Macmillan - Their important role

I finished off the last blog referring to people's generosity, I've more to tell you of but I also told you about my unbearable pain and how I was almost catapulted into next week on morpine hehe, It wasn't funny at the time.. Part of the problems with any incurable/terminal illness is they get progressively worse and in the case of cancers such as mine the treatments which are really only controlling my pain and agitation caused by fluff well it needs controlling but as fluff grows symptoms get worse, I try not to think of this as a tumour growing in size over and into my brain, I know it is, I can't stop it, I just need to have its effects controlled so I can live my days out in comfort, so far despite the odd glitch it's so far so good but it just doesn't happen, let me explain more.

When you're dying from cancer you're put on what is called a palliative care pathway, most of us don't realise or appreciate there is an army of community nurses dashing around day and night to support poorly housebound patients. In our area the community nurses (formerly called district nurses) are associated with specific health centres, they become a major part of your care programme. Before I left hospital a care plan was put in place by the experts once I got home it was re-evaluated and tweaked once the teams saw how I was. Initially the nurses were coming in four times a day, always at least two of them sometimes three or four, I struggled to remember all of their names but these really are Angels, mainly female but I have at least four male nurses. Sex irrelevant these teams are incredible.
They arranged for all of the nursing equipment that I need, from dressings to catheters, to equipment to flush the catheter as needed, my sedatives and morphine too. I still order my regular medicines from the GP but this team work in close co-ordination with our GP, Andy Lee, I leave all contact with our GP to Andy, he and Andy get on well, my Andy can fill me in with his 'cat sat on the mat' approach to explaining things to me, I get lost in big words and well unless the conversation involves food or drink or me saying "What time are the carers coming"? I lose the conversation pretty quickly, this is fluff again, my memory was always so good. An example is, two od my carers, Steph & Ann are fantastic, I truly don't know how I would cope without them each weekday morning, I laugh and cry with them (me crying), they know me now and I know and trust them, I look forwards to their visits for I know I will be handled in my hoist proficiently and safely, I see them most days but then suddenly I'll say to Andy, "Who's that girl that comes in the morning?" Andy then fires names at me as I look back not recognising them, once the job description is thrown in and Andy say's "Do you mean Steph or Ann?" the penny drops, "Steph" I answer. How do I forget someone's name, someone so special to me now? I feel bad, I don't want to be like this.. Anyway Andy relays the Drs information to me, hehe I'll have forgot it in ten minutes bless him...

So I've got our GP as part of my team, I've got a huge team of community nurses as well, they will tell you though that they're just part of a bigger often unseen team, whilst they are expert in a lot of fields, Cancer patients have a further layer of expertise back up that the GP's and Community Nurses are supported by, I'm referring to The MacMillan Nursing Team. Based at Arrowe Park Hospital (my second home) they liaise between ward staff especially when a patient is to be discharged to home or to a hospice. They also liaise and support in the community, this is important for you to understand for we see or hear of Macmillan Coffee mornings etc. Macmillan fund these Nurses and specialist train them, I can tell you it takes a special kind of person from my experience to be understanding of the patient, the patient's support team and also other family members/carers such as Andy. We've met four forgive me two whilst I was in hospital out of it I've forgotten their names, two I'd like to name and then focus on just one of these angels. Andy has met David, he speaks highly of him and he was recently on weekend call when I was hit with the 10ml of morphine but our day to day Macmillan Nurse, Jayne, well I'm not sure how we would have coped without her, she's lovely though I invariably end up in tears when she is here, she is compassion and understanding itself, she uses language I understand, she is tactile which reassures me and she talks sense when often I can't rationalise, I'll explain more in a bit. Jayne and her colleagues support the nurses and the GP's GP in case we forget is 'General Practitioner' there are too many medical fields for them to be experts in them all, pain management in cancer patients for example is a difficult call and varies by patient. Jane assessed me early on following conversations with Andy, he gives her the background she comes and sees me, the three of us chat and a plan is concocted, so after the zonk out morphine dose and pain Jayne came out to see me/us, she explained it might be time to move my morphine into my syringe driver. Panic set in, I've worked as a healthcare assistant I know what morphine does and if I'm getting it all day I'll be zonked out yes? NO! Jayne explains in my case the dose is so low and this is to lower my need for the  back up oral morphine (Oropmorph), I can still have that if and when I need it. Morphine is a controlled drug that means it has to be accounted for, Andy keeps a note book with the date in the dose, the time it was given and who gave it me. Jane found this incredibly useful hehe Mr Shute does have his uses hehe. Jayne looked at my usage pattern and then explained basically we will switch it in to the driver, No it won't make me tired or knock me out at this dose, initially im getting half of the zonk out dose and instead of one go its delivered throughout 24 hours. Jayne on getting my agreement then contacts our GP and the community nurse team for she advises them, they then have to do the prescriptions, collect or have the controlled drugs delivered to ours to go in the nurses 'CD' bag, its sealed with a security seal, this is checked daily along with the precise contents, this is serious stuff, remember Dr Harold Shipman? it was morphine I understand that he was using to end patients lives, he was accountable to no one so things have changed for the good.

So as soon as Jayne advises the teams the next day the morphine is added to the syringe driver contents, my other drug in there, Midazolam, has started to not quite take the edge off my anxiety so again through Jayne and my agreement we increased this dose from 10ml in 24 hours to 12.5ml in twenty-four hours, this is all baby steps, eventually fluff gets immune to it and jumping forwards to today my agitation of the last week and pain levels increasing have over nine weeks resulted in does creeping up my morphine is now at 7.5 and the medaz is at 22.5ml, slowly the volume builds up and it will continue to, I need to be restful and pain free, I hate to fret. It's with Jane's expert assistance I'm getting just enough and each time it needs tweaking its done so without sending me into sleep for long periods, yes I do sleep more now but equally I fight it the best I can. Above all through this process everyone is very very supportive, at the end of the day as Andy reminds me it's my life, its my treatment and the ultimate say lies with me, I know I cannot just come off this stuff now for the pain will be unbearable and I suspect I'd be ranting and raving at everyone but the choice is always mine, as a patient remember that, as a carer or relative remember your loved ones have the choice, like Andy as he says for better or worse, whether he agrees with my decision or not he supports me 100% in my decision. My decision always but I take on board the rational and independent and reassuring advice from Jayne and Andy talks sense where sometimes I cannot see any, I trust them both, I trust all of my palliative care team... Sadly I know at sometime I am likely to lose consciousness what I do know is if and when that day comes my team will be making the right decisions, decisions I'd have supported were I awake and able.
Jane often chats privately to Andy, Andy is what is known as proactive, as in if something is happening out of the normal patterns with me rather than let me suffer he calls Jayne, explains, gives his view and asks for her professional expert opinion he tells me most of the time they are 'singing off the same hymn sheet' so when Jayne arrives a) she knows what to expect in terms of my mood and b) she is ready to advise BUT she always talks me through everything, this woman has squeezed more tears out of me than anyone, I can let go with Jayne, she's seen cases like me daily for sometime, she's not at all hardened, she is compassion itself, thank god for Macmillan Nurses. My chosen charity remains Clatterbridge Cancer Charity, It always will but I know Andy will and does donate and supports Marie Curie, our local St John's hospice I mentioned last time and Macmillan. There is far more to Macmillan than meets the eye, one of our first blogs explained how they advised us to tell our grandchildren that grandma is poorly, Andy has called their support team a couple of times for a chat to seek advice, they've got forums too and its all funded by charity, throw in the Nurses too.... This charity is formidable, please read the link, you may not need them today or tomorrow but the facts are that whilst more people now survive cancer than die from it more people are being diagnosed with cancer each year too, one day if you haven't been touched by this beast yet, you or a family member or friend will be. Be it coffee mornings this September or be it a bucket being 'rattled' (lol collectors are NOT allowed to rattle buckets or tins at you any longer) at you outside a supermarket, please bear in mind how much this amazing organisation must cost to run. Check out the link below please and well if you can either do something or donate, every penny counts to every charity and I can testify to the amazing work and high standards your donations help deliver.


http://www.macmillan.org.uk

Dedicated to Jayne and her Macmillan colleagues at Arrowe Park Hospital..