I’ve been a bit stumped as to what to write about how we feel after getting some of Sam’s results back.
The list so far;
B12 deficiency
Iron deficiency
Folate deficiency
High white blood count
(An allergy to B12 injections) trust him!
H Pylori
Crohn’s disease
Bacterial gastroenteritis
And now, as of yesterday;
Peptic Ulcer disease
Gall stones.
I said to my friend, who’s a GP, that Sam was “putrid inside”.
She said “oh Suzanne, don’t say that”
I ask you though, where is the lie? Am I wrong?
This kid!! I am so heartbroken for him. He’s been through so much already.
At 13 he was diagnosed with cancer, Nasopharyngeal Carcinoma.
Google it if you fancy. It’s incredibly rare in the west. It’s beyond rare in the UK.
It’s an inoperable cancer in the nasopharynx. Little pockets in the skull, like sinuses.
When Sam was in treatment he was the only child in the UK at the time being treated for it.
There had been cases before, and I’m sure cases after, but during his treatment he was the only one.
Childhood cancer is rare enough. But his was rare Of the rare.
During our stays in the hospital, him being the only one became a blessing and a curse.
I found that a lot of the parents of children with a particular cancer formed friendships, understandably so. Birds of a feather and all that.
The swapping of information and support is part of the process inside hospitals for the parents.
But for us there were no others to swap stories with. Therefore during our stay inside the hospital we spoke to very few people.
We did make friends with two patients and their families though.
And 12 years on they are doing really well, still alive and kicking. They have both been lucky to survive (both children had bone cancer. A nasty, brutal, devilish disease that claims far too many lives). And we have been lucky enough to watch them grow and mature into wonderful adults.
The other friend’s those children and families made weren’t always so lucky. I know they have been to more children’s funerals than anyone should ever have to endure.
We witnessed so many tragic passings during our time on that ward.
Cancer is evil. It’s pure evil. It’s just down to good luck to survive. There’s no rhyme or reason to it.
I really felt after going through the treatment for cancer Sam would have had his quota of bad luck (I appreciate he’s had the best luck to survive).
But life had other ideas for him.
He’s 26 next week and he’s been through so much. Yet still he stands…exhausted and wiped out but still smiling and laughing. Few things could diminish his sense of humour and his zest for life.
He went off volunteer sailing for a week for the Ellen MacArthur Sailing Trust, while he went through the agonising wait for this biopsy results. He lives life, fully, properly, with passion and zest - cancer survivors often do.
We found out during Sam’s recent appointment with the specialist, that the Crohn’s disease may well have been triggered by the ruptured appendicitis he had last year.
The surgeon says there is a possibility of a link but not enough research studies have been done to prove it.
But the fact that he was absolutely fine up until he had a ruptured appendix rather leads me to believe it was the cause or at least part there of.
*We have no other people with Crohn’s in the family.
*He was fine until after the appendicitis
*They didn’t give him any antibiotics at the time of the rupture or operation.
(I assumed he’d be on IV antibiotics for a few days and then be sent home with tablets. I’m not a doctor, (going to a medical conference is no qualification for medicine apparently. Hahaha) but for me it was common sense, that a rupture of pus into the bowel would mean follow up treatment of antibiotics?
It was last year, and things were all befuddled with covid backlogs (they still are), so they kicked him out the same day as the op, and sent him on his way to recover at home.
Well, that’s worked out really well hasn’t it.
Ffs.
We can’t prove any link, but I feel it’s extremely likely. I feel so sad that Sam now has to deal with a life long disease.
On top of everything else he has to deal with the collateral damage caused because of the treatment he had for cancer at 13, he now has all this.
Yes, I know we are very very lucky. I know that, Please don’t think I don’t. I’m aware of so many families that haven’t had the good fortune to still be alive.
It’s just I can’t help but feel sorry for him that he has yet more to deal with. I feel guilty about feeling sad about it. But that’s my boy, he deserves to live stress free.
I think a lot of the stuff he’s going through can be sorted and fixed. The gut bugs and deficiencies should be resolved in time.
The burden will lessen once he’s got them sorted.
Tackling the Crohn’s will take some adjustment. Sam loves junk food.
The Fodmap diet they’ve put him on isn’t a cause of great joy for him.
Sam, Milly and Zak came up to stay at the weekend and I did my best to cook some nice meals that are Fodmap friendly.
It’s just going to take a lot of planning and care.
Now, more than ever I am so keen and focused on getting people to have colonoscopies.
They are the only test in the world that can actually prevent cancer.
They find a polyp, they remove it there and then and that polyp can’t come back to haunt you.
Ben has had bowel issues for years. He was due his 5 yearly colonoscopy, so we paid for Ben to have it on Monday.
There was no way we were prepared to wait for him to be seen on the NHS, free though it may be, quick it is not.
Probably the best £1750 we’ve ever spent. He got a clean bill of health. No need to repeat it for 5 years.
(He has a lactose intolerance that he treats as needed with Lactaid. My dear friend in India told me about the stuff, and it’s transformed Ben’s life)
I’m trying to persuade Chris to have one. He’s not keen (I mean, who would be? I’m dreading mine next year, but it’s a necessary evil), I think it’s so important. I might treat him to it for Christmas. :)
This whole health scare has really brought up a lot of memories for us all. It’s been a challenging time all round.
Onwards and upwards ~ always.
*******
We had such a lovely time with Sam, Milly and Zak over the long weekend. They came up on Thursday evening and stayed till Monday afternoon. Heaven, absolute heaven.
On Friday morning Sam went off to work at the head office of the company he works for. Milly went to set up for a craft stall she had at a local country show she was selling her wares at…
…and Zak and I had our first ever solo day together!
I had a blast!! I hope Zak did too, my heart was so happy. He is such a joy.
I decided to take him for a walk to our local country park. It has the most incredible play equipment and it’s not too far to walk from our house.
While we were there, I decided that to save going back by car, we’d walk from the play park to Tesco nearby.
I stocked up of Fodmap delights and meals for us all.
And then realised that I’d need to carry it home again after.
He’s 3, I made a 3 year old walk over 5 miles to the park and shops…and back.
We had fun on all the play equipment at the park but my God, he must have been beyond exhausted. I know I was, I went to bed by 9.
Poor little thing. He was such a star. Nothing short of incredible. I’m biased of course but honestly he’s amazing.
He’s not only beautiful, with his blonde hair and blue eyes and little angelic face. He has the most extraordinary sense of humour and kindness.
…and an amazing photographer!!
I asked him to take some photos for my blog for me, and he exceeded all expectations:)
He took some cracking photos over the weekend but by far my favourite is the one above!
I hadn’t realised how wobbly this play equipment was. Zak captured my surprise at said wobbly equipment beautifully! :)
We bought Zak the most gorgeous play equipment for our garden. A fantastic swing and slide set. I bought the biggest slide I could find. My assumption was I’d be able to play on it but it has a weight limit that I’m far in excess of so I can’t use it.
But the slide at the playground was metal and strong looking. And as there was no one but us there I very much enjoyed using it.
I love the drama of this close up. He has such an artistic eye.
And at least he waited until I was in position for this shot!! :)
We were both exhausted by our adventure. But he got home and wanted to play in the sandpit and on the play equipment here.
I sat in the sun, watching him, I was half dead, how could he even move let alone run round and play, the energy they contain is incredible.
We had a lovely day Saturday. We took Sam and Zak shopping whilst Milly was at the craft fair.
We got goodies for everyone. Then headed over to the county show where Milly had a stall.
Photo by Zak (age 3 and a half).
Top from M&S, Jumper from DKNY, Leggings from Next, Shoes and Bag from Gucci
If I’d known they sell giant jam and cream donuts at county shows I’d have been there at opening time!! :)
Milly owns an online shop, but also had a stall selling eco friendly homewares.
I always stock up when I go to one of the markets she’s selling at.
Find them on Instagram at Boundless Interiors.
It was wonderful to have such a busy full house over the weekend. I think it was lovely for Zak and our house guest, Danil to have some small person company too.
They played together beautifully. Both boys are little angels. We’re very lucky.
Photo by Zak.
Jumper from TK Maxx, Leggings from River Island, Gilet from Belstaff, Bag and shoes from Gucci
On Sunday I wanted to visit a stately home with Sam and Zak, whilst Milly did her second day at the fair.
But I was outvoted and we ended up at the slots at Clacton pier. Chris takes me to all the best places…this is not one of them! Hahahahah
Call me a snob if you must but it’s not my favourite place on earth.
But I decided to get into the swing of it and I wiped the floor with Sam, Chris, and Zak at the games…yes, I thrashed a 3 year old at air hockey.
I usually have zero interest in playing at an amusement arcade. But on this occasion I played to win.
I annihilated them!
It was fantastic fun. I can only imagine the testosterone I’ve been taking as part of my HRT has done wonders for my competitiveness.
I’m literally drug cheating air hockey and splat a clown! Hahaha
Totally worth it though to see their indignation at my achievements! :)
By the way, if you play hard and aggressively, no one in the family will play against you again. Lesson learned. ;)
I think my favourite thing at the pier was the vending machine of PPE and anti bac!
Everyone’s a winner!
I’ve been so lucky with my hernias lately. I often get issues after exertion and I fully expected a backlash from this weekend.
I can’t usually lift anything too heavy. So I was surprised how well I feel.
I’ve been walking 8 miles a week with Kim with no niggles from my hernias - perhaps it’s been building strength?
I carried Zak part way to the park and the heavy shopping bags two and a half miles home from Tesco, with no problem at all.
I can only imagine they were listening last week when I asked a few of the top colorectal surgeons if I should get them fixed.
The general feeling is that yes, I should.
But I just think it might be best to wait till everything is more settled with Sam before I go adding to the family stress levels.
I have lost a lot of family and friends to cancer, your eyes would water at the amount. And for the most part not people we met through having cancer, but people we already knew and loved. I hate cancer with a passion. It’s an absolute c***.
Please please please, I beg you. Don’t wait if you think something is wrong. Please go and get it checked out.
Keep well - keep alert to health issues - and book a colonoscopy, a smear test and anything else you can think of as a precaution. Xx
*you can buy bowel cancer test kits online. Pooing in a tiny pot might just save a life. Xx