The Penultimate Blog

I think the title is a giveaway to you probably needing tissues..

We've now entered another phase in my brave & dearest wife's journey so time to update. Sunday night was a long night, literally every ten minutes Julie was calling my name and needing attention, for ease I stayed in the chair next to her rather than 'my bed', we had tears too, 'twas a long night. Yesterday (Monday 7^th) morning I spoke with Jayne our Macmillan nurse for Julie was clearly feeling both pain & agitation, we both realised Julie's drugs would need to be upped in the syringe driver also, after such a restless night they'd need to administer  'rescue doses' via the cannula in her arm. When the district nurse team arrived Julie was in distress clearly agitated, I’ve been prone to call Julie ‘a bugger’, one of the many affectionate terms I use for her, today is no exception. Julie can be in absolute pain and discomfort and she’ll still say “I’m alright” and despite sharing with me or Maureen that she’s in pain one minute two minutes later she’ll tell her nursing team “I’m ok,” or “No I’ve got no pain”, this time there is no disguising it, Jayne had already spoken with Carolyn and confirmed what we had agreed. The doses although still not huge were administered around noon and she went out peacefully, the idea is to apply just enough of a dose to keep Julie comfortable not to put her right out of it though this will invariably be the case soon. Around four thirty pm the effects started to wear off despite the driver dose increases too and by just gone five she was in a great deal of distress calling my name and “Andrew, please help me”, this is as you can imagine distressing for myself (and Maureen), I feel so helpless except to stroke her hand and try to reassure her. I handed over to Maureen so that I could leave the room and call the nurses out to her; Knowing how she can disguise her condition as she wailed I voice recorded her purely because I pre-empted what would happen next, sure enough as the nurses arrived and began to speak to Julie she mumbled to them she had no pain, she was seeming peaceful but not a minute earlier was in terrible distress. The nurses looked at me as if to say “are you sure?” Maureen commented about how uncanny Julie’s behaviour is. I shook my head at the team and explained and played the recording to them, straight away they started to prepare the doses. Before administering them though and thankfully as if to confirm Julie asked me to help her again and “Please make the pain go away”, the team had heard this and I told Julie she would soon be out of pain as we were giving her a top up of her medicines, I asked “Is that ok hunny?” she muttered a very soft yes, by six pm her meds had been administered & she was peaceful again. It's obvious with the agitation that the only way to keep Julie restful now is going to be under sedation but for nursing professionals they rightly have to be 100% sure the patient wants their help, this stage will never be about me or you it will be about your/our loved ones.  

By 8.30 Julie was begging me to help her she was indicating the tumor site was the area causing her pain she was obviously distressed again & I called the nurses out again even though they're due around 9-11 I’m not risking it being too long for Julie.  Although Nurses administer the drugs in the syringe drivers and the what we call top up doses the framework in which this happens is written up by a GP on a specific chart, to save constant calls to get permissions as well as stating the amount of drugs to go into the drivers it gives a range of both strength and time constraints for the rescue/top up doses. For whatever reason although two drugs are written up as can be topped up every two hours, the morphine is written up as every four hours, Julie’s previous dose had been administered 3.5 hours ago. Liz our Nurse tonight called the GP out of hours service, she spoke to a GP and he agreed it should be available every two hours and would amend the documentation to reflect this. For safety, professional and ethical reasons Liz needed to physically see the original ‘PMAC’ form so dashed to the hospital to get it off the Dr. Remember at times like this don’t ‘fight’ with the team, they’re professionals, I’ll happily console and comfort Julie whilst Liz dashes to get the form and to come back.    To cut a long story short they sedated her again hoping she got a peaceful night. At 4.30 Fran our Marie Curie sitter called the nurses out then called me, until they arrived from her sleepy state a very distressed Julie kept repeating "Andy, please help me", I reassured her help was on its way, these are the moments you feel so helpless and so vulnerable… Around 5 Nurses Ruth (who we had never seen before) and Paul arrived, they saw and heard how agitated Julie was & administered more Midazolam & morphine, she's peaceful again now.

It's reasonable to say now that to preserve Julie's dignity and to prevent her suffering further distress she’s unlikely to be coming out of her current restful state except if the pain increases beyond the drugs controlling point.

I’ve informed family and friends now regarding visiting, anyone who has confirmed with me that they wanted to see Julie this week, you remain welcome but in the knowledge of her being sedated; I’m equally comfortable & understand should you feel too saddened to make those journeys now. Besides immediate family who wish to visit & remain most welcome I feel this is the time to say that 'visiting has ended'. Julie's closest friends (& you'll know who you are) please call me if you want to come over. Thank you all for your understanding with this decision.  

I'll issue further updates as relevant but I've no intention of turning this distressing time for all of us or all of you or this blog into a football match style commentary, as such this is the penultimate blog in terms of Julie’s journey. I hope you’ve found it useful, I hope it has given you a unique insight into an amazing lady’s life, her personality, her determination our highs and our lows and that if you have to walk this path it makes it a little easier for you, I’m truly sorry for those that have been reading the blog and its opened up your own previous experiences, I hope you find comfort again soon.

Thank you all for your continued amazing support. Xxx Andy, Julie & Maureen