Things have been a little busy around here but I'm going to attempt a little catch up. It will be short and brief! I'm tired.

Well, we're finally in a 2 bedroom flat and have been for almost 2 weeks now. The place is decorated and we're at home.

For 4 weeks, my mum has had to fight to be seen. She was told she would meet with the surgeon up to 2 weeks after her last appointment and it has now been almost 4. She is heading into hospital on Monday but she has really had to fight for it. Daily phone calls that weren't going through to eventually finding out she wasn't even on the bloody system after 3 weeks.

Now, on Monday, she is heading into hospital where they'll make a small cut in her throat and put a camera down. They'll be checking out her lymph nodes and behind her breast bone. If there's nothing there, it will be surgery where at least 1/3rd and up to the whole lung will be removed. If there is something, it'll be 3 months of chemo and radiation and hoping for the best.

Her friend Caroline, with the exact same thing, has just had her chemo and radiation and amazingly is now in remission... it's fantastic and has lifted our hopes quite a bit.

However, last Monday Gerald passed away. Throughout the day, he'd been all wrapped up and cold and he passed very suddenly. It was such a shock and my granny is devastated.

Now, we're sitting here watching a horror movie. My mum has been a bit cold today - she's usually boiling even in the dead of winter - and has quite significant pain. "Maybe it's my body shutting down like Gerald's," she said. I scoffed and told her not to be silly... I hadn't even thought like that till she mentioned it. Now? I'm worried. Scared to sleep and scared to wake up in the morning... just in case. I'm scared.

Ugh.

The past while has been really hard on us, my mum especially of course. Having to beg her son to help us move and being reduced to tears twice whilst doing so. Complications with the move. Money.

Tomorrow marks the end of the 2 week window where she should have heard from the hospital (she hasn't) and now, she's getting quite bad pain. She's not sleeping very well and the stronger pain killers make her feel awful. She's currently nodded off on the sofa, praying they'll wear off soon. She'd rather have the pain, she says, than feel how she does.

This is just... heartbreaking. It's so easy to forget that she has this thing inside her but a short, sharp reminder is never far behind.

I am incredibly unhappy with my brother and that's not likely to change soon.

I wish I could do more to help but I am helpless. Useless. There's nothing I can do.

I wish I could switch places with her.

Thinking back.

With this cancer going on in my mum, it's meant my grandad has been in my thoughts a lot more than he usually was. Until not, it was a fleeting memory every so often but they've been hitting me everyday for a while.

Like going to their house every Sunday for dinner with the rest of my cousins and aunts and uncles and me being the only one allowed in the kitchen to watch him.

Or staying with them when my mum was in hospital for 6 weeks having a hysterectomy and he didn't want to hand me back because I made him laugh so much.

Staying the night with them and sitting at his feet, watching Poltergeist (the show, not the movie).

Waking up in the middle of the night when staying with them to find him struggling to get my Rainbow's piniform off.

His birthday parties every new years eve.

Coming home from school one day to my grandad in the living room telling me that my mum, sister (?) and brother had gone to a football game I'd desperately wanted to go to.

Then coming home from school to my grandad in a bed in the living room, barely able to move.

Going to my sisters dads late in the night, him getting a phone call and me just knowing he was gone.

One of the hardest things of my grandads death was not getting to say goodbye. When we were sent to my sisters dads, no one told us why until we were told her had died.

I wasn't allowed to go to the funeral. My mum thought I was too young. I don't blame her in any way whatsoever but not ever having said goodbye is, I think, a big part of the reason that I am not in any way close to having dealt with his death.

I still remember my granny's death like it was yesterday, too. My uncle, his wife at the time and my 2 cousins were staying with us whilst they got back on their feet. I woke up in the bottom bunk to my sister and the older cousin staring at me. "Granny's dead," my sister said. I remember knowing it was true but outright refusing to believe her. My aunts and uncles had gathered in my mums bedroom and I remember coming out of my bedroom and sitting outside the door in the pitch black, not being able to bring myself to open the door to the room they were in because I just could not believe it was real. It was so sudden. So unexpected. A brain hemorrhage. No goodbye for her, either. The smell of mint chewing gum and the taste of the first cigarette after chewing gum will always remind me of her (not that I will ever taste that again). This was the year (or 2?) before my grandad so again, too young to say goodbye.

My grandad McEwan. I was 15 at the time, living in Durham. I woke up one weekend and told my mum I wanted to drive up to Edinburgh and surprise them, my granny and grandad, with a visit. So we did. I got to the door, knocked and waited. My granny opened it and told us my grandad had just died. I remember I had not long had my nose pierced and, as she pulled me into a hug, the jewellery got caught in her jumper and tore out. I didn't even feel it. Remember walking into the living to see him lying on the sofa, like he was asleep. So peaceful.

Again, no goodbye. We were either out of the UK or couldn't afford to travel up... I'm not too sure. But no goodbye.

No closure.

Overwhelming.

The key word.

I went to bed a couple of nights ago and, lying in the dark in silence, I was totally overcome with the most intense feeling of being completely and utterly overwhelmed. In that moment, it hit me that this is real. My mother has cancer. The physical sensations were bizarre; almost like I could feel something gripping around my throat and heart at the same time, literally choking the life out of me.

I woke up the next morning and it was gone. Once again, my mind refusing to play ball with reality. In a way, it's a blessing. A breakdown would be inevitable if my head were able to wrap itself around this constantly. But, on the other hand, it makes moments like that night in bed far more intense than it would have been. Like I'm feeling a months worth of emotions in a minute.

She speaks to people about her cancer in the presence of me and it's like she's telling someone elses story. Like she's talking about a film or TV show we watched the night before.

Sometimes, when she's asleep on the sofa, I'll look at her and repeat in my head "she has cancer. She has cancer." But still, my mind just won't accept it.

But then I find myself choking back tears randomly. Like a song with sad undertones will come on the radio in the car and the lump in my throat becomes a choking hazard. Or I could just be sitting on the sofa watching Jeremy Kyle and oh, there it is again.

Sigh. There have been a few tears since I last updated but a few happy moments, too. Like Hampden for the semi-final on Saturday!






But anyway... less about me and more about my mother; she is who this is about.

Her PET scan was normal. Clear. The relief was huge. The cancer is in her lung and her lung alone.

The next step is meeting with the surgeon. First, she'll get a camera through a small cut below her throat to have a nose about behind her breast bone. If there are no loose cells, she will go into surgery and at least one third - and maybe the lot - of her lung will be removed.

If there are cells, it will be chemo and radiation and hoping for the best.

That last thing floored me (oh look, back to me again... sorry).

As I mentioned before, my mum's friend Caroline has exactly the same and has just finished the 3 months treatment because they found cells. Well, everyone was under the impression that the 3 months treatment was to try and get rid of them so they can operate.... Well, apparently not. Because of those loose cells, the surgeon will not open her up. At all. Even if the cells are gone. Now, she has nothing but more chemo and radiation and pray that it works.

It completely and utterly floored me. Before, I was scared they would find cells.

Now? I'm terrified.

Day 12. Biopsy results.

My mum is still coughing up blood but she was at her doctor on Tuesday who told her not to worry. The colour of it indicated that it was still remnants left over from her extensive bleed during the biopsy rather than fresh bleeding. Which eased my mind greatly!

We went out to my brothers for dinner after that and the kids were in such great moods. Ben hates having his photo taken but he was really eager to get one taken with granny! It was supposed to be both him and Eilidh Grace but the little one wasn't having it! So that's a task for next time, I think. It was nice.

Thursday was the day of her pet scan. She'd spoken the night before about how scared she was; she's very claustrophobic so was really anxious about it! But, thankfully, she said it was fine. That she just kept her eyes closed. It's just a waiting game for the results! We spent the rest of the day looking at wallpaper and eating pizza haha!

Today, Friday, was her appointment at the clinic with her consultant. The first time in over a month that she has spoken to someone. Ridiculous.

There were students in the room and I think it was her CT scan on the screen? The cancer was lit up like a neon light and massive. 5 centimeters. And then he, the consultant, confirmed it and I fought back the tears but lost. It's the confirmation, I think. I've spoken to a couple of friends before about how awful I felt for not being horrendously devastated and even said to my mum that I feel better now than I did when we were waiting constantly with no answers. But it's just not true, I know that now. Until now, I was clearly playing blissful ignorance. My mind had shut it off, maybe to protect me, but now that I've heard the words from the mouth of a professional, I can't really do that anymore so the tears came.

He confirmed cancer. Adenocarcinoma most likely. He said he doesn't have the full report from the PET scan but - "I shouldn't say this" - it looked good. And, once he has the full report, if it IS good, then she'll be scheduled for surgery. This is what my mum's friend Caroline has. However, they found more cells behind her breast bone and she's recently completed 3 months of chemo and radiation before surgery was an option.

My brother went home rather than returning to work after the appointment; it ended with my mother comforting us when it should have been the other way round. She's very positive about it. I however, can't get past the 15% 5 year survival rate.

Now, we wait for the call from the consultant with the pet scan results.

I also paid the entrance fee for something I'm both incredibly excited about and pooping my pants over at the same time! On July 13, I'll be driving up to Perth to make the 14,000ft jump. Skydiving for The Roy Castle Lung Cancer Foundation - The only charity in the UK wholly focused on defeating lung cancer. Let the fundraising begin! https://www.justgiving.com/tonipreston2013

My mum, however, has had a bit of a funny turn. She couldn't decribe what it felt like but it was her head and she was seeing things in her peripheral vision. She's convinced it's in her head; that it's spread.

Day 08. Easter.

Mum is still staying here, thankfully. It was Easter yesterday and we realised the day before that we still didn't have a turkey... so the hunt was on! We visited Tesco and Sainsbury's and nothing... time was getting tight for letting it defrost so we hot footed it to Iceland, praying! All the way round and nothing. Then, in the last aisle, we bumped into my aunt Sheila... with a turkey in her basket! Hah! We got one!

After defrosting it, it didn't finish cooking until almost midnight and there was only one place to keep it where it couldn't be reached by hungry cats.. the bathroom! So covered up in layers of tinfoil and a towel and the bathroom out of bounds till morning, we went to bed. Brushing my teeth yesterday morning was heavenly! Nothing like the smell of turkey in the morning :P

It was a nice day, easter. I was, and am, however, plagued with thoughts. On Thursday, she has her PET scan that will determine whether the cancer has spread or not. Again, she will be in hospital for hours and this time no one is allowed to sit with her at all because of the radiation. They'll inject a radioactive form of glucose, she'll have to rest for an hour, have the 30 minute scan then rest for 2 and then she can go home where, the letter informs her, she will remain radioactive for the following 8 hours.

The next day, Friday, is her appointment at the clinic where she'll hopefully get some more information, have questions answered and get the results from her biopsy. I think these results might tell us the stage her cancer is at but I'm not entirely sure. My brother is coming with us for this one.

We've spent the past bit-over-a-month in fear, clinging desperately to some form of hope. That was dashed when her diagnosis came but a new sliver of hope dangled down that we reached up to and grabbed with both hands. The hope that will be founded on Friday. Or horribly, disastrously dashed.

I can't even describe the feeling. It's like teetering over a cliff edge, clinging on with the tips of your toes and swaying, knowing that an Earth shattering gust of wind could sweep down at any given moment. Sweep you over the edge and soaring into a mess of a world you never thought possible. Crashing down your only foundations. Crushed.

Day 06.

No photos (of my mother) today nor a lot of words to say.

I had a 10th birthday party to photograph so spent the better part of it not-with-Mum. The party was for the daughter of my cousins friend so, whilst she was at the party also, my mum and hers entertained themselves shopping. Fun was had, apparently!

We did, however, head out to a cafe for breakfast this morning. Just the 2 of us, it was nice. Mum was very upset the cafe didn't do hash browns :P

Again, we've been touching "normal". It almost feels like a warm summer's day but with a thick, dark cloud hovering above. A constant threat of rain.

Day 05. Touching Normal.

I spent last night on the opposite sofa to my mum and, when I woke up, she looked brighter than she has in a few days. She says it comes and goes, the sickness, but she seems to have had more ups than downs today.

We zoomed about getting bits and pieces like turkey for Sunday and she's started to compile bits and pieces to keep in a bag for the inevitable hospital admission.

Today has felt almost... normal. If you don't count the coughing up of blood tonight. Not sure if that's normal the day after the bronchoscopy but possibly? Her bleeding during the procedure was extensive so possibly just coughing up the remnants of that.

She ate more today than she has in a while. A cooked breakfast and a good sized pizza. That, of course, eases my mind. Now we're sitting watching Masterchef and she's exhausted but otherwise, she says, fine.

Day 04. EBUS // Bronchoscopy.

It was just after 8am and I was dressed and ready to go... but my mum had already left. It's the day of her bronchoscopy and I was supposed to be accompanying her but we decided that I would be best at home. This way, I can crack on with the house work that has been neglected since Monday and shop so that she has food to eat (will she eat it?) when she comes home. Soup for lunch, chicken for dinner and ice cold magnums if she needs to soothe her throat (thanks to my friend Jake for reminding me yesterday that she's likely to have a sore throat!). She has my brother there to take her and bring her home so the best place for me is here; the house leaped into the bounds of unnacceptable a day or two ago.

She's very worried. Anxious and apprehensive. I wish I could go with her and sit at her side but no amount of begging hospital staff will bring that to fruition. I, too, am worried but she's in the best place where they will take great care of her. My real worry starts when she gets home; she's staying here again as the hospital advised her to have someone with her because there's a risk of bleeding after the procedure. Will she tell me if something feels not-right? Will she recognise that something is not-right or will she attribute the not-right feeling to just a general unnease? I feel I'll probably spend the night on the sofa next to hers just in case.

The unexplainable sickness was strong this morning. Possibly a mix of not having her staple cup of tea (fasting since midnight), a lack of substantial food and not sleeping very well? As mad as it sounds, I hope so! Her general demeanour and the way she feels has taken quite the downturn since her diagnosis. I've woken up hungry and I consumed 2 or 3 - maybe even 4 - times the amount of food she did yesterday.

I'm plagued with a constant feeling of not-doing-enough. I've offered to give up my bed but she tells me that she's far more comfortable on the sofa where she can prop the cushions up and it's the best nights sleep she's had in a while. Throughout meal times, I urge her to eat more but she can't; am I being strong enough? Is she warm enough? Too warm? I think she's getting fed up of my constant checking that she's okay.

I felt very overwhelmed last night. I had struggled to sleep the night before and was up early yesterday. Completely knackered all day, the sun went down and my mind woke up. No specific thoughts - I'm trying to avoid overthinking and analysing - just a general feeling of complete and utter unnease. Even once asleep, I was waking up what felt like every few minutes. I don't feel that I'm doing enough.

I need to be doing something. Even if it doesn't help our situation now but has the chance to help in the grand scheme of things, I need to do something. I've been thinking about doing a skydive for charity. There's a... company(?) by the name of Skyline that I've requested more information from. I've also thought about Race For Life. I think I'll have more success at jumping from 10k feet than I will at running 5km however! Even with my fear of heights.

I've also found an agency in Edinburgh that offers properties to rent but also takes no deposit. I've sent off an email to them too for possible further details and more help.



I mentioned the flowers she received from her friends and colleagues... yesterday? My days are running away with themselves. Anyway, she'd taken them home but then returned here later that night and forgot to bring them. She was concerned that they were going to die whilst she was away so we drove to her house and picked them up. On the way back, we popped into Asda for food and I managed to pick up a vase for them so they're fed and watered.



She texted me this afternoon that she'd had the procedure done and that it was awful; she was aware of every single second but she was okay. It was over however her lung was bleeding and she was told they were going to have to x ray her but she should be out at around 2pm. Not long after that, she said that the woman next to hers husband had arrived which meant they were allowed someone with them so I asked her if she wanted me to come up and sit with her. No reply. I called her and her phone just rang out 3 times.

I sent a message to my sister telling her that I couldn't get through and she gave me the name of the ward she was in so I headed up anyway.



When I walked in the ward, I asked her how she felt and she just cried and cried. She's scared. Of course, it almost set me off but I managed to hold it together for her. After that, she seemed to be okay. She said the procedure was absolutely horrendous and she was aware of everything but that she felt much better now and she looked it. For the first time since Monday, despite sitting in a hospital gown in a hospital bed, she looked her normal self.

She had - according to her notes - extensive bleeding during the procedure so they'd had to go in a second time but, thankfully, they managed to stop it. She remembers someone screaming for suction and that she thought she was going to die there. But again, they stopped it and that's what matters: she's okay.

The consultant was not happy at all that she's not been sent to see someone to talk about this. Really, really not happy. So he's got her in for a talk with him in his clinic next Friday where she'll also get the results of the biopsy and, a further week after that, will be the turn of the PET scan. The one to see if its spread.

But she feels good. Much better now that the procedure is over, she said. She had been severely dreading it.

When will the world progress so far that, at the switch of a button, I can be in her place and she can be in mine?

Day 03.

Well, mum ended up back at my house late last night as she'd left her phone! It was nice but she let slip that my Uncle didn't come home so she would be alone that night. Try as I might, I couldn't get her to stay here. So off she went again with plans for another visit today.

My heart felt very heavy after she left and I had a little cry. It's hitting home every so often that this is real and it is happening.

But, at 11:45pm, she was back to spend the night. My sister and I managed to convince her; she doesn't want to be alone at the moment, my Uncle still wasn't home. She just doesn't want to be a burden to me. She admitted it herself in a message where I was telling her to come back here - it couldn't be further from reality, which brings me onto the next subject....

I'm stuck. We'd planned to get a two bedroom place so that she could move in and very, very much wanted to stay with the landlord of my current house. He's a great guy and just the best landlord but the best he has at the moment is that he might have a 2 bedroom available at the end of April.

I really don't want to wait that long. I want my mum to be living with me when treatment starts but a deposit on another flat is just not possible to get  together ASAP.

We took a little trip out to the gyle to visit B&M and have a look at their wallpaper before heading to Inspire Studios. We'd had a photoshoot last week and today was the viewing. They were great. Some really beautiful photos of my mother. We picked one for our prints and, hopefully, I'll be able to come up with a plan to get some money together to buy the disc of images.



We headed out to my brothers after that and spent a lovely afternoon with some family. Seeing Eilidh Grace, my niece, with my mum is lovely.



Now we're home and I'm frustrated. Trying to find someone to take her to the hospital, who wouldn't be put out in anyway, wasn't the easiest. And I'm sitting here, useless. If only I could drive, I could do it. But I can't drive... so I can't do it.

Cottage pie for tea. And 4 or 5 mouthfuls later, she was finished. She's sick. Nauseous, light headed. A sick she can't put into words.



Why can't I do more?

Day 02.

It already seems like it's been a week since yesterday, not one day.

My mum received a letter in the mail today, with the time and date of her... EBUS thing. Bronchoscopy? To take biopsies to gain more information. It's this Thursday at 8am.

She stayed here last night and it was nice. Makes me even more eager to get into a 2 bedroom house so that she won't have to lug stuff about from one place to another when she doesn't want to be alone.



She's to be in hospital on Thursday for the EBUS thing and will then spend the night here again. She'll stay in hospital for a few hours to get over the effects of the anesthetic and I'm not very happy that I won't be allowed to sit with her, even if she will probably just sleep.

Another thing that angers me is that the waiting time for the results of the biopsy is another 2 weeks so her journey will have already lasted an incredibly long, hideously stressful and hard one and a half months before we even have proper answers.

She was here when a good friend from her work - ironically, she works in a cancer ward in the hospital - dropped by with the most beautiful bunch of flowers from herself and the rest of my mum's work colleagues. This produced a bit of a teary moment on the door step! And off she went, home to watch the football. Ah, mum and her football :)

I came inside, shut the window - my mum's very warm blooded whereas I'm super cold blooded! - and had a bit of a cry to myself. We'll be okay.

Day 01. The beginning.

Hi! I'm Toni and this here is my (our) own little space in the world to share a journey.

At the beginning of February this year, I accompanied my mother to the out of hours doctor at around 3am with severe pain in her shoulder. She had just been diagnosed with arthritis the other day so had put it down to probably being related to that but something didn't feel right.

After being examined, the doctor asked how she felt about taking the quick trip through the maze like hospital to the A&E department - he wanted to x ray her just to be safe. So that is what we done. About 3 hours later, we left with the knowledge that she had a shadow on her lung. She was given antibiotics and we were told that they would treat it as - despite having no signs of - an infection. She should come back in 2 weeks when the x ray will be repeated and we'll take it from there.

The very next day - or the day after that - she was once again visiting with me when she received a phone call. The x ray had been looked at by a specialist and he didn't want to wait; she was going in for an emergency CT scan. Her appointment was in the post and ended up being 2 weeks away.

I remember sitting in the out of hours doctors office scanning the room as my mum was explaining the pain and being examined and I read a notice pinned behind his desktop computer. It was a list of current average waiting times for scans. The average waiting time for a CT scan was 16-18 weeks. She was being seen in 2.

The Thursday of her scan came and I accompanied her. She was very nervous; she's claustrophobic and was anticipating an MRI-like experience. Thankfully, she came out of it and said it wasn't quite the same and that she had been okay. The waiting game began again.

And wait is what we did. Far longer than we should have. 3 weeks after the scan, she decided enough was enough. The pain was horrendous and something had to be done. To get a very quick appointment with our doctor, you have to begin calling the surgery at 8am. If you're lucky to get through in time, you will get an appointment that day. So that's what she planned to do. I told her to get on the phone straight away with the time of the appointment so that I could go there with her in case the doctor knew more.

At the time, there was an advert on the TV. A cancer advert. It showed various little scenes and one of them was a man or a woman being told they have cancer and they're on their own. My mum always said, when she saw that advert, that that would be the worst thing and something that she really wouldn't like for herself. To be alone when given such news.

So the next day came. At 10:15am, I answered a knock to the door and she told me before she'd even stepped through the door: It's cancer.

She got through to the surgery at 8:30am and they asked her to be there for 9am. There wouldn't have been time for me to get from my house to the surgery in time so she went alone and was give the news... alone.

She came inside, she sat down and I made her a cup of tea and tidied up the living room a bit. I think I was in shock. I think I'm still in shock. I hugged her and we talked. We called my brother to tell him and he came down to see her. My sister had already been told but she's in Northern Ireland. Aunts and Uncles, friends, were told.

And still, I didn't cry. Like I said, I was in shock. And relieved. It sounds funny, doesn't it? You're told your mother has cancer and you're relieved. No, not because of that. I was relieved because, after a month of being terrified and stuck in limbo, we finally had the answer. Once that relief has passed, I think that is when it will hit me and I'm dreading it but I will be strong. I have to. Of all the times my mum's been there for me in the past, now it's my turn to be there for her.

I started this blog as a record of her journey through this. And for me. Something to update and keep track and maintain. I also take photos. I've been taking photos for as long as I can remember and expressing myself through this is my way of helping myself so I can help my mother. Of keeping my strength up so I can keep up hers.