The University List – a parent’s guide to what to pack for Uni

When my son told me he wanted to go to University at the beginning of this year, it threw us all into a bit of a panic as he had always said he didn’t want to go! We were miles behind in planning, hadn’t done any of the Uni open days and as neither Timm or I went to university, we didn’t have a clue!

We buckled down, got some visits done and he filled in all the applications. We went through so many uni websites trying to decided which would suit him best and eventually decided on three options.

sam cleasby parent blogger leaving for university

He did well at college and got into his first option and so we started to plan for the big move. He decided he didn’t want to go into halls. His friend was starting his second year and they decided to get a house together. After much searching, and house visits, they decided on one and finalised plans to live there. Student financing was sorted and he was well on his way!

And then I started to think about all the stuff he was going to need and felt totally overwhelmed. I am very grateful for my manager Debbie who sent me her blog post of a parent’s check list for uni, check it out here. Through her list and a few bits of my own, here is my Uni Packing list for parents.

Bedroom

  • Bedding – Mattress protector, duvet, pillows, bedding
  • Lamp and bulb
  • Clothes, shoes, coats, underwear
  • Coathangers
  • Things to make it their own – pictures, teddies etc
  • Dirty washing bag
  • TV, Games console
  • Chargers and extension cables

Kitchen

  • Plates, cups, bowls
  • Cutlery
  • Utensils
  • Chopping board
  • Scissors
  • Pots and pans
  • Toaster
  • Kettle
  • Microwave
  • Sandwich toaster
  • Tea towels

Bathroom

  • Towels
  • Toiletries – shampoo, conditioner, shower gel, soap
  • Razors and shaving foam?
  • Toilet brush
  • Toilet roll

Cleaning

  • Washing powder/pods
  • Toilet cleaner
  • Washing up liquid and sponges
  • Kitchen rolls
  • Bin bags
  • Shopping bags

Food

  • Tinned fruit/veg
  • Sauces
  • Pasta
  • Rice
  • Tomato ketchup/salad cream/mayo
  • Tinned beans and tomotoes
  • Salt and Pepper
  • Cereals
  • Noodles

Etc

  • Paracetamols/Ibuprofen
  • Stationery, paper, laptop
  • Cookbook or recipes from you
  • Noticeboard
  • Diary/calendar
  • Alarm clock

To do

  • Register to vote
  • Register with a doctor
  • Register with a dentist
  • Have bank accounts
  • Sort budgeting
  • Sort bills etc
  • Are they up to date with all vaccinations?
  • Tell them you love them and give them a big hug
  • Make sure their flatmate/roommate has your number in case of emergency

I’m sure this isn’t a full and complete list but it is everything I can think of right now. If you can think of anything else, then do let me know!

Good luck!
Sam xx

Roots and Wings – when your child goes off to University

Someone said to me this year “All we can do as parents is give our children roots and wings”. It really struck me and this week as my eldest child left home for University it felt very apt.

I talk about parenting quite a bit here, and it has been interesting to read back how I have felt at different times of our lives. You can read my post about not having a clue how to be a parent here. And my letter to all the imperfect mothers here.

Traveling the world

I have three teenage children aged 14, 16 and 18. It is such a shift as a mother to move into the teen years. The things that they need you for change as does your whole relationship. Over the summer, my 18 year old went to New York for 3 weeks on holiday and my 16 year old spent two months in Australia with my sister and so it has been a very odd year!

When the kids starting talking about going to travel, I was all for it. I truly believe that travel broadens the mind, the spirit and is a positive thing. When the time actually came round, I felt a lot more nervous about seeing my bambinos go off into the world. I was scared, worried and tearful. This is when I was told about roots and wings.

Dalai Lama quote roots and wings

The Dalai Lama said “Give the ones you love wings to fly, roots to come back to and reasons to stay”

I’m proud that my kids have the confidence to fly the nest and explore the world. I know they will always have my roots to head back to if they need me and they know that I love them and I am always their biggest fan.

I have really had to remember this quote this week as my eldest has left home and moved to Leeds to start university! He has moved into a house with his friend, he has a new job and will start his degree course in a couple of weeks.

when your child is leaving for university

The move to university

I have been collecting things for the move for months. Pots and pans, tins and packets, bedding etc. I have made him a little notebook filled with his favourite recipes from home and hints and tips for living alone.

We drove him over to his new home and helped him unpack. My heart was in my chest but the last thing I wanted was to make this exciting day about me. So I held in the tears and smiled as we unpacked with him and got him settled.

Then the time came to drive home. I hugged him tight, told him I loved him and we are always here for him and drove away.

I cried pretty much the whole way home!!!

Honestly, I’m not sad. It’s weird as I am insanely proud of him and I am so excited. For a lad who really disliked school I am shocked that he chose to go to Uni. But I am really looking forward to seeing him grow, mature and have a whole lot of fun.

Time to fly

I suppose the tears are because of change. This is it, the time where he is no longer my baby. Of course he will always be my child. But even if he chooses to come and live back at home in three years, it will never again be the same mother/child relationship. He will be 19 in a week! Our relationship has now shifted and it is scary. I hope I have given him enough love, wisdom, guidance and care and he will fly now.

We tend to relate events back to ourself and I left home at 14, sleeping on peoples couches. I was basically homeless till I was 19. Though I did move back home once or twice, it was years of living with family members or on friends couches. So my experience of leaving home is tied up in fear, pain and loneliness. I have to remember that it’s not my kids experience. Charlie is going off into the world with all our love and support and he cannot wait!

Sam cleasby parent blogger child leaving for university

So roots and wings, I keep reminding myself that leaving home is a part of growing up. I have done this part of my job as a mum. I will always be mum. It’s just a change in what he needs from me now.

You never know the last time

I was told years ago “you never know the last time”. The last time they will sleep in your bed, the last time they will hold your hand as they cross the road, the last time they will need you to chase away the monsters under the bed. Treasure it. The past 19 years have gone in the blink of an eye.

Empty nest, child leaving for university so upset crying

For more information about your kid heading off to university, you might like the Complete University Guide here.

Peace and love,

Sam xx

Everyday racism

Today is a bit of a different post for me, I want to talk a bit about racism.

Let me introduce myself

My name is Sam Cleasby and I am a British woman and my heritage on my mother’s side is Mizo.

Mizoram is an eastern state of India. “Mizoram is one of the states of Northeast India, with Aizawl as its capital city. The name is derived from Mi (people), Zo (lofty place, such as a hill) and Ram (land), and thus Mizoram implies “land of the hill people”. Like several other northeastern states of India, Mizoram was previously part of Assam until 1972, when it was carved out as a Union Territory. It became the 23rd state of India, a step above Union Territory, on 20 February 1987, with Fifty-Third Amendment of Indian Constitution,1986.”

I visited India a couple of years ago and blogged about it, you can read about India with an ostomy bag here!

sam cleasby ostomy travel blogger india ileostomy ibd

My family history is long, varied and something I am proud of.  Yet because my skin is lighter than some, and I look less like my mum and nan than my dad I live in a weird societal time where people unaware of my heritage voice inappropriate and racist comments in my presence and where I feel a responsibility to counteract those thoughts.

Yet so often I have been told when voicing these opinions that I have ‘a chip on my shoulder’.

Hidden racism

There are the overt, hate filled, angry red faced racists in this world. Generally you can see them a mile off and we all tend to avoid them. Most people arent blatant in their racism.

But it’s the quiet ones that concern me. The “I’m not racist buts”, the inappropriate racially motivated jokes ones, the “so WHERE are you from” ones, the slipping the odd word into conversation ones. It’s the everyday racism, the micro aggressions, the daily reminders that you aren’t white.

These are the people who distress me the most as sometimes it’s really hard to recognise them, and sometimes you get totally surprised that it is someone you wouldn’t expect.

Sam Cleasby Timm Cleasby

A while back, someone was chatting to my husband Timm and he used the word ‘p*ki’ . He was totally taken aback and shocked and walked away from the conversation, he was upset and asked “what should I have said to him?”

A friend had a similar situation where someone used a racist term in front of them. They were upset and uncomfortable but didnt know what to say.

People have said to my husband “ohhh what’s it like having an Indian wife? I bet you get some great curries!” These arent hate filled bigots, they aren’t trying to offend, but honestly being othered like this is very wearing.

What do you say?

And I think this is a problem. It often can feel like you’re making a big deal, causing a fuss if you call people out on inappropriate language. It can feel embarrassing and upsetting.

But try being the brown person on the receiving end of racism constantly. At least once a week, someone comments on my “tan”. 

So often I’m asked “where are you from?”

“Sheffield” I respond. “No but where are you FROM?”

“Ermmm I grew up on Norfolk Park”

“Ok, where’s your mum and dad from?”

“Ohhhh sorry I get it, you’re asking me why I’m not white!”

It feels very devisive and othering. And I know I have much more privilege than other BAME people who face far, far worse than I do.

As someone who can “pass” for white (and I do hate that term”, I’m privy to conversations that people whose skin is darker than mine probably dont hear. And its depressing.

sam Cleasby Mizo British blogger Sheffield - everyday racism

Embarrassment

For years, I felt embarrassed in these situations. Like I would be the one to ruin the dinner party by questioning the guy pushing me on where exactly I’m from. Or spoiling the social event by calling out someone dropping a P-bomb. 

I felt like I was causing a scene to explain to the woman at work that telling me she was having a “chinky” that night was offensive. 

I felt like I was embarrassing someone who assumed I would like a spicy meal because of ‘you know’ and waving a hand over me, presumably referring to my skin colour and background.

But I’m done with feeling embarrassed by this. It’s time I voiced my feelings. The person using these words should be the one to be embarrassed not me.

There is so much more I could write about on this topic, especially in the political climate of the world at the moment. But for now I’d just like to say that we all need to feel less intimidated in calling out the bullshit around us. 

It’s ok to say “I find that term inappropriate, upsetting and offensive.” 

It is ok to walk away from a conversation that you find wrong.

It’s ok to be upset by racism and it’s ok to talk about it.

And this is something I need to remind myself of.

✌🏽 & ❤

Sam x 

Ostomy bags and Brexit

Everything seems so unknown and uncertain at the moment. With Brexit looming, I have seen a few people worrying about whether there could be shortage or delays in delivery of ostomy bags.

I asked the question on twitter and here are the responses I got from Respond, Coloplast Charter and Convetec.

If you are concerned, then speak to your ostomy supply company and as always be ahead of your needs in ordering.

Are you concerned about your illness and the effects of Brexit? Let me know

Sam xx

It’s my 6 year no coloniversary! Happy birthday ileostomy!

Six years ago today, I had my colon removed and my first ileostomy formed! And what a ride it has been since then!!

You can read that first update Timm made after the surgery here, it is weird to read back. We were both so naïve and knew so little compared to now!

ulcerative colitis surgery

What has changed? The 4th ileostomy!

So much has happened since then. I have had 7 more surgeries, a jpouch, a jpouch removed, multiple hernias, fatigue, joint pain, months in hospital, my butt removed and 3 more ileostomies!! I have also gained so much, I started working for Scope and presenting for the BBC. So Bad Ass reached well over 3 MILLION views and had many amazing opportunities. I have worked with Crohns and Colitis Uk on their campaigns. It was amazing to be named as one of the 100 most influential disabled people in the UK. I have spoken at events all over Europe and the UK and met some wonderful people!

Some things haven’t been great. I never knew that first surgery would set me off on a path to 7 more in 6 years. Sometimes, it has felt too much to bear and on more than one occasion I have wondered ‘why me?’ I have seen people I thought loved me leave me. I have felt more alone than ever in my life. Like the burden of my illness was too much for those around me.

Through it all though, the ileostomy bag really did give me a life back. It has given me back control and allowed me to travel the world and actually plan things in with my family. If I could do it again, would I? Well hindsight is a wonderful thing. Maybe if I knew the pain I would face over and over again, I would have been too afraid to go ahead with the surgery. But maybe the outcome would have been very different if I hadn’t had my colon removed. Maybe I wouldn’t still be here, or maybe I would be here but still sat on the toilet 20 times a day in tears?

What advice would you give yourself?

None of us have a crystal ball and we have to roll with the punches and do what feels right at the time. I’m sure I have made mistakes and could have done things differently but today I was thinking about what advice I would give myself back 6 years ago. So here it goes:

It’s ok to be scared/sad/angry. I think 6 years ago I felt like I had to feel grateful for just being alive and that any ‘negative’ feelings were me letting myself and others down. This is rubbish. All emotions are necessary and none should be shunned. You body and your life will be changing a lot and you need to process all these changes. Allow yourself the time to feel what you are feeling.

Speak up – talk to the people closest to you about what is going on physically and mentally. Tell them how you feel and what you need.

There is no right way to ‘cope’ – What works for one person won’t work for the next. Listen to your body, listen to your heart.

Don’t do too much too soon. I know how hard it is to rest up, but you have been through a HUGE surgery! You need to give your body so much time to heal. I have always done too much too soon and I have lived to regret it.

You are a warrior. You have come through a tough surgery and your body looks and feels very different, you have a hard path in front of you, but you are a warrior and you can do this!

Think positively. I know, I know, you just rolled your eyes!! But really, it is easy to slip into negative thinking. There will be positives in your life, no matter how small, and trying to find those silver linings in your day can help so much.

If you could go back in time and give yourself advice back when you were diagnosed or to a point of your illness where it changed, what would it be? If you have an ileostomy, what advice would you have wanted to hear?

Sam xx

Body painting

Last year I got one of those odd phonecalls, they are always the best ones, asking if I would like to have my body painted for BBC Radio Sheffield. And of course I said yes!

It was a party for the Naked Podcast and after I appeared as their guest, I was painted live during the show by the brilliant Julia from Julia Arts Body Painting.

We decided on an Egyptian theme around the scarab beetle. The Scarab is also known as the Dung beetle so it seemed fitting but they also symbolized the restoration of life and we thought that was a nice touch after so much illness and surgeries for me.

body painting sheffield

body paint sheffield ileostomybody paint sheffield woman positivity ileostomy

Julia was great and gave me plenty of rest breaks and kept asking if I was ok, she put me completely at ease which wasn’t easy being half naked in a room full of people whilst having someone paint your boobs!

I waited till it was finished to see the final artwork and I was blown away.  It was an odd feeling but I felt so empowered, I felt like a queen! I got quite emotional to see my body that I am so used to seeing scarred, sore and broken to be displayed as this beautiful, living, moving, celebration of who I am!

It was such a positive experience and I can’t thank Julia, Kat, Jen and Paulette enough for giving me such a wonderful feeling of power and celebration.

Sam x

Telogen Effluvium – Hair loss after surgery

I have had 8 surgeries related to IBD over the past six years and something that no one told me about was hair loss. Hair loss after surgery is known as Telogen Effluvium and today’s post is all about the T.E. I wrote a little about this in 2016, you can see that post here.

Hair loss after surgery

Usually around 3 months after surgery, I start to find my hair falling out. Firstly, it is more than usual in a hair brush. Then when I wash my hair I find lots more than usual coming out. I then start to find it on my pillows, coats, desk, everywhere! It is really distressing and I was shocked to find out how common it is. And how little people are told about Telogen Effluvium. This is when the stress placed on your body after surgery has interrupted the growth cycle of your hair.

As I always say, this blog is not meant to replace any medical advice and if you suddenly begin to lose your hair unexpectedly, then always speak to a medical professional. There are many other reasons why you could be going through hair loss and it’s important to rule out anything more serious.

red hair sam cleasby

I have had so many different hair cuts, styles and colours, it’s a running joke that people never recognise me as I can look so different. I have naturally very thick, straight, dark hair but I enjoy changing it up.

Shaving it off

But hair loss wasn’t something I thought about. So when it first thinned out and was coming away by the handful, I was terrified. But as my hair is so thick, others said that couldn’t tell. I was lucky that it thinned all over as opposed to coming out in chunks.

Last year, I found my hair getting very thin and coming out all over the place and so I decided to shave the lot off! Probably a bit drastic for some, but I have had a shaved head a few times and loved it, so off it went!

Sam Cleasby ostomy bag stopping smoking hernia telogen effluvium

Why Does it Happen?

The following information is from the Hair Sentinel website. and from The British Association of Dermatologists

During times of stress, the body will send its precious resources (vitamins, minerals etc) to the areas they are needed the most. This means that important nutrients are diverted away from the hair follicles and towards other parts of the body that need them more (for example, when healing after surgery). The name of the subsequent hair loss is telogen effluvium.

Telogen Effluvium Explained

There are three stages of hair growth:

  • anagen
  • catagen and
  • telogen

The anagen phase is the ‘growth’ phase, when the hair bulb forms in the follicle and grows into an actual ‘strand’ of hair.
This phase lasts anywhere from 2 to 8 years.

The catagen stage is the ‘transition’ stage. In this time, the hair stops growing and moves up in the hair follicle.
This stage lasts for about 10 days.

The telogen stage is the ‘resting’ phase, and this is where the hair stays until it’s shed.
This stage lasts for around 3 months.

When the body undergoes the physical stress of surgery, it enters the ‘telogen’ stage too soon, and is shed at the end of the stage, 3 months later.

What causes telogen effluvium?

What causes telogen effluvium

Increased hair shedding in telogen effluvium occurs due to a disturbance of the normal hair cycle.

Common triggers of telogen effluvium include childbirth, severe trauma or illness, a stressful or major life event (such as losing a loved one), marked weight loss and extreme dieting, a severe skin problem affecting the scalp, a new medication or withdrawal of a hormone treatment. No cause is found in around a third of people diagnosed with telogen effluvium.  

Will the Hair Loss Stop?

Telogen effluvium usually resolves completely without any intervention as the normal length of telogen is approximately 100 days (3 to 6 months) after which period the hair starts growing again (anagen phase). However, depending on the length of the hair, it may take many months for the overall hair volume to gradually return to normal. Telogen effluvium can return, especially if the underlying cause is not treated or recurs, and would be called chronic telogen effluvium if lasting more than 6 months.

It’s good to know that it’s extremely rare for hair loss after surgery to result in baldness. There is normally no treatment for telogen effluvium as the hair will start growing back once the trigger is removed. Medication does not speed up this process.

Where I’m at now

So as my hair started to grow back last year, I then had another surgery. Though I didn’t notice much hair loss after this one, I felt like my hair was getting back to some health. Weirdly, it has grown back much curlier than before though!! But this past week as I am now 3 months post op again, I am noticing more and more hair falling out in the shower. So I think it is all starting over again.

Sam cleasby

The emotions around hair loss

We talked about hair loss over on the So Bad Ass facebook page so you can head over to read other people’s experiences.

I know that for some, hair loss can be absolutely devastating. Just another kick in the teeth after a long journey of illness. For many women, hair feels like a big part of their personality and femininity.

Despite having shaved my head several times, the hair loss does really bother me. It is the lack of control of it all. It is scary to wash your hair and pull your hand away and see a big handful of hair there. As my hair is thick, others say they don’t notice and so it can feel a little like I am being dramatic when I say I feel upset by it. But whether anyone else sees it or not, it still is very real to me.

Have you been through hair loss, either through Telogen Effluvium or for another reason? How did you feel? What did you do to manage the situation? I’d love to hear your experience.

Sam xx

Glastonbury fun

I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.

I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.

Sam and Timm Cleasby at Glastonbury festival

We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.

Glastonbury flags

Glastonbury

If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.

she wee at festivals ileostomy bags

For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!

Glastonbury with a teenager

I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!

Camping with an ileostomy, festivals with a stoma chronic illness and festivals

It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.

Your festival, your way

The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.

The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.

Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.

It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.

relaxing at a festival chronic illness

The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.

Here’s to Glastonbury 2020!

Sam xx

My Glastonbury hero – there are still good people in the world

Let me tell you a story about how people are wonderful. A modern Glastonbury tale of social media and kindness.

In April this year, I had my 8th surgery in 5 years. We had Glastonbury tickets and I thought there was no chance of making it, I didn’t think I would be well enough to go.

But I did make it!! Thanks to the accessibility team for sorting me toilet and access route passes and my husband for tons of patience and support. If you are attending a festival, do check on their website for access information and get in touch with their team to discuss your needs. You can find Glastonbury’s Access information here. Also check out Attitude is Everything. Attitude is Everything improves Deaf and disabled people’s access to live music.

Anyway, I got there to the hottest glasto in a long time and my stoma started playing up. The stoma bags were peeling off and I went through 16 in 4 days. I think it was a mix of the heat, sweating, my still lumpy and uneven tummy and unfamiliar food.

Stoma problems

Usually I change my ileostomy bag every 2 or 3 days, so to be safe I packed 18 bags so I’d have loads spare. But by Saturday at Glastonbury I only had 2 bags left and my bag keeps leaking. I enter panic mode, how on earth have I gone through so many? Why didn’t I pack even more? Was I going to have to go home

We went to the medical tent but they didn’t have any ostomy bags. They suggested calling my supplier or going offsite to the nearest hospital and asking them. I called my supplier but they were closed till Monday. The thought of getting offsite and out to a hospital and then getting back seemed too much to bear.

So I decided to tweet my plight with the hashtag #glastomadrama and got 100s of retweets! Maybe just maybe, there will be someone here who has a few bags to spare? I’m panicking, this could be festival over. To get so far to get here then have to leave?! Gutted!

Then I got a phone call from BBC Sheffield – a woman has seen my tweet and called her dad. When he couldn’t get in touch with me, hed seen I present on the BBC and called them to give me his number!

My hero

He was at Glasto and has some spare ostomy bags! I can’t believe it, a knight in stoma bag armour!! We navigate a meet up, which anyone who has been to Glastonbury knows can take a long time and be a nightmare. We exchange text messages saying “I’m wearing a shirt with tigers on it and I’m outside the Caberet tent” and “I’m an old man wearing a flowery hat”!! Eventually we find eachother and he’s happy to give me the bags. But there’s a problem, the bags are in his campsite the other end of Glasto, maybe an hour or so walk. I feel a bit sick, I just don’t think I can manage the walk there and back.

So we went to the Welfare Site and asked for help! They called the A Team who came to our rescue and drove us both to his campervan to redeem the ostomy bags and saving my festival!!!!

Glastonbury A team welfare team disabled accessibility

Andrew spent a good few hours of his Glasto to help out a perfect stranger. He could have ignored the tweet, he could have realised I couldn’t manage the walk &not want to wait for the a team to drive us, he could have turned his head and pretended not to notice. He didn’t.

If not you, then who?

This is Andrew. He redeemed my faith in humans and saved my festival. He said to me ‘if you’re able to help someone, then help them, if not you, then who. If not now, then when?’

Glastodad glastonbury with an ostomy bag

Thank you Andrew, you’re a true gent!

Sam xx

My 6 week post surgery check up

This morning, I headed back to hospital for my 6 week post surgery check up. I had two hernias fixed in my last surgery, a parastomal hernia resolved, my stoma resited and abdominal reconstruction. It was a big operation and was my 8th surgery since 2013.

6 week post surgery check up

I’d been warned that it was going to be a very tough recovery. That I would need 2-3 months off work and to prepare for a lot of pain. Its been a tough 7 weeks but I am really pleased to say that everything has gone well and my recovery is right on track! I am still swollen and have some hard lumps of scarring but they are happy with the results.

The check up was with one of the surgeon’s team. The doctor examined my stomach and talked through all of my concerns. I felt very nervous that he was going to find some complications but he said I was doing better than expected. I am feeling really relieved. Thanks to Timm for driving me and being there . We talked through all the questions I wanted to ask before so that he could remind me if I forgot once I was in with the doc. If you don’t have someone with you at your appointment, I suggest writing a list as it’s easy to forget!

Timm and Sam Cleasby 6 week post surgery check up Sheffield northern general hospital

Back to work

I am signed off work till the end of June and they’ve suggested a phased return to work from July. I’m both nervous and excited about this. I work for the disability charity Scope and they have been so supportive to me during this time. They haven’t put any pressure on me and have supported me in taking the time I need to recover.

I also present a radio show on BBC Radio Sheffield on a Saturday morning from 10-12 called Nowt So Strange As Folk. I returned to that a couple of weeks ago thanks to Timm being my chauffeur. It’s only 2 hours a week but it’s mentally tiring. I have been coming home on a Saturday and spending the rest of the day in bed!

Exercise after surgery

We have discussed my recovery moving forward and at the 6 week post surgery check up. The doctor said they were happy for me to start an exercise regime. I am joining the gym and will be seeing a personal trainer as part of my physiotherapy.

I stopped smoking in February this year in preparation for the surgery and I’m happily now a non smoker. This is so important as there’s a link between smoking and recurrent hernias.

I am also aiming to lose weight and get much stronger. I’m currently classed as overweight and this can mean I’m more likely to get another hernia. It’s been an awful 6 years of recurrent hernias and so I need to do everything I can to reduce my risks. I’ll blog more about the exercises Ill be doing after I see my PT in July.

Mental health

I have been quite up and down mentally, it’s really tough to be stuck in bed unable to be independent. And even more so when it’s the 8th time in 6 years! I have slipped into depression before after surgery and so it’s at the forefront of my mind to take care of my mental health.

One thing that has been difficult is that I am reacting to certain things that make me feel right back in that hospital bed. The other night I was flipping through the TV channels and I happened upon a real life hospital show. .I paused and watched a patient in a bed writhing in pain. The doctors and nurses were rushing about, the machines bleeping, and I felt my chest tighten. I felt jittery and panicked and a fear washed over me. I was sweating and struggling to breathe.

A similar thing happened the other night. My ileostomy bag leaked in bed. It was only a slight leak onto my skin, I caught it before it went on my sheets. So I cleaned myself up and changed my bag and then saw a air freshner spray that had been in my hospital bag. I sprayed a couple of squirts to cover any poopy smells in my room. That smell of the spray immediately took me back to being in the hospital bed and I went into panic mode again. After talking to a friend I recognise that certain sights, sounds and smells are triggering me. This is common with people suffering from PTSD (Post Traumatic Stress Disorder).

So though I am feeling positive for the future, I am aware that my mental health has been affected by all of this. I have started back on my antidepressants and I am really focussed on looking after myself. From meditation to self care, planning to spend time and energy on myself is really important.

The future

How does the future look for me? I don’t know. I have to hope that it will be surgery and complication free. The thought of going through all this again and ending back in the same place is just too much to bear. I don’t think I could cope with more surgery and to be honest I don’t think they would consider another hernia repair as I have had so many now and my abdomen is such a mess.

But I cannot think about the worst as it would make me spiral. I need to think positively and plan for success. My goal is that by next year I will be strong enough to learn how to kayak. I want to spend the summer camping with Timm in our campervan, hiking, wild swimming and kayaking. It is a dream right now, but I am going to put all my effort into building as much core strength and muscle as I can. And all I can do is to try my best.

Peace and love

Sam x