Kate, Morgan and I have been so incredibly moved by all the wonderful messages. Like Elaine, I am not often lost for words but I find it hard to describe the emotions the responses to the “Farewell” posting have aroused. Thank you all so very much.

Morgan has written from Cambridge asking me to add to this page the following message:

“Thank you all so much for your contributions. I’ve been sat here this afternoon reading them, with tears streaming down my face. To me she was my mum, but to see what a profoundly positive impact she had on other people’s lives is incredible and I am very grateful to you all for sharing your thoughts and feelings about Elaine. You have no idea what a comfort it is to read them. This is an extremely tough time for me, so you’ll understand if I keep my thoughts brief. I was just so overwhelmed by your tributes that I felt compelled to write a few words of thanks. I will try and write in more detail about her and what she meant to me at some point soon. Thank you all so much.”

For those who can make it, the funeral service and celebration of Elaine’s life will be at Wainsgate Chapel, Old Town, Hebden Bridge on Friday, 12th October at 1pm followed by burial in the church graveyard and wake at Old Town Community Centre. All welcome. Family flowers only please. Donations to Winston’s Wish (for bereaved children) care of Valley Funeral Services, Hebden Bridge.

We have criticised the Health Service at times over the past three years, but that usually didn’t apply to the individual health workers who have been fantastic. For the past few weeks, we have had the most superb and extensive support. The district nurses, Macmillan nurse and GP have all been totally brilliant, often going way beyond what they had to do. Nurses would even phone up when they were off duty to ask after Elaine because they were so fond of her. Elaine always let them know her appreciation, and I would like record my very profound thanks too.

We have started a memorial page on the Hebden Bridge Web which Elaine co-founded.

With great sadness I have to tell you all that Elaine died at home this morning at 2.20am.

Her daughter Kate and I were with her, and she died very peacefully from liver failure.

She was in no pain but had stopped being able to communicate with us on Saturday.

As her friends learn of her death, we are receiving cards and emails. This is from one and is typical: “her writings, her ability, her infectious humour and her kindness – she leaves a legacy of wonderful memories.”

I will post funeral details as soon as we have them arranged. And we are thinking about a memorial page for friends to post comments

Thanks to everyone for all their support. I knew it was coming but I am missing her with such a passion.

We were together for 26 years and the closest of kindred spirits.

Elaine’s ability to move around has greatly deteriorated over the past couple of weeks or so. Last night, she only made it up the stairs with an extreme effort, and with me doing everything I could to help from behind. But at the top, she finally lost her remaining strength, and just lay down in the corridor. I couldn’t get her up, and we decided it was a job for the paramedics so we called an ambulance. They were terrific, and soon got Elaine to the bathroom and then back to bed.

Yesterday morning, we had been visited by A, the occupational therapist who is sorting out a hospital bed and all sorts of aids for Elaine. But it is very doubtful whether there is going to be any solution to the stairs problem.

Elaine decided a couple of days ago that sadly there was no way she would be able to make the journey to Cambridge. So Kate will come over and stay while I take Morgan down to Cambridge.

I’ve just read this to Elaine and she replied, Churchill had a saying for this: “Keep buggering on”.

The arrival soon of a hospital bed for me has necessitated that I have a bigger room. Chris had suggested he give up his large office room before but I hate re-arrangement of furniture etc so much I’d said no to it. What an idiot I was !

They spent 9 hours on the job yesterday whilst I stayed at Kate and Jonathan’s flat (thanks again, guys)

The transformation is quite incredible. It has made me feel so loved both the work they’ve done and the uncomplaining way in which they‘ve done it.

At Cookridge today, Dr F took a deep breath before saying what deep down we already knew. Elaine is too weak to be offered any more chemotherapy. They will still treat her, but only symptoms.

Elaine is finding it very difficult to walk or climb stairs, and gets breathless from activity. She is now very thin, having lost 3-4 stone in the past three years. The Macmillan nurse has successfully treated Elaine’s nausea. But the breathlessness is being aggravated by an enlarged liver pushing on the lungs.

Although we both feel pretty miserable this evening, Elaine’s first thought was “Thank goodness I didn’t buy the wig” (The next round of chemo would have led to hair loss).

Elaine is still really hoping she might find the strength to travel down to Cambridge in two weeks time.

Elaine continues to be buoyed up by messages from former students and their families as they learn of Elaine’s illness.

Today she received the following:

“We were so sorry to hear about your health problems and that you were leaving ***** School. Z was particularly upset as he has the utmost respect for you as a teacher and really appreciates how much you have done to make English an enjoyable subject for him. His father and I never thought it possible that Z would ever actually enjoy creative writing as he has always been so resisitant to trying it and he now freely admits that he finds it very satisfying. He also now voluntarily contributes to the ***** School Times which we find amazing. We feel that this is all down to you as his teacher, you have brought this out of him and inspired him. We want to thank you so much for all that you have done and let you know how much you will be missed at ***** school.”

Tomorrow, we go to Cookridge for an assessment of how Elaine is doing and whether she is strong enough for the next round of chemo.

It’s a couple of week since the last post. Elaine has days where she is fine, sociable and relatively normal, but she also has many days where she is incommunicado. That is she just wants to sleep, and won’t talk with visitors or those who phone. But even when she is fine, she is currently suffering from breathlessness from any physical activity. There was a thought it could be anemia but a test last week showed that her bloods were fine. Now there is a question about whether there is some fluid on the lungs. We should know more when the 23 August scan result is available. We’re waiting to hear from Cookridge about when the next round of chemo is going to start. I suggested chasing them up, but Elaine indicated she was in no hurry!

This morning she sent me something written by a former student, now in her thirties, which continues the theme of the previous post. Here’s one paragraph from the message:

“I owe a lot to you, Elaine. If you had never taught me for that year at ***** College, asked me to consider myself as having a talent and ability and, through your teaching, opened another world up for me, I probably would never have become so academically-minded, never done my MAs, and never even thought that I could possibly write. In short, I would not be the person I am today. You set me on my path, and I am so very grateful for that.”

Very reluctantly, Elaine has had to give up her online teaching, and tell her colleagues and students.

I’ve been very moved by this message from an 11 year old Japanese student, whose brightness I’ve heard about regularly from Elaine.

“Dear Elaine,

Hello.
I just heard about your cancer, and I was terribly surprised.

My mother feels the same way, and she has sent you the kindest regards.

I was looking forward to meeting you next Term, so I was disappointed.

But I would like to tell you this.

I want to thank you for teaching me, and tell you that there will be no teacher as good as you.

I hope and pray that you will be able to live as long as you can.

We will never forget you, and if (our school) one day becomes bigger, your name will always be remembered.

I think I have taken a great liberty in writing this letter, but I sincerely hope you will forgive me.

Yours sincerely,
Y . . . . .

P.S. My Dad.. father says he is sorry as well. And I have another word..

‘If you are sad, and want to give up, put your fingers to your lips and pull.
Look at the mirror, and smile to yourself. Remember, a smile on your lips, then there is peace at heart.’

Whoever said this, it’s very good… I myself have been encouraged with it.

May God Bless You.”

After all the negative results I have had in the past few days it was great to have an uplifting one!

Yesterday, 16th of August, Morgan got his A level results from Greenhead College – six grade As! Yes 6 As in Philosophy, English Language & Literature, Medieval History, Politics, Sociology and General Studies. He took so many because General Studies is compulsory and he was so interested in all the subjects he was doing that he didn’t want to give up any of them. They give students their marks these days, and each subject was 94% or more.

He has always been an academic and intelligent person but the last couple of years at Greenhead have developed him so much and it has been exciting to see him discovering the joys of the intellectual life as we ourselves did so many years ago now. Morgan was interviewed by the Halifax Evening Courier and made today’s front page! You can read the online article here.

His entry into Greenhead coincided with the diagnosis of my illness which he has coped with so well. Here’s hoping to see him graduate.

I was rather annoyed with myself yesterday when about 5 yards away from the main door of the college I fell again. I have no idea why. I scraped my nose, burst my lip, have a bump on my head and felt as if my teeth had been knocked out. Fortunately they hadn’t been. My glasses will have to be replaced because of bad scratching on my plastic lenses. The dentist examined me today and said it looks like I have been “very fortunate” as he can’t see anything that needs immediate attention. Return in a fortnight for an X ray to see if they have fully tightened on their own. My elbows are also strained. Phoned for one of my Park Attwood Clinic appointments (See earlier post) where Dr. A who I spoke with said that she felt I should ask for a neurological examination as well. I know what she’s thinking and the idea of brain cancer too feels just too terrifying.

Elaine wrote this yesterday evening.

Last night (I don’t quite know how) I slipped and fell down about 7 steps of our very steep staircase. It was very frightening as I saw the wall approaching & thought that I was going to go straight to the bottom but luckily I managed to use the stair’s hand rail to save myself. Very shaken up and with Chris’s help I made it to the sofa where I was aware that I had some pain at the back of my left knee but felt OK once the shock had worn off.

It was when I began to get up to go to bed that my real problems started. I was in such awful pain reaching my feet that Chris claims I made far more noise than during Morgan’s birth. Getting up the stairs was agony & I didn’t even clean my teeth because of the small amount of extra movement it would require to reach the sink in the bathroom. I needed to go to the loo in the night. It took me almost 5 minutes to get there even though it’s right next door to my bedroom.

This morning I called out our GP who said I must have an X ray because chemotherapy weakens bones considerably & he feared something might be broken. As he left I felt as if I couldn’t face much more. A broken knee in addition to everything else? I felt at such a low ebb.

The ambulance crew were a cheery couple who when they had skillfully manoeuvred me in a chair down the stairs were very chatty. O telling me all about his recent trip to Saudi and L about her recent grandchild. O and I had recently watched the same programmes on India and Pakistan as part of the 60th anniversary Partition commemorations. He had actually seen the closing of the border gates between India and Pakistan which formed the funniest part to us of the programme led by Sanjeev Baskar & told me that amongst the huge crowds which go to watch this ceremony every day you can always tell British born Indians and Pakistanis because they are the ones laughing hysterically at the Ministry of Silly walks goosestepping which the soldiers use.

I was seen very quickly, X rayed and told I didn’t have a break but a sprain in my knee. I don’t even need crutches just an elasticated bandage and painkillers both of which have brought tremendous relief. I have had my criticisms of Calderdale Hospital but have always found A&E there to be an excellent and very well run department.

I was delighted this afternoon when Elaine told me on the phone that they were discharging her and that I could come and get her. We arrived back home just after six, and Elaine’s vitality is very much better today than it has been over the past few days. There have been times in the past few weeks when Elaine was not up to talking with people so it is good to be able to hear Elaine’s socialising (we have a couple of visitors) nearly three hours after we returned home.

I’m being kept in Cookridge because of a high temperature. (Chris is typing this for me.) The drain has just been taken out. If my temperature remains high overnight, they will probably want to keep me in tomorrow. Anyone who could visit would be most welcome, but please check if I am still here. (0113 2673411, Rutherford Ward) Visiting hours ar from 2-8 pm.

If you’ve got to be in hospital, this is th best one I have been in. The staff are very friendly and warm. There are views of trees out of the window and it is far quieter than other hospitals, with reasonable food.

Here’s a quote from “Cancer Ward” by Solzhenitsyn (pub 1968) which I’ve just enjoyed reading: “They all longed to find some miracle-doctor, or some medicine the doctors here didn’t know about. Whether they admitted as much or denied it, they all without exception in the depths of their hearts believed there was a doctor, or a herbalist, or some old witch of a woman somewhere, whom you only had to find and get that medicine from to be saved.” In the mid-1950s, Solzhenitsyn went from concentration camp to cancer ward, recovered and is still alive.

Elaine is back in hospital – Cookridge this time. Yesterday, she was diagnosed with ascites which is is an accumulation of fluid in the abdomen caused by the cancer. She will have to stay in for a day or two while it is drained. This ascites could also have been aggravating the nausea and loss of appetite. Since having the line out last week, her mental vitality has returned – she has spent a lot of time on the phone and has really enjoyed talking with visitors. Previously, I was having to turn people away.

However, physically she seems to have no strength, finding it hard to walk or climb stairs. Today at the hospital, for the first time, she had to use the wheelchair to move between sections. On Tuesday, after her trip to the hospice, she went to bed around five and slept right through.

We also received the results of the scan – bad news. The report referred to innumerable metatases in the liver. Given that the current regime of chemo is apparently no longer working, it will now cease. However, there is another form of chemo which she will probably start in August – and this one involves hair loss. It apparently has a fifty per cent chance of holding back the progression of the cancer for a while.

So we have plenty to think about, but at the moment. Elaine is really looking forward to having the fluid drained as it has been causing her serious discomfort over the past day or so. I am hoping that this might also be the source of her loss of energy. She has hardly eaten over the past few weeks so if she can recover her appetite I hope that will help.

Elaine wrote this yesterday:

Today I went for my day at the hospice for the first time since May 15th. It’s a very cheery place and it’s good to be with so many different types of people all in the same position of having incurable diseases.

One of them K. made me feel particularly humble and grateful for the life I have had. Only 31 and with an 18 month old son, she developed MS when she was 25 after a life which seemed until then very successful. She done a Maths degree at Manchester University and then became an insurance actuary, a job which she obviously loved and found very fulfilling. Her MS has taken some frightening forms including 6 months of blindness from which she has now recovered. She discussed her situation very matter of factly without a trace of bitterness or whinging. She can’t walk without a stick, has to have bath aids and has had several falls luckily when her little boy has been at his nursery. She took such pride in her son who she even managed to breast feed.

We shared stories of the horrors of peripheral neuropathy which is one of the symptoms of MS and a side effect of the drug oxaliplatin which I have been given & our fears about becoming a burden. But it felt so wrong for me to be having this conversation with someone of my daughter’s age rather than my own or older.

If self pity creeps up on me I am going to try to remember K.

Just when things were looking very bleak, something happens to re-ignite our hope.

Elaine has been seriously ill for the past 3-4 weeks, although she has rallied a little this week. We began noticing a connection with something the district nurses were doing. Each time they flushed Elaine’s Hickman line, within half an hour, she got another attack of the rigor (pronounced rye-gore – involuntary shivering). It happened again yesterday morning for the third time and we talked about bringing it to the attention of Dr A.

By chance, yesterday afternoon we finally had a visit from a MacMillan nurse. We could immediately see why everyone raves about them if Nurse A was typical. She was caring and intelligent and unlike the other nurses, involved me in the discussion nearly as much as Elaine. We just wish it hadn’t taken so long for Elaine to see one – we first asked last summer.

We described the correlation we had noticed between the district nurses flushing Elaine’s line and the attacks of rigor. A great knowing big smile came over her face. “It’s an infected Hickman line. It’s the classic symptom.” She explained that she had spent five years working on an oncology ward and had seen it many times. This was fantastic news! It could mean that Elaine’s recent illness was not directly because of the cancer (as she was thinking) but because of an infection. Over the past two weeks, Elaine had seen at least ten different doctors, either GPs or more specialist at Calderdale Royal. None had made this diagnosis.

This morning, we saw Dr A, the consultant at Cookridge. and he confirmed Nurse A’s diagnosis. He explained that they could treat the infection with antibiotics, but in his experience only a minority responded. It was agreed to have the line removed next Wednesday when she attends Cookridge for the re-arranged scan.

Elaine is now sleeping, totally exhausted after our trip to Cookridge – her recent illness has taken away much of her normal vitality. But we drove back really happy at the prospect that she may get much stronger after the line is taken out.

The decision about resuming chemo will be made when the results of next week’s scan are known.

Listen to Elaine speak this entry.

I probably have a year to live. This time last year I had two years to live. This time next year I might be in the ground or frailly existing a yellow, swollen bellied skeleton, literally a shadow of my former self. “Living and yet not living, dying and yet not dying.”

Though the worst of the anger has subsided, I haven’t and still can’t accept it. Everyone thinks I am being so brave but they don’t know I’m still screaming internally at the injustice of it all. It’s not fair, it’s not fair, it’s not fair.

Apart from my maternal grandmother who died tragically young at the age of 37 from breast cancer and my parents who died unnecessarily of suicide and manslaughter at the ages of 38 and 37; at 55 I shall be the youngest person in my extended family to die so young. Why even 21 stone Uncle Cyril, with his 40 a day habit, 6 pints night and penchant for fried food at every meal lived until he was 67. Whereas never smoking, vegetarian, 40 laps of the swimming pool daily isn’t even going to live as long as the average Glaswegian male.

I am trying to die “gracefully” I can’t help these waves of anger and injustice which engulf me whenever I see a smoker or a person I know who’s lived a dissolute life.

I am pleased to report that Elaine came back home at lunchtime today.

Nothing is certain till it happens. Cookridge got too busy to take Elaine – there were no beds available. So she is still at Calderdale Royal. But she seemed much better. And is now eating small amounts of food quite regularly, without the nausea. We feel that there is a chance she might be able to come home tomorrow or Sunday. But nothing is certain . . . .

One of the doctors she saw introduced himself as Dr Stalin. Elaine had to ask. It seemed that the southern part of India where he came from was, in the 30s, full of communists. Many people named their children Stalin, and it has remained a popular name in the area.

Elaine is still very poorly but this evening says she thinks there has been some improvement. She has managed to hold down a yoghurt at lunchtime and an ice-cream (!) this evening – only the second day she has eaten anything in the past week. Her nausea has subsided for the moment.

Tomorrow morning, they are moving her to Cookridge. She was given a choice but we felt that Cookridge would give her better treatment – and she said the consultant who did the round at her ward at Calderdale Royal was a Lancelot Sprat type creature.

In spite of the best efforts of the district nurses and Dr H, and their lines and anti-sickness jabs, Elaine had yet another distressed night, and was feeling terrible this morning. A further attack of rigor with vomiting and diarrhea meant we called the doctors again.

She has been taken by ambulance to the Medical Assessment Ward of Calderdale Royal.