A Brothers Perspective

“Don’t worry, I am going to kick it’s ass”

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Me and Lewis, My 21st 2017

Those were the first words my sister said to me after her diagnosis.

Let’s rewind a couple of weeks. As some of you may know, my job requires me to work unsociable hours (to say the least)! Meaning time spent with my family is limited, we often pass like ships in the night and this would be considered normal for us.

What wasn’t normal, was the amount of times I would get home and my sister had been or was in hospital. I often wondered whether it was the hypochondriac in her taking over, but the more and more she went the more concerned I became, as did everyone else.

I managed to visit Ashleigh on a Saturday where she was filling me in with all of the ‘scary’ illnesses they had thrown at her so far. The optimist in you always deflects the possibility of such illnesses becoming a reality of course, and I would often find myself telling Ashleigh – “not to worry, you will be fine”, even though every time I spoke those words I believed it that little bit less myself.

Another week and a few days went by, and still Ashleigh remained in hospital and then it came. Friday 20th July, when fortunately, I was working from home. I can remember it so clearly, I was typing away and thinking – I would literally rather do anything rather than this Premier League Report right now……… Be careful what you wish for!

My phone started to ring, it was Dom, quite strange considering although we had been best mates for over 10 years, we very rarely call each other.

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Just a standard Sunday night out down Burnley, Me, Lewis and Dom

Dom: You need to ring my mum now!

Me: Why? What for?

Dom: I don’t know, just do it!

And so, I did just that…

Tavia (Dom’s Mum): Lewis, its Ashleigh, she’s got cancer.

There is nothing in the world that can prepare you for those words, I was in utter shock. The next hour is a blur to me, still to this day. I got in the car and set off driving home, not sure what to expect, I didn’t even know if anyone was there? Quick stop off on the way to throw up, again probably the shock and there I was, at home on my own pacing up and down the bottom floor, just waiting for the rest of my family to return home.

I would be lying if I didn’t think about the worst, it’s natural to do so. But the next words I was to hear changed my outlook on the situation completely and impacted me more than I could ever imagine:

“Don’t worry, I am going to kick it’s ass” – as we both stood there holding each other not wanting to let go.

Yes, that was my wonderfully brave, strong, amazing sister. I won’t give her too much credit, she did have a mini breakdown ten minutes later, but I suppose we can let her off considering?

Seeing all the sadness that followed that day, the family members upset on the phone, the friends breaking down in front of Ashleigh and my Mum and Dad in pieces, brings me to the reason why I asked Ashleigh if I could write a piece for her fantastic blog.

Receiving the news, you have cancer is bad enough, and like I myself have confessed, makes you think about the worst (if you let yourself). Something that I hated seeing Ashleigh go through, would be people visiting getting upset and break down in front of her, which if you are reading this and thinking ‘I did that’, don’t worry you weren’t the only one! Every time this happened, it got the cogs turning around in Ashleigh’s head.

Why is everyone so upset?

Is the situation that bad?

Maybe the worst is actually coming?

That day I made a promise to myself, I would never let my sister see me upset, I would only let her see me in a positive outlook, as that person that she can talk to and know that when I say “everything will be fine” I mean it, and I think she appreciates that.

Therefore, my first piece of advice to anyone going through a similar situation is; you must be the one that is positive and provide that little bit of normality in a life that is no longer normal, and that person will appreciate that and you more than anything.

Be the one that she/he wants to pick up the phone and text when their down, or call you when its all got too much for them, although on that point, Ashleigh once did call me and when I answered her first words were: ‘thank god for that, I am having a break down and you’re the third person I have called and first to answer’! Hopefully I was promoted after this incident! 

Just to mention, I am not saying that it is all sunshine and rainbows by any stretch of the imagination. For the first week admittedly when all my family were asleep, I would even wait for Katie to fall asleep before I would let all my emotions loose and cry myself to sleep. It is ok not to be ok – but at the right time, and in front of the right people.

 

Maintaining this outlook on an awful situation takes a lot of strength, but you owe it to that person to show it as it is nowhere near as tough as the battle they are currently fighting. Prepare for the unexpected, the random phone calls, the outbursts, the arguments – you are going to face it all, but if you can be one of the people who they turn to in their time of need, you know you are doing it right.

The past few months (as strange as it sounds) have seemed normal, apart from Ashleigh now having less hair than me and yes that is tough considering my extremely fast receding hair line! We laugh, we joke, we do things that normal families do, and we are getting through this, together.

Before I finish, I would just like to speak about the other day, Ashleigh’s ‘half way point’ consultation, where we found out how her body had reacted to chemotherapy so far, it was tense to say the least (as you’d imagine). We all marched into the consultation room as the hospital staff followed us with spare chairs thinking ‘what the hell is going on’ – I almost felt like saying ‘sorry, we come as a team!’ and the moment that followed I will never forget, a feeling I don’t think I have ever experienced.

The nurse began to explain the news that Ashleigh’s Lymphoma Cancer was shrinking and that was it, I was off! I stuck by my guns and said I wouldn’t let her see me cry, therefore I tried and tried to hold back the tears, of absolute joy I may add!

I was doing so well until we were sat waiting outside Marks & Spencer’s with Ashleigh inside collecting her prescription and I burst out into tears and with my mum stood next to me asking what was wrong, I simply just said ‘I am just so happy, its great isn’t it!’ and of course as mothers do she asked me if I wanted a hug – come on, I’m 26 and in public, who wants a hug off your mum? So, I kindly declined her offer to save myself the embarrassment!

And here we are, Ashleigh is doing great, and importantly her support network are there for her every step of the way. Whether it’s a friend bringing round frozen donuts, or a boyfriend sleeping on an air bed every night, or a Mum who goes to work late every morning to make her daughter breakfast to start the day right, or even a sister-in-law that conquers her fear of needles to have the flu jab – everyone is there every step of the way and everyone is positive. Which is what that little warrior needs and deserves right now.

 

Keep on fighting our kid, we are all so proud and we love you more than ever!

 

 

 

 

Hair Loss

And breathe… this is a tough one.

I’ve been thinking for a number of weeks how do I possibly put it into words to tell you about hair loss when I know deep down this is probably the one thing that has affected me the most.

I actually came to the realisation when I experienced hair loss how vein I was about my hair, making sure I got it coloured on time, making sure once I’d straightened it there wasn’t one kink and you know what there are more things to life than having perfect hair! Also it’s a hell of a lot easier to get ready, I’m super quick now I just whack my hair on or a hat! No more washing (well I still wash it but its so much easier), drying and straightening my long locks that used to take me 2 hours… well that’s until it grows backme and chrystal.png

I’ve also come to the realisation I’m actually twinning with my dad haha! I also never thought I would hear my dad say ‘your catching up with me with the length of your hair ash’ or be washing my hair with baby shampoo because my scalp is so sensitive, how things change?! To be quite honest with you I don’t think anyone would know how it feels to deal with the loss of your hair, eye brows, leg and arm pit hair (well them two are quite a blessing I must say, no more shaving hurray!) until it happens to you personally. Everyone is an individual and deals with things differently.

When I was told I’d be having chemotherapy asking if I would lose my hair was one of the first questions I asked. I also asked the nurse on my first cycle of chemotherapy when she was manually pushing my chemo into my line (praying for the first consultant to be wrong) ‘will I lose my hair and also which bit makes me lose it?’ to which she replied ‘unfortunately yes you will, and this what I’m pushing through now causes hair loss’. GREAT. I remember looking at the liquid going into my Picc Line, into me and thinking (sorry for my French) ‘you bastard’.

Everything goes through your mind, ‘I’ve just got it the colour I’ve always wanted it? Will I suit being bald? Oh my god I’m going to have to wear a wig and hats? People will stare at me? And will my hair grow back?’ I have never felt heart break like it. I couldn’t stop thinking about it so I urged my Mum to text my hairdresser to come round to my house when I was home from hospital to cut my hair into a bob. If it was going to come out I wanted to donate my hair. My hair was cut into a bob and 14’’ of hair was donated to the Little Princess Trust as they were funding my wig for me due to me being under the age of 24, let me tell you these wigs don’t come cheap mine was £1300!! 

 

I got in touch with the Little Princess Trust who also put me in touch with Andreas Hair -Room-Leeds. Every appointment in 1:1, she makes you feel so loved, beautiful, my first appointment we picked the length and off her colour swatches of hair we matched my hair perfectly which I thought was going to be difficult due to my natural hair having different blondes. I also bought 3 hats from Andrea which are amazing, they are all bamboo material, so soft when you have them on and the wig wow its so realistic you can’t even tell!! The best benefit Is I only have to wash her once a month… Hallelujah! However hats are so much comfier so Hayley (my wig) only gets worn on special occasions now.

 

You’re all probably sitting there reading this thinking who’s Hayley? Has she gone mad? So here’s how Hayley the wig got her name; she’s named Hayley as when I was admitted to Airedale I made friends with a little old lady, she was so lovely I told her numerous times my names ‘Ashleigh’ but she didn’t quite grasp it, so from then on I was Hayley, all her family called me Hayley and in fact it even sometimes rubbed off on the nurses. It was so amusing because she didn’t have a clue what was going on! So when I’m in the wig everyone calls me Hayley. Its like I’m another person, she’s straight to the point, funny, can get angry at times but that’s just her and when I take my hair off I’m me again! 

 

I got home from hospital on the Tuesday and my hair was cut into a bob by Friday. I loved it, I thought I can really pull this style off, I could do it curly or straight. The bob lasted a week and a day by Saturday my hair was coming out.bob 1.png

My Mum and Dad had just gone to Harrogate for the weekend with friends on a well earned break so; Connor, Lewis, Dom (my brothers best friend) and Katie (my brothers girlfriend) were on ‘baby sitting duties’. Katie was on her way and Connor and my brother had just left the living room, I ran my fingers through my hair and my hand was full of clumps of hair I remember just being in shock and see Dom’s face in shock, I looked at him and said ‘I think my hairs coming out, let me do the other side and check’ it did exactly the same I screamed.

As soon as Katie arrived I followed her upstairs just saying ‘my hair is coming out’. I honestly thought I was ready for it and it wouldn’t bother me but it turned out to be the complete opposite. Obviously there are stereotypes for everything now-a-days and I was in fear I was starting to become the stereotypical cancer sufferer; no hair, hat on my head with no eyebrows and everyone will stare at me. I almost felt normal with my bob I could walk round Asda and those who didn’t know me wouldn’t know I had cancer, but now they will I kept telling myself. I was heartbroken. I remember my brother saying to me ‘so what if people stare Ashleigh, stare back and smile you’re stronger and a better person than they ever will be’ and you know what he’s right now I smile and wave even if I don’t have a clue who they are, they are looking at me so I’ll wave to embarrass them instead of them making me feel embarrassed. It’s quite amusing actually.

My Mum and Dad arrived home around dinner time the next day and I remember walking into her room and crying like I’d never cried before, ‘why now’ I said, I’d just got over which was the worst week of my life due to me being quite poorly on my first chemo cycle and then this happens, why can’t it give me a break?!. My Mum suggested washing my hair and seeing how much came out to which I agreed until I went into the bathroom ran my fingers through my hair and there was so much I threw it In the bath and screamed – NO!

I rang my good friend Sarah, she’s the only one who would understand my pain having been through this herself, I asked ‘what should I do?’ to which she replied ‘shave it, get back in control’, and that was that, I went back into my Mum’s room and messaged my hairdresser ‘can you come today at 2pm I want it all shaving off’ – my Mum was gobsmacked. I needed to gain back the control, I was not letting this beat me and it was the best decision I ever made. I wouldn’t have been able to deal with waking up every morning with more and more hair being on my pillow, it was bad enough losing it cut short to a number two, hair gets everywhere!

From 12:00 – 2:00pm I think I cried every minute, I kept looking at the clock, feeling my hair and just sitting there crying. Sarah came to hold my hand (she’s honestly my biggest inspiration and has supported me through so much, I can’t thank her enough), my Mum and Connor were also there, they are always by my side, I love it. There was a knock at the door, it was Carla my hairdresser, it was time.

Sarah and my Mum held my hand the whole way through, I could feel all the hair just falling around me, the snipping of the scissors and then the dreaded sound of the clippers, this was it. I made Connor watch the whole thing so it wasn’t a shock seeing me at the end, but I was scared how he was going to react when it was done. I remember asking him ‘do I look ugly?’ to which he replied ‘you look beautiful, I didn’t fall in love with you for your hair, I fell in love with you’ well that was it and I was crying again!

I finally composed myself and my Dad came home from Asda and lets just say it wasn’t the best reaction I was looking for, I don’t think he understood the words ‘Ashleigh has shaved her hair’ and shaved means as short as his! ‘Oh my god’ I think his words were to which I burst out crying, I knew he was just in shock that his little girl had bit the bullet and gone for it, I also think he was shocked because like I said it became a reality when my hair was shaved. He also said I looked like Sinead O’Connor and I can see the comparison haha! 

 

 

After everything had calmed down I remember trying on all my hats, at this point I only had 5, now I think I have over 20, glitter turbans, wrap head scarves you name it I’ve got it! I absolutely love them and now I don’t know why I was ever so scared to go out in one for people to see. Whenever people came round to visit me if I wanted them to see my ‘bald head’ I would just whip my hat off and say ‘right you’ve seen it now, if you ever walk into the house it wont be a shock now’ (I always keep a hat downstairs as I once answered the door to the post man without one on and I think I scared him, oops). Taking my hat off and showing people was my way of being in control, I experienced my hair loss at the end of my second week, during my first cycle. Very fast.

The day I lost my hair was one of the worst days of my life but it felt like a weight had been lifted off my shoulders, I guess I got a bit of my spark back.

And Breathe…

 

 

Chemo Days

Think back to a hangover? Now times it by 10. Extreme dry mouth, fatigue, sickness, your body tingles in places you didn’t even know could tingle (especially my fingertips, wow) and the aches and pains are unbelievable to the point I lie on my bed weeping like a puppy because I guess it makes me feel better. However you can feed a hangover with say a good Chinese? A dirty kebab? Nope! Not me, my lovely mum decided to take up smoothie making (green ones) they were revolting but I’ll give it to her they did perk me up, whilst gagging over a vomit bowl.

My first cycle of chemotherapy I had as an inpatient at Jimmy’s (St James Hospital Leeds) which is where I receive my treatment on the Young Adults Cancer Ward, (I now receive my other cycles as an outpatient). Me and Mum (for those of you who don’t know my mum she’s called Janis and she’s the most amazing human being on this planet) stayed four days Friday-Tuesday. I was that unwell my consultant wanted to ‘keep an eye on me’ yet I’d been walking around like an 80 year old for months not even able to walk up stairs without being out of breathe, my grandma had more energy than me and she’s 90! Mum stayed with me the whole time there was NO WAY she was leaving my side bless her. She slept on a settee bed for four nights whilst I was in the electric hospital bed folding myself up and down, I had to amuse myself somehow.

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What a chiller! 

Friday, Connor and Dad had been with us all day and that’s when reality hit when they left this was really happening, I was so overwhelmed, I was sat in Leeds hospital with my mum on a cancer ward. I have cancer? I said to my mum whilst hysterically crying I couldn’t believe it. You never really think of this side of things all the appointments, the chemo, the reality and impact it has on an individual’s life. That’s until it happens to you personally.

We laughed, we cried, we watched crap on TV (well mum called Love Island the Reunion crap, can you believe it?), we got woke up at 1am, 4am and 6am, for blood test, observations, chest x-rays, you name it we had it. I was bruised on every arm and hand every time the nurse came in with the dreaded needle and blood bottles I would cry before she even put it in, what a wimp! Thank god I now have a Picc line, Pepper the Picc I call him! But what an experience it was, in the end I think we called it a mini break as it felt like we were on holiday, a strange holiday.

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Pepper the Picc 

Sunday night approached and my heart rate was through the roof again, 150bpm, so I had to have fluids pushed into my quite quickly to bring it down, which thankfully it did, I also spiked a temperature due to a slight chest infection… great! The consultant came into see me and said it was now up in the air if chemo was to go ahead Monday I looked at my mum and broke down crying, I wanted this chemo and I wanted it tomorrow. 

Monday morning I woke up tired as hell and very anxious, I was praying for my heart rate to be down and my temperature to be normal. It was observation time and thank god they were in range, my consultant came in and it was good news (obviously I didn’t know the effects of chemo at this point), it was going ahead. I shouted to my lovely nurse; get me hooked up and get that poison pumping in me!

R-CHOP, would you like mash and carrots with that? (yes please haha) just kidding this is my current chemotherapy regime given to me every 3 weeks:

R- Rituximab

C- Cyclophosphamide

H- Doxorubicin (Hydroxydaunomycin)

O- Vincristine (Oncovin)

P- Prednisolone (Steroids)

It’s a really long process as the first bag ‘Rituximab’ takes a good two hours to go through as you can have a reaction to it, my observations have to be taken every 15 minutes then the rate is turned up if I’m feeling ok. After this the rest of the chemo is pushed through manually by the lovely nurse due to my weight, I’ve always been a skinny one. Little to mine and my mums knowledge we thought the flushes and Rituximab was chemo done so you can imagine our faces when the nurses walked into my room with four HUGE syringes and two more small IV bags, jeez! 4 and a half hours later my first cycle was done all I was thinking was work your magic now chemo!

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More chemo! 

To say we stayed 4 days it actually went surprisingly quick. Finally we was home, I felt great! I could breathe and I was bouncing due to all the steroids I’d had, I could have probably gone to Blue Bar on a wild one until I bit into a coffee Revel and all my jaw began to tingle. ‘What the hell was that’ I shouted to my Mum and Connor in the front room, ‘my jaw, my jaw its tingling’ they both looked at me with fear, is this normal? We don’t know.

The next morning I woke and what I can only explain it was like I’d had 40 straight vodkas, I was pale white, I couldn’t move and all my energy had been taken out of me, I honestly thought this is the end, what is happening to me, I grabbed Connors hands and pleaded to him to give me some energy.

Fatigue is something I’ve really struggled to deal with throughout all my cycles so far as usually I’m like a whippet, always on the go and NEVER still. So to go from being on the go to not being able to even stand and brush my own teeth or dry myself after a shower was a massive shock. My body is working so hard even when I’m relaxing, I need to cut myself some slack sometimes but I’m pretty stubborn.

Then came the back pain I seriously thought I’d had four rounds with AJ, my back felt broken I was crying in pain to my mum when she woke me with breakfast and pills. I remember thinking when will this end? Will I always feel like this? Well the answer is no, I’m on my third cycle of chemo and let me tell you, you get stronger each time. Yes I still get every symptom, my taste buds go for a week and half, my fingers tingle and my Dad rubs my back every night (class A back rub he calls it) but I deal with them so much better now I know what to expect and just keep reminding myself It will be worth it in the end when you have kicked big C in the ass!

 

 

Now the good days definitely out weigh the bad days, when its my good weeks my bad week after chemo is a distant memory. That’s until my bail is up and I’m back hooked up ready to do it all over again.

My diagnosis

Where it all started April 14th 2018,
Grand National day we were going to Leeds with friends for the day, that morning I woke up with an awful cough which made my chest rattle but soon passed as the day went on, all day in Leeds I was shivering, I felt sick and really uncomfortable, however this seemed to pass and I felt back to my normal self. A few weeks later I began again with a terrible dry cough and also abnormal itching all over my body, I couldn’t stop I was like a dog with flees it was horrible I would itch that hard id make myself bleed, a week of this and I couldn’t cope so I booked a doctors appointment, they asked if id had a chest x-ray which I replied no and also no to blood test to which the doctor replied, ‘I think its asthma’, can you just develop asthma like that? I also told the doctor about my itching which he firstly put down to my hair follicles and then proceeded to say it was my hay fever so prescribed me a strong antihistamine (which by the way did nothing).

Taking on the doctors advise I took the inhaler for 4 weeks which didn’t seem to improve my breathing at all and the cough seemed to be getting worse. I went back to the doctors this time an appointment with the nurse as my heart rate was through the roof at 140bpm and I needed a Spirometry test to fully diagnose ‘asthma’, I was going paler and paler the nurse kept asking if I was ok to which I replied ‘no I can’t breathe’, I took my salbutamol inhaler which is suppose to improve your peak flow and breathing but in my case it worsened it, this obviously wasn’t normal. However the nurse said she wasn’t concerned and would give me the preventer inhaler to try as there wouldn’t be a tumour blocking my lung and airway ‘due to my age I was too young’ (little did I know at this point the tumour was nicely growing in my lymphatic system) in my chest.

Night sweats! I literally thought I was going through the change my pyjamas and bed sheets would be drenched to the point I had to get changed, I was beginning to get worse to the point I couldn’t move I went off my food and what was noticeable to other people I was losing weight all the common symptoms of  Lymphoma. I rang my mum I was crying I remember saying to her something is terribly wrong with my body I don’t feel right.

The next day we stomped down to the doctors I told them (yet again all my symptoms) to which they replied well your chest is clear and I don’t think its infection (but yet I was going hot and cold, off my food and had fatigue) it all went silent then all of a sudden my mum demanded a chest x-ray. The next day I had the chest x-ray to which they called me to sit down I was all alone this was when the bad news started. All my left lung was compacted with what they thought was infection I was living off my right lung and 1/4 of my left, no wonder I couldn’t breathe. I got put on clarithromycin antibiotics for 14  days, and was told I had been referred for a urgent CT chest. By Monday at 09:30am the phone rang they wanted me in straight away for the CT, my Mum and Dad had just gone on holiday I was hysterically crying all I wanted was my Mum but I knew I had to go for this scan today. After the scan I had to wait 10 minutes as I had the warm dye (which makes you feel like you have weed yourself), they left me longer than 10minutes I started to panic I knew something wasn’t right I worked in this type of profession and know when you are left and the nurses don’t look at you something is wrong. I got taken into a room where the Med Reg spoke to me and said that abnormalities had shown up on my scan and my lymph nodes were swollen, which they believed could be Tuberculosis but until the could diagnose this more test needed to be carried out. The next day I had a bronchoscopy (a camera down my nose into my lung) the samples the took I had to wait 6 weeks to see if tuberculosis grew on the samples they collected. 6 weeks?! I felt shocking. 09:30am again the next day the phone rang it was the worst week of my life this time it was a CT of my abdomen and pelvis as tuberculosis can spread.

I got put on different antibiotics as all the consultants who looked at my scans believed it was a really bad infection ( my scans had been to 5 lung meetings to which they all said infection) I started to feel better which was unusual, as on my chest x-ray the ‘infection’ hadn’t seem to have gone down. The next step was a lung biopsy and I got admitted to hospital as I felt so unwell again, what was suppose to be one day in hospital changed to a week my bloods were all over the place and they wanted me to wait for my results to see what the next step would be. They changed my antibiotics to IV and also some oral I still felt the same this is when I began to panic as I wasn’t getting better. A doctor also came to me over the weekend and proceeded to take cancer bloods ‘just as precaution’ me Connor and my Mum were crying with fear cancer bloods nobody has ever mentioned this to me? As the days went by I began to forget about the bloods as one cancer marker came back normal so I presumed all the rest would however that wasn’t the case. 1st chemo

Friday 20th of July exactly a week since my lung biopsy the results were back, the nurse sister came to me and said would you like your mum with you for the results? Erm yes and why are you asking me this you haven’t asked me every other time the doctors have come to me, I knew something wasn’t right.

‘’You’ve got cancer’’- (Primary Mediastinal Diffuse Large B Cell Non-Hodgkin’s Lymphoma) I don’t think these are the words you expect/want to hear at the age of 21 or any age for that matter, but that’s exactly what I heard. My whole world came crashing down around me, my legs went to jelly, I felt sick, I was in disbelief. I remember sitting on the hospital bed with the consultant in front of me and my mum to my right everything he was saying wasn’t registering the feeling of heartbreak was taking over my body, this was happening, this was real life. I began to ask myself, why me? Nobody can answer that question because there is no answer to it. The one question I did ask was if I would lose my hair as this for a girl is a big part of my life, the answer was yes and I just remember the pain that went through my body, this was happening and it was happening now, I knew I had a tough journey ahead of me, my biggest fight yet, but the main thing was I could be treated.

I immediately wanted to go home and I could, I wanted just one ‘normal’ weekend just me, Connor and my family before all the appointments and what we had been told became a reality and that’s exactly what we did, we ordered a takeaway, ate at my favourite restaurant and spent quality time together which was so special to me.

Once the weekend was over it didn’t take away the fact that I had cancer and as a family this was a massive weight on our shoulders, we had to deal with this together and came to the realisation it was time to tell close friends and family. How do we even word it? How do we tell those closest to us? I couldn’t tell my close family so I gave that job to my dad I had to figure out how to tell my friends that this was happening and basically my life was going to come to a stand still for quite a few months.

All my friends and family were so understanding I was surrounded by love and support and I was so grateful for that. It made me stronger as a person and have a positive outlook on the situation.