How Jenny’s Death Came
Jenny and I had been married for 44 years and known each other for 47 years. We have two children, Cassie and Robin, and lived the most wonderful life together with beautiful memories and experiences - a perfect married life together.
Jenny had already had two cancers over the last 9 years. Five years ago, following her last bout of cancer, she was diagnosed as ‘clear - so go and live your normal life’. She had an annual CT scan and every year it was always found that she was clear. Her last scan in Feb 2011 was also clear.
Following our daughter’s birthday in November 2011, Jenny complained of an ache in her midriff but thought she might have pulled a muscle or her bra was too tight. The birthday went well, including 3 days away in Norfolk with us and many of Cassie and Brad’s friends [it was their 40th birthday]. At Christmas the slight ache was still there but it did not stop her doing all the things she loves at Christmas time – decorations, the tree, stocking fillers, presents and planning her Christmas and Boxing Day menus.
Then the nightmare started: on New Year Day’s night she could not sleep and the following day she was exhausted [because she couldn’t sleep?] - and the next night was the same but now she did not fancy any food and the exhaustion was worse. I put all this down to anxiety/stress but she, nor I, could identify what could be the cause. Jen said ‘I know my body - there is something wrong’.
Every night was the same with increasing fatigue and no appetite. Through the first three weeks of January, the doctor was visited 4 times, each time a different sleeping pill was diagnosed, but none worked. I began to think she was in the middle of a full nervous breakdown. She forced herself with my help to go out twice in this period. To be with our granddaughter to buy a bike for her birthday; and to be present at our granddaughter’s birthday party. On both occasions she asked me to take her home as she was so very, very exhausted.
The doctor said he would now start from scratch on the 20th Jan, full blood tests and an ultrasound all done on the 21st.
The doctor phoned Jen on the 22nd, and said her liver was slightly enlarged and she had a few nodules in your tummy. He had ‘fast tracked’ her to East Surrey hospital and said we should hear from them in the next couple of days. On the 24th, she received an appointment with a Dr Mackenzie for the 22nd Feb [she died on the 21st] and a CT scan for the 10th of Feb. We could not wait 4+ weeks for help and a diagnosis. I made a private appointment with him on Wed 1st Feb. In the mean time I requested copies of the blood test and ultrasound to take with me.
On the last day of January, I collected the reports from the health centre in readiness for our 1st appointment with Dr Mackenzie - and on reading them we both broke down. This is/was the only time Jen was crying and very emotionally upset. After that tragic day she has been strong, brave and courageous. We understood then that the future was terrible. She said ‘the Jen you knew was gone on 1st Jan’ and her only real regret was that this was just 10 years too soon.
There was a cancer fast track notification, the blood test results with a note confirming the diagnosis and the ultrasound talking about a large lesion [growth] on the pancreas and multiple lesions on the liver. This was when we realised it was going to be the worst possible outcome. We then started to plan for her death, even though at this time there was only the ultrasound report to go on.
The CT scan took place on 2nd Feb – Jen’s fatigue and lack of sleep made it a very difficult visit. The detailed report would take a couple of days and our next appointment was on Tuesday 7th Feb.
The weekend and Monday went slowly and we spoke openly about her dying but hoped against hope there might be a cure or our own diagnosis was wrong.
Tuesday 7th arrived - Jenny found it so difficult to dress and put makeup on, she could hardly walk to the car and into the consulting room, she sat with her head bowed low down [too weak to sit up] and listened to that terrible diagnosis and prognosis.
Dr Mackenzie said – You have a large primary growth in the pancreas and many secondaries in your liver. Surgery is out of the question – chemo might work to extend your life but there was no cure. Jen asked what chance of getting a bit better with chemo, he said there is no cure and a 1% chance of improvement. Jen said ‘1% I could not bear chemo for such a small chance.’ The consultant said he would refer her for palliative care. All done with great sympathy and sorrow. We left the hospital on our final journey home.
Jen has been so strong, brave and courageous since then, reassuring me, Cas and Bob as we seem to cry so much. I cannot see any third person without breaking down.
Now the palliative care team swing into action, doctor, district nurses, St Catherines nurses, therapist, and wonderful carers all visited in the following days. Special mattress, commode and lots of different medical equipment including ‘injectables’ all arrived within days. What a caring and superb job the NHS/St Catherine’s do for the dying.
Jen is now resting all the time, steroids were tried to give he some energy, they did not work she can speak but only slowly – even speaking exhausts her. Wonderful messages and flowers have arrived. Jenny said – it looks like a funeral parlour! They are all placed together in one place so that if she opens her eyes she can see them. I will now pick up on a daily basis.
Feb 16th Many visits today - two nurses together [district and hospice] and our chosen minister. As usual Jen insists I wash her and puts lipstick on and spent most of the day taking about the service she wants. Food intake is only Fortisip in the morning and a Complan in the evening and many sips of water.
We had instructions by telephone from the consultant to take two different drugs together – it worked – she slept from 11.45pm – 4.00am then the loo [too awful to describe], then back asleep.
Feb 17th Jen has slept most of the day – terrible trip to the loo, she insisted on walking but she could hardly walk. Mess everywhere which took a while to clean up. We have now agreed that in future we will use the commode. No food intake at all, just sips of water and/lime and lemonade which she likes so much. We tried the commode this evening - better than the loo but she is now so weak even sitting up is a problem.
Feb 18th Good night’s sleep - 7.15am she said she needed to wee. She just could not move and I lifted her on to the commode and then she passed out. After much manhandling with moans of pain, I got her back into bed and then slowly with more manhandling a bit at a time moved her into her only and favourite position – she has remained semi-conscious since. I phoned for emergency help from St Catherine’s carers. I have decided to use the incontinence pads for the future – she is too difficult to move by myself. The carers will change the pads twice per day. Two wonderful St Catherine’s nurses came at about noon, they cleaned her up, washed her all over, massaged her body with cream and then moved her into her favourite position. She kept saying ‘you’re wonderful’ and I thanked them profusely for their special help. It’s 1.10pm now and Jenny is back asleep. The doctor will communicate with a district nurse who will visit to reassess her and probably change her medication. Three nurses came again at ten past four, changed her and made her comfortable for the night. I asked ‘how long’ - they thought up to a week – we will see.
Feb 19th We are now slipping into a routine, she slept okay, the commode saga at 5am.
Wonderful nurses and carers 3 times - commode each time.
In the evening she said she wanted to watch TV – so more manhandling to pull her round to see the TV – her eyes are closed most of the time but she insisted she watched and enjoyed ‘Midwives’.
With the evening district nurses I spoke about moving the bed round, they said it was a good idea so I will make arrangements.
Cass and Bob came as they have most days, though Mum says very little but they do talk to her and hold her hand.
She asked for her medication earlier [10.30pm] which meant I worried about her commode needs, which would also be earlier. So all in bed with lights off by 11pm.
Feb 20th Poor night’s sleep – awake each hour – mainly water requests or repositioning requests. 5am requested the commode and became agitated because I said no / I will call the night nurses – she said very clearly no, she wanted me to do it. So we then go through the long, slow process – manhandle her to sit up, wait, lift her to standing, shuffle turn, pants down, sit, wait, eventually she wees and also tells me she has pooed. Wipe and clean whilst holding her, wait, help stand, pants up, fall sideways on to the bed, manhandle into the normal position [always on her right side, knees up and double pillow for her head]. Nurses and carers came at 10.30am - wonderful job, cleaned her, washed her and made her comfortable. I have decided that tonight when she needs the commode I will phone the night, on call, nurses. It is too difficult for me alone to do it and my back is now giving me serious pain with all the bending and lifting.
I have now made clear arrangements with all concerned: tenish St Catherine’s nurses, fiveish agency carers and nineish district nurses, with a callout request between 4am and 6 pm if required. That arrangement fills me with confidence she will be well cared for [besides me! Available 24hrs every day].
Jenny remains totally exhausted all the time – I am not now sure she sleeps – but she remains motionless with her eyes closed most of the time.
This evening the agency carers will come at about 5 and then Bob, Cass, Brad and I will try to move the entire bed round 45 degrees so she has a better view out of our bedroom French doors and can also see the TV. I hope it goes well for darling Jen.
The bed move went well and Jen could then see the television and see out of the French windows. Alas, she spent the evening sleeping.
Much earlier than normal, 10.45pm, she said she wanted her medication which is 4 tablets. She simply could not sit up, she was too weak, and I manhandled her up with great difficulty and then held a tablet out in front of her, which she picked up and put in her mouth and could hardly swallow it. I gave up with the rest, it was too difficult.
She then settled into her normal position, right hand side, and was fairly calm.
21 Feb At midnight she became very restless and her arms were moving all the time. She was also saying that she wanted it to end, I can’t stand it, make it end. This went on throughout the night. At 5am, she then started to complain of pain in her tummy. Slowly the pain got worse, so by 8.30am, I decided to phone the hospice. As I put down the phone, 2 Macmillan nurses arrived and, as always, did a superb job. One creamed her hands, arms and her face, massaged and soothed her; the other came back with 2 syringes; one with morphine for the pain and one with something to keep her calm. They left it an hour; it didn’t work, so they decided to give her 2 more injections. By 11am, she was sleeping peacefully with just occasional slight hand movements.
At 12.20, suddenly she started breathing in a loud panting fashion and, on each exhale, there was a grown. I now am, by then, sitting with her, trying to calm her, stroking her, and had basically decided to telephone the hospice again. As I got up to make the phone call, she went quiet and then I realised she was quiet because she’d stopped breathing.
The dreadful truth hit me – she had just died. It was 12.28pm. I stroked her, cried, spoke to her, and carried out a long agreed ritual which was to squeeze her nose very hard; to shout at her as loud as I could and to clap my hands very loudly. It made no difference. She was asleep forever.
I telephoned the hospice and told them I thought she had died; I telephoned the doctor’s surgery and a doctor not known to me said he would come straight away. The 2 nurses that were there this morning came at 12.50pm and confirmed she was dead, but said only the doctor could give that diagnosis.
The doctor came at 1pm; felt for a pulse in her wrist and neck, used a stethoscope on her right side to see if she was breathing and on her left side to see if he could hear a heartbeat. He then used a light and shone it into both eyes to confirm the pupils were fully dilated and did not respond. He then turned to me and said ‘I am formally pronouncing your wife dead’. He said I should come to the surgery tomorrow and collect the death certificate.
Goodbye my darling Jenny, I love you and always will, I will miss you and always will.