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| Before this all began... |
It's another important month in terms of milestones... 12th August 2013 was the beginning of the end, the date of my first tumour operation, The 20th was the day I was inadvertently 'told' I'd got cancer, The 21st The day my world came crashing down, the day I was told, "You will succumb to it", the 22nd Was the day I found out that I was to start Radiotherapy & Chemotherapy. It's been a busy two years! 3 tumour operations, a lot of sadness and suffering but a lot of joy in these two years, I never dreamt I'd be here now. In the early days I refused to be told how long I had but I'd barely been home a week and had discovered what Andy had already read up on but was keeping to himself, namely that 14 Months survival it was going to be, 'if I'm so lucky' yet I'm about to 'celebrate' the bizarrest of anniversaries, my second. Fluffs done his best to try and rob me of this and I know I've 'just made it' but sod you Fluff, two years it will be!
Back to the reality of real time. Birthdays, Cards & presents were always my domain, I'd hand make cards, I'd spend hours making those cards so special for everyone close to me, sadly I've made my last greeting card, *Sigh.... It's these little things that fluff has robbed me of most.
Health wise, truth be told I am not good, I am fighting but I also know I am just existing now but I still want to be here I won't give in yet, I'm not sure I ever will, logic says I should end my misery but a combination of fear and not wanting to lose Andy, Maureen, my children, grandchildren and friends, I know in some cases holding on is causing distress to Andy in particular, he's walked this path with me he, copes with my deterioration, my loss of movement, my independence, he sleeps on the floor besides me most nights on a blow up mattress, I wake him most nights to be moved or for a drink or to check my catheter, to give me an extra blanket, to get me out on to the commode, its a two man job at the best of times but on the odd occasion he's rolled me into it and hoisted me off the bed and on to the commode on his own. He's then well to put it bluntly wiped my (oh so sore & tender) bum for me got me back into bed and then had to go and empty an often smelly commode then it's back to bed for a few hours before Maureen takes over as he has to go to work. Maureen too, I know she will be heartbroken when I've taken my last breath, we spend more time together than most married couples do and I realise at times I am hard work, very hard work. I almost feel like I should apologise for fighting on but this desire to survive is built in to me and I cannot do anything different, one way or the other though people close to me will end up hurt and in tears..
Talking of health and tears and fluff and August. August is just hours old and Fluff is at me again via my catheter! A week earlier i'd had problems, the nurses tested me and on top of everything else I have a urinary tract infection that has to be treated by an antibiotic called cephalexin, the pain of the infection makes you feel like you are peeing broken glass even with a catheter in, the tests from the previous week also revealed I have an underlying infection abbreviated to ESBLs, IF this thing goes rampant I probably won't make my second anniversary, I'll leave you to google it. There is a chance I have what they call a colonisation of it, basically I could be a carrier and not be infected or affected by it, don't worry unless you were, hehe washing your hands in my pee you won't contract it from me... In terms of my spirit its one thing after another, this really drags me down and makes me tearful. Andy had been informed by my GP about it, he knew the day before me, he'd thought overnight about whether he should tell me, he knew how I'd react and he was right... On Saturday 1st, Andy sat down with me and explained ESBLs to me, "So that's it, it's going to kill me?" these were my only thoughts, Andy reassured, "No, it's highly unlikely you'll even know you've got it, to be honest I knew you'd fret and almost never told you but you have a right to know", he went on to explain how or rather what he thought would probably be the cause of my demise but let's not labour on this.. My head struggles with rationalising things these days. Back to the infection and the catheter, Its early on the second and by 09.00 I've had three teams of nurses out to me during the night, I think Andy has surrendered the idea of sleeping 'tonight'.. The catheter was blocked then seemed unblocked, then a while later its not working! The second time it's flushed again and it's flowing 'fine', within half an hour though it's obvious it's blocked again, I just break down and cry, I am so tired of these blockages and I'm frightened, I do not want the tube changing for there is an increased risk of infection, this scares me, I am at my wits end by eight its blocked again, at 09.00 it was unblocked and flowing really freely as in I peed almost two litres in twenty minutes! It's all pain, it's all stress, it all has me asking Andy to make the pain go away by me asking for a small dose of morphine, this is on top of the morphine in my syringe driver, it's referred to as a top up dose. By mid morning the nurses are back out and I am resigned to the catheter being changed. Fluff, leave my lower bits alone! Its bad enough you're in my head without causing me problems elsewhere!
I've got a surprise! Andy told me on Saturday that Eve from goggle box wanted to come back and see me on Sunday! She had kept her promise to come back to talk vintage to me, this makes me smile. I've got a surprise for her when she comes IF she's not offended by it. She and her boyfriend Josh are calling before they drive down south. I told Andy to go raid my wardrobes for all of my Cath Kidston dresses and my Vivien of Holloway Collection, all vintage style dresses. Eve is so passionately 'Vintage/Retro', I cannot get in to my dresses any more so I'd love it if Eve can fit in to any of them so she can choose a couple. Andy cobbled together a stir fry with a variety of dipping sauces as Eve and I chatted and she admired my dresses, Andy had utilised the hoist as a giant coat hanger, Eve chose a few and she popped up to the green room to try them on. Success! she got in to two including one of my Hell Bunny dresses, Eve was thrilled to accept the dresses and a cardigan, I am so delighted, I told her I was as jealous as hell, as green with envy as the one green dress she wore! I miss being girly and swishy. There was one dress that never came down stairs, I already know what I am going to be wearing on the day of my funeral even if it has to be modified, hehe most who know me well won't be surprised to hear this revelation.. It's time to wave Eve and Josh off, I'm watching them from my bed as they go, I've told them "Hands off Maureen, you can't have her", everyone loves Maureen, everyone want to adopt her!, well she's mine and no sorry you cant have her (yet)....
I'm going to pass you over to 'The Lord of Shute Manor' hehe, he'll only sulk if I don't let him throw in his five minute's worth hehe.
She may be dying but her bloody cheek isn't lol, in the last week since they've tweaked Julie's syringe driver drugs, a little bit of the cheeky little Miss with a wicked glint in her eye has resurfaced, I've missed it, the odd laugh and her sharp wit, they're all for the memory bank now.. The downside is mine and confirmed by medical opinion we are sadly at the stage where Julie's time is measureable in weeks not months, it's a harsh reality for me and as Julie's mood is so good I have no desire to destroy it and all she'll do is shrug her shoulders and probably see it as a challenge.. I am about to blow the smile right off her face though and I am dreading the conversation, the expression it never rains less it pours could not be truer...
I've had a call off our GP Andy Lee, You might recall I mentioned Julie's blood tests in hospital showed her haemoglobin was slightly low, the A&E Dr wrote to Andy and asked he have follow up blood tests done. He did and now it was bad news time, Julie's Haemoglobin count was bordering on critically low and she needed a blood transfusion... Before I asked a few more questions, I felt from recent discussions Julie was not going to go into hospital for this without a fight. I asked "how low are they Andy?" "She's at 81, she should be at 130-140. Will you call your Oncology team and arrange for them to transfuse her?" I just responded "I don't think she'll agree to this Andy, she's had enough of hospitals now, I'll try and persuade her but I'm not hopeful and yes I understand the consequences if she declines" The next conversation is when the dawn of realisation comes in. "Let me know if the answer is no, I'll have to come out and examine Julie and document her refusal and we'll have to let nature take its course"... I drove home running the conversation through my head, it's a salesman/negotiator's thing pre-empt the conversation ahead, understand the objections you are likely to hear and have solutions ready if possible".. It was a bloody lonely and long drive home...
I walked in the house Mum, Mother, Maureen was sat in the recliner chatting with Julie; I gave Julie a kiss and a hug, I froze the TV screen and I stood at the bottom of the bed... Calmly I explained the conversation I'd had with Andy Lee in so much as You need a blood transfusion and here is why.. "Will it be done her at home?", here we go... "No Hunny, it has to be done in hospital, I've got to ring Clatterbridge in the morning, your count is critically low and it's this that has been causing your shortness of breath, a transfusion will make that go away".. Well knock me down with Miley Cyrus's wrecking ball! "Ok" came the response. Now here is where the smart negotiator shuts his mouth and doesn't say another word. Too many people love to keep talking and you know you can sell someone something keep talking and end up talking them out of it inadvertently. I've got 'my' result, I celebrate by giving Julie a kiss and went and made a drink thinking 'Jesus how did that just happen?'
The next day and I am as gobsmacked in the opposite direction as I was to Julie's ready acceptance... No she hasn't changed her mind, she wasn't given the opportunity to...
I did as my GP Andy Lee had instructed, I called Julie's Oncology team at Clatterbridge, Sadly Helen who was our main contact and specialist Nurse was on holiday so I was transferred to the Triage Team who cover day to day matters.. The blogs are a 100% true reflection of Julie's journey, I tell it or we tell it as it is, long winded at times but truthful. You'll all know of our fondness and my eternal gratitude to Clatterbridge and the team's who have dealt with Julie. It's with a very heavy heart that I type this next overview but it's done to highlight a major problem and to hopefully create change for the better. Had Helen been about we would have had the same outcome but it would have been handled much differently than it was. There is a lesson here, thankfully where others may have reacted differently I haven't followed through on this or there could be serious financial consequences. Let me explain the events as was.
Triage is manned by Nurses, the lady I spoke to, I explained my GP had requested I called and we arrange a transfusion.. After a short wait the phone line picked up and the (very polite) lady explained she's spoken to a Doctor and well (apparently) they don't do transfusions at Clatterbridge, "so you need to speak to your GP..". When Julie had her Radiotherapy and chemotherapy her bloods were done at Clatterbridge for if any levels were low she'd have needed a .... transfusion, it was a given this would be done at Clatterbridge, no one ever said different, personally I believed under such circumstances transfusions were done at Clatterbridge but what do I know? What I do know is lol Julie needs a transfusion and I feel I am being fobbed off.. Like that is going to happen! I protested saying so far as I was concerned our GP referred me to her Oncology team for a transfusion not for them to refer me back to him, Julie needs a transfusion urgently, 'what Julie needs Julie WILL get'.. I said I know what my GP will say when I call him back and all of this will delay Julie's treatment and quote "If Julie's treatment is delayed and this is detrimental to her health on someone's head it will be" ... "Err could you hold the line please?" I smile, there is a rethink going on... Suddenly a new voice on the phone, hmmm tone isn't friendly, "How can I help, I'm xxxx I'm the Senior Nurse Practitioner (am sure that's how she described herself).. I repeated my piece above and patronisingly from my perspective it was very, very similar to this as a summary. "My colleague told you we don't do transfusions here you need to call your Dr and arrange it its nothing to do with us" Hmmm "OK, so did you discharge Julie as a patient then and not tell me?""err No I am not saying that, but we haven't treated her since March"
Me: So she's still your patient still has cancer and now you're refusing to treat her?
NP (Nurse practitioner) Err I didn't say that...change of topic anyway YOUR GP SHOULD NOT HAVE told you to call us!
Me: If you have a problem with my GP and his 'signposting' then take that up with him not me but it changes nothing.
NP: Yes I WILL! He had NO Right to tell you to call us!
Me: So the transfusion?
NP We do not do them here! We are going around in circles.
Me: OK Well as I told your colleague, IF this dancing around and being referred back to my GP delays Julie's transfusion and is detrimental to her health on somebody's head it will be and I will refer this to the Commission for Quality Care (CQC) and I will refer this to the local CCG (Clinical Commissioning group - who fund treatments/hospitals on a local basis)
NP: I do not appreciate being threatened.
Me: I'm sure you don't and I did NOT threaten, I explained to you the consequences of a detrimental delay, I will relay the facts of the three conversations by way of a statement in a formal complaint, that will be the conversation with my GP, my conversation with your colleague AND my conversation with you, these bodies will investigate my complaint and they will decide if or not and who or not will be accountable, I have just made you aware out of courtesy of my next moves.
NP: This conversation is going around in circles, I am calling your GP!
That was the end of the conversation.
Truthfully this woman in my view behaved in an obnoxious manner toward the partner and carer of a patient who WAS still under their care and who was now on a palliative care pathway, Not one ounce of compassion was shown just sheer bloody minded I'm right you are wrong arrogance. Despite my blood boiling I had better things to do than concern myself with this bitch! I will get Julie transfused and quickly.
Before I go on I'd say to any organisation and in particular Clatterbridge who rely heavily and fight like hell to get charitable funding that the people you have as public facing need to recognise every patient or caller is a potential charitable donor who could after such an experience deprive an amazing organisation of significant funds all because of a bad, smart arse frosty obnoxious less than caring and certainly NOT in a palliative care ethos kind of way bad ass attitude. As a family we have helped raise a significant sum for Clatterbridge as a thank you for them giving me Julie for longer, many of you reading this blog will have contributed on the back of us begging and promoting support, this one 'gobby individual could undo all of that in a five minute conversation!' I'm not but for all CCC know I could have been a donor with a £1m cheque in my pocket. I most certainly do NOT expect preferential treatment as a result of our fundraising and whether we had raised 15p or £15,000 people should NOT be spoken to in this manner! Listen up before this woman and her attitude costs you dearly... CCC Still have my/our support, but only on the strength of the relationship with Helen (who would have said, "Andy we don't transfuse here let me call your GP and we'll get it arranged, expect a call shortly"). Dr Brian Haylock, without doubt the kindest compassionate and expert consultant who has given us Julie for at least ten months beyond what I/we expected and on top of that add in the receptionists and the CCC team who we adore because they care! They've cried with me/with us, they've laughed with us, they care! and that's why I will carry on supporting them, on that note watch out for news of how you could win a major unique prize and help raise £3,600 for Clatterbridge Cancer Charity in the next week or so.
I'm leaving this blog here, the above point is so serious it needs reflecting on by Palliative Care teams & ALL charities not just CCC....
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