I’m not going to lie, chemotherapy sucks as it says in the title. Number 12 of chemo +6 of Avastin. This one has hit me hard. Came home on Wednesday feeling like I’d been hit in the stomach with a baseball bat. I was sick in the hospital, felt totally drained. Ended up going to bed at 5pm I was so tired. Then I’ve spent the last two days in bed, haven’t had one like this for a while. It’s worst during the lockdown as well. Usually my mum would come over, and all the time’s she has been here before I’ve been fine. Apart from this time. Now is the time I feel totally useless as a dad and husband. Battling these emotions is hard, I just need to constantly remind myself that I’ll have bad day and good days, let’s make the good days outweigh the bad.
Anxiety my old friend
Well it appears that time does not cure anxiety. I’m in my appointment week. First today was seeing the Dr and then bloods (won’t find the full results until tomorrow), on a positive she did say that I look well, still managed to crack a few jokes. An extra anxiety tablet didn’t really help much, I did sleep most of the day. But today is by far the worst, trying to eat and I get an instant reaction of my anxiety cough and then sickness. Shame as well as it was my favourite food. I usually devour it. 🙁 next time.
So we’re all in lockdown, we’ll I’m in a 12 week on 3 weeks in and gradually going stir crazy. I’m used to a bit of quiet time during the day (have my sleep, play some Xbox), this isn’t happening now not with all the kids isolating and Emma as well (all to keep me safe). I’m grateful that they are all doing isolation with me. I’m lucky I’ve other humans to talk and interact with, one of my friends (Beizsley, I’ve mentioned him before) just has a dog to keep him company. He’s now a crazy dog man and always will be.
But enough of that back to me, after all it’s all about my journey. So where am I in it? It’s been a while since I’ve posted and I’ve even been asked if I’m still doing it, which has kicked me up the ass to do it more. Why did I stop? I reckon I had writers block also I was feeling really down for a while. Well not really down more fed up. I was letting things get to me. Fed up of my stoma, fed up of emptying my bag (feels like I do it far to many times a day, but it’s only 3/4 times. Imagine going for a poo that many times it gets boring). Fed up of my situation, fed up of noticing every pain, grumble, ache and wondering if it’s cancer doing it or something else. Some of my advice for people going through the same as me is you’ll get these days, maybe weeks, just remember that you will come out of it. Carers all I can say is support them, hug them, listen to their problems. It felt a lot better me talking to Emma about my issues. It may not have brought me out of my fed up feeling straight away, it was nice to unload my feelings rather than them going round and round my head. I know I repeat my problems to Emma and the one line that I always remember is “you’re alive”. And it’s true. Why should I keep dwelling on the same stuff (I still will I know it) when I have air in my lungs and children tripping me over. So carers just remember, hugs and listen to their issues in their head.
Now COVID-19 is swimming around everywhere there are treatments that are stopping or being delayed. Mine is one of them. In speaking to my oncologist nurse the other day I’m being delayed for at least a week. So no treatment next week, hopefully the week after. One of the reasons is my treatment is so aggressive (4 chemo drugs) so it lowers my white blood cells. Hopefully the weeks off will raise them enough for me going into hospital for treatment to start again. Fingers crossed.
So one of my promises is to write more. I’m hoping to do a short blog once a week and a longer one at the month end.
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What a day
In the build up to where I am after having a brilliant time at the kids rave at Bustlers in Derby it’s been an interesting few weeks.
If you’ve seen me you’ll have noticed that I’ve a cough that just wouldn’t disappear. It’s been with me since about December 2019. Yup throughout Christmas I was having coughing fits and fed up with blowing my nose. (I swear one time what I blew out was a sentient being). However one great thing is I’ve now abs of steel after coughing for nearly 3 months. But there is a down side with coughing so much and having a stoma. It appears I’ve coughed myself a hernia around my stoma, whoop diddley whoop. So now when standing up it no longer looks like just a low third nipple, it’s now pretty much an entire boob. But they cannot operate as “I’m inoperable and terminal” (I’ll show them I’m not and the operation to remove the tumours will go ahead). Turns all the coughing and snot is the flu, so yet another course of antibiotics to shift it. Only problem is that being surrounded by 3 kids (which is a joy) and Emma, I’m sure I passed it to them and they’re bound to pass it back to me……it’s going to be an endless cycle.
Now we have the coronavirus going around I’m classed as a “high risk patient”. That means I’m pretty much on lock down, apart from my hospital appointments (which are essential and won’t be cancelled). Problems with this……funeral on Monday should I stay or go? I’m in total 50/50. Two people have flown in from high risk areas, so it’s looking less likely I’ll be attending, it’s not worth the risk. Even if I go masked, gloved up and covered in sanitiser I doubt it’ll protect me, then there’s Emma, she’ll have to do the same. Hopefully it’ll pass without me getting it. But only time will tell.
Well what else has been happening? My CEA (cancer markers) have been reducing since my second cycle of chemo. Not just reducing, it’s more of news than that…..it’s been pretty much halving. From over 2000 in October it’s now down to 98. Lots of people tell me not to concentrate on the CEA too much as it can be a false lead, but in the grand scheme of things I’m following it. Plus my liver function is now normal, which I prefer more because if that starts to fail it’s gonna be curtains for me. So from being nearly 3 times the size it should be (no wonder it was uncomfortable to sleep) it’s now normal. So I can lie on either side and not feel an unusual pressure weighing down. It’s about time I shared good news with all the great readers.
Also I’ve started oxygen therapy (although it’s now been closed due to COVID-19 as we are all high risk who use it). What’s oxygen therapy I hear you ask? Well first are you not up to date with the Facebook page For Adam, but it’s interesting. Apparently with research results cancer thrives in a CO2 environment so with the oxygen therapy it loads the platelets with oxygen so I have a richer oxygen environment. How it works…I go into a diving bell (pretty big can fit 8 people) and they pressurise it to 33ft below sea level then I have oxygen mask (I look like a fighter pilot) and an hour and half later I’m brought up to regular pressure. I feel amazing after, glow in my cheeks, walking with purpose I love it.
So on to next week. It’s appointment time, find out blood results, and chemo. I’ve had a break for a fortnight so my friend anxiety has returned, as it always does. But as always we will share the news (good or bad) on the For Adam Facebook page.
Stay strong everyone, thank you for all the lovely messages which I read everyone.
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Kids and coughs
23/10/2019
I’m back home for 4 days and my temperature rises to 38.0 and I’m breathless. We call the rapid response and see what they say, they’ll call us back. And in we go to unwell ward, there’s, what five of us in this assessment bay. We’re all being transferred to wards and beds when available, it takes ages. Probably going onto 4, maybe 5 hours, but I know what it’s like trying to clear a bed. Letters, pharmacy, discharge notes, then cleaning.
So into the room I go. Solitary room and not a ward (one of the bonuses of having had c.diff) so I have my own TV, a lovely view from my window of the room of was just in. Finally I lie down on the bed, adjust it to how I like it (knees bent a bit and back at about 60 degrees). Emma sits next to me, I can see the worry in her eyes, I try to reassure her with a hand squeeze, it just about works. Next in comes the nurse, temperature, blood pressure and stats. 38, fine and fine. IV antibiotics started through my PICC line (best thing ever, never had a cannula since it was fitted). Now this is where both me and Emma are apprehensive with antibiotics, last time I had them I ended up with c.diff and now they are pumping me full of them. Then this time it’s not going into my stomach so we hope it won’t happen this time. Time comes for Emma to leave. We part with a kiss and hug and I fall asleep.
24/10/2019
During the night I’m visited twice by nurses taking temperature and the stats. Still the same. Morning arrives, I like this ward already, i look at the clock it’s 8am, that was a good nights sleep. Woke up dripping with sweat as usual, but I’ll explain more about that later as I find out. Usually by 8am the breakfast has arrived and they’re clearing it away, not here, not this ward. 8:10am, I am now wondering where my breakfast is, it’s the little things when you’re in hospital that turn out to be major. This time it’s me thinking that they’ve forgotten my breakfast. The door opens………….I wait………….I……………I……………see……………. a blood pressure monitor and temperature taking thing (electronic thermometer), no breakfast. Now remember this, what the nurse says to me, because I heard it a lot. In comes the nurse “phew its warm in here, now lets take your temperature” takes temp, blood pressure and stats “temperature is a bit high 37.8” this is where I say “you just said it was warm in here, also is breakfast coming?”. Half expecting him to say “They’ve already been” he replies favourably “not here yet, they should be here soon though”. As with everything no sooner had he mentioned that, in she walks, the breakfast saviour. Porridge, toast, juice and tea. Same as always.
So it’s the 24th October, the only day I can say this to any of the nurses when I’m asked (and I’m asked a lot, every time my stats are taken, anytime any drugs are given, anytime IV is used, and when Chemotherapy is given, every drug) “date of birth please?” I can answer “today in 1982”. Porter comes to take me for an xray, again. It’s all I seem to have. So down I go, small talk with the porter and we arrive at xray. “date of birth please” they ask me “today in 1982” I answer. “ooo so it is”. I mean, come on it’s not everyday you get to say that.
The day rolls on and slowly daytime TV takes over. It makes the day seem kind of normal, and pass quicker. Same again the nurses come in open the door “oooooo its warm in here, come to do your obs”, assume the position, arm outstretched, finger presented and finally ear raised. “temperature is a bit high”, “yeah its probably due to people keep closing the door and there’s no windows that open here”, “it does get warm with the door shut” nurse turns around walks out and …………… yep you guessed it, shuts the door.
The day marches on and in comes an F2 doctor. “hi, erm, yes, we’ve been monitoring your temperature and it seems to be staying too high for us to let you go home tonight. Now I know it’s your birthday and you’d have like to get home”, “Well if you think it’s for the best then I’ll stay in for one more night”. Really need to clean this fan, it’s never going to keep me cool with all that dust in the vents, as there is no opening window the fan is the only thing I have. I ask the nurse for a brush……………………apparently not very hygienic, but she did take it away and said she’d clean it. Time passes………..more time……….the door opens and the nurse reappears, filters clean on the fan. Now on full speed it actually moves the curtains rather than nothing at all. So another night in the hospital bed, with a working fan at least now. Still having night sweats so sleeping on a towel which is drenched after about 30 minuets of me lying on it (yes watching day time TV, there is not a lot to do when in solitary). Finally the night comes and Emma leaves, parting with a kiss.
During the night, my sleep is interrupted by the same “obs” assume the position. Morning arrives and I’ve had a good nights sleep (one of the benefits of my own room). Same during the day, although this time it’s starting to annoy me. And the same F2 doctor comes in as yesterday “right well your temperature hasn’t really changed that much…..”, “Well no I doubt it will have as there is no window to open in here, the fan has only just been cleaned and people keep shutting the door. Tell you what if my temperature doesn’t go up then I’m leaving……”, “right….well…..I’ll have to speak to the senior consultant”, “you go and do that”.
Not long after another doctor comes in with discharge papers and with that I’m out.
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First line chemo
So as maybe many of you might know I didn’t make on the Anchor trial. After building myself up to hopefully get some good news out of all of this and it was a phone call I wasn’t wanting. The reason why is my liver function is not great, good old bilirubin was up at 47 which was outside the limits of the trial parameters set by the sponsor of the trial.
Our journey up to Manchester and The Christie’s Hospital was on Monday, Tuesday I got the phone call while laying in bed (so at least they were quick to let me know and move on with my treatment). Not the best news, not even by the slightest. First being told that I’m not on the trial, then being told that my liver is possibly starting to fail as there’s high bilirubin. Had a half hour cry, I just had to, puts things into a scary perspective. Does this mean this cancer that I have is actually more aggressive than I first thought? Am I doing something wrong to make it progress quicker? These are just some of the questions I had in my head. I’ll never get an answer to them, don’t know if I’d want an answer to them.
Then I think, I’ve only just finished my antibiotics for c.diff (10 day of some of the strongest antibiotics you can take orally and boy did it knock it out of me. So c.diff gives sickness and nausea, the antibiotics did the same after about 3 days. I could hardly eat, appetite had gone, the last thing I wanted to go, what with keeping up strength and looking after my body.) 2 days before. My appetite is gradually coming back but very slowly. My stomach feels like it’s shrank to 1/3 of its size. So my body wouldn’t have been in the best place to undergo that treatment, back to the beginning then………chemotherapy.
After I had received the phone call from Christie’s I emailed my oncologist nurse. She called me back, “let’s get you in today and start this going, we can get it started quicker when you’re an inpatient”. All the information we needed was emailed over, Emma helped me pack my overnight(s) bag. I wasn’t really thinking, just staring {here we go} was going over and over in my head. Then I hear “right all packed let’s get you dressed”. Next thing we’re at the hospital. It’s like being in a time machine and Emma is controlling it.
I have my own room, window pretty good view, no TV but I’ve enough books, comics and puzzles I’ll be fine.
Tuesday: Admitted and the usual blood tests, observations, doctor visits, observations again and this goes on for most of Tuesday all the time Emma is there. She leaves about 9ish “I should really get back I said I wouldn’t be late”. That hug was the best one I’d received (they all are but knowing what was coming over the next days/weeks it meant so much more. Support, comfort, friendship, love, hope, warmth) and with a kiss Emma left.
Wednesday – bloods, observations, “temps a bit high 37.9”, breakfast, doctor visits, appointment bookings. PICC line is booked in for later today {no messing about now….have I been taking to long stuck on this trial and my life is slipping through my fingers like the miles we drove to Manchester and London for what now feels like no reason at all} then the chemo booked in for the next day. That’s it, off we go. I’m left alone.
The next 20 minutes is a picture of a 36 year old man, sitting on the edge of a bed staring out the window. A tear breaks the seal at the eye and runs down to his mouth, he licks it, salty. The other eye does the same. After that he spends the next minutes of his life sobbing uncontrollably. Tissues come out the box, wipe his face and eyes, it is of no use they are flowing.
Finally I lie down, slow my breathing, I relax and close my eyes.
“Hello Mr Cattermole, can I call you Adam?” I wake up. PICC line. Now I (well Emma and I) were worried bout this kind of line with the kids and them jumping on me, pulling things mainly out 🤢. Getting a PICC line is like a mini operation, there is however nothing to worry about. The worst bit was the cleaning and the local anaesthetic, and even then it only stung, I’ve had worst blood tests and falls off my bike. PICC line in (didn’t even feel it) off I go for another chest X-ray (I’ve had so many of these now I I’m up to 9) to make sure that it’s gone the right way. 20 mins and off I go, X-ray and back, and all okay. There’s nothing much more to say regarding the PICC line, it was pretty uneventful.
Next day is chemo day. To say I’m scared is a small understatement, I’m shitting myself. Fear of the unknown. The chemo nurses come in, and they are amazing. Explain everything, what happens, what to look out for, literally everything. Bit overwhelming in places especially as I’m like a jittery jelly inside. And it starts. First flush through, and it’s glucose 🤔 (now emma and myself {I say myself emma relayed stuff to me} have done and a lot of the papers, books, journals and other medical things have mentioned that when you have cancer one of the first things to cut down on if not remove is sugars, why? Because cancer feeds of glucose and sugars. So I’ll repeat my bit before these brackets) and it’s glucose……..okay. Still don’t really have time to complain or explain, as if the nurse is gonna say “shit you’re right Adam, let me re write the NHS guidelines”. 2 hours later and 2litres of glucose and chemo it’s all done, now just for the next one, the pump. I’m still wondering what it is, well is a small jam jar size plastic bottle with what can only be described as a little balloon inside and a little sausage at the bottom. It’s connected up, “this will be with you for 48 hours or until the little balloon becomes the same size as the sausage at the bottom”, well that’s cleared that up.
Two days pass, I feel more and more tired. I cannot be arsed to get get out of bed. My body feels like it has no strength. I was told about this, fatigue and chemo, but never realised what true fatigue felt like until now. The only time I have to move is to go the toilet and empty my ileostomy bag. I try to read but my concentration runs at about 5/10 mins, so I then try word search, nope same again. I’m going to ask for a TV. Never ask you’ll never know. I get a TV, it makes good background noise, something for my eyes to look at but my brain doesn’t have to process too much.
Saturday afternoon and the 48 hours have passed. In come the nurse and disconnect me. It feels nice not to have something attached to me, having to remember to bring with me. Still it’s off now.
An hour later and the nurses come in with my take home drugs and dressings. We’ll discharge you now if you’re ready to go home. Emma and me look at each other, “yeah”. And with that i was discharged.
Back home and seeing the kids, Rosie coughs, great. But that’s for the next blog.
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Get out of bed it’s 10am
You know what, I’ve had down days, mediocre days since my diagnosis, however I’ve been thinking I’m not surprised there aren’t really any “happy” days now. Yes the children run around, scream, shout, argue and hug, all of that makes me smile, however not any full days of happiness since being diagnosed. It always slips into your mind, just that horrible niggle “how many more times will you see that?” And then that ruins the happiness, just have to pack more in the day then, it’s the only answer.
I’m tired, nauseous yet hungry, worried and positive. All of the emotions you can think of. I’ve always wondered how long it takes to heal from an operation, and I find out tv and Films have lied to me. It’s a while. 7 weeks now and it’s still being packed, albeit the bleeding has substantially reduced. So let’s get healed then, might superglue it together…….
Today it feels like my liver is wanting to vacate my body through my ribs, I get it about once a week. It’s going to be a codine day I can feel it. Lying in bed beating myself up because I’m still in bed and it’s 8:53am, I cannot even get up to take my children to school. For fuck sake. GET OUT OF BED ADAM!! I say to myself. It doesn’t help. My right shoulder wakes me up in the night, I wish someone would punch it, it’s all muscular, I can feel the knot, trouble is it’s right under the shoulder blade. I get it as I lie on my right side, I have always lay on my left but I don’t want to do that incase my ileostomy bag leaks then it’ll go straight into my wound 🤮. My nightly routine is bed at 11pm, wake up at 2am from my shoulder, take a codine, wake up at 4am writhe around as it’s too soon to take another one fall back asleep wake up at 6am take a codine, try and get an hour sleep. All the time I wake Emma up with my stupid writhing, it cannot be any good for her. I should probably sleep in the spare bed……plus I sweat, wow do I. Currently I’m lying on a towel so it can absorb something. Sounds horrible I know, one of the joys of antibiotics side effects and having c.diff, you get night fevers and I definitely do. Waking up I can drink 2 full glasses of water and still be thirsty. But you don’t want to know all that do you? You all want to know if there’s any news with treatment. Well you’re gonna have to wait, I’m still on a rant about my stupid body. Still saying to myself to get out of bed, go and have a shower, get ready, all sounds easy really trouble is it really takes it out of me. It’ll take me a good hour to do all of that because I have to rest in between everything. All the nurses say “it’s because your body is putting the energy into healing and fighting the infection” to me it just feels weak. From going from up at 7am showered, dressed, kids ready, by 7:30am to wake up at 7am writhe around, build up the strength and then possible get up at 9am because you know you have to but your side aches, your liver aches, your shoulder aches, your stomach doesn’t know if it’s hungry or wants to throw the bile that’s resting in there up and out, your legs feel like lead, your head doesn’t know what to think, your ileostomy bag needs emptying but your scared of heaving, has it leaked? (I’ve looked and no it hasn’t), is it lifting off because I’ve sweated so much (I’ve looked and part of it has, but that’s normal, I change it every other day), have I any strike through on my dressing? How’s that healing? All these questions and it’s only 9am. Then in between you have the horrible questions that pop into your head…..my most recent one is “when my dad had polips removed 18months ago should I have gone for a check up and then it’ll have been caught earlier?” I mean come on!! But that the question that’s been going on in my head the last couple of days. One thing is my brother is getting checked out, that makes me feel better. At least he will be okay. Wait what am I saying….I’m going to be okay.
So Friday, we begin the pester of the doctors we know to see if this trial (ANCHOR) has reopened. Now here’s something we never knew, you can find all the consultants email addresses on the web, if you want to see one, google him and you’ll find his contact details. Best time to email, last thing at night. Why? Because it’ll be the first email they see in the morning. Emma and myself emailed Thursday at 11pm and Friday 8am we had a response….the trial has reopened! Amazing! And we’ve been referred to it, amazing! Now we wait….Monday Emma’s phone rings, it’s Guys hospital in London. I’ve been accepted on it and they’re sending me all the information. Amazing! But wait…..Guys? That’s the other side of the river, nows the time to push for what you want “is this trial also going on at the Christie Hospital? It’s a lot closer for us” “I’m not sure” (we are, well I say we Emma is, she did her research) “I’ll get in touch with them and let you know”. An hour later “yes it is on there I’ll transfer all your information to them” Amazing!
We get 38 pages of information about the trial, the best part is in reading through when you come to the benefit it’s a much larger paragraph compared to the risks. I’m so happy I could actually cry. I’ve been following and talking to people who were on the first recruitment and the results most of them have had is shrinkage of tumour size some have 60% how great is that? I, WE, really wanted to get on this trial and now we have.
I suppose getting c.diff was a blessing in disguise, thinking about it, if I hadn’t had it my wound would have healed quicker, id have been stronger and this all means that I’d probably be on chemotherapy now and not this trial with bio drugs that target my mutation. Some say things happen for a reason and I’m going to take that. It’s been shit, and still will be as I recover and deal with the side effects but I’m on the trial, well I still need to get through the screening but hell, I’ve got a whole leg through the door that’s opened. So Monday was a good day, so much so I actually went out that night.
Mine and my brothers business sponsored most family friendly at Derby’s food and drink awards. Being a second generation family business it’s always close to us, family. Yes we have our up and down days but I love our family business and anything to do with family is really dear to me. So after the news I had I wanted to get out and I did. I loved it. Met the reps I know as we brought manufacturers with us, met Marketing Derby, (they’ve been a great help, business wise, promotion wise, and understanding. I whole heartily recommend if you’re a Derby business you speak to them and join it’s invaluable), the MD of Marketing Derby came up to me John Forkin, I had to pass on my thanks to him and the team for what they’ve done, (I know I’ve said it a lot but) amazing! It really was a great evening, just getting out talking, seeing people, plus my brother is starting to gain in confidence (I can see it and am so proud) went up to give out the award. On a stage in-front of 300 people, he’d have never done that a couple of months ago. That was a great moment for me, it’s the small things like that though, I’m noticing them more. Those are my extra smile bits to build up a happy day. 😀
Then yesterday Wednesday, I actually did some work. My mind got away from the thoughts and I had a bit of real life. What everyone tries to get away from I strive to get towards. Real life, work, emails, phone calls, anything but my new life. Doesn’t sound like much, it’s a positive though, a step in the right direction. The road to recovery is never a straight line, mine most certainly hasn’t, however, it’s heading in the right way, UP.
And on that note it’s 10am and I should really get out of bed before Emma comes upstairs and tells me off for still being in bed. Love you Emma, always will x
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What a few weeks
First off I must apologise for the lack of post over the last two weeks, however this will hopefully enlighten you as to why.
So it starts off with a referral to The Christie Hospital in Manchester in the middle of September for another oncologist. This was brilliant, just what we wanted. Time to go and see one of the countries leading cancer centres in the UK. I don’t know how many of you have been to Christie’s, wow, it’s not your normal hospital. Walking up to the main entrance there are fountains, trees, big silver letters confirming where you are. Going through the entrance and the automatic doors almost feels like walking into a Star Trek scene. Looking around, everywhere is clean, plush, there are comfy seats in a large room. Looking over to Emma I smile, “that’s where I’m going to sit” walking over to the comfiest seat. Sitting down, {every hospital should have seats like this} they are the best seats I’ve had in a hospital. Soaking in the atmosphere while Emma goes to find is some snacks a food after our journey here (I must admit that the drive up the M6 was one of the best we’ve ever had). After some food we walk around to department 1. Touch screen to book in, directs you where to go, flat-screen TVs with your appointment time and how long the wait will be and it’s not too long until my name comes up for the blood test. In and out, just wait to see the oncologist. Again my name comes up and the room number, off we go. The consultant tells us nothing new, just confirms that Avastin is a good top-up with the chemo. Wow an hour and half drive, hour wait to be told pretty much what we knew. Back home.
Still battling with sickness and nausea over the next few days we get a phone call from another hospital, this time Barnet. The week we wait, my sickness and nausea not subsiding, my weight gradually dropping, we are getting worried. We don’t mention it to each other but we know {is this the cancer spreading? Has my liver enlarged that much it’s now pressing on my stomach? Has it spread to my stomach?} we keep that conversation for ourselves. Down to Barnet hospital to see another oncologist. This time it’s a lot more helpful, the first time a trial is mentioned. The first time he’s going to press to find when it’s reopening. Again, all this could have been done over the phone rather than driving for 2 hours there and back and waiting on the most uncomfortable chairs known (this is no Christie’s hospital chairs). Still we have movement towards a trial that so far is having good results for BRAF mutation. Back home we go.
Over the next week my sickness, nausea and fatigue is getting worse. I’ve never felt this bad, my legs feel like lead weights whenever I move them. Anytime I put something into my mouth and chew, instantly a wave of sickness comes over me. Gagging I try to swallow as much as I can, there’s only so much my body can take. With every mouthful I’m battling this, trying to keep my mind on something else other than what is in my mouth. Swallowing with food at the front is virtually impossible, but if I move it to the back my stomach tenses and I heave. This cannot be right, what is wrong with me? What is wrong with my body? Is this how it ends? Is this how I waste away? One wretch at a time? I must eat……
The weeks passes and nothing gets better, it gets worse, just the thought of food and I want to be sick. Every time I empty my ileostomy bag I have to set up a bowl infront of me as I wretch. It’s the only time my mouth is moist. The sight, smell, the thought of what I’ve eaten is now dripping out is too much, I’m sick. It’s the worst feeling, wanting to take a deep breath in after being sick, but that breath will make you sick again it’s a horrible battle. It’s a Sunday. My whole family are here. I cannot muster the energy to go the stairs, still with the sickness in my stomach I manage to get to bed and drop. I’ve no energy, I feel like I’m dying {is this what it feels like? I’ve wondered}. I close my eyes, they’re heavy, I’m not tired, but they want to shut. I hear foot steps coming upstairs. It’s Emma. “You OK? You look white!” “I feel like crap, it feels like I’ve caught something. I don’t want to move…” that is all I can manage, I close my eyes again. That night Emma calls our GP (this GP as soon as she found out gave us her own mobile number, she’s the best. I really don’t know what we’d have done). Within 30 minutes she’s here, looks at me does the usual, blood pressure, pulse and sats. Checks me over and my whole face, lips, fingers and feet are white. Even the inside of my eyelids are white. I’m a classic case of anaemia. Blood test ordered for Monday. Monday comes, and it’s one of those days that our nurses come in the afternoon. Too late to take bloods, they’ll do it Tuesday. Tuesday morning and they’re here, I still look like like a ghost. They tried 5 times to get blood but every time my veins collapse and nothing. The doctor advises me to go to the hospital as I’m anaemic and will need a transfusion. All booked in, we head off. I don’t think I can remember the journey. I’m so weak, I can barely keep my eyes open.
Arriving at MAU at the Royal I’m admitted. Finally blood is taken. An hour wait and the doctor returns. “You’re not anaemic, white blood cells are elevated you’ve an infection somewhere. I’m going to book a chest X-ray to make sure it all clear” {a chest X-ray, this is scary to Emma and me as it could show if the cancer has spread anywhere}. The next 3 hours are the longest of our lives. I’m moved to an assessment ward. We wait, talk, I fall asleep further bloods are taken and we wait some more. A nurse arrives with sample bottles, yep all my bodily fluids are to be tested. Finally a doctor arrives, the chest X-ray is clear (phew). It probably just a gut infection……take these antibiotics for the next 3 days and it should clear up. 10pm we finally leave.
The next day I get a phone call from the hospital “…can you stop taking those antibiotics as your stool sample has come back that you have c.diff which is quite nasty and those can make it worse….I’ll organise with your GP to get the right ones” I call Emma up, straight away she’s on the phone to the GP and the prescription is written. Off Emma goes to get it. A 10 day course of strong antibiotics.
I’ve never been so happy to have a sickness and diarrhoea bug. All the time I’ve been battling this nausea, sickness and loss of appetite it’s been a bacteria producing toxins. My body has been battling it probably since I left the hospital originally, finally it got too much and the toxins took over and I looked anaemic. Moral of this story is, if you’ve been in a healthcare environment for longer than 7 days, have an underlying condition, have been on antibiotics (I had bank holiday Monday), are feeling sick, nauseous, have a fever (I’ve never sweated so much at night, Emma had to wash the duvet I’d soaked it) then ask for a stool sample to be taken so you don’t have to go through this horrendous journey like I did.
I am now feeling soooooo much better. I’ve colour back in my face, lips and hands. My appetite is still struggling, but that is one of the side effects of the antibiotics. But I’m putting weight back on. Hooray.
Stay strong people, and I do read every comment. Thank you for all of them. X
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Friends, family and strangers
Just after our first visit to our Derby oncologist (and that she said “do you have private insurance?”) Emma decided that she needed to get the best treatment available for me. Why wasn’t it on the NHS? Because it’s too expensive for the results. However everywhere we’ve read, heard and seen, people and doctors say it’s the icing on the cake. {Who should want just a normal cake? Don’t know about you, even my Victoria sponges are over dusted with icing sugar. My cakes have to have the best looking icing, preferably with marzipan underneath, finely decorated with piping and sugar people to eat off the top and then cream (double). Now let’s have a cake that’s for your life, is that decorated enough?} So Saturday, Emma sets up the Gofundme page. This is the hard bit. Sat next to me as she’s set all this up, looking at me, “when I press this button the whole world will know. Know what we’ve to deal with. And it’ll also make it real…..” she puts her phone down, “I can’t do it”. We watch TV, holding hands, not speaking. I know not what to say, on one hand I’m with her, how real do we want this? Yet on the other, I really want that decorated cake.
Emma turn to me “I’m going to do it”. It’s 10pm on a Saturday night, this is the best time to start a GoFundme campaign and share it on social media. {I’m being sarcastic, apparently the best time is when you, (yes you reading this) are reading social media, bet it’s not 10pm on a Saturday} Gofundme is live, Emma shares it, I share it.
Within minutes, the first donation comes through, £200. Then another, and another. Then just over 24 hours later we’re over £20,000, I couldn’t believe it. We couldn’t believe it. We’ve reached one course of treatment, a smile reaches my face. I haven’t smiled for a while, but friends, family, strangers and businesses are donating to me spending more time with my children. It’s such a weird feeling having people you don’t know leave such lovely messages of support. People passing on support that they have received in their time of need. People who have been in the same situation as me and come out of it all clear.
Next Emma receives an email from Gofundme. They’re amazed with the fund and how much it’s raised in such a short time. We’re the fastest growing Gofundme at present. Emma looks at me, I look at her. What? Something that we were unsure about setting up has become something beyond anything we could have thought. They want to start media relations. Little did we know that this would be a whirlwind of a few weeks. Monday morning comes and the phones start ringing. First our local paper Derby Telegraph, they want to run a story about me. As soon as the phone call finishes it rings again, this time our local radio station Radio Derby. They want us in tomorrow on the breakfast show {what? I’ve to get up early, I was enjoying my lie ins, it’s one of the perks of being ill. Breakfast in bed all the time (I hope Emma isn’t reading this), tea brought to me. Yes I am still ill, it’s only 2 weeks (at the time of writing it has been 4.5 weeks) since my operation and my staples have only just come out}. We cannot believe how much interest this has generated. If we can generate more, (it’s what everyone wants) then we need to do it. It’s hard keep going over my story, painful almost to relive the moment my life changed.
A week of watching the donations coming in (and still are), my best friend Jamie Beizsley comes round and tells me that he’s organising a festival. Mole Knows Fest. Planning on bands, craft stalls, food stalls, anything that can generate money. Not only that other friends want to be involved, so much so that there is now a team organising everything, locations, bands, other people. I cannot believe it, again the kindness of friends and strangers puts my faith back in humanity. How everyone has pulled together, for me? Me? Of all people……I always thought I was a bit of a knob, not memorable. It still makes me stop and think, everyone judges themselves far to harshly, myself included, but don’t because humanity is better than you think. We can be herded to what we think we want or do, yet in times like this people come together, help someone they do not know. I wish it was as simple as that… Whenever I see the fundraiser, get a message of support from a customer, friend, family, old school friend, suppliers, the list goes on, the thought comes into my head…. do I really deserve all this? It’s me, Adam.
So when Mr Jamie Beizsley sends me this:
What am I to think? I quite literally don’t know what to say. I knew they were organising something, but this? All of this?
Starting tomorrow there’s tattoo flash day at the tattoo studio where all my tattoos were done. Small flash items £20, going up to £100 for the large one. Not only that there is free cake and clothes alterations going on. Then the gigs start to come flowing in. From small local gigs to bigger bands playing in bigger venues, with food and craft stalls. I still amazes me how my friends, family and strangers have come together to help me.
This is the strength I need, this is not just my fight, it’s our fight. Yes I’ll be fighting the horrible cancer hitting me, but so many people wishing me well, supporting, donating time, money or whatever they can I have the best chance to beat this. My first milestone I want to see is Rosie in her nursery uniform, then walk her to school. I can get this goal.
First I need a treatment plan….
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What is in my head. Try to keep the Demons out….
42,000 people are diagnosed with bowel cancer a year. Of those 2,400 are under the age of 50. Of those only 12-15% have Moderately differentiated – Mucinous Carcinoma which is my cancer. Of those only 5-10% have the BRAF mutation. I’ll let you work that out for a bit……………….you get there? Well I have 15% of 2400 = 360. 10% of 360 = 36. Approximately only 36 people under the age of 50 are in the same predicament as me………..I just hope they caught it earlier.
As I start to digest the news that I have stage 4 inoperable, can only be slowed/kept under control bowel cancer that has spread to my lymph nodes and liver (that’s what makes it stage 4 the spread to a secondary organ). I find my self in the next weeks and days, daydreaming a lot more.
Lying down in bed looking out the window at the beautiful blue sky, the wind moving the green leaves and branches. Hearing every bird call, seeing every movement of nature, downstairs the two boys (6 and 4) playing……{how long will I hear that for? Will they understand? I hope they grow up to be brilliant men…….I’ll never know now……..I’ll never see them in all their school plays, watch them take up a sport, rub their knee when they’ve fallen over, kiss their head when they’ve banged it, see their first girlfriend, comfort them when they break up, jump for joy at their exam results, wave them off to university, have the first pint with them, wave them off to their new job, put them through driving lessons, buy their first car, tell them to behave when they go on holiday without me and Emma, listen to them sneaking in (I’m crying writing this……hearing them downstairs) after bring out with the friends we disapprove of, hearing how they’re moving in with someone, getting married, having children of their own……….being a grandad…….it’s such an evil disease, it takes away your future, your dreams, your life} Then my youngest, she’s only 17 months (time moves on a month already) a smile that can brighten a room, a giggle that is infectious, determination For anything she wants, so I know she’ll go far. I have all of the same thoughts as I do with the boys, but the worst one is WILL SHE REMEMBER ME? She may only have pictures to remember me by. That breaks my heart, my little girl not having a father figure in her life to show her how she should be treated by men. My little girl who at the moment is asleep on Emma’s shoulder, my little girl. I want to see her start school, see her in her uniform, skipping around like I know she will. I want to see her being loved, possibly married, (never know with the next generation), hold her hand. I still remember the first time I changed my mind about having children. Driving down Ashbourne Road and the school had just finished, I saw a little girl running after her dad, he had his hand outstretched behind him. Their hands met and the look they gave each other, that is the moment, that precise time I thought “I want that”. Now I may never get that moment. Only time will tell. My Little girl…..how I love my family so much.
Emma, my beautiful wife. This will take a while to write. She doesn’t deserve this, caring for 3 children and an ill husband, no one does. We should be planning our holidays, looking for our next house, deciding I should get the snip. Everything a husband and wife in their late thirties should be doing. {we can still have that Adam, everything will work out} She’s my rock, we argue, we laugh, we kiss, we fall asleep together, we talked about getting old together how we would still be doing all these things and now fate has dealt us these cards. The future we had planned out in our heads, our house on the Isle of Skye, seeing the world together, watching our children grow into adults together. Now, we don’t know what the future holds, how long our future is. {I’ve tried so hard to avoid how long I have left, every now and again I see it reading through articles written about me, my condition, my time. It’s scares me……..no one should know that, however I’ve read it………}
I know I need to remain positive, I am as best as I can, when you keep getting knocked back at every hurdle you encounter it’s hard. Like walking up a scree slope, it’s two steps forward and one back, only when you get news about cancer it’s feels like two steps forward and three back. Statistics are out there, I’ve tried to keep myself away from them, but have seen a few. They can only be averages and for every average there must be a high number as well as a low. I’m going to be a high number, I have to be a high number. My only bit of advice to people reading this who are going through the same or similar, no matter what your age or gender how strong you have to look, you have to cry. It’s an outlet of emotion. You need that outlet. Whether you cry alone, with a friend, with a loved one, as a family, you’ll feel better for it. Too many times people are told not to cry, to “man up”, no don’t, let it out! I cry, I think about my life, what I’ve done, what I did, what I could have done. I had so much planned, wanting to help the next generation is a great drive for me. I’m a strong believer that if you look after the next generation then they’ll look after theirs.
I’ve been through the whirlwind of emotions; could I have spotted it earlier? Probably not as I didn’t have any symptoms Why did it choose me? Why does it choose anyone you selfish man. What did I do wrong? Who knows if you did anything wrong, I doubt it works like that. Did my diet bring it on earlier? Now you’re clutching at straws. Have they missed something and there is hope? Who knows Adam, who knows. That’s why you’re getting different opinions. Has it spread more since it was last seen? Does it matter if it has…..you need to get healed before anything can happen. The list can go on and I think of a new one every other day, but they’re the negative thoughts that I have to deal with on a daily basis.
I get aches, across my back. I tell myself that it’s muscular, who knows, {it could be the tumour in your liver growing Adam, pressing on things} do I feel the stitch on my left side now like I did on my right which started this crap rollercoaster? My stomach is cramped, it can be difficult to eat. I’m hungry, just don’t feel like eating. This is what worry feels like. I have to eat, I manage to eat breakfast, lunch and dinner. Be it smaller than I used to eat, but I’m not moving around anywhere near as much as I was. {it’s my reasoning and I’m sticking to it}.
Moving forward, my wound is healing. Started at 4cm deep (imagine that, a 4cm deep hole that is the diameter of a 10p, it looks like a deep second belly button whenever I dare to to look at it) now down to 2.5cm, that’s going the right way. It’s the only medical result I want to go up, don’t want my white bloods or CEA to go up. My only issue with the wound is that it’s tracking 5cm up to another hole, so there’s a “tunnel” under my scar and the thin skin over the top is super sore. Every time the nurse comes out (daily at present) to pack my wound and redress I dread the poking around that bit 😳. Has to be done. Has to get healed. And as we joked it’s going to be closest I’m going to get to a smear test. Having a 2cm cotton swab pushed up under my skin, it’s not the most comfortable feeling to put it lightly. Positive though……no more infections since the last one. Whoop.
Ending on a positive is a change I can hear you saying, well here is another one. Stoma has settled, all the stitches have dissolved, no bleeding round the edges and I’m getting a dab hand at changing the bags. I just cannot wait for my first full shower, ooooooo that’ll feel good.
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Hope for the best….prepare for the worst
All the time I was in hospital Emma and I had been wanting to see my oncologist. We’d get a plan, a way to fight this, a way to get our teeth into everything. Building up to the day I’d been thinking to myself they’ve done the operation and in the surgeons words “achieved everything they wanted to” so in my head the primary tumour was removed, biopsy’s taken from everywhere and nothing damaged during the operation.
My appointment was first 9am. Walking any distance is still tiring, not painful, it takes it out of you. Walking down the corridor people overtake me (something I’m not used to as it’s usually me walking fast), we just take our time, I take deep breaths as I go filling my lungs (during healing you’re told not to shallow breath, fill your lungs, in through nose and out through your mouth. It calms you down as well and at this point I need to calm down, I can feel my heart racing). Arriving at Specialists Out Patients I let Emma do the talking, I find a chair, the closest chair and sit. Exhale. We wait. {what will they tell me? I hope it’s good news, I know you can never walk out of a first cancer appointment with a spring in your step and a smile on your face. I’d still like not to walk out with tears on my face, more importantly seeing Emma crying with the news. It’ll be ok, we’re in a first world country and the hospital is only up the road, it’s been caught early enough. Medicine now is so advanced}.
My name is called……
Walking into the small room, I see a woman sat down in front of two computer screens. Three purple coloured chairs a closed door on one of the white walls and the usual hospital ceiling tiles. The lady rises and introduces herself, I sit in the seat closest to her, Emma next to me and a nurse in the final chair. The Dr starts talking, I listen. Words, come out, things are said. The look on her face told me all the news I needed to know before I heard anything pass her lips. Watching the words forming I can almost see them coming towards me “it’s…………….not……………an………….easy…………cancer…………all………….we…………can…………….offer…………..is……..palliative…………care……….and…………chemotherapy” {palliative f*cking care!!!! Is she telling me I’m dying, she is, she’s telling me I’m dying isn’t she? All they can do is make me comfortable as I dwindle away as a cancer ridden 36 year old……….how is this happening?} I feel my lungs expand (did I breathe?) {while I have breath in me then I can fight this. How long will that be for? Don’t think that Adam, do not let that enter your head}. Staring at the light switch more words are said, Emma asks the questions, the doctor answers them, I just stare. My arms go hot, my neck sweats, “do you need anything?” {a f*cking cure would be nice…….but that isn’t coming is it? Unless it’s all an elaborate hidden camera show} “some water would be good”.
The doctor and Emma talk, paper is passed over, some writing is done. I speak. “I don’t want to know anything about time until after my first chemotherapy treatment, we don’t know how it’ll respond” “ok, if your sure” {if I’m sure, that’s the worst thing anyone can tell you, I’ve just been told the second worst, f*ck getting both in one day, you need to spread that out or just put me down now like a dog}. “Any other questions?” The Dr asks……I turn to Emma, already seeing her watery eyes, it’s my turn to answer “no, not that I can think of, but I’m not really thinking”.
Standing we leave, Emma starts to cry, I don’t know what to do. I feel water leave my eyes and run down my cheek {stay strong Adam}. I reach out and hold her hand (if I hug her they’ll be 2 grown adults falling to the floor in a heap an the ward sobbing), the nurse who was with us wraps her arms around her. We are shown to a side room to compose ourselves. The nurses sits with us along with my stoma nurse. We talk, again about what I cannot remember. Small talk, big talk, it matters not now all that matters is getting started.
We sit in silence on the journey home, each of us digesting the news. The children are out at the park, how can we break this to them? What would your say? How will a 6 year old take the news? How will a 4 year old take the news? Will the 16 month old even remember me?
We walk into the house, I make my way to the sofa, pull out the leg rest Emma sits next to me and we hug. We cry.
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One of the 2400 under 50’s diagnosed with bowel cancer 