Going home

Going home after such a big operation was for me bittersweet.  Don’t get me wrong,   I really wanted to get home and begin my new life.  But at the same time it meant that “all of this” became scarily real.  When I say “all of this” I guess I mean my new body and all that comes with it.

When you’re in hospital a nurse or health care assistant is just around the corner.  You can ask for their help if you’re facing difficulties changing your bag.  A doctor will come and see you twice a day to see how you’re going and there are even dieticians who can help you understand and choose the right kind of food that you’re  gut will be able to tolerate.  When you get home all of a sudden you can’t really ask for help because friends probably won’t have changed a stoma bag before and they will know as much as you when it comes to diet and stomas.

Of course, the hospital isn’t going to send you home if they don’t feel you are ready ; the Marsden unlike most hospitals is not under such huge pressure to make beds available; and they tell you that you can always come back,  but ultimately you have to bite the bullet and leave some time.  In my case I was actually given the choice.  I thought I was going home all weekend but unfortunately there were a couple of obstacles still in my way.

Unlike a colostomy, the output from an ileostomy is naturally quite liquid like in form.  Despite this, my output was still too high for the doctors to feel happy enough to release me.   As a result of this I was also losing a fair bit of potassium. However, the effluent levels were reducing and on the Sunday evening it was decided that if my blood tests showed my potassium levels were rising then I would be released the next day.

When the results came through on bank holiday Monday,  they showed that although my potassium levels weren’t normal just yet, they were on the up and if I felt well enough then I could go.   I also agreed to pop into see my GP later in the week for another blood test and in this way I was still being monitored.

Making the decision to go home was hard because if truth be told I was a little scared,  but I also knew I had to start somewhere and now was as good a time as any.   It felt strange as my friend and I packed my stuff up.  I felt pretty emotional and sad to say goodbye to the wonderful people who work on the ward but fortunately there was a skeleton staff on shift and transport came through pretty quickly,  so there wasn’t enough time to get too upset.  Besides, they insisted I come back and see them in the coming weeks.  They like that.

One of the perks of having a big operation was that I not only got transport home, on a stretcher, in an ambulance,  but also for all follow up appointments in the coming weeks.  I said goodbye to my friend and was whisked home to be met by another friend back at the flat.   Walking into my flat was strange.  It had only been a month since I’d been home but it felt so long and so much had happened.  I’d been warned that it would be an emotional time and I felt the tears well up inside me.  “This is it then” I thought and my friend and I hugged each other tight.

Over the next couple of days I eased into my new life at home.  I had a lovely birthday, spending time with fantastic friends.  And I enjoyed some quality time with one of my best friends and her baby boy who came down from Newcastle to visit me for a few days.   We didn’t do too much but it was so reassuring to have her around if I had any problems,  especially for the first few nights I was out of hospital.  She was able to help around the flat especially in preparing food and doing the little chores that needed to be done around the place.

When she left I was sad but I continued to be supported by amazing friends.  One fantastic friend came round every day for months,  helping me with everything. From cooking, to shopping, to chores and even picking prescriptions up from the chemist for me.   Nothing was too much.  Other friends took it in turns to stay over, pop over, prepare meals for me, make cakes for me, buy groceries for me, send me cards, or to be simply on the end of the phone.   In the most difficult of times the kindness of others has always shone through.  For that I will be eternally grateful.

However, Mr Rasheed’s words proved to be prophetic over the course of the coming weeks.   Initially I felt very weak.  I had lost a lot of weight in hospital and although I realised I needed to eat and put some weight back on,  it was not plain sailing.  The dietitian and stoma nurses had given me some practical advice on all of this when I left hospital.  Amongst other things  I was to concentrate on getting as much sugar and salt into my diet as I could,  avoid whole grain foods, avoid raw vegetables such as salads and fruits with skins and pips,  eat little and often and to eventually phase different foods in gradually.

Because my ileostomy effluent was prone to be fairly liquid in form I needed to take loperamide  (Imodium) first thing in the morning,  half an hour before any food and to eat half an hour before I took on any fluids.  People with stomas take anti diarrhoeal drugs in a different way.   They help slow our digestion down and thus are used to help us absorb the nutrients if food is passing through too quickly.  This system was to be followed in the evenings and indeed used at any point during the day if I noticed my stoma output was rising.

Although I needed to keep hydrated I was advised to avoid drinking at meal times as it would help my bowel absorb as much as possible, and would help reduce my output.  And it was better to take regular sips throughout the day rather than have large amounts quickly.  I was aiming for a porridge like consistency to my stoma output and to empty it between 4 to 6 times a day.   The dietitian had also sent me home with a big order of build up protein fuelled drinks.  It’s a good way of absorbing nutrients and adding calories.

I felt quite confident in my understanding of all of this.  The problem was that I hardly had any energy and often despite being hungry,  when food was put in front of me, I felt pretty ill again.  Even the build up drinks were a challenge.  It was beginning to get me down,  Around this time I met my stoma nurse Rose.

Every patient who has a stoma is assigned a stoma nurse.  Although she is based at my local hospital, she works out in the community too and visits patients at home until they feel well enough to visit her in clinic.  As soon as I met Rose I knew we would get on.  She has a lovely way about her and instantly put me at ease.  It really helped to discuss my diagnosis, treatment, surgery and how I felt in that moment.  And some of the things she said helped me begin to make sense of my recovery.

She pointed out that the reason I became so tired so quickly was because the energy going out was more than going in.  It seems so simple in hindsight but it helped me begin to understand that if I felt sick after my shower and changing my bags it was my body’s way of telling me it was tired.  Slow down, have a rest and then think about eating.  She also suggested types of food to try and told me to concentrate on little and often.  To not concentrate so much on meals because that would probably make me feel ill again.  It’s exactly how I felt.

We changed my bags together and so she got a chance to see my stomas for the first time. I’m lead to believe that my stomas are really neat and quite small compared to some and she was happy with how the skin looked around them.  I’d been using a specific brand of bags since hospital but we agreed to try out different brands and see which ones suited me best.  It’s a whole new world out there and as with everything, everyone is different so we will all have different preferences.  Looking after your stomas and stoma bags is a subject I’ll return to another time.

In the weeks following my release from hospital I was in a fair bit of discomfort.  I had a few wounds, all perfectly normal for this type of surgery, around my sacrum and perineum, and so these needed looking after and in some cases dressing.  The hospital put me in touch with my local district nurses.  I can’t tell you how wonderful and kind these nurses are.  They would come and see me every day.  I think I’ve met most of the nurses now and all of them have been brilliant.  They were always so interested in me and so encouraging.  So even if I didn’t feel particularly well that day,  by the time they left, I’d had a little boost and felt empowered and that I could do this.

Slowly but surely my appetite has returned.  I’ve been back to see one of the dietitian’s at hospital in the last few weeks.  I’d managed to put on a kilo on when I saw her so we were pretty happy with that.  It seems ironic that after years of trying to eat well so I can keep my weight down,  I’m now trying to put weight back on. However I’m looking and feeling much better now and whilst it’s still challenging to find the right foods to eat, I’m getting there.  Encouragingly,  she advised me that in time she didn’t see a reason why I couldn’t eat the same sort of things as before my surgery.

Unfortunately, everyone who has a stoma reacts differently in terms of what they can and cannot eat.   The only way to work out what’s good for you is by trying things out.   To keep a record of what you are eating and how your body reacts.  I’ll have to keep on taking loperamide for the rest of my life and I definitely seem to be more prone to having a higher output but I’m beginning to have more of a sense of what works for me.   It can be tiring but you just keep on going.

It’s now nearly 16 weeks post surgery and when I reflect back on the 3 months or so since I’ve been home I realise so much has changed.   I’m now much more capable of doing things for myself.  I’m back doing all my own cooking and whilst still relying on friends for many chores and big grocery shops,  I can do quick shops around the smaller supermarkets.  I get out most days and have even managed to get to Wembley to see Adele and to enjoy a day out at Wimbledon.

These trips out have been fantastic and provided a welcome distraction to the ongoing follow up trips I have had back and forth into hospital.  Most of these are part and parcel of follow up clinics following my surgery, but it’s also because we’re beginning to work towards my next operation.

 

 

 

 

 

 

 

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Hospital

It feels like an almost impossible task to write about my time at the Royal Marsden in early spring time of this year.  That’s because in part it was one of the most challenging times of my life,  but it was also one of the most life affirming.

I was admitted into hospital on Thursday 30th March.  The day before my surgery.  Once I had checked in, it all began to feel scarily real.   I met my specialist nurse Philippe for the first time.   He went over what to expect in the coming days.   I then met my stoma nurse Jackie, who drew stoma dots with marker pen on my body for Mr Rasheed to use as guides when he came to operate.   Finally,  I met up with my CNS nurse, Katy,  who took me down to my ward.   Whilst the bed was prepared, my friend and I sat outside the ward,  idling away time.   We met up with Mr Rasheed and his team and I signed all the papers explaining that I understood all the risks ahead of me.  ” See you in the morning bright and early” he said,  “have your shower and be ready for 8am as it’s a long operation and we want to get going as soon as possible” “Ok” I said and big hugs were given all round.

The other reason for getting me in the night before was because I had to go through some bowel preparation.  For anyone who has had not had the pleasure of going through a colonoscopy think minimal light food, laxatives and emptying your bowels frequently!!  As one friend departed, another appeared, and she stayed with me until it was time for bed which was much appreciated.

In the morning, I was up, showered and gowned ready for 8am.  Shortly after that I was taken down to theatre.  I actually felt strangely calm on that morning after a decent night’s sleep.  I was nervous but I also knew I was in good hands.  The last thing I remember is being given the anaesthetic.  The anaesthetist, Mr Oliver, is a bit of a character.  He sat me up, due to an epidural that would be put into my back after I was unconscious and told me he thought it was time for my rather large gin and tonic!! And that was that.

The next thing I remember is waking up a couple of days later in the Critical care unit (CCU).   This is standard practise after any major operation and I was due to be there for as long as they thought necessary.  I found out a few days later, when I was a little more aware,  that the operation had gone well.  However it had been a little longer than anticipated because they had decided to take the large gastric polyp out of my stomach as well as everything else.  I think the operation had lasted for about 17 hours.

Mr Oliver had told me in my pre assessment that I would be sedated for at least the night following my operation,  because there would obviously be no point in waking me up too soon after such a long operation and at night.   However I believe that after the operation,  Mr Rasheed told my sister and best friend that it could be for a few more days depending on how I responded.   I can only imagine how anxious this time must have been for them.

Despite knowing I would probably be asleep,  I was adamant that I wanted two of my closest friends to come in and see me the day after my operation.  When they arrived on Saturday afternoon,  the nurse told them that I was doing so well that they were going to bring me round.    And although I have no memory whatsoever of their visit,  apparently when I did wake up,  the first thing I said, was ” Oh no mate, it’s not ideal! ”

On Sunday I was a little more conscious of the visit of two more close friends but I still went in and out of consciousness.  Unsurprisingly much of my time up in CCU is a blur.  I remember the kindness and care of the specialist nurses,  the visits of the different teams involved in my surgery to see me on a daily basis, and the pain.   I can’t actually remember the physical pain but I can remember being in pain and of how it was unlike anything I’d ever experienced.  ” On a scale of 1 to 10 how much pain are you in?” they would ask, “11” I would answer!!  So they would tell me to press my pain controlled analgesia otherwise known as my PCA.

The PCA is made up of a syringe filled with a pain relief drug such as morphine, which is fed intravenously through to you via a canula.  As the patient you have a hand device which you can press at measured time gaps and it pumps out carefully controlled pain relief into your veins.  There, is of course, a lockout period so you can’t overdose on it,  but it took me ages to work out how long I could wait in between pressing the button.   I also remember being staggered that the physiotherapist came to see me so early after my operation.  She came on the Monday, and I’m sure a few swear words were muttered under my breath as she helped me walk round the bed!!

Although I wasn’t really conscious of it at the time,  I was also nil by mouth,  except for a few swabs of water on sponge sticks every so often.  I remember dying for more water each time I was given some.   The reason for being nil by mouth is that the bowel and gut take time to start working again after such a huge operation.  The doctors need to monitor you closely to see when it’s safe to begin eating again.

Much of my time up there was on my own and spent sleeping,  but I also had joyful times with my sister and her husband and with some of my good friends.  On the 7th day I was well enough to be transferred to Ellis ward where I would stay for the rest of my time in hospital.   Although there would be some very tough times on this ward,  it’s a place that will be close to my heart forever.

I think much of the reason that this ward is so close to patients and nurses hearts is the whole environment of the place.  It was shut down and given a proper makeover a few years ago.  This was paid for by the family of a former patient who sadly passed away,  but who had spent much time there,  and who wanted to give something back.  It feels warm and safe as a result.   However for me it was also the kindness, love, respect and care I received from all the staff there.  They see you at your weakest,  but are always there to help pick up the pieces,  to make you smile and give you a shoulder to cry on.   I also made countless new friends.  There is something about being on a ward with patients who have a diagnosis of cancer.  You all have your own stories but you find strength, love, laughter and friendship even in the darkest of times.

When I reflect back on my first couple of days on the ward I realise they too are quite vague.  I gradually began to become aware of my two new stomas.  I also had various tubes and drains coming out of me.  One of them was what is called a nasogastric tube, otherwise known as an NG tube, sitting in my nose.   Although it sits in the nose,  it goes down through the throat to sit in the stomach draining excess fluid.  It sits there for as long as the doctors feel is necessary.  In my case it sat there for just over two weeks as my gut and bowel took quite a while to wake up,  which in retrospect isn’t a surprise seeing as I had, had so much taken away.   To begin with,  I had no idea what the tube was.  Indeed,  such was my confusion that I even tried to pull it off one night before my nurse explained what it was.

I could not lie on my back for the whole of my time in hospital,  this was because they had carried out a myocutaneous flap reconstruction in the operation.  Essentially this means they created a new pelvic floor for me, with the aid of muscle and skin from my buttocks.  Post surgery it would be about 10 weeks until I could lie on my back again.  The nurses would change me from side to side at regular intervals during my time in hospital.

A big physical challenge whilst on the ward was my first shower.  I found it exhausting,  but my nurse was amazing and she also changed my stoma bags with me for the first time.  So, in this way,  I was gently put on the path to recovery.   As time went on the nurses subtly gave me more autonomy.   Together with help from them and my stoma nurses I learnt to empty and change my bags myself,  and I began to be able to shower on my own.  I continued my work with the physiotherapists and spoke to different teams about any issues that came up.  My team continued to monitor me and on the Wednesday before Easter I was finally allowed to try to start taking on clear fluids.

Although I had not physically eaten for nearly two weeks,  I was being fed intravenously by a method called TPN.  However the thought of proper food was exciting.   The NG tube came out and I was able to consume clear soups, jelly and ice creams before being moved onwards to soups such as tomato soup and tea with milk.   Anyone who knows me well will realise how excited I was by the tea!   On Good Friday the doctor on shift decided I could move onto more substantial foods.  I thought this was great news.  I managed a bite of some chicken, a little mashed potato and some ice cream for dinner.   I felt a little full after eating but generally felt fine.

However late that night my stomach decided it wasn’t quite ready for me to eat properly just yet.   At regular intervals and well into late morning on Saturday,  I continued to be sick.   And when I say that,  I mean I threw up a lot.  As another patient put it,  who else outside the medical world knew that you can throw up bile for days without eating?  I was learning the lesson the hard way.  This of course had to be dealt with swiftly.  The nurses waited it out for as long as possible,  instructing me to only take sips of water every so often whilst we went back to square one again.   Unfortunately,  ultimately this also meant the NG tube had to be put back in,  but this time whilst I was conscious.  All I can say is that sounds came out of my body that I didn’t know existed!!   It was not a fun time,  and physically and mentally I was at a very low ebb.

However,  despite finding the next few days extremely difficult,  I got through them  with the love and support of fantastic family and friends both on the phone and in person,  and of course with the support of the nurses,  who reassured me that this time would pass.   They of course,  had seen it all before.  Perhaps it was a lesson for me.  My body’s way of telling me I wasn’t ready to go home yet.   Indeed,  when I saw Mr Rasheed again, back from his holiday,  he told me that unfortunately he wasn’t surprised to find me still in hospital.

I think it’s very common for anyone who has gone through such a major operation to go through highs and lows and I was no different.  On one hand I went through waves of feelings of euphoria.   I couldn’t believe I had got through the operation,  and the sense of gratitude I felt towards Mr Rasheed and his team were indescribable.  However I also realised how much I’d been through in the year leading up to the operation and there was grief for friends who had been less fortunate than me.  All the nurses had warned me that these feelings would come and of course they were there to help pick up the pieces.

Towards the end of my time in hospital my mood dipped again.  This was truly,  the most difficult experience of my life.  Although I was very able to walk and move from side to side in bed,  I felt pretty ill physically and psychologically the challenge of learning to eat,  once we started up again, was hard.  Through it all,  the support was amazing.   Not just from family and friends,  but also from my team and nursing staff.   Mr Rasheed would tell me that my appetite would gradually come back and more importantly to keep on drinking so I was well hydrated.  I was able to get out to a local coffee shop and even sat outside a pub one afternoon with some friends drinking orange juice and nibbling on crisps.   Slowly but surely I would get there,  he reassured me.  “You’ll have good days and bad days,  when you get home, but gradually the good days will outweigh the bad”  he told me.

A few days later,  I was deemed ready to be discharged.   Whilst not feeling that great I was ready to face the next chapter.   I’d spent the whole of April in hospital and was realeased on 1st May, the day before my birthday.   On the evening before my discharge Mr Rasheed came to see me.  “I was going to tell you this in clinic in a couple of weeks”  he said, ” but I thought you’d like to know now.   “I got it all.  We got clear margins and of the 40 nodes we took,  there were no traces of cancer”.   That truly was the best birthday present I could ever have been given.   I knew I would face more challenges and going home was in some ways only the beginning,  but it also felt like we were at least finally closing a chapter.