When illness strikes

When illness strikes

In 2007 my eldest son was coming up to 17 years of age. To celebrate he wanted to go to our place in Cyprus on a lads weekend.

This lad’s weekend consisted of his 14 year old brother his dad and both of his grandads so we were hardly going to rip it up to be fair.

We had a great few days away having a good drink and a bit of better weather but it is not this that sticks in my mind about this time in my family’s life.

Unknown to me at the time we were out and about Caroline (my wife) was at home struggling with some terrible stomach problems and sickness.

For many years Caroline had suffered with what was diagnosed as irritable bowel syndrome (IBS). http://en.wikipedia.org/wiki/Irritable_bowel_syndrome So when I returned from Cyprus and saw how ill she actually was I wasn’t totally surprised when the GP put this current bout of illness down to IBS.

Caroline was prescribed some IBS medication (which she thought made her bowel movements smell like mints, I didn’t). This initially, did seem to give her some improvement.

Over the course of the next couple of weeks however things started to go downhill.

Caroline was constantly on the toilet and vomiting all the time, unable to eat and basically sleeping the days away. We made several visits to our doctors seeing a different doctor each time. Each one had a different opinion on what sort of medication was required.

Eventually we ended up with a female doctor as part of the well woman clinic.

This doctor was thorough and she asked us to come back in the evening for an ultra sound scan.

The surgery has its own equipment which is unusual (from my experience) and she felt that this could give us a better diagnosis.

That afternoon dragged especially for Caroline who was drinking water constantly. But as directed we were back for 7pm desperate for answers.

The ultra sound scan was completed and we then had to wait again (this would not be the last time) for the doctor to review the results. Finally after a 30 minute wait we were called in to the doctor’s office. Caroline had a bowl to be sick into as the problem did not relent for any situation.

Caroline is a very strong person, very knowing and very intuitive. In the past she had worked in Poole hospital as a stand in (bank) nurse and so she had a fair bit of knowledge around what doctors say and what it actually means. Doctors tend to talk to you in code and are always guarded with their diagnosis until they are absolutely sure.

I basically just sat there as Caroline talked to the doctor.

“The ultra sound has shown up a problem on your right side. This can only be described as a mass. I am going to refer you to both the Gynaecologist department and also the bowel department as we are not sure where the problem starts” Was the doctors opening comments.

Caroline without flinching asked “is it cancer”?

“Well we will need to perform some blood tests as well as some other tests to see where we go from here but it can be other things not just cancer. We are not sure if the problem is your ovary or your bowel” She replied

“So if it is my Ovary and it is cancer what is the prognosis?” Caroline was straight back at her

“If it is ovary then there is lots that can be done surgery intervention is a good option”

“And if it is the Bowel what then” Caroline asked

“Well let’s just wait and see” was the response.

To Caroline this was code for if you have ovarian cancer then you have a chance if it is bowel cancer it’s all but over. As I say Caroline had been around doctors from her time at the hospital and she knew how they spoke in code and what it meant.

The blood test was straight forward enough we did this straight away. However the next step was for Caroline to have a CT scan and for this we would have to wait a week.

For the whole of that week we sat in a daze drifting between tears talking and planning all the “what ifs”. In Caroline’s mind she was going through all the options, as far as she was concerned this could be her last Christmas, she had even bought and had given out the kids advent calanders. Caroline remained very brave though putting on her tough outer image. Our son Callum asked her one day “You are not going to die are you mum” “I will do my very best not to” she replied but deep down I knew this was eating her up inside.

We have no family locally and so we really just had each other to rely on. If I am honest I was not a lot of help I tried to say the right things but you can’t really.

Finally the day of the             CT scan arrived and we were there nice and early we wanted this to hurry up there was no time to waste.

I obviously had to sit outside and wait so I did not have a clue what was happening, how long it should take and if we would get any idea what the prognosis was. I just sat there like the spare part waiting and waiting. This would not be the only time I felt like this.

Eventually after what seemed like a lifetime Caroline came out.

As I recall we were made aware at this time that thankfully Cancer was not the prognosis. It appeared that there was a mass on the right side of Caroline’s stomach which was likely to be a cyst on the ovary. However there also appeared to be problems with the bowel around the cyst.

I cannot explain the relief we felt having even the word cancer taken out of the equation.

Although the seriousness of cancer was no longer there Caroline still had the symptoms of her illness to contend with. The stomach pains the sickness the inability to eat properly all continued.

The first step was to have surgery to remove the cyst from the ovary. We were made aware that depending on the scale of the problem Caroline may have to have the actual ovary removed as well. The aim was to perform keyhole surgery but again this could become full surgery depending on what was found.

 The day of the surgery arrived and we attended Poole hospital as a day case patient as the aim was to perform keyhole and therefore Caroline would be able to come out the same evening.

We were very lucky in that Caroline was one of the first on the list and so went down to theatre in the morning. I was allowed to wait with her until she had to go and also went down to the door of the theatre with her.

She was understandably worried this was the first operation she had undergone since losing Liam about 15 years earlier after having her appendix removed.

I kissed her at the door and skulked off home to sit and wait for news.

The surgery went well and she came out of theatre that afternoon. However her reaction to the anaesthetic was not as easy as they had hoped and she drifted in and out for the rest of the day. I went to see her at visiting time but she was not coherent at all. I was told everything went as expected and so all I could do was wait until morning.

When the morning finally came I was there first thing. But as I walked in what do I see? Caroline up washed and making the bed!

At this point a nurse came over to find out what she thought she was up to. The nurse explained that they had tried keyhole surgery but that had not been possible. Caroline had a full operation and as such should be in bed.

Once we saw the consultant he explained that in actual fact they had removed a cyst the size of a melon, it was so badly attached that they had also removed the ovary and fallopian tube as well. The operation had been further complicated due to the fact that the bowel had become twisted and stuck all to the cyst and ovary area.

Caroline would now need to be referred to the bowel team.

The next 12 months consisted of tests tests and more tests. Caroline’s health fluctuated bad days to not so bad days. Caroline’s symptoms persisted and were never far away. Due to the eating problems Caroline’s weight plummeted. She went from a size 12 down to a size 6. There were instances of passing out, low blood pressure and constant fatigue.

By April we were due to go on holiday to Cyprus, we have an apartment there and our plan was to decorate it and make it more of a second home. We had rented it out but had now decided that we didn’t really want that. So we were going to start again.

Within the first couple of days Caroline was taken poorly. She was being sick and by this I mean every couple of minutes literally. She could not stop. I lay next to her in bed and she was sick every few minutes for a full 8 hours. I got so bad that in the end she was so dehydrated that she started to see things. Giant cockroaches!

There was no other option she had to go to hospital.

At this time in Cyprus they were not in the EU and so the health care there was all private. To be fair the care is very good, but being in hospital in a foreign country is never great.

Caroline was given an anti-sickness injection but this did not stop the sickness. In the end Caroline spent 5 days in that hospital. They put her to sleep and put a camera down her throat to see the problem (for which they gave us a DVD of the procedure) they also took x-rays (which again they gave to us to keep). Ultimately however they could not diagnose the problem or correct it.

Whilst Caroline was in hospital, I split my time between decorating the apartment and hospital visits, whilst trying to entertain 3 teenagers and stop them worrying. Caroline managed to make a friend with a Dutch woman who was admitted with a suspected heart attack. She had been caught up in the Boxing Day Tsunami and I made Caroline laugh by nicknaming her lucky!

The kick in the teeth came after the hospital stay when the holiday insurance informed us that we were not covered!

We were told that as she was under investigation we should have declared it. I did argue that as we don’t know what the problem is how am I able to declare it. But there was no moving them. I also asked if we had declared it would we have then been covered. The answer was no! So either way we would not win.

Luckily I had an emergency credit card and so this was hit with a £2000 hospital stay. Ouch!

We were also back in Cyprus in August to try to give Caroline a break from all of the tests and stress that she had to deal with. Ironically we ended up going through the same problem again with another 5 day stay in the same hospital possibly in the same bed! The benefit this time though was that I got a discount for being a repeat customer! Another £1900 on the emergency card. It was just lucky we went for two weeks and not just the one!

I think the final test that Caroline had to undergo involved putting a tube up her nose that went down her throat which she had to swallow to force through her system. They then flushed liquid through it that showed up and a scan of some sort. This was to show the route her food was taking.

It was eventually discovered that Caroline had a hole in her bowel and so the food was falling through and sitting in her body and going rotten. It was this that was causing the sickness. This had been caused by Crohn’s disease.

 http://en.wikipedia.org/wiki/Crohn's_disease

To deal with the Crohns disease Caroline required major Bowel surgery. So once again we were at Poole Hospital bright and early. The operation itself was a bit of an unknown, this was because they were unsure how much damage the Crohns had done and how far it spread. Basically they would have to find where the damage was unravelling it and cut it out as far away from the damage as possible. This would give a safe distance from good bowel so that it was not spread.

So until they find a safe part to cut it would be impossible to know what the situation would be for Caroline when she came around.

There was a possibility that Caroline could have lost all of her bowel and therefore have to live the rest of her life with a colostomy bag!

The consultant was really nice, he actually remembered Caroline form her years working at the hospital, he was very caring and explained everything to her to ensure she was not freaking out.

This problem had been going on for over a year and by this point all Caroline wanted was an end to it.

So once again I walked her down to theatre and kissed her good luck, waving her off.

I felt totally alone as I walked back to the car park, scared for her and what she was going through, but I was also scared for myself in case I lost her.

I got home and sat on the sofa not know what to do with myself. I sat there for a couple of hours just gazing at the telly. I don’t know what I was watching it was just a blur.

I was told I could phone up in a couple of hours for news and so as it got to that time I was straight on the phone to the ward. There was no news though, they would ring me they said as soon as anything came through to them.

I sat there and sat there waiting and waiting but no call came. In the end I just felt I needed to be at the hospital for when she came out. I couldn’t sit there any longer.

The hospital is only 10 minutes from my house so I was there in no time. I just sat in the corridor. People passed by time after time but I just sat there just worrying.

At the opposite end to the ward at the end of the corridor was a small room. I didn’t know what it was before, but as the door opened I could just make out the figure of the consultant looking after Caroline.

I am not very good with protocol I have always been a bit shy of people with authority and so it took me a while to pluck up the courage to knock on the door. But in the end my worry got the better of me and that’s just what I did.

I need not have worried. The consultant came out and I explained who I was. He kindly sat next to me in the corridor. Thankfully the surgery was a success. They had managed to remove the damaged part of the bowel with no problem. They had to remove 6 feet worth. We later discovered that it was in fact the whole right side of the bowel that had to be taken.

I asked not really wanting to hear the answer, would Caroline have to have a bag. Thankfully not. I was so relieved as I knew this was one of Caroline’s worst fears.

I got to see her but only briefly although the surgery had gone well the recover from the anaesthetic had not been as good. Caroline was still totally out of it. This had been the delay they could not bring her out of recovery because she reacted badly to the anaesthetic. Caroline was unable to open her eyes for more than a second at a time. So once again I would have to wait until the next day.

As I arrived at the ward the next day the difference between this surgery and the last could not have been starker. Caroline was laid up in bed with tubes and needles sticking out of her everywhere. Caroline had a morphine drip for the pain and an epidural in her back. She had a drip up and also a drain for fluid as well as a catheter. She looked terrible, she felt terrible as well.

I sat in the hospital with Caroline for the whole day; I have to say the nurses had no time at all. We did not see anyone except for when they came around to do the temperature and so on every couple of hours.

The next day Caroline was till in a bad way but was desperate to clean herself up. She was covered in blood she hadn’t been able to brush her teeth of have a wash.

She asked the nurse but all she did was bring a bowl of water and then left her to it.

There was no way she was able to do any of this and so it was left to me to try and help her.

Caroline stayed in hospital for a week or so but there were a couple of lighter moments. To have the drain removed from her stomach (which was really uncomfortable) Caroline needed to break wind. Conscious of her pain and her desire to have this drain removed when the inevitable did finally happen I ran excited to the nurses’ station to declare her fart had arrived! Caroline found this totally amusing.

Another lighter moment for me although not for Caroline was her trying to eat a Banana! (to raise her potassium level) Caroline loathes them she says they taste furry. Every time she put it to her mouth she gagged. In the end she opted for an injection instead it was that bad!

Although Caroline was allowed out of hospital she still could not do anything for herself and she had to have the nurse around to change her dressing. The cut on her stomach reached from her belly button all the way down to her pelvic bone. It was a huge scar. Inevitably Caroline got an infection and we spent a few more evenings in the hospital having antibiotics.

Following on from this operation Caroline had to have a hernia repair (caused through the excessive vomiting). Within that year Caroline ended up being admitted to hospital seven times with three major surgeries. She now has to take medication for the rest of her life to keep the Crohns at bay. The other side effect of the bowel surgery is that she no longer absorbs B12 which helps with memory and tiredness. So every 10 weeks she has to have a quite horrible injection for this.

On top of the obvious physical issues Caroline had to deal with there are other less obvious emotional issues as well and also financial.

Caroline was not paid for the time off she had to have and I also had to take unpaid leave to care for her. All this adds more strain on top of an already stressful situation in your life.

So when a major illness strikes even if it is not deemed as life threatening its impact on the individual or indeed the whole family cannot be underestimated.

Please sign this petition to have this disease recognised as a disability.

https://petition.parliament.uk/petitions/122024