Okay as promised here it is, my story, I hope you are sitting comfortably and have a cuppa and biscuit! My Chemo Bud Wendy has asked me to draft a blog to chart my cancer experience. In many ways there will be similarities to Wendy’s but we are all different and as with Wendy, if this helps one person through the dreadful experience then my work is done!
As we are now 5 months post op and well past the beginning I may leave out large segments in the interests of the readers sanity! I have stuck to what happened without lots of details and haven’t really detailed feelings. Perhaps this is what is needed however it is a long piece of writing so I have kept it lean!
So where did the journey start, that’s a difficult one and I am only speculating as there is no proof of how or when the tumour started. So going back to November 2013 I was having problems with coughing, I mean serious bouts of pelvic floor busting coughing. Several visits to the doctors and a number of tests and x-Rays later confirmed that there was nothing wrong with my lungs. By February 2014 the prognosis was that I was producing excess stomach acid and the doctor put me on lanzoprazol to reduce the acid. This worked and stopped the coughing however it wasn’t long before I started getting stomach cramps and diarrhoea. The doctor put this down to side effects. In the summer I had a few episodes where I reacted to certain foods for example avocados made me feel awful and the cramps were at times debilitating, stopping me in my tracks until the pain had gone. As the summer went on my ability to eat large amounts reduced and by November/ December many foods were making me sick, so bread, crisps, anything spicy were all causing problems and I started to loose weight. Yay! I presumed this was down to my reduced diet and was pleased that by Christmas I had lost nearly 1.5 stones. Just before Christmas the doctor changed my tablets but just one day in I was sick so advised to go back to the lanzoprazol. By this time I was also exhausted. I put this down to working full time, looking after a 3 year old with my husband working as a chef and therefore never home! Over Christmas I walked across Wycombe to get my Christmas food from M&S. I had to stop 4 times to rest. This was definitely not right!
We thought we would cheer ourselves up and booked a lovely holiday to Sri Lanka to take Lucas to see his Sri Lankan family. My husband is from Sri Lanka and although we took Lucas when he was 3 months, we haven’t been back since so it was about time! How exciting, warm weather, sun ,sea ,sand and lots of curry! Booked for March and Lucas was so excited!
In the new year I saw the doctor again and told her I was exhausted, this prompted a blood test which came up with ‘an infection in the blood’ and anaemia. Great we are getting somewhere. I was advised to follow the FODMAP diet which is aimed at helping those with IBS. So I asked the doc, what do you think the problem is. The other day I found the piece of paper where I wrote her response. It could be IBS , Crohns but ruled out Celiac. What’s the worst case I asked. Bowel cancer she replied almost as an after thought. Ok I thought, I can cope with that. I envisaged how my life would change, in particular with my diet.Now being a chef’s wife and eating out regularly the thought of restricted diet is pretty bad!
Things moved quickly. Within a couple of weeks I had consultants appointments booked and bladder ,bowel and stomach scopes. Bladder was fine followed by a meeting with a consultant. This was 14 February. The consultant had a look at my notes although I still don’t believe he had access to my blood test results , he felt my tummy and said that it was definitely not cancer. Fantastic! More likely to be IBS. I was happier although worried about the changes that would be required in my diet.
A week later and I was back for my laparoscopy and colonoscopy. Before I go on I have to highlight the drink they give you to take to clear you out before the colonoscopy. It is absolutely awful, I had to take it the evening before and again in the morning. I never managed it all but omg it made me gag and retch and throw up , oh and of course emptied my bowels!
So at the hospital my mum and Lahiru ( hubby) came with me as hubby hadn’t yet passed his driving test! I was feeling pretty relaxed and didn’t really know what to expect. I was given a mild sedative and asked to lay on the bed.there were 2 nurses and a doctor present. We joked about making sure that the laparoscopy was done first! Laparoscopy done, no problem! I swivelled around and could see the screen. Knees bent up to my chest and breathe! Well says Dr Kahn, you have a very large tumour in your colon, and it is cancer.I will mark the edges of the tumour to record the size. I was in shock. Tears started to run down my cheeks. Don’t worry said the Dr,I’ve had cancer for years and I’m fine.
It all made sense now though the tumour was blocking my food going down and any food getting past was making it bleed hence the anaemia and lack of energy. Most food was going from the colon to the conjoined small intestine where the tumour had grown together which was causing the diarrhoea.
My mind was spinning .
I was taken through to recovery and they brought Lahiru in. Colette the chemo nurse came through and told me to get dressed and come through to the office. She went through an explanation using a dummy of the intestine. I was in a complete daze. Explanation complete we were shown out and without saying anything to mum went home. I didn’t want her driving with that piece of news fresh in her mind.
Within a few days we were meeting the wonderful surgical team, Mr Goeder and Barry. The op was planned for 10 days time, five days before our trip to Sri Lanka!
I worked up until the week before,keeping busy and getting everything organised assuming I would be back in a few weeks.
Holiday postponed until August as something to look forward to I spent the weekend wondering what was coming my way. Mum had been staying with us for 5 weeks at this point.
Dropping Lucas at nursery first thing on Monday we headed towards Wycombe hospital. I was absolutely petrified. Changed into my gown we walked from the day surgery ward to theatre. I was shaking,by the time we got to the theatre area I was crying and so scared. Goodbyes said to mum and Lahiru I was taken to the anaesthetic room where the anaesthetist made the mistake of getting his registrar to try to put the epidural in. Two lots of sedative and with the anaesthetist back on the job I was under. I had a cut from just below my bust to 3 inches below my belly button. During the 4 hour op they removed over 1/3 of my colon plus some small intestine, 61 lymph glands and all corresponding blood supply. Then joined the small intestine and colon back again.
Don’t you just love that feeling of coming round afterwards,so relaxing! Right so in a nutshell, Monday was the operation, Tuesday I was in pain but the nurses increased my epidural a few times but nothing changed. I was in agony. Tuesday was also the day I met Wendy, our eyes met across the room with a pitiful, knowing look and we were friends !
Eventually around 5.30 pm they realised that the epidural had come out, no wonder I was in pain! They fitted a personal pain administrator button allowing me to administer morphine every 5 minutes. I watched the clock! You can’t overdose they said. At around 4.30am I went ga ga,completely loopy and started throwing up green washing up liquid stuff. Omg I felt awful. Later on Wednesday they put a tube down my nose and back of my throat into my stomach to keep it empty. Green washing up liquid collected in a bag hanging from my nose! At least I wasn’t being sick any more. The looks of sympathy from Wendy said it all. I could also see that she was in agony and tried to return the supportive looks and smiles. we exchanged thumbs up and down during the day it kept me going and I am so grateful.
By Saturday I was feeling better although I hadn’t eaten for nearly a week. The nurses and doctors were amazing. I have never seen such wonderful dedication and teamwork. They were amazing.
I realised that if I wanted to go home I needed to eat and for it to stay down so on Sunday morning I had some weetabix.bad idea! I need to be on a low fibre diet and by mid afternoon I was so bloated, stomach cramps and so much pain but determined to go home I waddled around the corridors trying to shift the wind. With buscopan and plenty of toilet trips later I was allowed home. Great news!
The trip home with the jiggling about in the car coupled with some hand reflexology got rid of the wind and I felt much better.
It was lovely to be home and my husband was an absolute star cooking wonderful food every day. I had my staples out (34) on Thursday but was suffering with diarrhoea and a sore bottom big time.
Then after dinner on Friday I started getting stomach pains. At first I thought it was wind but after writhing around for a couple of hours and tramadol making no difference I gave in and asked mum and Lahiru to call the hospital. By this time I was in agony. An ambulance arrived, filled me with morphine and took me to A&E where I was scanned, prodded and tested and eventually found out that the stitches had split and my join was leaking.My consultant was on holiday in South Africa and I was scared.
Over the next few days I found out the infection in my blood was over 400 (normal is around 60 I think) and the surgeon was considering opening me up to rejoin the ends but this would also mean a colostomy bag. I wept and begged Barry not to do this. The thought of another op filled me with dread and coping with a bag was a close second. I was borderline critical according to the wellness score but after agonising with Barry! I am eternally grateful that he gave me first 6 hours then 24 hours to show signs of improvement. The 4 antibiotics started to take effect and the infection scores started to slowly reduce. They put in a drain and bag to draw off any leakage and let me off the surgery. At last Someone was watching over me.
After 6 nights I was allowed home. Another great moment!
I have to say that during all of this time I was suffering with constant diarrhoea and a sore arse. The soreness depended on what I ate! I really missed those curries (and still do!)
During all of this time I was inundated with well wishes, get well cards and flowers and gifts. It’s amazing and I am so grateful to all this who have and continue to support me through this journey.
So now we are around 8 weeks post op and starting to feel normal. Given that I had been so exhausted for so long I couldn’t believe how good I was feeling and made it down to Devon to stay at mums for a few days. It was magical.we didn’t stop and packed a months worth of fun into those few days! By now mum hadn’t been home for 3 months.Bless her.
Stage 2, just when you think it’s ok you start chemo.
Before starting chemo we met the oncologist. We had been referred to a lady who Dr Goeder spoke very highly of however when we arrived at the consultation we were told that we would be looked after by a locum. It was her first week so we gave her the benefit of the doubt but our second meeting did nothing to solve our concerns.
Just before the chemo started Lahiru and I were invited to meet the chemo nurses and discuss the side effects. We went along to the chemo ward at Stoke Mandeville, the nurses were lovely and the facilities were very nice.
Walking into the centre for the first time really brought it home and I just burst into tears. I was and am still surviving by being completely in denial.
Session one chemo, Lahiru had to be at work so mum came with me. I was petrified and cried when we arrived. The nurses were brilliant and calmed me down. One of the problems that I have had to deal with throughout all of this is my ‘wiggly’ veins which means that it always takes at least 2 or 3 attempts to get a cannula into me. This was no different however treatment started and things seemed to be going ok until the last 15 minutes. I went totally listless,was shaking and shivering and had pins and needles.I felt sick and couldn’t breathe. The nurses were good and calmed me down, they finished the treatment,gave me a blanket to put round by neck and throat due to sensitivity to cold and sent me home.I felt exhausted and really sick.
As the week went on every day I felt more nauseous, the diarrhoea got worse and I felt awful to the point of getting mum to call the chemo nurses. On a scale of 1-10 I was at this time a 6. This was Tuesday. By Thursday I wanted to die,I was a 10 and couldn’t stop being sick. I was telling the nurses that that was it,no more chemo,I couldn’t stand it. They moved me to a gastro ward for the next few days but by Sunday was feeling Ok and begged them to let me go home. They had no chance of arguing as I pestered them until they got a doctor to sign me out! Another stone off!
I was told all week that the oncologist would be along to see me whilst I was in hospital. She never did come.
I called BUPA. I have insurance through work but as things had moved so quickly and the nursing care had always been good I didn’t see the need to revert to going private however after my second consultation with the oncologist being as poor as the first my mind was made up. I was going to change consultants (to Mr Weaver recommended by Wendy) from chemo cycle 2. Whilst waiting for this to be organised the NHS fitted a PIC line into my arm to make chemo easier. This is a semi permanent port where bloods can be taken and any IV fluids can be administered without any further vein trauma. Getting this put in was in itself traumatic. My appointment was for 10am. When we arrived we were told that things were running 30 minutes behind so to pop and have a coffee. We returned after half an hour and were asked to take a seat. By midday I was getting very nervous and frustrated and was eventually given a tramadol to calm me down. It was after 1pm by the time they saw me to put the PIC line in I then had to go for an X-ray to check it was inserted correctly before going back to the chemo unit for the results. We left around 3pm, my only day to see my hubby spent hanging around at the hospital. What a waste of a day.
So we met Dr Weaver on Tuesday and agreed that cycle 2 would start the following Wednesday. Phew, another week to feel normal, better make the most of it!
Cycle 2 was administered in a private room whilst eating a prawn baguette and drinking copious amounts of tea poured from China teapots! Of course it wasn’t that easy as they don’t do PIC lines! We managed to get this cycle in via the PIC line with the help of a tramadol but it was removed at the end of the session and an appointment was made to have a power port put in. This is a port inserted under the skin on your chest under sedation. More trauma!
Ok so the chemo tablets were collected and commenced but by day 3 I was feeling awful. Adversity to anything cold, Nausea, diarrhoea , listless and dehydrated. I called the chemo helpline and was advised to stop the tablets immediately, by Thursday it was worse and I called my GP for a blood test as previously I had been really low on potassium and so dehydrated at this stage which was causing the problem of making me feel so bad. Blood test came back on Friday morning and I was given electrolytes and potassium to help me feel better. The chemo team called every day for an update which was nice and by Tuesday I was feeling a bit better. A meeting with the consultant ended with my regime being changed to a 2 week cycle with IV only and no tablets. We will see how that goes!
So having enjoyed a few days of feeling good we make our way back to the Chiltern Hospital for cycle 3. I was pretty nervous as the port was still sore and it was a bit of a fear of the unknown so a tramadol later I was feeling quite chilled. Getting the IV attached to the port was pretty painful and was sore for a while but on the next cycles I will have numbing cream to use before hand. The treatment went ok and apart from feeling tired I left the hospital feeling ok with an IV pump attached which will last until Friday. Two days later on Friday I turned up at the Manor Hospital in Oxford to have the pump disconnected. Contrary to what I was told It did hurt! After a quick flush through we had a look around and were gone within 40 minutes! Ideal.
The diarrhoea and sore arse started Saturday! Here we go again! The good news is that the other side effects such as adversity to cold and pins and needles are a lot less. The down side is that my hair is thinning.
At the time of writing my mum has been here nearly six months and we would never have managed without her. When I am feeling bad she takes Lucas to nursery, cooks, does the laundry and clears up. What a superstar!
Lucas has been pretty resilient however he becomes quite clingy and apprehensive when he knows I am going to hospital or when I am feeling poorly but nursery have been brilliant and supported him through the whole experience. He starts school in September but hopefully by then our routine will be much easier and he will sail through the change.
So before I finish here is my top ten tips and observations
1 when they say it can’t get any worse after the surgery, it can and does
2 the chemo staff do not have all the answers and won’t answer your questions directly
3 the nurses and doctors are amazing, totally dedicated,professional and caring.
4 just when you think your arse can’t get any worse,it can
5 friends,family and colleagues are amazing and will be a wonderful support
6 they don’t tell you that chemo is really crap
7 you don’t always get a 30 second warning when you need to go to the loo
8 no matter how bad things are,there is always someone worse off than you
9 friends you meet in hospital can help keep things in perspective and be a real source of support
10 your friends and family won’t always know what to say so cut them some slack