It’s okay not to be okay...

Today is World Mental Health Day. 

I have struggled with anxiety since Jacob was born. It was almost instant. I had a constant worry that something was wrong with him, turns out I was right but that’s a whole other story!

Once Jacob was diagnosed, it kind of took a back seat as I focused purely on getting my son through his cancer treatment, to his next check up, to his next chemo. It was when the chemo stopped and the hospital trips became further apart that it reared its ugly head again. I became irrational, constantly thinking I was ill, or had a life threatening disease. I’d go to bed at night convinced I was going to die and not wake up. I became convinced that I wasn’t going to make Jacobs first birthday. I must have gone to the doctors 10 times in one month, with a new ache or pain that I’d make worse by constantly  prodding and poking myself. Luckily for me, I have an amazing doctor and instead of making me feel stupid and like I was wasting her time (which looking back, I was) she would send me for a test that would rule out the current disease I was convinced I had. I became obsessed with googling symptoms, and we all know how stupid that is. Except I didn’t care. I knew I had all the symptoms of this disease and some of that disease and that other pain must be that. Except most of the pains were from where I’d felt for the glands in my neck so much that my whole neck was sore. And my stomach was sore because I’d been pushing on it all evening convinced there was a lump that shouldn’t be there.

I became a nightmare to live with. I started showing Rich certain things I’d do certain ways for Jacob, or getting Jacob’s outfit for the next day out the night before in case I had a heart attack in the night and died. 

I knew in my mind that I was being completely ridiculous but I couldn’t stop it. Eventually I was referred for counselling. I wasn’t going to go. Except I did, and it was the best thing I did. The lady I saw was so lovely, and didn’t tell me what I wanted to hear like everybody else. I ended up seeing her for about six months. We got to the root of why I was behaving the way I was. A lot of what I was feeling is quite normal when you become a mother. I became obsessed with being there for my son. I couldn’t die. I couldn’t leave him behind without a mother. It wasn’t an option. I became obsessed with checking myself for this or that because I had to catch whatever disease I had early so I wouldn’t die. Ridiculous, considering my son actually was battling cancer. But a lot of it came down to Jacobs cancer being missed multiple times. If they missed that, then they could have missed this lump on me, or this unusual blood result. And in my head, if they missed that, by the time they find out what’s wrong with me, it will be too late. 

I’d also started taking medication to help with the anxiety but fell pregnant with Alba around the same time my counselling finished, so had to stop. I was absolutely fine through my pregnancy, I was more worried and anxious naturally but also, in my mind, because I was being checked so regularly, blood tests, blood pressure etc, they’d know if there was something wrong with me. After she was born, it slowly crept back in. Within days. I was convinced I had a blood clot in my leg. Then I was convinced that something had torn inside when I was in labour and they’d missed it and I had internal bleeding. Then it was the blood clot again. I had a constant pain in my left leg which I was convinced was a side effect of a brain tumour. It wasn’t, it was a trapped nerve and sciatica from carrying Alba around which some Physio and Pilates sorted right out. I went back onto medication and all was well again. To the point where I thought “I’m okay now, I don’t need these.” And after a few months, I stopped taking them. 

Last summer, I started getting awful chest pains, like someone was bear hugging me, and was so short of breath all the time.  I didn’t feel anxious. I was so busy with the children that I didn’t have time to even think about it. But when I sat down and did think abouth it, it was crushing. Jacob had relapsed, his vision had gone to shit, Alba was exceptionally hard work. I was having panic attacks. Back to my amazing doctor I went, an ECG and blood tests for various other things that I’d decided I most definitely had later, I was back on medication. And have been since. And I probably will be for the rest of my life. Because they help me be a better mother to my children. I’ve tried other routes, remedies if you will, but nothing works. So now, it’s happy pills, the gym (when I can be bothered!)  and enjoying my kids. I still have bad days. Some overwhelming, but I just tackle it head on, I cry, I scream, and then talk some sense into myself. I can’t control everything, and that is a huge part of it for me, I couldn’t control Jacob’s cancer, so I thought I could control what happens to me. But you can’t. And life is way too short for that kind of worry. I stopped enjoying my kids, I was so miserable, I didn’t want to do anything. One of my favourite sayings is “Worrying is stupid, it’s like walking around with an umbrella waiting for it to rain.” 

I know I’ve waffled, but my point is don’t bottle everything up. It doesn’t make you stronger, it catches you up in the end.  People often tell me how strong I am and how amazingly well I’ve coped with Jacobs journey as we call it. But behind the Instagram filters and the smiley face was a crumbling new Mum who really struggled to cope. 

 It’s okay not to be okay. 

x

A tonne of bricks...

"I'm going to ride a motorbike when I'm bigger!" That was it, a huge tonne of bricks dropping onto my chest. Obviously I didn't tell him that he probably wont. Unless he's a passenger. But even then, I probably wouldn't let him anyway. With "big school" becoming imminent as opposed to next year, or a few years, it's in less than two months, I have started to realise how Jacobs vision is going to start affecting his life more and more. Last night we were talking about our friends little girl who'd been to her school disco, Jacob said "I want to go to a school disco!" I said "Do you? Do you think you'll like it?" And he said "no, it will be too dark and loud. I won't like it." That's 2 heartbreaking realisations in 12 hours. No school discos, no riding a motorbike. What next? Obviously I know none of this is set in stone, and who knows what will be available to Jacob in the future, but for now, they're a no. And it isn't fair. 

Part of me cannot wait for Jacob to start big school, I know he will love it. But the anxiety I feel over him starting makes me want to keep him at home forever. Or at his preschool. Because I love them for how they've treated my baby boy and can't imagine anywhere looking after him the way they do. He got into the school I really wanted which was amazing. He has a huge Education and Healthcare Plan (EHCP) that the school, preschool and Jacobs Visual Impairment teacher put together along with Rich and Me and it covers absolutely everything from starting the day, to coat peg positions to where he will sit in the classroom. So I know they know all they need to know. And once Jacob starts, they will see his isn't what he seems on paper. On paper, I think he can be absolutely daunting. It isn't until you meet him that you realise how he doesn't actually let his sight or lack of, affect him. 

I know it's been a LONG time since I last wrote, Jacob is still stable. Our hospital appointments are 3 monthly at the moment and hopefully will only get further apart. We've had some behaviour troubles with Jacob but I think it's down to all the change going on, leaving school, starting big school. Alba is a lot more "involved" now so he absolutely tortures her and has become very protective of all of his stuff. Another tricky phase in life with two toddlers I'm sure. They have brief moments where they're the best of friends and it's absolutely lovely. But they are few and far between. We've also had chicken pox since the last post, but they both coped really well with it. Thank goodness! I will write again soon! 

A few photos from recently; 

Do they really have to grow up?

I had a really good cry tonight. I haven't cried properly in ages. Like, I cry at the Christmas adverts, and at that bit in Toy Story 3 where all of the toys are heading to their death in the furnace, but I haven't had a "proper cry" in ages. It all started with viewing a primary school... Jacob is due to start next September, and although I know it's been coming, apparently I hadn't actually, fully accepted that it was happening. Until tonight. Basically, I had my heart totally set on this one school, that I hadn't even viewed, but I have heard amazing things about it and their OFSTED report is also brilliant. But it turns out, none of that actually matters. Because when I walked in, it was such a crazy, tight, cluttered layout that all I could think of was how overwhelming and scary it was going to be for Jacob. And how many accident forms I would be filling out each week. Now, don't get me wrong, I know I've only viewed one school, and they may all be like this, but all I wanted to do was turn and run. And homeschool him. They have to just "get on with it" from the start, so you don't take them into the classroom on their first day, they just go, find their pegs, hang their stuff up and go. And then they go collect their school dinner, scrape their own plate, put their cutlery in one bowl and then pile their trays up. All totally acceptable. But I know Jacob won't be able to do this without help, and I know help will be available but I hadn't fully grasped the concept that this is when this disease was actually going to start affecting his life. It's obviously affected him his whole life, but I've always been there to hold his hand, to help him. I know how he likes certain things, how he does certain things, how he works things out because he can't see. And I honestly can't bear the thought of him going off on his own. I sound like he's leaving home, but I really didn't realise that this was when the visual impairment that the bastard cancer left behind was going to become an issue. Which is probably the most naive I have ever been. Except for that time I thought two babies would be a breeze...

I'm branching out now and planning on viewing schools I hadn't even considered because of where they are etc. But as Jacob will have a Health Care Plan in place when he starts, he gets more of a choice. It isn't decided on catchment area or siblings for him. So he kind of has the pick of the bunch, which I wasn't going to take advantage of, but think I may do now. Has anyone else had their heart set on a school, only to view it and be disappointed?

Why do our babies have to grow up?

Hello, only me again!

Still not too good at keeping up to date with this am I!?

We've had some wonderful news since i last wrote, Jacob had a check up at the end of September at The Royal London Hospital, and he is cancer free!!! Basically, the swelling of his optic nerve caused by the Intra-arterial chemotherapy, cut off the blood supply to the tumours and they've literally shrivelled up and died. So, an awful side effect which wasn't very common has turned out to be a brilliant side effect! Retinoblastoma is quite different to other cancers in the sense that they don't ever get the "all clear" in all its glory. He will still have to have regular checks as there is always a chance of a relapse, but his consultant Mr Sagoo was rather confident that it is very unlikely that we will see a new tumour grow now. This was obviously very unexpected news. I actually had a bad feeling about this appointment. Shows how much I know!!! I obviously spent the next few days in shock, crying everytime someone said "that's amazing news isnt it!?". Rich said he felt like he was floating, which I think must have been how I felt too. It is such a strange feeling. Obviously besides the first 12 weeks of his life, hospital appointments and cancer treatments are all we knew with Jacob. So to know that life will potentially return to some sort of normal is amazing. And scary. I feel very lost and almost like it's starting a new chapter. Which it is. I just don't know what about. We've not done this part of the story before. We didn't think we ever would. I'm definitely rambling.

Jacob is absolutely loving preschool. He looks so adorable in his uniform. He has hot dinners everyday and I have to make sure I know what's on the menu for the week as he asks me every morning what he's got that day! Getting out of the door by 8.30 every morning can be challenging, especially if he's having one of his less cooperative days. But we are doing it! He's learning so much, and his new key worker is lovely, as are the rest of the girls. They've gotten Jacob a desk lamp for when they do writing etc as he has one at home that he uses when colouring in and we found it helps. I'm one of those annoying mums though I think, as I ask so many questions and on Friday I asked if there's anything I can do at home with Jacob to help him along and to feel more confident as the last thing I want is for him to fall behind. But his nursery nurse was amazing and gave me a few tips and told me a few things they're doing. Can you believe they learn phonics at this age!? I love that he's officially learning now. I know they "learn through play" etc but I absolutely love him coming home and surprising me with things he has learnt. He's informed me that inside his head, is his skull and inside that is his brain. He knows where his spine is and where his heart is, "it's in my chest mummy!" Where is my little boy!?

I've started looking into primary schools. (I actually can't even talk about this without crying.) I have a pretty good idea of where I want him to go, and can't believe that we have to apply by January. FULL TIME SCHOOL?! WHAT! It really does just fly by doesn't it?

My second little person, I've nicknamed her Reagan. From the Exorcist, if you're unsure. Because she is 100% possessed by some crazy little devil woman. She is nuts. Possibly the naughtiest child I have ever known. She's gone back to hating everyone, except me. Yay. She screams and throws/launches/attacks anything within a two metre radius of her tiny, little self if she doesn't get her way. Or I go out of sight. Or just for fun. The attitude is a whole other level of teenager. And she is EIGHTEEN MONTHS OLD. I did discover that her father had a horrendous attitude and temper as a child, so we are blaming him for this one. My mother said I was a delight. Obviously. Haha. Again, I'm sure it's just another phase. Not that it justifies the launching herself backward in a strop, especially when it's onto concrete in the street. Because then, I just have to get her up and give her a cuddle as she has legitimately hurt herself. You think she would learn, apparently 18 month olds don't quite make that connection yet. Don't get me wrong, she is an absolutely hilarious, adorable, loving little thing. To me. And sometimes Jacob, when he doesn't push her over because she touched his cars. Sometimes she can't win, poor doll. She does sleep amazingly though which is great.

How cold is it now?! I got the kids really cute coats this year. I wanted a really gorgeous coat from Next for Alba but it wasn't very practical so she's got a khaki green parka like mummy. Jacobs got a gorgeous mustard parka from Next. I want it in my size!

We are back at the Royal London Hospital next week for Jacobs first check up since we got the amazing news so fingers crossed everything is still the same!!

And the award for worst blogger ever goes to...

Me! So, two kids that don't stop moving from the second they wake up in the morning, (usually 6am, 5am lately.) until the second they go to bed at night, makes it very difficult to sit and write these blogs. And I'm not even exaggerating. They're both like little Duracell bunnies that get high on oxygen. It is EXHAUSTING. And to make it even more fun, if Alba even so much as blinks at Jacob, he totally loses his shit. I thought "Ah, 2 year age gap, they'll be the best of friends, they'll play together so lovely." Nope. I am an idiot. So, the blog gets neglected. Don't worry, it's not the only thing I've forgotten about. My hair, my eyebrows, I can't remember when I last cleaned my bathroom with something other than baby wipes. The dog probably hasn't had an affectionate cuddle or human contact that wasn't being shoved out of the way/tripped over/being rode by a small human for months. I'm not even sure Rich still lives here. I forget to speak to him lately too. Okay, that last one was a joke. He lives here, I just don't talk to him.

Anyways, besides all that, yesterday was 3 years since D-day. Or diagnosis day. Or the start of Jacobs fight. Whatever you prefer. It was also Rich's birthday, but I also forgot about that. Not really. He got a Colin the Caterpillar cake of course. This year is the first year it hasn't gotten me down. I thought about it of course and still remember it like it was yesterday. But  I didn't sit moping about it. I normally feel really anxious leading up to it, apparently it's quite normal. But it was lot less this time. Just seeing Jacob now, a crazy three year old is so different to what I thought he'd be like now. I really wish the me then could have come and met the me now. But then it wouldn't have been so much of a journey would it?! 

Jacobs had two check ups since the last blog. His vision is slowly improving. The IAC has left behind alot of damage and they've seen slight improvement each time. His retina has finally reattached but we are just playing the waiting game on the vision. He can see around two metres in front now which has dramatically improved from the 20 centimetres he could see 2 months ago. He does brilliantly at home and is slowly starting to be able to point things out in books again. He still doesn't manage depth or change in surface well. So steps, kerbs, shadows. He stops and panics alot. Steps, he tries to sit down and shimmy down them. He did this on the underground last week and I absolutely went into meltdown over the germs. He has to be carried alot in new or unfamiliar places too. It could improve, it could not. He's still not fussed over his iPad, and he only likes things on TV that he has seen a hundred times before. Which is Peppa Pig at the moment. I hate the spoilt little brat. I wish one of her little mates would give her a slap.
The good news is that Jacobs tumour is stable still. As tough as the vision thing is, if it means he is finally free of this nasty little disease, then it's worth it.

Jacob starts preschool in September, he will be going four mornings a week. He's moving up from the toddler room! I'm so excited as it will be great routine for him and I know he will love it. He's going to have a key worker all to himself which is brilliant, so I know he will be well looked after. They normally have around 8 children to one adult, but his nursery have got some additional funding for Jacob so he has the best care possible there. I was really upset at the thought of him having "extra help" at first, but at the end of the day, if it alleviates pressure on the nursery and makes Jacob more comfortable then that's fine with me. I wouldn't want him to go anywhere else and I love the girls there and know they'd come to me if they had any questions or there were any problems. I'm also looking forward to spending some time with Alba, just the girls! Jacob isn't really into baby groups anymore and all the ones Jacob was going to at Alba's age, he isn't interested in, so she kind of misses out. So I will definitely be taking her to a few groups. Although I'm sure she will just cling onto me for dear life when approached by a stranger!

We've had some glorious weather here too! Here's a few pics from recently, we've had a few little adventures to the seaside and the Natural History Museum too! Oh and to see Queenie! 

Last day at nursery! 

Hope you've enjoyed this little update. I'd say I'll try and keep these coming regularly, but I can't promise anything. Maybe my kids will start enjoying quiet, still activities soon...

Slowly getting better...

It's been two weeks since I last wrote, shortest gap in a while! Haha. Jacob finished his steroids a few days after my last post, and he was so unhappy for a fair few days afterwards. Luckily, it was half term so he didn't have to go to nursery, but I wouldn't have sent him in anyways to be honest. I managed to start putting his steroids into his porridge in the mornings which was great. And his appetite was still crazy for a fair few days afterwards. I really wanted to get him weighed but just never got round to it. And then last week he got a sickness bug so probably lost everything he'd gained anyway! The last three or four days, I can say he is finally back to himself. I didn't think it would ever come, the tears and screaming was so draining. I was wishing the days away. He's still a bit up and down with some people, if Rich picks him up from nursery, he's quite funny with me for a little while when he gets home. And he's still being mean to my sister but I think he secretly knows how much it's winding her up. Haha.

So, Alba turned one on the 4th! We bought her a wooden play kitchen for her birthday, it was obviously for Jacob too but we had no idea what to get her so went with that. And oh my goodness, I love it. Screw the kids, I've played with it more than anyone! I sit there arranging the fridge and counters, putting the casserole dish in the oven. The fun is endless! Evidently, I need to get a hobby. Its so cute though, and was only £65 from Asda. The wooden one I originally wanted was nearly £200 and I just couldn't justify it. Plus, I wouldn't have even let the kids touch it! Jacob was really good on Alba's birthday, I though he'd want to tear all of her presents open himself but he was so sweet, giving them to her and helping her open the kitchen. (Which I wrapped after spending 4 hours building the thing!) We spent the day at home and had everyone over for dinner in the evening. 

We all went swimming on Sunday for the first time, I've taken Jacob before and we went on holiday of course, but all four of us went for the first time and it was really good fun. I've decided I'm going to try to take Jacob every Sunday. He's so confident in the water which is great, and I want him to learn how to swim soon! I was quite alot older when I learnt and always said my kids would learn while they were young. I don't think actual lessons would be very good for him at the moment, especially while he has poor vision. So for now, we will take him and try to teach him the basics then look into it more when we know what's going on with his sight. He seems to be slowly improving. Or we are just getting used to it. Somedays he seems so much better, and others worse. It's so hard to tell. 

We are back at The Royal London next week to see if the swelling has gone down. I don't know what to think and to be honest am trying not to either as it is so easy to drive yourself crazy.

Look at this pudding. I couldn't get any photos of Jacob as he was like The Flash, running around like a loon.

We are finally back to calm nursery drop offs too, which is so nice. He hasn't cried this week and even went strolling in himself yesterday which was great. I requested that the Visual Impairment Teacher stopped going in to see him for the time being. It upset him so much and made him not want to go to nursery which has never been a problem. And while he is the way he is, I'd rather he felt calm and secure. And the nursery staff are just amazing with him. I know if there were any concerns, they wouldn't hesitate to tell me.

This sunshine does wonders for your kids mood too doesn't it!? Jacob just spends all day outside. Parenting is so much easier in the summer!! Although, Alba has started to climb and the girl is sending my anxiety through the roof!!! Jacob thinks it's brilliant. "Mummy look at Alba!!! She's such a brave girl!!!" No, Jacob, she's crazy!

A tough few weeks.

I was no way prepared for how tough the last intra-arterial chemo aftermath was going to be. When we were discharged from hospital on the Wednesday, I thought "Yes! All done, my little beast can get back to normal." But I was wrong. Since the Thursday, so nearly 3 weeks ago, Jacob's vision has quickly deteriorated to almost nothing. We've had so many bumps to the head, I've lost count. The worst being Jacob riding full speed on his scuttlebug into a concrete post outside our house. He's got a lovely, big graze on his forehead as a souvenir for that one. He screamed nursery down when I dropped him off on the Monday after. And he has NEVER cried. Why is it you feel like the worst mother ever when that happens? Anyway, he woke up on the Tuesday even worse so I kept him home for the day. Rich took a days holiday from work to stay home and help me as Jacob needs constant supervision. He still thinks he can run around like usual. His vision was poor after the first cycle, not the second, so I thought this would be a breeze. Nope. It's just heartbreaking to watch him feeling his way around. His depth perception has gone, so he's missing steps and kerbs too. If I could give him my eyes, I would in a flash. I spoke to his nurses at The Royal London Hospital and they've said just to keep and eye on him and it should slowly return to normal but after it wasn't improving, they pulled his appointment forward a week to last Wednesday. I felt sick with nerves the whole time, he was back from theatre quite quickly and wasn't too distressed which is always good. The doctor finally came to see us about 3 hours later, and said that Jacob's optic nerve is extremely swollen and he has alot of blood spots in his eye. They injected him with yellow dye to see how the blood flowed and it was quite restricted in his eye which means there isn't alot of oxygen getting to the muscles, making his vision bad as the eye can't work how it's supposed to. Jacob was an interesting shade when he came back around, and it wasn't until the doctor told us that we realised that was why! So, again we were told we will just have to wait and see what happens with Jacob's eye. The good news is that the tumour has responded "beautifully" to the IAC! Which is amazing. Fingers crossed that'll be the end of the horrible, little thing!

Jacobs consultant decided that Jacob should have a course of steroids to hopefully help speed up recovery on his eye. He is meant to have them for a week after IAC but it was in liquid form and we couldn't get him to take it no matter how much bribing we did. So they prescribed pills which we could crush up and put into anything. So, Jacob's been having 3 fruit shoots a day. Not the best but if it helps his eye recover quickly, I can deal with the rotting teeth after! I have managed to start putting his morning dose into his cereal which is great. We were told he would probably behave a bit wacky and have a crazy appetite with the steroids. Well, wacky doesn't even cover it. He has become a completely different child. He has not stopped crying, wanting to be carried everywhere and only by Rich. If I even touch him, he goes absolutely bananas. I think we've had about two smiles out of him in the last two weeks. It's absolutely breaking my heart to see him this way, and I keep having moments where I just cry. There's nothing we can do to make him feel better. Rich is back to work tomorrow and I am so nervous for the week ahead. I hate that I can't comfort him, and I hate that he doesn't want me to either. All I hope is that he goes back to the happy, cheeky little boy I had before all of this.

Jacob was 3 last Sunday. THREE! I can't believe it. He had an okay day, not like he would have if his vision was 100% but it was still nice. He asked for a roast dinner for dinner, Rich was very pleased! So we had family over and all had dinner and cake together. He got totally spoilt. Him and Alba had a joint party yesterday as she is one on Saturday. (Don't even get me started on that one, I've been an emotional wreck about that too.) Jacob had an okay time, he was glad to see some of his friends and they all played on his new trampoline. He got a bit overwhelmed which I expected, and he was absolutely shattered after and flaked on the sofa.

Today has been really tough again. I feel awful for Rich as he has had to take Jacob absolutely everywhere with him, to get a drink, to the toilet! It's insane. It was so draining for me when Rich wasn't home last week, and he's even worse this week so I dread to think how he feels. We have tried to leave Jacob to cry it out a little bit, but he gets in such a state and then Alba gets really upset. So we are just doing everything we can to try and keep him calm. Another side effect is that his appetite has increased, ALOT. The food that boy is shovelling away is crazy! I had to go to Tesco today to stock up on pretty much everything as he just hasn't stopped eating! I shouldn't complain as getting food into him is such a challenge. He is on these tablets until Friday, and I cannot wait for them to be out of his system and hopefully get back to normal. I miss my happy boy.