THE DIAGNOSIS AND PRE-CHEMO PERIOD

 

    It was during the evening of Friday 04/10/02 that my wee darling Ruth started complaining about a pain in her back, which, apparently, she had had all day but which was now getting progressively worse. She also told me that she was coughing up some blood and had been suffering from a lot of heavy night sweats recently, which were not menopause related. 

Her daughter Mandy, a nurse, then came round and she and I became so concerned about Ruth that, although she was totally against the idea, we insisted that she go to see a Dalriada doctor at the local Whiteabbey Hospital, where, incidentally, Mandy was still employed as a nurse   And so it was into Mandy’s car and over to the hospital.

The hospital was silent and almost deserted and, as there were no other people waiting to be dealt with, Ruth was seen almost immediately by a lady doctor, who took her away to a consulting room.   At one stage, the doctor came out of the room to make a phone call to Antrim Hospital and left the door open.  I looked in and saw poor wee Ruth sitting on her own, looking so tiny and forlorn.  So I sped over to the open door to keep her company and comfort her. 

Ruth told me very mournfully that the doctor thought her problem was serious and reckoned that she could be suffering from a blood clot on the lung or even TB.   So she had gone to make a phone call to Antrim Hospital A & E to tell them that she was referring Ruth to them for further investigation.  Poor wee Ruth did not want to go to any hospital and just wanted to go home instead.  But Mandy and I insisted that going to the hospital was her best option and off we set again on that dark night towards Antrim.   Poor wee Ruth was feeling so nauseous and was in such pain, that it was a very distressing journey for her.   In fact things got so bad that there were a couple of occasions when we almost had to stop the car.

           

The A & E staff in Antrim Hospital were very busy and it was a long time before they were able to examine Ruth.  First of all they gave her strong painkillers for her pain, but these seemed to do little except make her very restless and agitated.   They then carried out other routine tests, including an X-ray on her chest.  Unfortunately this revealed a shadow on her left lung, which Ruth, Mandy and I all saw with our own eyes.  They then decided that Ruth’s condition was serious enough for her to be kept in overnight, which was news that Ruth definitely did not want to hear.  But Mandy and I persuaded her that it was the most sensible thing to do.  Poor wee Ruth looked such a vulnerable and unhappy wee soul when we eventually left her and went home after midnight.

           

On Saturday 05/10/02, there was an early morning phone call from Ruth asking to be picked up as soon as possible.  On the way there, I told Mandy that I was very concerned about the shadow on her lung and said I hoped that Ruth did not have lung cancer.

When Mandy and I arrived, we were surprised to find Ruth already waiting outside A & E.  We then learned that because of a shortage of beds in the hospital, Ruth had had to spend the whole night on a trolley in A & E and she had become so upset about remaining there any longer, that she had discharged herself some time before, which was a decision that made me feel rather uneasy. 

She was in a very distressed state because when the doctors had examined her earlier that morning, they had apparently talked over her (as if she was not there) rather than to her and it had appeared to Ruth from what they had said to each other, that they thought she had a very serious condition.  For example they had noticed that she had “club fingers” which can indicate a serious underlying condition such as lung cancer!   Furthermore, during that examination, Ruth had felt that the doctors’ facial expressions and body language had clearly indicated that they regarded her as being a hopeless case.  Ruth mentioned one of the doctors placing his hand on her shoulder in a way that signified to her that he felt really sorry for her.  After the examination was over, Ruth had managed to get talking to one of the younger doctors and she had more or less confirmed that they felt that Ruth did indeed have an extremely serious condition. 

Before Ruth had discharged herself from A & E that morning, she had been told that arrangements would be made for her to have a bronchoscope examination in another part of the hospital on a date to be arranged later.

   

Ruth was so glad to get into the car and away from that hospital.  Although she spoke animatedly for a while about what had gone on during the night, she eventually fell asleep in the back seat and when we arrived home, she went upstairs to lie on the bed.  I went out to the garage, where I cried a few tears.  I just wished that it could have been me rather than her in this position, because she had so much more to lose than me. 

Later on, I went up to see Ruth in the bedroom and could not stop myself weeping again, because deep down, my instinct told me that she was indeed very seriously ill and that it might be lung cancer.  However, later on, after studying all her symptoms and reading various medical books in the house, I began to I perk up and feel a wee bit more hopeful that maybe the shadow on Ruth’s lung was not necessarily lung cancer and could instead be as a result of either Ruth’s pleurisy when she was younger or even TB, which she could have caught from someone at the Sanctuary.  But when I showed Ruth the medical books and put my ideas to her, she was not convinced and was sure it was something a great deal more serious.   Furthermore she said that she did not want to read any medical books and that she did not want me reading them either.  But I ignored her wishes and continued secretly reading medical books either in the house or down in the library.  I also rang my very good friend Mary Harkin over in England because she had had TB and knew all the symptoms.  I even managed to persuade Ruth to talk to Mary on the phone.  But I got the distinct impression that Mary did not think it was TB.

 

Although Ruth had been in terrible pain during the evening of Friday 04/10/02 and had been coughing up blood, these symptoms did not persist and, within a day or so, she seemed to be back to normal, without any pain or blood in her sputum.   Although Ruth’s pain eventually returned with a vengeance as her health deteriorated, the strange thing is that never again did she ever cough up any blood.  I therefore later came to the conclusion, that it was not the lung cancer that had caused the crisis that Friday night but something else.  However, what that evening did reveal beyond any doubt, was the fact that Ruth did have a very serious medical condition. 

 

This medical condition obviously had implications for Ruth as regards employment.  In her formative years, she had attended Enniskillen Model School where she had shown considerable promise.  She had then subsequently attended the Collegiate Grammar School, Chanterhill, Enniskillen and from there she had gone to Enniskillen Technical College, where she had sailed through a condensed secretarial course with flying colours.

After leaving college, she had worked as a secretary for a number of people in the Enniskillen area and had been very highly thought of by them all.  Ruth had certainly had the work ethos and, as a result, had been an extremely hard worker, who had always done an excellent job to very high standards.  Furthermore, because she had always found it hard to say no, she had often worked late into the night typing projects for university students, teachers and anyone else who had needed a typing job done in a rush. 

But then in 1996, after she had moved over to England, she had made a significant career change.  Although Ruth had spent over 20 years of her life doing secretarial work and had been really good at it, it was when she had become a care worker that she really found her true vocation.  Ruth was a lovely wee person with a heart of gold and, as a result, she was absolutely ideal for looking after people, no matter what their needs.  It was truly amazing to see her working with Alzheimer patients.  She used to put her arms around them, chatter away to them and brighten up their lives with that warm, captivating smile of hers. 

And when she worked with people with learning difficulties, it was exactly the same.  She treated them like normal human beings and devoted so much of her time and energies to making their little worlds so much brighter.   Later when she went to work in the Sanctuary crisis centre with people with all sorts of serious social problems, she really found her niche and was able, through her humanity and devotion, to help so many people there.

For example here is the work reference she received from the crisis centre and it gives a clear picture of what sort of a worker Ruth was and also lists some of her many qualities:

 

When Ruth returned to Carrickfergus, N Ireland at the beginning of June 2002, she would have liked to have continued working in a crisis centre, but as there was not one locally, she had opted instead to work part-time as a care assistant in Ravenhill Nursing Home just outside Carrickfergus, where she had fitted in very well and been highly regarded.  But then, this health scare changed everything and we decided that she should give up all work until everything had been sorted out.   So our local GP Doctor McAllister gave her an extended sick note and she was able to start claiming Incapacity Benefit. 

 

During the week beginning 07/10/02, Ruth and I went with Mandy to the garden centre near Whiteabbey, where we bought a lot of plants for both Mandy’s garden and ours.  Then the following day we went round to Mandy’s to help her with her flowers.  It was a cold day and because Ruth was not all that well and because we were concerned about her state of health, we made sure she was all wrapped up to keep her nice and warm.   Needless to say she enjoyed being round at Mandy’s, working with all her plants and flowers.  As for myself, there was a terrible pain in my heart, for despite my hope that Ruth’s medical condition might not be too bad, my instinct kept telling me that it was actually very serious.  I remember going out for a very long walk to try and find some plant food, but no matter how far I walked, I could not shift this awfully sad feeling or that ghastly sense of foreboding.  I suppose deep down I knew she had lung cancer and that it would kill her eventually.

 

One day, around about that time, while Ruth and I were out the back of our house, she stopped and looked down at the little garden I had dug over for her.  She said that she was going to call it “The Garden of Hope” and that she was looking forward to seeing flowers there.  In reply to a question from me, she said that everything that was planted there would return the following year as well.  But then she asked the rather sad and wistful question:  would she would be around to see them?

 

It was about this time that I began to think back to when we were living in England and when Ruth had suffered from strange inexplicable symptoms for some time, which we had always put down to her HRT not agreeing with her.  She also used to complain some times when she came back from a nightshift in the Sanctuary that she could not wait to take off her bra because it was so uncomfortable on her.   She’d also had a lot of regular pain in her back which I believed was caused by muscle spasms resulting from many years of bad posture when she was typing and, as a result, I used to frequently massage her back

            And then there was that strange thing about her swollen ankles.  Wee Ruth had driven all the way from Hastings to Cairnryan on our way to start our new life together in Carrickfergus.  It had been some feat for someone who had never driven on an English motorway before and I was extremely proud of her.  But shortly after arriving in Carrickfergus on Monday 2nd June 2002, Mandy noticed that Ruth had swollen ankles and this had bothered Ruth so much that she had gone to see Doctor McAllister, who could not really explain why she had them, but said that the swollen ankles could be down to all the driving.  But to be on the safe side he took a blood sample and this sample revealed that there was a highish level of the GGT enzyme in her blood, which could not be satisfactorily explained.  However, a subsequent blood test showed that the level of this enzyme had gone down.  But research of my own through Mandy revealed that liver damage and the existence of cancer in the liver can give rise to this enzyme in the blood.  Alternatively, Ruth liked drinking a few cans of beer and it could just have been as a result of that.   

 

While on the subject of booze, I was desperately hoping that this health scare was no more than a “wake up call” and I concluded that it would be a very good idea for Ruth to really start looking after herself.  So I decided that I should set her a good example and give up drinking completely myself, which I managed on 13/10/02.   I was very pleased about this because I was feeling so sad at the time that booze only made me feel weepy and I was afraid of crying in front of Ruth for fear of undermining her morale.  I also wanted to have a clear head at all times for whatever lay ahead. 

I also decided to give up smoking and achieved this on 5^th November 2002.  Unfortunately Ruth did not follow my example and continued smoking even more heavily than before.   But I said nothing.  If smoking cigarettes and drinking a few cans of beer made her happy and gave her some comfort from the mental torment going round and round in her mind, then I was not going to make her feel bad about it. 

           

Ruth subsequently received an appointment to go for a bronchoscope examination and, on Friday 18/10/02, we returned to Antrim Hospital.  Poor wee Ruth was extremely anxious about the whole thing and feared the worst.  After the bronchoscope examination was over, Doctor A came to tell us that the bronchoscope had not been able to go down far enough to see what was causing the shadow, so they had taken a “lung wash” to see if they could get some clue from that.  She also confirmed that the shadow could not have been caused by Ruth’s earlier pleurisy.  So what with this and the fact that Mary did not seem to think that Ruth had TB, I was disappointed.  Even so I was still hopeful that things were not as bad as Ruth seemed to think.  

 

On Wednesday 23/10/02, we returned to Antrim Hospital for the results of the “lung wash”.   When it came to Ruth’s turn to see Doctor A, she was asked to get me in too, which was a clear signal to Ruth that there was some bad news was on the way.   Also, the ominous presence of a McMillan nurse in the doctor’s consulting room confirmed that suspicion. 

           We had hardly got ourselves settled down in our seats when Doctor A informed Ruth that they now knew what they were dealing with and that Ruth had cancer (this information was delivered in a rather abrupt and chilling way, but then again, how does one deliver such bad news nicely?).   When Ruth heard this she gasped, gripped my hand and burst into tears.  Doctor A said that although she had not been able to get down far enough into Ruth’s left lung with the bronchoscope to see what was going on,  the ”lung wash” had revealed, beyond any doubt, that she had squamous cancer cells in her lung and that therefore the shadow on her lung was a squamous non-small cell lung carcinoma.  At this point Ruth suddenly said that she felt sick and although the McMillan nurse directed her towards a sink, Ruth went flying by her and burst into another room where a consultant was speaking to another patient.  If the situation had not been so serious, it would have been funny.

When Ruth had settled down again, Doctor A went on to say that although it all sounded very bad news, it might not be all doom and gloom i.e. because the tumour was squamous (as opposed to small cell) and therefore relatively slow growing and because it seemed to be peripheral, the first indications were that it might be operable, which was something she could not tell many people who had a lung carcinoma.  She added that before any operation could be arranged, Ruth would have to have a CAT scan to ensure that the cancer had not spread.  Although poor wee Ruth was stunned, she soon regained her composure.  I thought she was extremely brave and I was to think this on many occasions during the subsequent months.

After we left the doctor’s consulting room, Ruth had to go for a test on her lung capacity because they had to be sure that she would have sufficient lung capacity left, if she lost part of her left lung through the operation.  But she sailed through that with flying colours, with the test revealing that her lung capacity was above average.  While Ruth was in having the test, she was still very upset, but the nurse was extremely nice to her and gave her a lot of comfort.  Furthermore, another extremely nice nurse called Dolores, told Ruth that she could tell from looking at Ruth that she would be okay.   

 With regard to myself, although I was shocked by the news, I still felt quite optimistic, because I had been encouraged by what Doctor A had said about the tumour on Ruth’s lung possibly being operable and assumed that the CAT scan was just a routine procedure that would show no spread.  Having said that, I remember being somewhat alarmed that there were so many cancer cells floating around in Ruth’s lung.  But no matter how much I tried to reassure Ruth, she was convinced things were a lot more serious.

 

 [Note: After Ruth’s death, it became clear that Ruth had probably had cancer for a very long time, as it normally takes many years to develop e.g. 20-30 years.  One of the really terrible things about lung cancer is that it is develops in such a silent and insidious way that, in most cases, it is detected far too late, which means, as a result, that it cannot be treated successfully!   Sadly it is almost impossible to detect lung cancer in its very early stages, when it could be most successfully treated.]

 

On Thursday 07/11/02, we returned to Antrim Hospital for the CAT scan.  After the scan was over, Ruth heard Doctor N telling one of the nurses to bleep Doctor A immediately, which Ruth regarded as being most ominous.  However, I sort of glossed over that and felt that perhaps Ruth was reading too much into it.  I still remained relatively optimistic because of what Doctor A had said on 23/10/02.

 

On Monday 11/11/02, we returned to Antrim Hospital for the results of the CAT scan.  When we entered Doctor A’s room, we once again found the McMillan nurse there, which was most unsettling (i.e. her presence seemed somehow synonymous with death and terminal disease and, metaphorically speaking, she was therefore a wee bit like a vulture, ominously hovering around).   Doctor A then gave us the very bad news that, according to the scan, the cancer had spread to the lymph nodes in her chest and also her liver (i.e. stage 4 cancer).  This was a terrible shock, as we had been under the impression that because Ruth’s form of cancer was normally a slow growing one and because she was still relatively young, it was improbable that her cancer would have spread.  This ghastly news meant that her cancer was inoperable.  But what made it so much worse was the fact that her condition was now deemed as being incurable.  Needless to say Ruth was extremely upset.  But one of her main concerns almost immediately was Mandy who was sitting just outside the door i.e. she wanted the news to be broken to her in as gentle a way as possible.  So I left the room and took Mandy outside into the open air to tell her.

Although Ruth was still very upset when she left the doctor’s room, she managed to calm down quite quickly and regain her composure.  We then went to meet her sister Ethel and her husband Billy in the front reception area, where she gave them the bad news in a very calm and brave way.  Billy and Ethel were very sorry for Ruth and over the following months they became regular visitors, both to our home and also the hospital.   They were so kind and helpful and I appreciated their love and support so much, especially as it must have been so very tiring for them driving down so often from Portstewart.

 As for myself, my initial reaction to Ruth’s bad news was that I was relieved that she was not going to have to endure a painful operation.   But this was actually a really stupid reaction because an operation would have been her only real chance of a cure.  The fact that Ruth’s cancer was inoperable meant, in effect, that it was definitely going to kill her eventually.   But that had not really sunk in yet.

 

Later on that day, Ruth became very upset about the fact that her condition was now regarded as being incurable, because to her way of thinking, it meant that she was doomed and definitely going to die.  I realised that, in the absence of a miracle, this was obviously what the word ‘incurable’ would actually mean ultimately.  But I felt that it was very important for Ruth to retain hope in her heart and so I told her that the word ‘incurable’, was not as gloomy as it sounded, that it was only a technical term that was applied to any cancer that had spread to other parts of the body.  I explained it by saying that once a cancer had spread, it would not matter how much radiotherapy or chemotherapy was thrown at it, they could never be sure they had got all the cancer cells and that this was why they therefore had no choice but to classify metastatic cancer as being technically incurable.  I knew this was a load of nonsensical waffle but she seemed to buy it, which was good. 

 

Later while out walking along the seafront, I wished once again that it was me rather than Ruth who was in this position.  After all, apart from her, I had nobody else really.  But she had her son and daughter and all her family and friends.  She had so much more to lose compared to me.  Furthermore life was more precious to her than to me.  If someone had come up to me and told me that “the party called life is nearly over for you”, I would not have been too disappointed because, as far as I was concerned, I had had a fair shot at it and also, apart from my time with Ruth, it had never been much of a party anyway.  But I knew she was really enjoying the party and desperately wanted to remain at it for as long as she possibly could! 

 

On Monday 18/11/02, we returned to Antrim Hospital for an appointment with Doctor H from Belvoir Park Hospital.  Once again the McMillan nurse was there and she accompanied us into the meeting with Doctor H, who said that because Ruth was not in any pain from her cancer, she would not consider radiotherapy at this stage and that instead, she would arrange chemo treatment for Ruth as an outpatient at Belvoir Park Hospital, Belfast (Ruth was offered the option of going in as an inpatient but because we were so keen for treatment to start as soon as possible, we decided to go for the outpatients option to avoid the delay of waiting for a bed).  Doctor H then went on talk about the various nasty side effects of chemotherapy. 

When we left, we were relieved that treatment would soon be starting but worried and fearful, at the same time, about how awful it might be.  However, we did not know at that point just how effective chemotherapy might be against stage 4 lung cancer, but we assumed that it would definitely produce some beneficial results.

 

While we were at Antrim Hospital that day, the McMillan nurse offered us counselling assistance.  I wanted as much support as possible for Ruth and thought this was a good idea.  So I persuaded Ruth to accept the offer.  However, when the councillor rang up a few days later, she really upset Ruth (who had been in very good form prior to that call) by mentioning the phrase “palliative care” very early on in the conversation.  Ruth still had hope in her heart that she would beat this cancer and survive.  However, to her, the words “palliative care” meant caring for the dying, which was obviously not what Ruth wanted to hear.  No doubt the lady had been trying her best but it might have been better if she had initially had a friendly wee chat with Ruth to build up her trust before getting down to the nitty gritty. 

I was, of course, very disturbed that Ruth had been so badly upset, especially as she remained distressed for days after that call.  I felt very guilty because it had been me who had persuaded Ruth to accept the offer of counselling!   But I was also very alarmed because that call had put Ruth off McMillan Nurses completely, which I did not consider to be a good thing as I felt Ruth needed as much sensitive and professional support as possible.  So on Sunday 24/11/02, I wrote the following letter to the McMillan nurse at Antrim Hospital

 

            “Dear A

RUTH ELLIS

 

First of all Ruth does not know that I am writing this letter to you and I would therefore be grateful if you would not mention it to her please.

Secondly I would like to thank you very much for everything you have done for Ruth so far.  I also thought I would write to you to let you know how she is at the moment.  Unfortunately it is not good news.  Although she is reasonably well physically, she is in a terrible state mentally.  She is convinced that she is going to die very soon and that there is nothing anyone can do to help her.  The main reason for this is that although she has received plenty of bad news over the last 7 weeks, nobody at any stage has been able to offer her even a glimmer of hope and, as a result, she feels doomed. This is very sad because she had, in fact, been doing well up until a couple of weeks ago.   It is a horrible to see such a good wee soul - who has done so much for so many people over the years - suffer in this way.  It all seems so cruelly unfair.  Every waking moment is a torture for her and, at the moment, the only respite the poor wee soul has from this continual torment is when she is asleep

I have tried to reassure her as best I can.  For a start I know from my own experience of having had cancer at 23 what it is like to be told you have cancer.  I also believe that one of the fundamental principles of nature is that there are always a few survivors no matter how dire the circumstances and that, ultimately, it would be better for her if only she could ‘hope and cope’ rather than ‘cry and die’.  But no matter what I do or say, it is not easy to make any headway at all.  Although she does not know I am writing to you, I feel both Ruth and I need further help to cope with this awful situation.  It is just such a shame that they have changed the name of your nurses from McMillan Nurses to Hospice Nurses. The former name had such a friendly, comforting, reassuring ring to it, whereas the latter name would scare the wits out of most people, including Ruth.

Ruth starts her treatment at the Belvoir Park hospital on Wednesday 27/11 and she is terrified at the prospect of it.  But perhaps when we are there, her daughter Mandy and I can find out more about what support is available to Ruth and then we can try and persuade her to avail herself of it, because God knows what ghastly horrors are looming up for her!

You mentioned something about her possibly being able to apply for LDA support.  So I sent off for the application pack today. 

 

With best wishes,

 

MICHAEL A W LAVERY” 

 

I was hoping that the McMillan nurse would respond quite quickly to this letter but it was not until about two weeks later that she rang Ruth.  Ruth immediately apologised for being a wee bit short with the councillor and went on to explain her position in a very nice and friendly way.  I was, therefore, happily confident that we had turned a wee bit of a corner and that there would be some further help and support forthcoming from the McMillan Nurses.  However we unfortunately never heard from that particular McMillan nurse again. 

 

To read more, click on THE CHEMO PERIOD

 

To return to the start of this section again, click THE DIAGNOSIS AND PRE-CHEMO PERIOD

 

To return to the very start, click on RUTH ELLIS