Doing "public"

There's a great joke by an American comedian...... He talks about being thrown out of a bar and being arrested for being drunk in public. He looks at the police officer and the barman and says "I wasn't drunk in public. I was drunk in a bar. He put me in public!" 

I haven't really 'done public', apart from hospital appointments. I've been for walks, but only ever been in open spaces where I could get away. The thought of being inside with others was not something I've been interested in doing.

Today I was put in public. One of my wardmates was having a fundraising 'Mad Hatters Tea Party' at her home. I felt that if she could make the effort to do it then the least I could do was to go. I'm in awe of her for running it..... from 9am to 7pm too! I couldn't comprehend doing that. I'm very proud of her. Plus I'm very fond of her and her parents. Good people. My sister arrived this morning so it was agreed that she would take me. It was about an hour's drive away, but really that's no different to going to hospital appointments. So we set off. It was lovely. A house full of love and support. She will probably start radio around the same time as me so it'll be nice to have friendly face. We can encourage each other and spur each other on. I'm really glad I went.

Then I got all confident..... on the way home I realised there was nothing obvious in for dinner. So I texted the big man and it was agreed my sis and I would stop at the supermarket. I was quite hungry and didn't know what I fancied so took the bold step of going in with her! A massive leap. I was dreading seeing someone I know and of course the first person I saw was my neighbour. Thankfully she's lovely so it was fine. I proudly stated "Look at me! I'm out in public!" She praised me and gave me a hug. I didn't even cry!! 

I can't say I particularly enjoyed the supermarket...... but who does?? Thankfully it was very quiet - we had our choice of 3 empty tills. Unheard of on a Friday evening.

So another leap forward. I'm really tired now and my head hurts, but I feel proud of my achievements today. I had to do it sometime! 

Fatigue be gone!

I slept like a log last night. So deeply that I worried I might take a seizure...... It was almost like normal, really deep sleep.... Despite that being lovely..... its like any change in how I feel..... almost makes me panic a bit! So much changes so often and each change brings concerns. I could've slept on this morning.... in fact I'd have slept in if the big man hadn't woken me. I wanted to be up and showered as a 'boy nurse' was coming to take some blood. My veins are a mess and really won't play. I had been assured this guy was the guy for the job. 

Sure enough, he arrived and has gone onto my list of 'one veins'! Another no nonsense nurse..... reassuring, confident in their ability and then just gets on with it. Exactly what you need! I have to admit that I find my local nurses more settling..... country girls like country folk looking after them! Not to say there weren't some exceptional nurses at RVH, because there really were. Sometimes it's nice to hear a country accent and have a laugh with a local bloke.

I remain really tired.... but it's a different type of tired to the last few days. Sleepy. Not fatigued. Tired from a good night's sleep and getting up too early. Not an overwhelming fatigue that you just can't shake. I could probably do with a wee doze but I've visitors coming. A friend coming at 1 and another at 2.30. Both happy folks (as all my friends tend to be!) who will keep me 'up'. Though I have to say that I think I'm through the blues now. There had been talk of antidepressants but I'm glad to say I can't take them due to epilepsy. Deep down I'm (somewhat ironically) really happy about that..... I think knowing I was on antidepressants would probably have made me more depressed! I'd have judged myself for it. Wrongly. 

We all have bad days and I fully accept that some people need help to get through them. Despite a few very bad days recently, I still do not believe I'm one of them. I'd rather use other tactics...... I guess it's my own form of CBT........ my friends, having a laugh, music, making myself get up and do stuff. I can do all those things. My difficulty was the intense fatigue making it so hard to fight against the dips. I was exhausted. You can't get up and do fun stuff when you're constantly just trying to keep your eyes open. If today is anything to go by, then that's passed. I guess the next few days will tell. I really hope so! I can fight anything; tumour, misery, whatever, if I'm mentally somewhat sharp. That heavy exhaustion just makes you miserable and then everything escalates. 

I'll still go to counselling when I move my up the queue - I accept the need for that. Today is a much better day and it's set to be a great weekend. One of my wardmates is having s fundraising event at her home tomorrow so I'm hoping I'll be up to going to it. My sister is over in the morning so will take me. It's quite far away so that'd be a fabulous achievement for me. It also allows me to start seriously considering a few other massive steps forward...... I'd like to go and see my see my special priest and I'd also like to call into work to thank everyone for their immense support and show them that I'm doing ok and don't look too awful. Those are big things for me. But important too. I don't want to do them too soon and set myself back by putting myself under pressure. But I know the sense of achievement and positive energy that will come from them will be brilliant. The biggest problem is not knowing how I'll feel from one day to the next. Today I could climb a mountain (slowly, but I'd give it a shot)..... on Tuesday I could barely lift my head. Surgery? Medication? Brain tumour? Depression? Who knows?? There is so much going on and it all happened so suddenly that it's impossible to know..... That's the biggest shock for me. I really didn't have any major symptoms. A few niggles, but nothing major. I was independent, confident, living a full life. Then all of a sudden I'm dependent on so many, often anxious, have the trauma of the diagnosis and treatment, can't sleep at night without someone beside me, am physically weak, and often burst into tears. Not really the Trish everyone knew. In some ways I'm exactly the same person, if a little supercharged. In other ways I know I've changed so much. 

In some ways it's not a bad thing. I'm learning what's important. I won't waste time on anything that isn't. Im seeing the amazing people I have in my life and I'm truly grateful for them..... not just words, actually knowing. Relationships are changing for the better. Bonds that will never be broken. Friendships strengthened and formed. I've said from the start that was the blessing to be taken from this and I still believe it to be true.

I found a blog yesterday of an American woman celebrating her 11th year since her initial surgery by climbing a mountain!! I've also been in contact with a local woman who's through surgery, radio and her second round of chemo, and remains positive and upbeat. People do this. They get it under control and they go back to their lives. Perhaps slightly changed lives, but fulfilling lives. I can't imagine not going back to work. Working in Belfast might be a step too far, but work is a definite aim for me, I won't know until I get through further treatment, but I hope that'll be the future for me.  One day at a time. One hour at a time. Surrounded by my cage.

Xxxx

Conflicting information

Sometimes I feel like everything is conflicting...... I'm told to rest after two major surgeries.... makes sense. The problem being that if I do that then I dip very badly emotionally. So I'm told to plan out my day and keep my mood up with routine. Grand, except I'm tired from the two major surgeries and everything else. I keep getting it wrong. Yesterday I was exhausted so decided it was probably ok to have a day of rest. Sleep..... heal...... The problem being that every time I woke up I cried. I just couldn't stop. Sleeping and crying are not good things to do all day. Another massive crash. 

A visit from my GP, who is lovely, but quite clearly believes I'm depressed.  Which at that particular time I may well have been. So he's talking to me about how to lift my mood etc and all I can wonder about is what the medical experts want from me...... I almost feel like I need a nurse or doctor to tell me every day what they want me to do..... want me to sleep and rest to heal then that's fine, I can easily do that. Want me to keep my spirits up, then that's fine too - I can do that with a structure to my day, and my amazing friends and family. The issue is all the conflicting information. And the fatigue..... which is constant. I can fight through it but it takes a lot of energy and I often need a lot of help.

Even my cognitive tests showed a conflict..... quite an amusing one if I'm honest. There were two areas where I showed slight deficiency..... decision making and flexibility. This means that I either cannot decide at all or I'm so fixed in a decision that I just won't move from it. Not sure there's much change! Very difficult for those around me - they have a lot of patience. Do you want to do *insert activity here* Tricia? I have no idea. I'll often look at people like a scared rabbit. Feeling pressured. I genuinely don't know the answer. What do you want me to do? What's the right answer? Whatvwill make me stronger? The flip side of this comes when I've made my mind up about something. Mostly these are odd paranoias that have crept in for some bizarre reason or another. Something I've read, something I've heard..... a word, a look........ these can just overpower me and I simply won't be moved from my belief, no matter how irrational it may be.  It's grand when it's something simple (like the kitchen chair I refuse to let my husband move from the bedroom, even though he keeps falling over it...... or the incessant need to check my blood sugars). Those things are fine. If they reassure me then why question them? They don't matter in the bigger scheme and better to keep me settled. But there can be bigger things. I won't say what as I don't want to upset anyone. But these paranoias and fears can be debilitating. They creep in, usually because of something I've read...... making me scared to read anything; in case I see something that'll give me a negative thought. 

So it's a constant conflict between getting rest and motivating. I think I've half figured it out.... but every so often the fatigue will win out and I'll spend too long sleeping and then end up in a total mess emotionally, or I'll go the other way and bounce about my day, leaving myself completely exhausted. 

The routine that seems to work for me is this; awake at 7am, meds and breakfast. Breakfast TV on. Stay in bed but don't go back to sleep. Spend the morning doing bits and pieces from bed - catching up with messages/ blogging/ making phone calls etc. Out of bed around 11am. Shower, dressed, lunch. Visitors around midday/1pm are good. Today I have an old school friend coming in which will be great. A happy soul, we can laugh about childhood times. She's deeply religious too and I'm not adverse to the odd prayer now so that might be a quite nice relaxing thing (kind of meditative I think). I think the District Nurse is coming at some stage to do bloods. She's lovely so always nice to see her happy face. At some stage my wonderful friend who has literally held me up so many times will call in. She barely lets a day go by without calling in. And if she can't call in, she is always in touch. Like my sister and the big man, she is another rock. There are friends and then there is her...... I've no idea what I did to deserve her, but I am so thankful. Even my dog loves her. Jumps up on her and follows her everywhere. Fair judge! My family think she is wonderful..... because she is!

So that's today...... enough planned to keep my head up, but time to get an hour's doze in the afternoon if I need it. Which I usually do. 

In yet another twist.... my hubby was taxing the car yesterday and got chatting to the woman at the counter about surrendering my driving license. Turns out she knows all the information very well because her sister has a brain tumour........ her sister is also blogging, on Facebook. As you can imagine, they got chatting. Her diagnosis is essentially the same as mine. I read some of her blog last night and got in touch with her. It's helpful to support each other, although as usual I have to be very careful that I don't let one sentence stick in my mind and turn into a damaging negative thought for me to obsess over. Particularly when the intention was the opposite. As my GP keeps telling me..... when you have those thoughts you need to grab them up and throw them away. He's right of course, but it can be difficult not to keep going back. It's friends and family that pull me away from them. Distraction. Laughs. Happiness, good vibes. Belief in me. Strength.

You remain my cage. There are some who have become the strongest of links, but everyone helps in their own unique way. I always find it amazing how people seem to just instinctively know..... I'll be in a negative place and someone will send something that was exactly what I needed to hear at that moment. It happens all the time. Sometimes I ask for help.... I have to..... I'll ask people if they can call in to see me or make me laugh etc...... but so often I don't need to...... you just do it, through some sort of instinctive connection. Thank you xxxxx

Mastering the days....

After mastering the nights I started to struggle with the days.... it can be so hard to get the balance right. The temptation is always to push, but you can end up doing too much. I've found myself very tired the past few days..... probably why they give a leaflet on fatigue when you leave the hospital (in the folder I hadn't read..... that my friend tackled for me last week!)

Anyway, the fatigue has been fairly heavy duty. Difficult to know how much you should allow yourself time and how much you should fight through and push yourself on. My surgeon had told me to rest up..... but it's hard when you're not used to lying about. Plus I still worry that I'm just lying about and not fighting if I don't push on. Though people keep reminding me I'm too hard on myself and an only a few weeks out of 2 major brain surgeries.....

Today I managed to get the balance right, more or less...... start the morning slow. Don't get up at 7am, but don't go back to sleep. Unless I wake up feeling really bad (in which case it's ok to catch another few hours). Watch a bit of tv, read a book (my sister has me on Fearne Cotton's "Happy" which is sort of like a workbook!), think about stuff that needs done...... If I'm up by 11am that's plenty of time. Get on the music, get showered...... takes time and can be surprisingly tiring. Then lunch - something healthy; usually a salad or some soup. I'm perfectly capable of doing light housework, like putting a wash on or doing a few dishes. Early afternoon usually brings visitors, which I love. 

Today I had a friend from work, which was great. Good company and kept my spirits up. I'd started the day a bit down so it was nice to be lifted by a visitor. 

A short walk when Fin and/or the big man get home. An afternoon doze usually doesn't go amiss either. I didn't have one today so I've just had one for an hour until 8 instead! Now I'm awake again about to get some tea and toast with peanut butter to keep the blood sugars ok through the night. I'm usually settling down by about 10pm nowadays. Late enough for a 0630 alarm and 7am breakfast and medsfest!

Overall I remain optimistic and grateful. I have a lot of dips. It's a rollercoaster. Cancer Focus NI have a helpline where you can speak to a nurse and I've rung them a couple of times when I've felt particularly glum. They've been great. I often talk myself round anyway but it's nice to have a listening ear, and sometimes it's better if it's a stranger.

Xxx

Birthday happiness

42 today 😬 I hadn't really thought about it tbh...... no drunken nights out or live rock music this year. But a birthday none the less. 

Happily two lovely friends came up this morning and then my sister and her boyfriend came over too. It was lovely to see my friends. I enjoyed their company and we were even able to sit outside in that lovely sunshine!

I'd gone back to sleep this morning after breakfast because I was still tired. I woke again feeling a little anxious. Just kind of nervous. The way you do when you've something bothering you and you wake up remembering it's still a problem! Plus I've been very tired..... apparently two major surgeries will do that to you! So I was very slow moving...... my guests were left waiting for a minute or two as I worked my way through showering and getting dressed.

I received a letter today that was very helpful. It ran through some of the things I should do, including taking my time and not putting pressure on myself. Good advice! 

So I continue to try and get the mix of pushing myself a bit but not too much. Keeping myself bright by whatever means that works - usually good company, messages of encouragement, funny photos, and 80s music! Thanks to everyone that helps with this - there are so many of you!

It was great to see my sister too. I miss her when she's not here now!! This afternoon we went for a short walk up Binevenagh again. The weather was glorious...... we cut it slightly short because the two of us who couldn't discreetly pee outdoors both decided we needed to pee!! When we got home the menfolk were able to go for a pint and get a break. I'm so aware that I'm running my poor husband into the ground. He's doing everything - making sure I eat, running the house, driving me everywhere, dealing with my constant demands, helping me through anxious times, letting me cry..... Even little things.... the other night I wouldn't let him watch The Empire strikes Back in bed because Vader's voice was scaring me! He rightly said "But you've seen it a thousand times"...... precisely the problem! I could hear the voices and visualise the entire film. I still can't deal with anything negative or even slightly scary. I used to watch the news every night and loved the politics shows..... Now I find it too negative and upsetting. It's all Friends repeats and anything that is funny or positive.

I find it so difficult having to depend on others, but I'm so fortunate that I have family and friends around me who just jump in and do everything, making sure I don't feel like a burden. Sometimes I feel like I am and I get very upset about it. They reassure me, which makes such a difference.

Fin is away this weekend and it's nice to know he's having fun and a somewhat normal life. It's so important to me. The boys are both going away next weekend and I'm glad of that too. My sister is Trish-sitting...... I just can't wait to get a couple of days with her! Saturday night in bed watching a film...... sister sleepover! Perfect!! 

So all in all a good day. I'm tired now, but that's ok! I'm watching a bit of tv in bed and then will get a good night's sleep. Happy birthday to me! Xxxx

Read the information....

When I left RVH I was given a folder full of information. Haven't looked near it. Too scary. Denial anyone?? I just didn't want to see anything I didn't like, despite being fully aware of what's happening to me..... Today I told my friend this. She's very wise and responded "Well that's like you writing one of your reports without doing any of the research...." True. Then she said "I'll read it". Which she did. She went through each bit in turn and then reassured me there was nothing scary or new in it. Then passed it to me to read. She was completely right. Nothing new. There was even a very useful list of phone numbers that I could've done with a few times, but didn't realise I had! 

Denial is easy and sometimes it can be necessary if stress levels get too high. But long term it's pretty pointless. I don't really want to think too much about what's going on. I know it raises my anxiety and can have some very negative results. I need to stay posituve. That doesn't mean I should go into full on denial. It just means careful management.  Get someone else to read the documents and give me which ones I can deal with, or summarise them for me in a positive way. Not lies, just not doom and gloom. None of the documents are worded like that anyway...... 

I often find it hard to discuss the details..... especially with people I know might be upset by it. I don't want to be responsible for other people's pain but I can't possibility hold in my feelings all the time. So prepare yourself for tears..... remind me I'm strong. Hold me up like she did. Often I will do it myself anyway if you just let me get it out. I'll annoy myself with the tears and start giving off to myself! "Wise up! What am I doing?? I am strong. I can do this"

Not reading the information you're provided with is pretty stupid. The big man tried to read it one night and I tore the face off him! Wouldn't let him look at it. Total guilt trip over the stress he was causing me....... reality is that I've already been told my diagnosis and my treatment plan..... a few times now! So what's the point not reading the information that might help? What better way to take control?? Even if someone else reads it first and 'vets it' for anything negative that might be too much.......,

Hugs not drugs

Last night I felt pretty sick....... probably a mix of a horrible day, tiredness, meds and that pesky brain tumour again....! I'd been given anti sickness tablets by my GP a week or two ago but hadn't taken any. Last night I decided I'd take one. Big mistake. I should've known..... they're essentially motion sickness tablets..... I've had those before and I'm not tolerant of them. I'm not tolerant of medications in general. Never usually take them! So I took one...... and was knocked out. I woke this morning and could hardly open my eyes. It was only then that I remembered that's happened to me before when I've taken motion sickness tablets. I was so cross with myself..... how could I have been so stupid??! Now I'm just exhausted and totally drugged up. I had to go back to sleep. Eventually I managed to drag myself awake, but I felt like crap. I couldn't shower or really do anything as I was so zoned out. Any of you that have followed this blog from the start will know that prescription medications have been very hard for me. I know I need them and I listen to the medical experts, but I hate them! I'm not used to them. It always bothered me to take anything more than paracetamol. Now all of a sudden I'm on a concoction of steroids and anti seizure medications. Fairly heavy drugs for someone who can't even take codeine because it makes me sick.

My dear friend was to take me to aromatherapy, but I just wasn't fit for it. She's a wonderful person who brought me lunch, let me have a cry, chatted to me and sorted out some other practicalities for me. My day would've been a very different day if she hadn't done that. I suspect it would've been spent crying and sleeping..... She kept me awake all day, managed to get me in a positive frame of mind and really just held me up..... as she's done so many times throughout this. I couldn't hope for a better person in my life. The day actually ended up passing quickly...... simply because she was with me, spurring me on, from lunchtime until 4pm. I'm still a bit emotional, but nowhere near as bad as earlier. I'm still a bit dopey, but again nowhere near as bad as earlier.

Tomorrow is the weekend! I've friends coming in the morning which will be lovely. Then my sister arrives. No better thing! I've a feeling it's going to be a really good weekend. I'll spend time with those I'm closest too. Plenty of relaxing but also good company and some time outdoors. The weather is supposed to be lovely too. Definitely something to look forward to!

The rollercoaster continues..... in so many ways...... physically and emotionally. As usual those around me hold me up. Showing me understanding, giving their time, dusting me off and reminding me I'm a warrior! In fact I got a lovely message from the daughter of one of my room mates in the Ward of Winners. I'd popped in to see her whilst in RVH yesterday and her daughter sent me a lovely message of encouragement and just pure faith in me. It was so nice - will be one I'll go back to if I'm struggling (I have a few favourites that I go back and re-read if I'm in a wee dip).  It's things like that that can remind me I'm a fighter and will keep fighting. Sometimes it can be the messages from people you know less well..... they can be the unexpected ones that give me a wee boost. I received one from someone I really don't know well on my second visit to RVH and it was so well timed it was incredible! It was simply a sincere message of support and it meant so much. I'm so lucky to get a mix of both - close friends and family literally holding me up, and a wider circle reminding me they care for me and that I can do this. And I can. I can because of the cage formed around me. 

Xxxx

What, no miracle??

A 'Royal day' today..... never good days..... the problem is that they tell you stuff you don't want to hear. But you have to hear it. 

Essentially the diagnosis hasn't changed. It's still there. As it was always going to be. I knew the surgeries weren't going to be curative. They told me that. It's not as big as it was, but it's still there. 

Next step is radiotherapy. Which, again, won't be curative but could manage it in a way that could see me back at work and living a 'normal' life. Again, still no deadlines, no timescales. 

I am ashamed to say I almost refused the radio. I was tired, scared and upset. Although it's essentially what we were told at the start, it was like being told it all over again. I had a moment where I didn't see the point. If it isn't going to take it away then why put myself through it?? The oncologist is yet another strong minded woman.... a bit like my surgeon....... a bit like their patient....... She didn't mince her words, she told me if I didn't do the radio that it would continue to grow and would cause me serious problems. I might be strong minded, tired and emotional..... but I'm not stupid. Let's get this thing managed. Nothing has changed. Our lives have changed forever but I'm far from written off. There was some talk of chemo after the radio but the oncologist was wise enough to see I was in no fit state to discuss that today. So it's still on the cards, but let's see how we go.

I have cried all day. Truthfully I've been crying for about a week now. I think that's probably fair. It's not normal to be constantly optimistic 24/7. Plus I've had two major surgeries and I'm tired. My life has been turned upside down, out of the blue. But I will never, ever allow this to make me live my life in misery and fear. No way. I've got 3 or 4 weeks to get myself built up physically and emotionally. I'm going to focus on that. 

After this consultation it was over to the City for some practicalities. I had to get a mask made of my face/head and then have a scan. Slightly unpleasant but no big deal. The worst bit to be truthful was that the mask has to be fairly tight so it irritated my head wound. It's still a bit uncomfortable now. But it's healing really well and, as one if the nurses pointed out, it'll be hugely improved by the time I start treatment.

Compared to what I've already done, radio will be ok. There are some possible side effects; mainly tiredness. I might have a few bald spots where the beam goes in. Those of you that have seen my current look will know that I'm not bothered about that! Priorities. 

Unfortunately I can't stay up as planned. The Cancer Centre accommodation won't allow Neuro patients to stay alone (probably because we have a tendency to do strange things like fit etc!) It's not practical for family to stay with me every night. Plus why would you stay away from home if you're going to drag family there every night?? Luckily they arrange transport if you need it. Which I'll take. The big man has a job and just can't take me up every day. I don't want others to have to do that. It's too much. So I've asked for transport but will not avail of it every day - I can choose. That means if family are about for some of it then they can come with me. It's good that the hospital are flexible with it.

The staff at the City were fantastic. Very reassuring and took time to talk to me and reassure me. One told me that the routine of going up for treatment every day can actually be quite good. It puts your day in and you'll build up a network of others going through the same. She also said there is lots of support available and is going to get someone to contact me about that. Another lovely nurse! I've met many along the way..... im likely to have a bit of time free while I'm up there so am hoping my Belfast friends might consider the odd cuppa........ I know the City Hospital isn't a great location, but it'd be lovely if anyone was willing to meet me for the odd cuppa before or after treatment. I've been told I'll probably have to wait for my transport home (I obviously won't be transported alone so I'll have to wait for everyone to finish). Although thankfully I'll not be doing a world tour on the way up....... it'll be 2 or 3, not a minibus full. 

So that's the craic. Still scary. But no real change. The next stage of the journey. No timescales. No deadlines. I'll keep doing exactly what I need to do. I'm scared but I know I'm strong and I still have the best Support Team in the world. I remain horribly guilt ridden that my family and friends are having to go through this too. I wish I could do something to save their pain. All I can do is keep being brave and I can promise I'll do that. ..... mostly!! I'm sure I'll continue to have the down day, and I'll allow myself them. But generally I'll stay strong. The worst bit of radio for me is the extended time period..... the surgeries were awful but they were over and done with fairly quickly. Radio is 6 weeks. But then I remind myself of all the other people who do it on a daily basis. And the fact that it's 10 minutes a day. I remind myself of all the things I said at the start....... that of course it's scary but it's better than many get. That's still true. 

Thank you for your continued support. My biggest issue now is going to be maintaining a positive attitude so any help you can give is exactly what you've already done and continue to do...... don't write me off. Don't sympathise...... I'm still here! Don't quiz me too much about the diagnosis and the treatment - I often get upset and then I worry I'll get you upset, turning it into a bit of s vicious circle. Make me smile. Keep my spirits up. I'm not great with phone calls but I love texts/messages and visits from smiling faces! 

Thank you xxxxx

Friends and ice cream!

After feeling so much better, I had another panic attack last night. No idea where it came from. Sometimes thoughts just seem to creep in and you don't realise you're doing it. I got through it, but felt like it was threatening all evening. I slept no problem - feels a bit like I've mastered the nights and now the days have become the problem......

When I got up at my usual 7am, I didn't feel in great form. Weepy and still felt under threat of another attack. So I went back to sleep for a couple of hours. Then I got up, turned on the 80s music and had my shower etc. Shed a few tears but no panics.

Yet another lovely friend (of which I have many!) came round at 11. We had a cuppa and chatted. It was lovely to see her. Then she took me for a wee drive. Portstewart first; where we are ice cream in her car on the prom. Then a drive round to portrush and home. Exactly what I needed! I've so many friends who seem to just instinctively know what to do...... if it's not sending me messages, it's calling in to ensure my spirits don't dip. 

I never thought I'd be the girl who cries and takes anxiety attacks...... but I guess none of us know what's round the corner. The most important thing for me is to manage it all. I know I can do that, with the help of my family and friends. 

I never realised I was such an obsessive personality!! I don't actually think this has changed me all that much; it's just emphasised certain things.  It seems I get things in my head and just cannot shake them. So anything that has upset me, just becomes all I think about. That's very unhealthy..... Especially at the moment! 

I have said many times through this blog and to family/friends that I'll never worry about anything again, that my life with just be more fluid and that I'll take each day as it comes...... and then I do none of those things!! I need to start taking my own advice...... I guess a lifetime of taking things fairly seriously and being a bit tense doesn't disappear easily. I'm learning to emphasise the better sides of my personality- the Trish that loves to laugh, loves to sing, loves company and to chat...... that's the Trish that needs to come out. Not the one that worries (and can really be quite rude and demanding!)

A friend told me last night to write down each day 3 things I've achieved today and 3 things I'm looking forward to. Here's todays.......

Achievements

1. Up and organised in time for my visitor, even though I considered jammies.....

2. Wee drive out and ice cream in portstewart.

3. I'll definitely go for a walk when Big Man gets home.

Looking forward to

1. Getting tomorrow over and done with!

2. Visitors on Friday and reflexology.

3. My sister coming over at the weekend.

Not so shabby really.........! Getting there xxx

By the way....... (and this is a little rude, but necessary!)...... I know you all wish me well for tomorrow. Please don't message/text/email me anything about it. I can't think about it. I need to keep my thoughts completely positive. I don't want another anxiety attack so no good wishes please. Feel free to make me laugh, but no talk of tomorrow please. Thank you! Xxx

Friendship and yoga

Both should be available on the NHS!! At lunchtime my wonderful friend arrived with soup and sandwiches. We ate, we chatted. It was lovely. Then she left and I had a quick hour's doze (I can do that again now!) before she came back to take me to a one on one yoga and relaxation class. I thoroughly recommend it to anyone feeling a bit anxious. The breathing alone is all into your stomach so you have to concentrate on it; taking your mind away from whatever negativity has crept in.  The release of negative energy caused a few tears, but not in an unhealthy way. More of a release, that felt good. The teacher was fantastic. We did a few very gentle moves, and it felt good to be able to do them. 

My knees were a bit shaky, due to the lack of  proper exercise over the past few months. Ordinarily any shakes at all and I panic a bit that I'm about to have a seizure. Not today. I knew that wasn't the case. It felt good. I felt like I was achieving something but at a very gentle and safe rate. I also particularly liked 'the warrior' move....... felt appropriate! Again, a bit like growling at yourself in the mirror!

Yes, definitely a very good day. Thanks as usual to dear friends/family. 

This whole thing remains a rollercoaster. And I was never a big fan of rollercoasters. But throughout it I remain touched by positive energy and good people. All giving me strength. All helping me in a way I will never come close to articulating.

Xxxx

After a crash there's only one way you can go

After a crash there's only one way you can go....... and it's not down....... Last week was bad. The weekend was on ocassion the stuff nightmares  are made of...... But there's little point wittering on about being strong and not being beaten if you're going to suddenly turn into a crying panicker overnight! That was never me and I won't let it be now...... it's a bad job when you're breathing into your 'emergency sick bag' in a bid to try and control a panic attack. (I'm a terrible traveller. Suffer awful motion sickness - anything faster then a skateboard will cause me problems. As a result I keep an EasyJet sick bag in my handbag..... just in case. Never used it, have carried it for years. Emergency sick bag - don't knock it! Anyone who suffers motion sickness will understand!) 

Yes, it's ok to be emotional and it's natural to be scared. But I'm a strong person surrounded by loving family and friends, I have to take control of this again.

I've often wondered what this blog is about. Why would I suddenly become so public?? Why would I want to share this? I'm starting to think it's my way of giving myself a good talking to! In front of everyone else. I've meant every word when I've written it but sometimes I read bits back and know it was a brave face. Maybe I could only be brave if I publicly declared it?! Like growling at yourself in the mirror before you go into battle...... gggrrrrrr......!!

So, as usual with the help of family and friends, I'm back on an upward trajectory. I'm still tearful...... could start at any second. But the panic is managed, I think. Big man has been brilliant at supporting me. A dear friend has helped no end by giving and finding me support (a relaxation class today and reflexology on Friday) plus by just coming to see me and making me laugh. My beautiful sister has booked flights to come over again at the weekend - even the thought of seeing her makes me smile every time! And I continue to shamelessly sing along to cheesy '80s music. Some people have suggested some classics.... Hall and Oates anyone?? Nothing sad. Has to be upbeat. 

So I'm back on track. I'm not allowing negative thoughts again. I'm forcing myself to see people, to smile, to laugh even...... without putting constant pressure on myself to put on a brave face. I cry. A lot. But that's ok - so long as I stop!

I was up and showered by 7am this morning, after a great night's sleep. I've got stuff to do today. I know I'll have ups and downs. But I've stuff to look forward to and I'm not letting tears and anxiety ruin it for me and for everyone else. It's not fair on family to see me such a mess all the time. And the effort it takes to hide it can be literally exhausting.

Taking a bit of control again. No-one else can do it for me. Although so many continue to help xxxx

Music......duh!!

What has always been one of the biggest things in my life?? Music..... Why would I not be using it now?? 

After all the tears came anxiety...... I've felt a bit of that before now, but this was full on. Last night I had a panic attack. I think. I've never had one so can only assume..... my heart was pounding in my chest and head, I was shaking and just really, really distressed. I was crying and felt like I wasn't getting enough air. The big man talked me through it as best he could, but I was a complete mess. Eventually I felt asleep, exhausted by the whole thing. I woke a few times but not too bad (apart from the 05.49am 'we've slept in' moment....) This morning I was still panicky. Big man persuaded me to go back to sleep for a while, which I did. When I woke again a friend had sent me this..... http://www.anonews.co/neuro-anxiety-song/ very well timed. In truth my surgeon had told me to listen to two songs - one was the 'We are awesome' song from the Lego movie and the other was from The Troll film. I didn't do it. Rockers with 18 year olds don't listen to songs from kids films...... idiot!! This surgeon is amazing is every way. I trust her. I should've listened. 

I watched the video in the link that was sent to me and it definitely helped a bit. This made me think a bit more about music. It's been such a big part of my life; why would I not use it to try and calm me and lift my mood?? I always did in the past. I have listened to a bit of music recently but it tends to be pure rubbish..... Phil Collins is getting far too much air time! But Metallica doesn't lift your mood. It has to be something that'll make me smile. So today I've been using music...... the cheesier the better I'm afraid! There's still been a few tears, but I'm definitely finding music can pull me through a dip. I might still have the cry, but I'll also have a sing and maybe even a laugh. Unfortunately for everyone else in the house, it's got to be cheesy. 80s hair metal might cut it, but more often it's worse than that...... I'm currently sitting in front of the Now 80s music channel on Sky, watching Duran Duran's Wild Boys (a classic anyway!) I'd actually like cheesier..... Lionel Ritchie, Phil Collins (You Can't Hurry Love remains my secret favourite 80s song!). 

It seems every week brings new things.... this week was always going to be a rough one with my appt on Thursday.

The same person that sent the link also told me that this was the best advice she received during counselling "Today is (insert day) and I'm going to get up make breakfast/go for a walk/watch TV/write my blog/have a bath etc. it sounds rubbish but it really stops your mind from racing ahead. Anytime ur mind starts to wander just say it all again."

Good advice. I've used it much of today. I've been up, out, car picnic lunch and quick walk (had to abandon due to the terrain and sticking out bushes..... I wasn't quite sure how I would explain to my surgeon the tree branch sticking out of my head......), short time with my dad and also with my in-laws, then home, dinner and now chilling. I'm very tired, but that's probably a good thing! Might help me sleep better tonight...... no idea why this section is in completely different font..... but st least it's not in Polish or Russian (I've been accused of writing in both..... I suspect some of it was emojis..... they don't work in blogger!)

Thankfully I have a dear friend who is taking me to a one on one yoga and relaxation class, and also to reflexology. Those around me continue to hold me up...... 

Saturday is my birthday..... not sure I'll be out partying, but I'll settle for being at home with my lovely boys.  Listening to 80s music.....

Fin has just come home...... we're singing "it's a kind of magic" by Queen. Sure how could that not make you smile??!!

Xxx

Reality bites.....

At some point it has to hit...... This week, and particularly the past few days, have been that point for me. I've worked so hard to stay positive and fight hard..... I'm still doing that. Honestly, this week I've been really tired. I keep blaming the meds, but the shock and the double craniotomy might have had its part to play too! Yesterday I started to cry and couldn't stop. I've been afraid to sleep too...... not good as I know I have to. Last night I couldn't keep my eyes open during the news so I went to bed, with the agreement that I be woken for food around 9. Exhausted but couldn't sleep...... every time I closed my eyes I became completely convinced that I wasn't fighting. That I was giving in and just wouldn't wake up. Then the tears started. And just would not stop. We ended up ringing the doctor on call, I was so distressed. She was lovely, although of course wanted to give me diazepam...... I quoted my stats and told her where to stick them! She spoke to me at length and settled me a lot. Of course I still wouldn't take the prescription. No way. I'm taking enough. I don't need to add in crap like that. I'm not sure what I expected her to do.....! She offered to see me but I said there was no point - all I'd do was cry anyway and refuse the suggested drugs. Hard work! After that I eventually went to sleep but I woke up quite a lot. I felt very tremoury and was close to a couple of absence seizures. Combined with the usual blood sugar paranoia.

This morning I was up at the usual time (7am) - big man bringing me my tea and toast and generally listening to my nonsense. He even managed to persuade me to go back to sleep. Which I did. Until around 10.30. Exactly what I should be doing. And really not that unusual on a Saturday morning. 

Since that I've had lunch, gone for a short walk and then had a visit from lovely friends. I enjoyed their company and only cried a little bit at the start...... quite an achievement at the moment!

Now I'm watching a programme about pop music..... I had to fast forward through the bit about Radiohead (total dirge) and the bit where Travis sang at a fans wedding..... but other than that I'm doing ok. A few random tears, but not the sobfest ive had over the past few days.

Now the dinner is on. I'm going to eat my usual healthy meal, relax and get a good night's sleep. I know it's ok to cry and I'm letting myself do that. But I can't cry all day and then not sleep all night. I'm clearly suffering anxiety. We knew this already. I have a very dear friend who is helping me with this. I need to find a way to let it out without dissolving into a complete blubbering mess. And I need to learn to sleep, without mad thoughts and 'the fear'. 

Keep the positivity coming. I know I often say I'm fine when I'm clearly not. I know I'm often putting on a brave face at a time when it's ok to be upset. 

I'll get there. Don't doubt that. I just need to stay positive without putting too much pressure on myself. It's very hard to do. I know I say a lot of stuff repeatedly...... I'm not lying, I'm just on a bit of a rollercoaster. I often wonder if I should share it or not, but it seems silly to lie about it. 

I'm not doing negative at all. I'll cry if I need to but I'm avoiding anything that I know will set me off. 

Xxx

Weekends are best.....

At the weekends I get to have Big Man home all day. That's just not practical through the week...... and wouldn't be normal........and we'd probably kill each other! I like him being out at work - he sends me pretty photos of where he is (he's travelling about going to different locations) . Some days it might be a photo of a pretty road, another day it might be of a Labrador that's made friends with him. Not having someone here with me 24/7 is healthy and is how I learn how to be myself again. I need to do things for myself or else I'll just lie in bed all day and that's really unhealthy. The weekends though (especially long ones like St Paddy's Day) are lovely. There's someone here cooking for me, attending to my every want, listening to the tears that seem to be unstoppable at the moment, and also taking me out. 

Today I was awake for sevensies but went back to sleep for a few hours after. Truthfully I felt a bit shaky when I woke up again. My blood sugars were fine, but I just felt a bit unwell. Tremoury. That made me nervous and started another cryathon...... Feels a bit like I've been crying all week! Anyway, I got up, got showered. He helped me try and do a better job of combing my hair..... I'm making such a mess of that! Not that it really matters, but knots can be painful to try and comb out once they're embedded in there. 

Next he made me lunch and we went out. Terrible weather. I didn't want to go to portrush or portstewart on St Patrick's Day - I couldn't deal with getting stuck in traffic. So Binevenagh again. Couldn't get out the car, the weather was so bad! 

During the drive I received a phone call from someone who has been incredible throughout this entire thing. A work colleague who has treated me exactly the same from day 1. Makes me feel normal. A truly special person who I've appreciated so much.

Anyway, Binevenagh was too miserable so we came back and went for a short walk in a forest close to our home. Pouring with rain, but sheltered. I could put my hood up and at least get a bit of a leg stretch. All important.

When we got home Big Man had to pop to the supermarket so I have sorted out a small amount of washing. Nothing too much - just taking a load out, hanging it up, and putting another load in. All things any normal person should be able to do. Pushing just enough.....! Now it's time to put dinner on and then we'll watch a bit of tv (usually Pointless and the News) before a quiet night relaxing on top of bed, watching tv.

Then a good sleep hopefully! Tomorrow I'd imagine will go much the same. Though I might not sleep in. I'm not sure it helps me. I usually wake up feeling worse and often anxious. I guess I can't expect there not to be any symptoms, given what I've been through and the medications I'm on. But I get nervous of each one. I feel like I get one thing managed and then something else comes along (or comes back)....... the mental battle remains the hardest....... again, I guess that's to be expected when there's something in your head that shouldn't be there!!..... 

I can't even begin to think about my oncology appt on Thursday. I'm terrified and it puts me into such a negative place. So I'm blocking that one out. It's ok to cry, but I can't cry all the time for nearly a week! I'm locking that one away, continuing to be positive, and will deal with whatever they say whenever they say it. I can't change it anyway. I'm terrified of radio or chemo, but honestly also terrified they'll say they won't do anything..... that I'll get a timescale. I can't imagine them wasting so much time and energy on two surgeries and two weeks in the RVH if that was the case, so I know I'm being stupid. Good luck to any doctor who tries to tell me it too....... not happening. The surgeries were successful. We're winning.

So in general, doing ok...... emotional, scared, anxious, fighting, strong, grateful for everyone around me.  Probably the same emotions everyone with a serious health diagnosis feels. And that's ok. We're all human.

Keep picking me up, keep making me laugh. It makes such a difference.

Xxx

Food advice.....

Steroids make you eat...... lots!! BUT they also mess with your blood sugars so you have to be really careful. Plus if you're going for further treatment then it's important to eat the right stuff (I've been advised to eat protein and brightly coloured veg if I'm havin radiotherapy). You shouldn't take all those meds on an empty stomach anyway. Your tummy will be unhappy enough...... my day looks like this, food wise;

7am (sevensies) - tea and brown toast with jam. Check blood sugars and give a wee boost with a glucose sweet and/or Ribena if needed.

12noon - lunch. Usually a nice salad (there's a lovely M&S one with avocado that I'm very partial to) or I've had some great homemade soups given to me that have been great.

5pm - Dinner. Again, loads of generous people gave left round healthy homemade goodies. I insist on salad or veg with everything. So a lovely spaghetti with nice salad is a winner. Or chicken and salads or nice veg.

9pm (ninesies) - Very important before bed to stop blood sugars falling overnight. Cut of tea with cheese on brown toast. Sometimes I really don't want it but I make myself eat it because I know how important it is. Slow release carbohydrates. Excellent for keeping sugars steady overnight. I'll still often wake between midnight and 3am thinking my blood sugars have dropped and I'm going to go into a coma...... nonsense! When I do get up and check them they're always fine. I only had that one incident but it's haunted me a bit........ maybe it's the cheese before bed?!!  Or just that I'm still a bit traumatised by everything that's happened. Probably fair! I always check blood sugars again before I settle down (usually around 10pm now - it was a lot later before). Truthfully I'd check them 10times a day but that's a bit stupid...... and completely unnecessary. Sometimes I do it anyway just to reassure myself. Other times I tell myself to wise up and resist doing it. Fin stopped me the other day...... completely put his foot down with me! "Mum, you checked them 5 mins ago. You're not doing it again. There's no need. It was 5 mins." I had no idea when I'd last done it. I know he wouldn't lie to me so I didn't do it again. I'm going to leave my fingers like pin cushions. At least they'll match my arms I guess - I think I bruise easily..... Even my stomach still has the bruises from the anti clot stomach injections...... which my Wardmates told me to get! You won't want more jags, but getting a clot from lying in a hospital bed all day is really the last thing you need! The nurses were very efficient at giving them anyway. A tiny scratch. No big deal. 

When you're in hospital of course your food is delivered regularly. I ate the rarest mix. Everything had to include veg and often mashed potato. One meal was sweet and sour with mashed potato, carrot and parsnip, broccoli and gravy..... bleaugh!! The domestic laughed but then told me I was the third patient to order it. Your body knows....... if you're on steroids then think slow release carbohydrates....... plus lot of veg and fruit. I'm still obsessed with the pink lady apple. No idea why. They just taste good. Plus my jaw is a bit sore from the surgery, so eating an apple can feel like s good exercise (not that I don't still talk all day!!)  when you get home you'll need help with food - I'm tired by the time it gets to ninesies and could miss it if hubby didn't bring it to me. I know from my sugars disaster that I need someone to do that! Sevensies are the same. You're only awake, but you need to get your sugars up again. Hubby gets up every day at 06.30am, whether he's working or not, to feed the wee gremlin! I'd be lost without someone doing that and not questioning the importance of it!! 

Balance.........

I know I need to rest, I accept that...... especially with everything that's happened  and likely more treatment to come. But what I've learnt is that lying about does not work for me! It feels defeatist. The meds make me dopey, especially in the morning, but I don't rest particularly easy at any time of the day or night. There always paranoia over something or other...... I'll get counselling sorted out for that and get in top of it. I also hope to reduce the meds again, which has got to help. Again, it's about balance. You don't want to reduce them and have something happen. Especially not when you're not in a hospital.  I'll get it sorted with the experts. 

Today I was up and showered before 7am. I spent the morning lying on top of my bed. Very tired and feeling a bit woozy. But I had friends coming up late morning and I was excited at the prospect of seeing them. Worked a treat!! Like a breath of fresh air. Positive vibes, happy energy. Just what the doctor ordered! When they left I felt so much better! Another friend also called, although he's not feeling well so I couldn't even get a hug..... onevof the happiest people I know though, so lovely just to see his happy face!

Afterwards I had healing homemade vegetable soup for lunch (from one of my food saviours!) and then went for a short walk with Fin. 

I'm just back and relaxing on top of my bed, watching rubbish daytime tv. Feeling so much better than I have done the last few days. 

Seems my balance is to push a bit, but balance it with rest and relaxation. I simply cannot relax all day. It feels like I'm not fighting. It doesn't work for me...... 

I keep saying it, but this whole experience seems to have just emphasised my existing personality. So I'm still me, but I've no tact and just say whatever is in my head. People I like become my my lifelines....... people I don't like I am brutal with! It's not deliberate. I try not offend anyone....... I just don't seem to know how to behave properly!! I'm not sure I ever did..... there was always a bitch in there, alongside the laughing, positive, happy girl. That remains the case now.

Thanks to everyone who sent me positive messages last night and this morning, and to my wonderful visitors today. Yet again, my Support Team form my cage. A much better day!! I'll still get counselling and allow those negative  feelings to come out, and speak to my medical team about the meds, but I know a positive boost can make all the difference. As I've known all along really!

Xxx

Did I mention you guys rock???

I'm sure I did! After my earlier post, which was probably a little 'raw', I have been inundated with messages of support and love. It's been lovely and has totally lifted my spirits. Thank you so much! Tomorrow I'm getting up early, getting showered and dressed and looking forward to a visits from people I love. I'll push just a little harder than I have done the last couple of days. I'll cry if I need to, but I'm not sure I'll need to...... I feel so much better thanks to my Support Team. Getting the balance - it's ok to push, it's ok to rest, it's ok to release emotion..... haven't quite got the balance right yet, but I'll get there. Thanks, in large part, to family and friends. Yep, you guys rock!! I love you xxx

Finding the emotional me.....

I was never a ' crier'. Wasn't raise that way. You hold it in. Be strong. Stiff upper lip. Wrong!!! At some point during an experience like this, the emotion has got to come out. And you've got to let it. I've cried a few times since this started, but the past few days have been full on cry-fests. I started this morning because I felt a bit sick. That led to 'blood sugar anxiety'...... how am I supposed to eat and keep them healthy if I feel sick?? Plus the I can't sleep either. Resulting in me. Ring emotionally and physically exhausted. 

I rang my GP about the sickness and they've left me a prescription........ which I won't take unless I actually start being sick and really need to! I even questioned whether it was ok to take with all the other medications I'm on....... because I'm a doctor now...... a cheeky one at that! He was very patient and understanding.

I hung up and the tears started. Not brave, not strong, full on crying my wee lamps out! Couldn't stop. Thankfully a few people sent some very well timed messages. My favourite being a photo of two of my favourite people and great supports during this whole thing.

Then a dear friend (who handily is also a trained counsellor) arrived at my door. I'd already ignored a couple of knocks - I couldn't answer in that state! But she shouted out so I knew it was her. I let her in and we chatted. I cried, she listened, she reassured me and just let me get it out of my system. Exactly what I needed. A wonderful person, a wonderful friend..... with impeccable timing!

It's ok to get upset. I keep saying that but then beat myself up when I do! I'm so conscious of upsetting others around me. Plus I still worry that I'm being weak if I cry. The fact is that this whole thing has been traumatic. Not just for me I'm sure! It's so hard to comprehend what we've been told. I've had two brain surgeries and more treatment to come. Of course I'm a bit traumatised. Anyone would be! Having a cry doesn't mean I'm not fighting. Doesn't mean I'm being weak. Doesn't mean I'm lying down to anything. Just means I'm accepting the reality of the scariness of the situation. As a friend said to me earlier, that I'm 'owning my feelings, both positive and negative'. The two go hand in hand.

I post this for anyone going through something similar (and to remind me of it happens again). It's ok to be upset. It's ok to be scared. It's ok to feel overwhelmed by everything that's happened and continued to happen. Get it out of your system. Let it flow. Do both. Keep yourself positive with the wonderful people around you. But accept you might have bad days. It's not weakness. It's necessary.

I have some lovely visitors coming tomorrow. I can't wait to see them. My gorgeous son is off school for a couple of days. Then it's the weekend and Big Man will. E off. I'll do stuff. Go out for a while. Get some fresh air. Keep on keeping on. Remind myself of how lucky I am. Rest up but push too. 

Yep, emotion is ok. Don't be afraid of it. 

Bye bye stitches.....!

Stitches out today. I was not doing great..... I've had a few days of feeling a bit nauseous, have been stressed over my blood sugars (although now reassured by excellent GP and District Nurse) and was in a bit of a tizzy over getting the stitches out. Plus I was tired and Belfast is a long way when you feel a bit sick, are tired and a bit stressed out.

By the time we got there I was a mess. Lots of tears. Plus we somehow managed to mess it up! We had another appt for something else in May...... we all totally misread it and arrived in the wrong place at the wrong time. Not good when you're already in a state.

Thankfully we tracked down the nurse who was due to do it. I actually think she stayed late to sort me out. She was just incredible. Reassuring but also very capable and just got on with it. Of course it hurt a bit, but really no major drama. Especially not compared to everything that's come before. 

I nearly broke the Big Man's hand in a vice like grip, I gritted my teeth, and I let her do her thing. Like my surgeon she had that wonderful mix of confidence in her abilities with humility and kindness. Just a good person. 

Truthfully it was probably no worse than someone pulling your hair. Uncomfortable but not exactly high drama! And so worth it. Truthfully, I hadn't really looked at it before, but even I can see it's a neat job. No big ridge or mess. The nurse gave me a hug, reassured me, let me get the tears out. What a wonderful person she is. One of some I'll never forget. Born to be a nurse. 

I even got to pop in and say hello to some of my ward of Winners, although most of the faces have changed again now. 

I'm home now, exhausted, and with a headache, but proud and relieved to have got through today. Again, with the support and reassurance of others. Another small step. 

This evening will be spent relaxing, before a good night's sleep (achievable now thanks to the reassurance, better understanding and better control regarding blood sugars).

Continuing to take as much control as I can, whilst listening to medical experts. Supported by so many. 

Symptoms

A lot of people have asked about symptoms. I guess everyone's paranoid they might have one too now!! Honestly..... not many. Though hindsight is 20/20. I had been having headaches. For a number of years. They were out down to sinuses, which is probably fair. I do have bad sinuses too - often get infections. So every time I had a bad run, I'd have put it down to a sinus infection. Sometimes they gave me a 'surreal feeling' that I hated. Just a bit 'out of body'. I hated that. I had sinus surgery a couple of years ago andvthat did alleviate the sinus problems I'd had (again suggesting I did have sinus problems too!) I did ask about the scans but they're very different types - one looks at bone and one at tissue, so no clues there. 

Other than that, headaches. Bad headaches. I honestly thought they were hormonal and just got on with things. 

They got to the stage where rhey became 'visual'. I'd get a flickering over my eye, like a kaleidoscope. Horrible but not as bad as a full blown headache. Again, I thought they were hormonal and just battered on with things. They left me very tired afterwards. 

Tiredness I guess is another one. Although bear in mind I was travelling 120 miles round trip every day, I was up at 5.25am every morning, worked hard all day, and not home until 6.30/6.45 at night. So of course I was a bit tired!

Lack of concentration is another one. I lost the ability to watch tv in the evenings. I couldn't follow the plots. Wasn't interested. Would rather go to bed and read. Again, I put that down to tiredness. Long days.

The other big one was an inability to remember names. Not something you immediately think of as being a problem. I would look at someone, know I knew them, know I knew them well enough to talk to, but be unable to pluck their name out of my head. Probably not hugely unusual. I did have one in particular where someone spoke to me and I just could not think who he was. I kind of knew but couldn't put my finger on it. I was aware of it and apologised to him after. But just couldn't place him or what he was talking about. But I knew that I should.

Daydreaming? Think I always did that! Lack of concentration in meetings at times - is head everyone talking around me but just not be able to focus on what was being said. Not always though. Sometimes I was fine and even took minutes!

I honestly can't really think of much else. A few weeks before the grand mal I was talking to someone at work and kind of slabbered a bit out of the corner of my moth. We laughed about it but I was embarrassed.

A bit of anxiety maybe too, though I've always been prone to that. Particularly in the work context. I've always taken work fairly seriously. I want to be good at it. I want to be respected and well though of. Any suggestion that I'm not much use will cause me to stress out a bit. I suppose that probably increased, but in context, I moved to a new job with people at the top of the organisation. Of course I didn't want to mess it up! I wanted to be good. I wanted my team to like me. I wanted to be well thought of.

That's really it - a bit forgetful, headaches, anxiety, lack of concentration. Not particularly abnormal I don't think! Nothing you'd look at now and immediately think we're danger signs. I do think I had another seizure a week or two before 'the big one'. Again I was asleep but woke up making very strange noises. I thought I was having a dream. Was aware of it but not alarmed by it. Now I think it was probably a facial seizure as I've experienced them since, but at the time I thought I'd had a dream.

Nothing a major interest really. 

Trickery again......

The mind plays tricks...... probably especially when it's been through a bit of trauma! My paranoia over blood sugars continues. I think I checked them 5 times yesterday. All fine. Then last night I woke up at midnight. Sweating. Scared. Convinced they were either too high or too low. I got up and sneaked into the toilet to check them. Guess what? They were basically the same as they had been when I went to sleep. Paranoia setting in. My mind just fixates on certain things. It's ridiculous. I've spoken to my meds nurse and steroids tend to increase them rather than decrease so not really sure what's going on there. I'll continue to be fussy about mealtimes and plenty of veg. Unfortunately means we can't change dosage again today. Makes sense, but still ultimately want off them.

Looking forward to getting stitches out tomorrow. As uncomfortable as I know it'll be........ seems minor compared to what's happened before, just need to grit my teeth and get on with it! Plus I need to try and sort this mess of hair!! I can shower and wash my hair in sections. Just have to be careful of wounds. I make a mess of this. One of those times I'm grateful for having fine hair. If it was thick I'd be in major bother. As it is I can wash it and dry it. Kind of. I have a knot at the back that I'm considering taking scissors to....... not yet though........ I'm still trying to get it out with my fingers...... unsuccessfully at the moment. Still..... if I'd had lovely thick, curly locks I'd be in major problems now! I'd considered getting it cut up prior to surgery but been advised not to. Good advice. Having it longer actually makes the wounds less obvious, especially the one down the side of my face. Plus any bald spots can be covered by just flipping my hair over them. Just another reason why I think it was s good thing to be plain! I don't really worry about my hair (grey as the roots are and tatty as it is!), I'm not one bit bothered about being seen out in jogging bottoms, wi black eyes are nothing to me...... low maintenance is good! Yes, of course I look forward to putting on a pair of jeans, a bit of make up, dying my hair red again, and feeling prettier....... but it's not particularly important to me now. Priorities....... 

if you're pretty, like your make up, spend hours on your hair or are fussy about how you look then I don't advise a brain tumour...... truthfully, I don't advise one anyway!! Pain in the ass. But not to be lain down to. Get up,  e strong, surround yourself with wonderful family and friends and show it what you're made of! 

Xxx

Damned sure I'm not being beaten by medications

I know I've made my feelings about medications clear from day one. The fact is that they've been necessary. I know this. The medical experts know what they're doing and I'm sure I've probably seemed very ungrateful with all my meds based rants. Total control freak! I've just found the side effects really difficult from the start. They've made me doubt myself and then have led to some scary things happening. Fact is that they've probably also saved my life. 

I got my blood sugars evened out this morning and have checked them about 3 times today. They're fine.

I've cried a lot today. Can't seem to stop. That's a bit alien to me..... not how I would've been. But I know I need to let it out so I'm doing that. I mostly worry that it's upsetting for those around me. I don't want them to see me constantly crying. I just can't seem to stop today so I'm letting it out.

In good news I've been up and out. A late start but I've been out to Ballintoy for s short walk. Beautiful. I'm sure I scared the life out of a few people...... two black eyes (much better than they were) and a nice craniotomy wound. Part of me is quite proud of it though. I want to tell people "I've had two craniotomies and look at me! I'm out walking and doing stuff!"

Home now and having a nice relaxing bath. Same deal as before. Not too deep, door not locked, people in house. I'll spend the whole time singing anyway! So they'll know I'm safe. Then dinner and a nice relaxing evening. 

Of course I have almost run out of strips for the blood sugar machine..... typical! Have sent the big man to the chemist. Is he's luck buying them I've issued directions that he should contact Dr on Call and get prescription urgently. Need to get sugars managed. It's important and not too difficult to do really.

A lovely mince pie and veg from my dad's partner for dinner. Great!

Quick update - blood sugar strips purchased. £15 well spent! I've checked them again and they're fine. I'm going to end up with fingers like pin cushions to match my arms at this rate! Small price to pay..... Lovely bath and looking forward to a healthy dinner. Then chill out watching crap tv. Sunday night not be so bad...... news and Countryfile perhaps?..... 

Xxx

Diabetes - a new joy!

Long term use of steroids can make you diabetic....... I'd already been warned of this. When I first came home from Causeway an appt was arranged with District Nurses to call and check my blood sugars every so often. As usual I decided this was something I could control myself...... I asked for a kit to measure them myself. The lovely DistrictNurse arranged this for me. 

Before I went up to the Royal I had been faithfully checking them morning and night. Since I came back I've been lazy. Haven't checked them. Mealtimes have become very important to me and I eat at very regular times - 7am, 12 noon, 5pm, 9pm. Good healthy food. Plenty of fruit and veg. Usually something a bit sugary last thing at night and first thing in the morning because overnight is when sugars tend to drop. Last night I was tired so I didn't have my usual 9pm snack. I had an apple but then went to sleep early. I woke just after 9 feeling awful. I knew it was low blood sugars as it happened before when I was in Causeway and it's a pretty distinctive feeling. Head pumping, shaky, feeling sick..... I check my sugars..... 1.4...... that's really bad. They shouldn't really drop below 4 and mine have never been below 3.1. So I took glucose tablets and Ribena to raise them. Checked them again.......10....... not great either. Too high. 

I had a total meltdown..... I'm now putting myself at risk of a diabetic coma. Like I haven't enough going on. It seems like the ultimate cruelty. I was terrified and no way I could sleep. Is there no end?? Cancer, epilepsy, diabetes..... give me a break. 

So we rang Doctor on call, who was excellent. Explained it all to me. Reassured me. Said to check them again in a couple of hours. Which I did. They had averaged out again. So I knew I was ok to sleep. Which I did. Until my 7 o'clock alarm. 

Now I've had my sevensies - cocktail of medications, tea and toast with jam. I'm going to go back to sleep for a couple of hours. No breakfast out. It's too much and I'm too tired. I'll do it another day. Couple of hours extra dozing then I'll see my sis before she heads back to Manchester. I'll get up and showered, go for a walk. Do all the stuff I make sure I do every day. 

I'm going to find out a bit more about this side effect and try to learn to manage it a bit better. I know I'm letting them drop and then spiking them and that can't be right. I eat good food regularly but I'm clearly getting it a bit wrong. The drop in steroids is probably playing its part. Ultimately that's good. I've wanted off them from the start. I'll accept whatever my surgeon and meds nurse tell me because I trust them...... 'accept' might be a strong word...... we discuss..... negotiate....... it's still my body but they're the experts. I've got to take some control. It's the only way I'll beat this. I know my own mind and I know my own body. If we don't discuss things then they couldn't know what's going on. I'll discuss it with them again next week. Get some more advice.

Still somewhat angry at the repeated blows that seem to keep coming. But still taking control of what I can. People manage diabetes and epilepsy every day. I think I've got the latter controlled now. The former just needs some understanding and a bit of work. I can do that..........

Some great messages of love and support when I woke up this morning. Thank you as ever xxxxx

Another day in paradise.....!

Another lazy start....... I woke the Big Man at 00.49am to tell him we'd slept in and that I'd missed my 7am medications. Not true. Obviously. I promptly went straight back to sleep. Waking up at 7am was then difficult, but he made me. I had my usual medications and ate my toast and tea. Then went back to sleep for a couple of hours. I'm nervous of sleeping too much, but I've been told to rest up before further treatment. Trying to get the balance. Up st showered and dressed by 11am. Ready for my sis coming.

My beautiful sister and her boyfriend came over again. She may as well just move back here!! We all went up to the statue at Binevenagh- a lovely short walk and then a car picnic. It was great. Beautiful day, great company, good food, stunning view....... a good day!!

Now my sister and I are chilling out together. We're going to enjoy another good 'food thank you' for dinner - stew this time. Then maybe watch a film, or just more rubbish tv. I'm good at that now!! 

I'm considering going out for breakfast in the morning. It's hard because I look such a fright. Plus I'm tired. I'm worried I'll put people off their food. Think everyone's a bit worried I'll become agoraphobic though.....! I know I can go out in public, I just generally don't choose to. Why would I want to? I go for a walk every day. I'm often home alone and quite enjoy the freedom of that. I'm just not keen on seeing people I don't know. I'm often not even keen on seeing people I do know! I'm being very odd. I realise this. 

My mad need to blog has made me more public than I'd ever have been before. I'd generally have been a fairly private person. I've over 11,600 hits on this blog - that's mad! Who's reading this crap?? Half the time it doesn't even make sense. But for some reason it's helping me. And hopefully one day could help others in a similar situation. Who knows. It would need a lot of tidying up. 

Right, dinner time! And food remains very important to me..... despite the drop in steroids, I'm still fastidious about mealtimes..... 7am tea and toast, 12noon lunch (usually salad, preferably with avocado), 5pm dinner (must include salad or lots of veg), 9pm ninesies (tea and probably ginger nuts, usually followed by an apple). 

A good day. Impatient to get to the next stage of the journey now. Need to maintain the momentum...... bring it on. Radiotherapy?? I'll start tomorrow!! Not possible I know, my oncology appt isn't until 23rd (2 days before my birthday). Stitches out on Tuesday - good! Yes, it'll probably hurt. But it's itchy and they need to go! Slight bald patch and scar down side of ear doesn't bother me one bit. Who cares?? 

Xxx

If you're visiting someone who's had brain surgery.....

Sorry, on a total blogathon today! 

This one is for family and friends..... if you're visiting someone who's had brain surgery there are certain things your loved one may find intolerable..... these were mine-

Hearing aids - change your battery before you visit. The squealing can feel like someone trying to tune into Radio Luxembourg in your brain. Excruciating.

Children - awful I know. I found children just too much. Too unpredictable. I was scared they'd knock me over. The noise was too much. They look at you and know there's something not right. Plus they always seem to have coughs and sneezes. One wardmate had her son brought in to see her at one stage. Bearing in mind we're being told our biggest risk from surgery is infection, this child quite clearly has the cold. He's coughing and spluttering the whole time. His mother is very ill . I was really cross at the irresponsibility of it. The child shouldn't see his mother like that, he shouldn't be in a hospital where there is so much risk of illness to him, he's clearly unwell and putting everyone in the ward at risk. He's bored and whining. Take him away. For everyone's sake.

Mobile phones - put them on silent. I couldn't have survived without mine, but I put it on silent and kept it under my arm. That way I could feel it when I received messages etc, but I wasn't disturbing the whole ward.

Alarms - buzzers are constantly going off. They're necessary but often very annoying. 

Strong smells - don't wear them, don't spray them. It's too much.

Hospital Essential items

Little things can become very important in hospital. I used to message my sister with lists of things I "needed" at all times of the day and night. Everyone is different, but these were the things that helped me. If you have a family member or friend having temporal lobe surgery then it might be worth considering, or even just talking to them about it;

1. Cotton nightshirts that button at the front - mine were bought in Tesco. Get a bigger size than you'd usually need. You want lightweight fabric. It can get really warm in a hospital ward. You can't really pull anything over your head so these allow you to be fully clothed but comfortable. You've got cannulas in your arms too so these can be safely pulled over. Also they can easily be taken off to allow you to wash. My sister helped me but a nurse can easily do it too. You should be able to wash yourself but it's good to have someone else there just in case, especially st the start.
2. Slippers with a decent sole - I was told off for not having a back in mine. You don't want to slip and it'd be easily done.
3. Soft tissues - your nose can get really stuffy from being indoors. I like the balsam ones. also if you're feeling a bit weak and slabbery down one side, a tissue allows you to cover it a bit. Makes you less conscious of it.
4. Light dressing down. Again, you'll be up getting showered etc. You don't need to flash your backside to the world! I found fleece too warm. A light cotton dressing gown was perfect. I think mine came from Dunnes. Pockets are good too for phone and tissues.
5. Wet toilet wipes. Medications lead to unhappy bottoms! It's the last thing you need. 
6. Comfy knickers. You're likely to flash them to lots of people. Plus wards are mixed. Mine were from Asda. Just comfy and roomie, but pretty too. Nothing I'd be embarrassed by.
7. Watch. I put mine on very loosely every morning. Why would you try and guess the time?  Just look. Check the date on your phone too. I repeat the day of the week constantly.... 'and it's Friday? And it's Friday? and it's Friday?' Nothing wrong with that. You're just orientations yourself.. 
8. Glasses. If you wear them. My eyes were so swollen there was no way I was getting lenses in. My glasses mostly hung crooked on my face, but I didn't care. Just to be able to see properly helped. Less disorientated. I didn't really trust my eyes. Having my glasses on helped. I even took them to theatre with me. Waking up after anaesthetic is confusing enough. Glasses at least helped me understand where I was and what I was seeing.
9. Phone. Mine became like my lifeline, messages from people helped keep my positivity up. Although I did become a bit of a nightmare. 5am texts. Plus demands about why people hadn't responded to Whatsapps. At one stage i told my sister of my poor husband  'I know he's read that. Why has he not answered? Tell him to answer it. Now.' Apparently he was driving at the time. My response? ' I don't care. It's important. He should've pulled over.' What a witch!
10. Long phone extension cable. As above. My phone became my lifeline. I kept it on silent so it didn't disturb the whole ward. A long cable allowed me to put it under my arm. That way I could feel it buzz but I wasn't disturbing everyone on the ward.
11. Soft facecloths. You can use to wash yourself. Just slip off your nightshirt and you can give yourself a nice wash. You probably won't be allowed a proper shower initially. But you can sit on a seat in the bathroom and get clean. It'll feel really good. Also, if you have facial swelling you can dampen a soft cloth with cold water and use it as a cold compress. One doctor told me it had no medicinal value. I laughed and said "you've clearly never been punched in the face!" It reduced my swelling within a couple of days. I was able to see out of one eye. An achievement considering how I'd looked after my initial surgery. Plus it was comforting. I'm not sure why, but it was. 
12. Roll on deodarent. I found the smell of sprays too harsh, but to be able to wash and put on a bit of deodarent will make you feel a bit more human. 
13. Toothbrush and toothpaste. Again, all helps you feel human. Plus I had wardmates feeding me pickled onion crisps at midnight some nights, so I imagine I wasn't pleasant for medical staff the next morning! I was like a wee gremlin......... the pickled onion were good though! 
14. Baby hairbrush. When you can finally wash your hair, it'll feel great. My sister did mine with a jug the first time. We were only allowed to wash bits of it. So it was a bit of a mess. Still felt great though. You need to be really careful brushing it after though. You've a couple of big wounds on your head. And stitches. I satlike a mermaid brushing mine for hours after the first proper wash. I was even able to dry it on a really low hairdryer setting. Again, all helping with the feeling normal. Plus it felt like a massive achievement. Re-learning how to do something that was once simple.
15. Gentle shampoo and conditioner. Baby shampoo is too harsh. I was recommended Dr OrgNics. Available in Holland and Barrett. I got the Manuka honey one. Smells great! Once you're able to fully shower, it feels amazing to be able to wash and condition your hair, although you still need to be careful. There's wounds and stitches. Go easy.
16. Tasty food. The steroids made me obsessive about food. They mess with your blood sugars too. I ended up with two bags - a sweet and a 'slow graze'. The sweet was filled with rubbish. For if I needed to up my blood sugars quickly. Glucose tablets and Rubens are the quickest things. Ginger nuts became my favourite thing and there's always a snickers in there! The slow graze is more of a nose bag for through the day. A healthier way of doing it. Fruit and nuts, for some reason breakfast biscuits (which I'm sure have no nutritional value whatsoever). Pink lady apples were also a necessity. I still eat one every night before bed. Couldn't survive without them!
17. Soft towels. Again for washing and showering. You want soft and comfy. Nothing rough. You'll be a bit nervous about cannulas and brain drains etc. Plus you'll want to try and do it all yourself, which you should be able to do so long as someone is there monitoring you. 
18. Notebook and pens. Write everything down. Everything! You don't remember half of it, or you'll just make bits up! Writing it down means you can check back. Don't beat yourself up over it. Just write it down and then check back if you need to. 
19. Skin cream. Aveeno for me. Your skin gets dry from being indoors all day. 
20. Nice shower gel. Again, helps you feel human. 
21. PJ bottoms. Again, soft, light and comfy. A size bigger than usual as you'll be a bit heavier due to steroids. 
22. Snuggle socks. If you're not getting properly dressed it can be lovely to sit in comfy nightshirt, jammy cottons and snuggle socks. Easily kicked off if you get too warm.
23. I got people to send me happy photos. I also read back through some of my cards. My epilepsy was predominantly in the form of absence seizures. Initially I thought I was paralysed down my left hand side. I wasn't! It was something similar to what I imagine a panic attack to feel like. Preceded by a really strong taste and then a feeling of complete fear. Horrible. I managed them by flexing my hand and foot (see? They work!), looking at funny photos, getting family to talk to me and tell me I'm ok. Eventually I got to the stage where I could managevthdm on my own. Even by just thinking positive thoughts and moving my hand and foot. 
24. The other form of epilepsy I've had to manage is facial seizures. I described these as a 'flappy fish' as it was like throwing a fish out of water, or like being tasered to the face. I was conscious during these and could often hear my own mouth slapping about. Very scary. You need reassurance. Someone just to hold your hand, tell you they can see what's happening and that it'll be ok. Plus remind yourself it's not a grand mal. It's unpleasant but it won't kill you. I haven't had one in ages but feel happy I could deal with it if it happened. 

Right, up and at 'em!

I can't have another day sleeping! It feels defeatist..... I know I need to rest up, but I literally slept all day yesterday. That doesn't feel like fighting to me. 

So today I'm up and showered early. Big man hung about to ensure I was safe. I suspect my energy levels have dipped a bit due to the drop in steroids. Sure that's good - I've done nothing but whinge about them for 6 weeks for goodness sake! So a wee energy dip is worth it to get them down. Anyway I'm up today. I'm showered and hair dried..... ish..,.,,. It's not s great job, but sure it's a mess anyway! I'm dressed in non jammy items...... it's close....... not quite 'outdoor clothes' but I could answer the door without complete embarrassment. People go to the shop in worse! Not that I will answer the door. No intentions! Big Izz and I are lying on the bed, watching daytime tv. I'm up but I'm relaxing. Not doing too much, but not lying about either. I might have a doze later, we'll see. 

I continue to love all your messages. Such a variety and every one brings a smile to my face. My Ward of Winners stay in touch too. I can't wait to meet up with them again. We shared something few ever do, and hopefully never have to. But it brings an unbreakabke bond. I'd do anything for them. I miss them, though I'm delighted to be home. I'm lucky to have a fairly simple, comfy house. A bit like its owners, there's nothing fancy about our house. It's a simple home. Nothing fancy. A semi detached bungalow we've been in for about 19 years. Could do with a paint. Needs the en suite re-done. Definitely needs the facias done. In a small cul de sac, with lovely neighbours. A few younger children that I've watched grow up. All boys. All gorgeous. All a credit to their parents. 

At one stage we talked about moving closer to Belfast. With me working there, big man changing jobs and Fin hopefully going to Queens, it made sense. I can't imagine that now. I can't imagine ever moving out of this house! It's become my haven. It's my home. The place I've raised my son. My simple, unpretentious home. More than we could ever need. My bed is the most comfy bed in the world. I want for nothing more. No, I can't imagine ever leaving here. Big Man talked about getting a new bed and I looked at him in horror...... I don't want a new bed..... I want MY bed. The same one we've had for far too long. I don't care if the mattress needs replaced. It's mine, leave it alone, I'm sitting on it now. My blanket of love over me, along with my Buddhist prayer blanket. Big Izz is lying at my feet. Loving every second of me being home! I am completely content. 

I have no idea how people do this alone. It's frightening and it's hard, but I've had so much support. I can't comprehend how you fight battles like this on your own. I don't think you could. Doesn't bear thinking about.

My head hurts quite a bit today. It did yesterday too. Not excruciating, but definitely starting to make itself known. I'm sticking with paracetamol and ibruprophen. No need for anything more than that. Not that I'd ever allow anything in my veins anyway! In fairness, it's really not too bad. Considering I had my head cut open twice in a week, a headache is really not too bad. My eyes are still black but the swelling is way down. I can see out if them. One is a bit bloodshot, but again really not that bad considering. The side of my head is quite swollen too..... it was cut open...... I'm sure it'll take a day or two! 

I remain totally committed to fighting this. I remain grateful I didn't get told worse, and completely grateful to everyone who's helped and continues to help on a daily basis. I believe I will beat this. I believe I will see you all really soon and that I'll be the Trish you always knew, xxx

Food thank you's!

A special thanks to the people who have brought food! Yesterday we were given 'spaghetti bolognaise-ish' and 'paprika pork thing', tonight a lovely stew. Full of healthy, natural, organic ingredients and so comforting. Really appreciated. By the family too - I never fed them like this!! 

I still find it quite funny that I'm craving the foods I've been advised to eat - salad or. Sf with everything plus high protein. I'm obsessed with avocado and love a good chicken burger with loads of salad. Poor Big Man spends half his life in the supermarket with very specific lists...... that he's not allowed to deviate from!

I'm still struggling to keep my eyes open today, but that's ok. Surgeon had told me to rest up. Plus my steroids have been reduced again (hurrah!) so I'm not as hyper..... I know some of you might miss 'that' Trish..... though I suspect many are exhausted by her. Not least my poor husband! I was always a talker, but the steroids made it world record worthy! Glad to get them reduced and feel a little more normal. They should come down again next week which will be great. Not loving them at all.......

So all in all a very lazy day. But sure that's ok. Two craniotomies in a week - you're entitled to feel a bit worn out! Still fighting, just allowing myself a bit of down time. 

Have been doing some brain training too...... not sure if there's much point, but thought it might help. The tests the other day were similar to the brain training apps you get. They're clearly designed to see what damage has been done from the surgery. Temporal lobe surgery can affect your ability to form new memories. Hence my focus on doing well. I know I didn't do too bad, but keen to improve if I can. Not sure it's within my gift, but giving it a go anyway. Can't do any harm. 

I have a folder full of information from hospital. I'm being a bit of a chicken about it. Not sure I want to read all of it. All feels a bit real. I'll keep fighting but not sure I always need the cold facts. They can be a bit stark. Plus I remain adverse to any form of negativity. I can't watch any politics at the moment because the campaigning has been so negative. I won't watch anything psychological or negative at all. I've never watched such rubbish in all my life! I'm watching rom coms and flicking through fashion magazines...... not very 'Trish'....... My favourite tv programme was Love/Hate about the Irish crime groups. I couldn't even comprehend watching it at the moment. Too much going on and too dark. I could end up. turning into a 'real girl'...... I thing I've always said I wasn't very good at. I'll have to do something...... my hair roots are coming in a bit grey (big red is absent at the moment) and my skin isn't great. Plus I've put on a few pounds from all the steroid induced eating..... though not as much as I would've expected. I don't know what I weighed before but I'm not too bad now. I think I'd have been more worried if I was losing weight...... which I'm definitely not! And won't if I keep enjoying all this delicious food.

So thanks for the food, and to those who have shared diet advice. Very much appreciated. Keep up the funny texts/ emails/ whatsapps/ FB messages too. They keep my head in a positive place. Some of you are very, very funny! All of you are sweet and caring. My wonderful Support Team. 🙂😘 xxxx

Surgery results

I've just been through my notes....... don't think I relayed the surgery results particularly accurately. Hopefully this is more reflective, though please remember that I do get a little disorientated and sometimes get things muddled! This is what I've written down.....

Overall grade 3, however one bit very different. Majority ('spongy') has been low grade; grade 2. But some areas of change ('angry peas') They give you the grade of the highest grade bit rather than average it out. I'll now be referred to oncology for further treatment - likely to be 6 weeks radiotherapy but they will decide. Appt on 23 March. 

Stitches out on 14 March. Met the nurse who'll do it and she seems very nice. Hopefully I won't totally offend her when I swear at her, as I'm likely to do!

Able to wash my hair again! Have to use mild shampoo - baby shampoo too harsh. 

No driving. Can't imagine doing that anyway! No desire to.

Still some swelling in brain but debulking successful. Able to release some of the pressure. One chunk removed was big enough that surgeon could've fitted her fist into it. Yikes!  But good to have it gone.

Before leaving hospital I had a series of appts with all sorts of people - Occupational Therapist, Social Worker etc. Established I'm safe to be alone, just need to be careful. Much the same as when I came home before. I can do everything but I need to be careful and take things slow.

I'm home a few days now and am already doing great. I'm perfectly able to do stuff - I can shower, go for walks, see visitors etc. I've been very tired though. Probably a good thing. I need to rest ahead of next treatment.  Not lying down to it, but I am allowing my body to rest. Seems fair! 

Everyone continues to contact me and I love that. My Ward of Winners are all missed but we are in regular touch and I can't wait to meet up with them again.

If radio is my next treatment then I'm hoping they'll offer me accommodation up there. I'll take it if they do. I don't want people running me up every day, plus it would be exhausting. I know how inspirational it can be meeting others going through similar things. Plus they offer all sorts of alternative therapies etc. It seems much more relaxing and I can come home at weekends. We'll see what they offer but I'm hopeful that'll be an option. All of you in the Belfast area need to get ready - I'll be wanting visitors I'm sure! 

So all good really, considering. Getting ready for the next stage of the journey and well able for it. Building myself up, the same as I did ahead of surgeries. Getting 'tour fit'! I feel fortunate. So many get far worse. Yes, it sucks, but it could've been so much worse than this. I'll keep building myself up and I'll get there. I'd start radio tomorrow if they'd let me! Just want to get stuck in now. Not confirmed that'll be the next treatment but we'll see on 23rd. Longest wait of my life!! Well, apart from prior to surgeries possibly..... impatient as ever. Everything changes, everything stays the same. Xxx