The Final Update, by Jayne

Since the sad passing of my husband Derek on the 15th July, it is only now that I feel able to finish his blog. This is also being done with encouragement from friends and family whose support has been amazing.

Derek’s last post was on the 2nd July, a day after that we found out that his biopsy did show that he definitely had cancer. This was not a surprise to either of us (based on what we had learnt over the previous weeks), but was still very difficult to hear – and this point I knew that my wonderful husband could not be cured and every minute of the day was more precious than before.

As a couple, we talked so much over the few precious weeks that we had together. Though my loss is enormous, I take unprecedented strength from the support we gave each other. During this time, he did all he could for me and I for him.

When I knew that something was amiss with Derek’s health, I started a diary. This was not just to capture mine and his thoughts, but to try and keep a record of everything that we were being told by the doctors as our brains were on overload!

Obviously, these are now my words, but I have tried to capture how I knew Derek was feeling at that time. As per Derek’s earlier posts, I know what comfort he got from writing, same for me too. I hope this does him justice, and is just one way I can express my love for him.


Thursday 1st July
Dr Palmer (Derek’s GI consultant) calls me whilst I am out to lunch at work to advise the result of the biopsy. The biopsy confirms cancer in the liver, which is though to originate from the pancreas. As such, Dr Palmer advises that this is not curable, but chemotherapy maybe of help. A referral is made to an oncologist, Dr Lucy Wall (later, upon reading up about, she is the best in her field for this type of cancer). Dr Palmer can’t say how long the cancer has been in the liver, but suspects a few months. Dr Wall will advise Derek’s prognosis.

Upon hearing this, I leave work straight away to be with Derek. Derek was surprised to see me home (as I had been told I had to go to work) - I don’t know how the words all came out, but they did. There were no tears at this time, we knew what we already knew – but it is amazing how much you can communicate through silence!

Bizarrely, or maybe not for Derek, he was delighted to have found out on this day that he was eligible (even with company sick pay) for full disability allowance and mobility allowance due to his DVT. So he was busy thinking what he could spend his extra £450 a month on. I thought, “oh no, another project!”

That night, based on the news, we were both surprisingly up beat. We both had really strange feelings…. Even when you know that you/your loved one has/will be impacted by terminal cancer – we just smiled at one another. I told Derek I would look after him, he told me (again) that he didn’t want to go into hospital and just wanted to be at home where he belonged.

Friday 2nd July
On the Wednesday previous, Derek’s medication had been changed. He was taken off the strong co-codomal and put onto Tramadol. By the Friday night, it was obvious that they were not agreeing with him. He was feeling really nauseous and almost hallucinating. After a call with my Mum, he stopped taking the Tramadol and went back to co-codomal. Whilst my Mum is nurse, this was no substitute for a lack of “out of hours” support associated with terminal cancer (all you can do is call NHS 24)! Also Derek was starting to cough and wheeze – we were not sure what the cause of this was. Another complication of his cancer??? I was just praying the weekend would not be too difficult.

Saturday 3rd July
We had to make the decision to have Beau (one of our dogs) put to sleep. He had been going downhill steadily since Christmas time, but he had diarrhea in the house twice in the last 10 days, which we just could not cope with. So, we both took him to the vets – we knew it was the right thing for him. Poor old Beau.....

Derek was in quite a bit of pain that day – though was better than how he felt on the Tramadol. We went to pub that afternoon to watch one of the World Cup matches. We did not know at that time it would be his last visit to the back bar.

Sunday 4th July
Derek’s pain was still bad, and he was very constipated – which brings more pain in its own right. Brave as ever, we went to his Mum and Dads with Lauren for our tea, Derek was the only one who ate everything. I tried, but I could not get past the soggy broccoli!
The coughing and wheezing were getting worse, and I could tell that Derek was going “down hill”, especially when I looked back to the previous weekend. He kept telling me that he felt fine and that everything would be ok.

Monday 5th July
Urgent appointment made with GP Dr Campbell, who changed his pain medication to Oxycodone – which helped enormously. He also gave him a stronger laxative which helped too. So, us both being eternal optimists thought he was sorted for a while. Even with that Derek was struggling that bit more with day to day stuff. Not able to take Tegan out very far for her walks and generally very tired and out of breath when trying to do stuff around the garden and house. Derek being Derek, would still not lie down to his illness and was determined that he was going to fix as many things around the house and garden - which he did manage to do. God knows where he found his strength from. He kept telling me that he wanted me to worry about as little as possible. Even though I knew Derek very well, I sure that he did know at this stage how very ill he was – though I firmly believed that we would still have some months to go.

Tuesday 6th July
I went to work for a few hours on this day – again under the order of Derek. Little did I know at this time, but he was busy putting his affairs in order. Derek was never the most organized person – but he was adamant that I had to be shown where all his papers were, how to work the lawn mower, where the stop cock for the house was, what I needed to do in the greenhouse, which were flowers and which were weeds etc. etc.

All my husband wanted to do, was to be sure that I cope as best I could with the practical stuff that he had always taken care of. I’m sure that this was to give him peace of mind that I would not be panicking when he could not be with me. For those who knew Derek, this was one of his most amazing qualities as a person, to think of others before himself. Though it was only during this time, that I came to fully realize this. That is not to say I did not appreciate everything he did for me, it is just that I saw him in a different light J

That evening, Derek and I walked over to the tennis courts to watch the end of one of matches. Again he had such a brave face on, though it was obvious to me that he was struggling with such a short walk. He knew too – though we did not talk about, his eyes told me everything.

Derek was also starting to hiccup frequently. Over the last few days this had been intermittent, but was now seemed to be happening every hour, with each bout lasting for 5 to 10 minutes.

Wednesday 7th July
Visit from Karen our McMillan nurse @ 16.30.
Karen was concerned about Derek that he did not look as well as when she had seen him last on the 1st July. She thought he looked anemic, under his sun tan. If that was the case, it would certainly explain the lack of energy and breathlessness. Karen called from our home and made a GP appointment for the next day.

Heard from the Western General on this day that his appointment with the oncologist would be Tuesday 13th July.

Visit from Derek’s work colleagues, Annie and John. Apart from close family (plus Grant, Sadie and Margaret), Annie and John were that last people to see Derek. As usual Derek was up-beat and so so positive. He so much enjoyed their visit and they all had good talk about the rights and wrongs of BMI (that’s enough said about that, though I know how very hurt that Derek was that no-one from management came to see him. Policy is that they wait 4 weeks. Common sense should have prevailed when you know a member of your staff is terminally ill).

Thursday 8th July
14.20 apt with Dr Campbell.
Chlorpromazine was prescribed for his hiccups and he was given Oxycontin (an extended release version of Oxycodone) to try and better control his pain.
Dr Campbell made a follow up appointment for the next day to have his bloods checked. His eyes appeared to be a bit more jaundiced, so they wanted to check his Billirubin and his hemoglobin.

The vet had called to say that Beau was back (we got him cremated) so we went to collect him. I knew Derek was not having a good day as he did not want to come into the supermarket with me.

At this time Derek was really struggling with his food. It was not that he did not want to eat; it was more that he couldn’t. He kept telling me that things were getting stuck and that he could not swallow.

Lauren came to visit that night and she noticed a big difference in her Dad since Sunday.
Grant and Sadie popped around too. Afterwards, Sadie told me how ill she though Derek looked even after seeing him on Tuesday.

Friday 9th July
I did not go to work today, was getting more worried about Derek and did not sleep well. He insisted on going to get his bloods done on his own – though he said he valued my support, he still wanted to be independent. I did not know at this time that this would be the last he would drive his car.

Derek came back about 10.30, and promptly told me that I was to get showered and changed as he had just gone into the Zen Zone and bought me a full body massage. I just burst into tears as it was so sweet of him – but he told me he was concerned about all the pressure on me and that I needed something to relax me. Bless him. I gave him a big big hug.

When I came back Derek had taken another Chlorpromazine and was very very squiffy – not coherent and not making sense. I was starting to get really anxious about this, and was just about to phone the doctors to get advice when they called me. They were calling to tell me that the Lab had called to advise that his Hemoglobin was very low (6), and I was to take him straight to Perth Royal Infirmary. They were asking was he bleeding from anywhere (????). Trying not to panic I told him that we needed to go. Obviously Derek did not want to go, but we knew what was needed done. I felt so bad, and he was starting to get angry – not with me – but just with the whole bloody thing, he just wanted peace at home where he belonged.

After getting admitted into hospital, after what felt like 3 million questions and more needles, he was told he needed an emergency blood transfusion. 2 units that night and 2 in the morning. Derek was so bad tempered, as he just saw the whole thing as a waste of time when he said he had better things to be doing. I just knew he was really ill at this point, and again tried to convince myself and him that this transfusion could only make him feel better.

I left him at 9pm, not a patient patient!

At this time, I noted in my diary that Derek had stopped eating, and was starting to struggle taking liquids.

Saturday 10th July
Derek got released out of hospital about 1pm. Grant and Sadie said they would visit him, I was glad they arrived when they did he was ready to walk out. So after a ciggie outside with Grant he got discharged.
He did look like he had more colour in his cheeks, though he said he just did not feel any better and he just wanted to go home. I was starting to get very worried about him as I was so hopeful that the transfusion would have had more of an impact on how he was feeling.
Derek did not eat anything at all on Saturday, and by evening time he could not retain liquids. All that said, we had a quiet night together on the sofa.

Sunday 11 July
Sunday day and night was the longest 24 hours ever.
Derek was so thirsty as he could not drink, and was struggling to swallow his own saliva. With no weekend support available for cancer patients in the area, I phoned NHS24. Two options, 1) take Derek to A&E at PRI or 2) have an out of hours GP appointment at Queen Margaret’s in Dunfermline. Neither were what we wanted – we just wanted to speak to someone who could tell us both what was happening. However, we opted for the latter. The GP at the hospital said that he could admit him, but Derek wanted to go home. He said he could not face hospital with all the questions etc., when they would have known nothing about him.
So, we went home. Neither of us slept at all that night. Derek for all the pain and discomfort he was in, and me just so helpless that there was nothing I could do.

Monday 12 July – Thursday 15 July
In total despair, I went to Margaret and Phil’s next door just after 8 on the Monday morning. I did not know that Margaret was home, but she was, and turned into my guardian angel for the next 3 days. Derek, Lauren I will be for ever in her debt for what she did for us.

Derek was admitted to the Western General by lunchtime on the Monday, and by the Tuesday we knew he was dying. I am not going to write about Derek’s last few days, I don’t want to share them. The only thing I will say that he kept his dignity and did fight hard, plus displayed enormous love right till the very end.

Foot Note
Derek’s GP came to visit me on Friday 23rd July. As well as to check how I was doing, he also passed on some interesting information regarding Derek’s illness that he had received from the Western General that day.

More work had been done on Derek’s biopsy sample (staining of the cancer cells). It is almost certain that Derek’s cancer did not originate in the pancreas. From the detail on the CT scan and the symptoms he displayed that prompted his visit to his GP, it is certain that his pancreas was impacted (same for the liver too) but only as the cancer progressed.

The cell stains suggest that the cancer started in the stomach or maybe the esophagus. Though not definitive, he may have only had the cancer for just over a year. This is just so crazy….. though Derek’s case is very typical that no symptoms were presented until it was too late. This type of cancer is very aggressive, and unfortunately Derek’s age and fitness did not work in his favor! Stomach cancer also has a genetic disposition, especially among males.

As Derek’s cancer (where ever it originated from) was detected in such an advanced state, the oncologist already advised that he would not have benefited from chemotherapy. She also advised that there were “lumps” evident on his CT scan – but this is not the best method for looking at the stomach.

Now, looking back, the only symptom could have indicated a problem with his stomach was that he said sometimes he had a “bagged up” feeling whilst eating his meals. I can’t recall exactly when this was, but maybe the last 6 months or so. He did not complain about this all the time, so no action was taken.

Stomach or esophagus cancer certainly explains the complications in the last week, Derek clearly developed a condition called dysphagia. This now makes more sense on what was physically happening to his body, in addition to the fact that his liver could no longer cope.

xxxxxx