bit of shopping. Looking for Sally's Christmas present. We also bought Sophie and Jacks Present(can not say what it is as they read this).  For a couple of hours emotions are blocked out. 

A better day

A busy day, Emma took me to the sailing club in the morning to meet everyone. It broke the ice so that is done now. In afternoon the shoe box with Sophie (Daughter) and my mum I made loads of packs and sweets. I had good afternoon out with Sophie and mum. I helped Sophie to make dinner. In the evening I went to  ALDI shopping  to buy some food in, very good day. Shaky in the evening with John

Letter came through with all the treatment date on and this this made me feel shaky, what if the treatment has no effect , what if I die earlier. I am struggling.

I get tired very quicky

Still dreaming , but a good nights sleep.  Woke up 6.15 in time to wake Sophie up for college. John  made me a cup of tea and then had a chocolate that made me feel sick. The steroids I am taking at the moment have alleviated the effect of my allergy, I haven't eaten chocolate for years since I start sneezing so i'm making the most of this as I will stop taking those drugs soon.
Watched TV , morning breakfast, but can not watch the articles on cancer, too close to home.

Mum came up and said Phil(brother) was coming up to walk the dog, so we all went to the local park. It was lovely . I then went to church  and had a really good cry, I also put a notice on the prayer board asking for people to give me the strength and courage to tackle this horrible illness The hardest part for me and I needs to happen is to think that that the girls will have a future without me. We do need counselling to sort and process what is happening.  Sally has also agreed to get counselling, Sophie by luck is already seeing someone.

Paint shopping  at B & Q this afternoon, samples for the girls bedrooms, one is for Sally's flat in Cardiff , the other for Sophie’s room,  which has been on the agenda to do for a long time.  Very tired now.

Chatting to  Sally just now,  I am realising that it is not only coming to terms with diagnosis , but mourning the life I have lost, the 100 miles an hour Julie.  I loved going to Glebe and letting everyone know that I am in the building, singing with the residents(favourite part of the Job) and chatting to them all. I was lucky was job involved talking and I love talking.  The old Julie never sat still and was always behind with everything . At the moment walking around  B & Q tires me out.!!!

Life is not fair

Another  weird nights sleep, was watching  TV at 4.15.  John phoned Jane work at  7 and said I needed to visit, she was off out at 8.15 so I went down early and told her about  the tumour and how bad it was, we cried and laughed together, decided life was shit and had a laugh about other things. Taking time out sick for now, but I do miss doing the activities in the home, as my day in there was very busy and I do like that.

9.30 Mo came and Sally woke up, Mo and  I went to the mail to take stuff back and buy stuff for Johns birthday. We then went to John Lewis for coffee, but it was very noisy . What made my day was seeing a special needs student that I used to support as a support worker, she shouted across the shop and then came and hugged me.  She knew nothing of the aggressive brain tumour, that seems to be defining my life at the moment and it made me feel great, I smiled and smiled some more. I need some kind of normal.

Mum , popped in and so did Dad and Phil, Julie also popped in, but by 3.30 everyone had left, just Sophie and I.  Sally had gone back to Cardiff. This makes me feel a bit panicky at times, but this will be the normal. Emma also phoned up and we arranged a dog walk.

Celia came in after work which I look forward to, felt melt down coming on, but not completely. We chatted and cried together.

I have gone  from someone who went around at 100 miles an hour to this, sat on a sofa drinking endless cups of tea with people, 2 weeks seem like 10 years and all my things I do to combat stress have gone. I miss swimming and pushing the stoke hard , I miss the walking and running. I also miss the bike.

By the time John came home I was ready for the complete melt down and I had it!. Why me?  I don’t want to die?  I don’t want to leave Sophie and Sally. I don’t know if I can fight it. I screamed, cried and swore. Luckily Sophie is deaf and did not hear. There are no answers and life is not fair, never has been or my sister would not have died in a riding accident 25 years ago  and Sophie would not have had meningitis that left her deaf and with short term memory problems.   Life is   XXXX today and that's the way it staying.

trying to be normal

Megan from work came in today, life felt like normal, Megan works on the Dementia unit there and gave me loads of support when I first started. It was hard telling her about the tumour, but once that was out of the way we talked about work and it was lovely to feel normal.

Lunch was follow a trip to the garden centre to spend some vouchers. We bought a plant a pot, bulbs and some small plants.  When we got back Paul, Alex and Izzy came in, Paul is a close friend of John’s  and knowing there will a support network for John is vital.   I still feel very  tearful on and off, and also panicky but  I am sure those feeling are the new normal.

Back to helping plan tea, I am a food lover and being involved with the daily run of the house feels good.

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.