Progress – One Little Word That Sums Up My New Life At Home
Wow. What a day. What a few days and what a few weeks it’s been. I’m not sure if I’ve got the energy to finish this blog but it’s now over a week since I’ve been home and I’m desperate to write an update so let’s see how this goes. There’s certainly a hell of a lot to say.
And that’s because life couldn’t be much further away from ‘normal’ right now. Every single day brings a new challenge that neither I nor my family have faced before. But we’re getting by. We’re coping. And more than that, we’re making real progress each and every day.
Yes, it’s tough. But we start each day with a deep breath and a smile, and we end it by telling each other we love each other and that tomorrow will be even better than today. That we’ll make even more progress. We’ll get there, we’ll figure it all out.
And ultimately, we’ll make life count.
Today is Friday. And it’s not been your usual chill out, taking it easy, waiting for the weekend-type Friday. It’s been absolutely manic – that’s the only word for it. Tomorrow’s the weekend – and therefore I won’t be able to contact lots of the healthcare professionals I need – so every single person in my team of carers has either been on the phone or at the house.
I need their help and of course, they’re all bloody brilliant, but the problem was that they all decided to get in touch during the hours of 11am and 2pm. It was crazy! The house phone kept ringing, the doorbell was dinging and – thanks to the fact I hadn’t washed yet – I was minging!
But before I get into too much detail about what’s been happening over the last few days, let me summarise the changes in my life post-surgery. In my last blog I told of how the surgeon got more of my spinal tumour than he expected. And that was great news. But the fact remains that my legs have been heavily effected by what’s happened over the past few weeks and months. Whether they’ve been damaged long term or whether it’s just from the surgery we simply don’t know. But the fact remains that they have been damaged. They are weak and I can’t stand up properly yet, let alone walk. My knees snap between an extended and hyper-extended position, while my feet feel numb, cold and lacking in circulation. Not only that but there’s still numbness and a lack of sensation in certain areas. It’s simply a case of pushing on with life and seeing what happens.
But what it all means in practice is that upstairs is out of bounds. The amount of equipment we’ve been given – and all paid for by the incredible NHS let me just say – is insane, and getting used to it has been an interesting experience. Our biggest gift has been an electric hospital bed that now sits in our living room (in front of the TV, of course!). And that is now where I spend my days. Yet our living room was – until last week – covered in carpet, which is something I was worried about due to the equipment having wheels to get me about.
The solution? Bring in your fiancée Gemma’s Super-Dad! In a DIY SOS-type move, future father-in-law Alan called in his reinforcements and, literally 12 hours after I asked him if it were possible, our carpeted living room became a laminated living room. It showed, yet again, how well people come together in times of need. It’s happened time and time again and we continue to be amazed and astounded at how generous people can be when they just want to give someone a helping hand. In fact I have been amazed at how well my family have coped with all this. Gemma, my mum, dad, my sister Sarah – they have all been simply incredible when it comes to helping me get by. And the messages of support both I and they have received really do mean the world to us. Thank you.
The new home life all started after I was discharged from hospital a week last Thursday. Gemma’s family came round along with my sister and her partner and we just had a lovely little get together to celebrate the move. Gemma had helped set up my room with pictures, banners and balloons and it was a good first night, especially because what followed was a difficult few days getting used to our new situation.
Not that I want to make it sound like we’re struggling with that new situation because we’re not – far from it – but there have undoubtedly been problems that we’ve had to face up to. One of them has been the amount of pain I’ve been in during the mornings. It’s frustrating because by the time I get going I’ve lost half the day but it’s just been something we’ve had to deal with. The pain is in my spine and is basically post-surgical but it’s enough to stop me in my tracks. I sleep on my back and struggle to turn onto my side so it’s only natural that I’m going to wake up stiff and sore.
My pain levels have definitely improved in the last few days to the point where I haven’t required any Oramorph – quick acting oral morphine – which is a massively positive sign so we’re getting there. Hopefully in the next few days I’ll be able to get out of bed earlier in the day. We’ll see.
But what it has meant is that I am still in bed when the district nurses come to our house around 11am. They’re a great bunch of nurses and it’s brilliant to have some reassurance every day that things are improving and going well. The main reason they come is to help with my painkillers, as I’m on a special type of morphine that goes through a machine and needs to be checked every day. They also check the dressing on my back and check the surgical wound is healing. They tell me it is, and soon I might not need any dressing at all.
Today there was quite a lot to do so they ended up staying for about an hour. And then didn’t it all just kick off for the next three hours! Earlier on this morning – not knowing the carnage that was to come – Mum had emailed The Christie Hospital in Manchester to give my doctors an update as to how I was doing. And they were the first to make their move in the bombardment that was to hit us, although to be fair this particular bombshell was a brilliant one.
My amazing doctor up there called us and said he wanted me to come up and see him on Tuesday. As in this Tuesday! He said he had been thinking of me all week and wanted to pass on his best wishes. A typical comment from an amazing person who is part of an amazing team up there.
Of course, Tuesday is too early to go up to Manchester, and after two more phone calls and emails the appointment was re-arranged for the following week. However, the issue wasn’t quite resolved there.
We haven’t had a chance to get me out in the car yet and although I’m hopeful of getting out soon it is a big step – especially with my pain levels being where they are – so we arranged for specialist transport to get me up north in one piece. After all, I need to get up to Manchester. It’s where my main care is based and where I’ll get my treatment so it’s vital I get up there as soon as possible.
I don’t know exactly what they are going to do with me but I assume they will put me on a type of drug called a TKI. It won’t cure the cancer but the hope is that the tumours will at least stop growing for a certain amount of time. I need some respite and time to get back on my feet, literally, so we’re hopeful that I can get some time to gradually improve my legs and back.
But back to today. The phone went down with a plan in place. And then it was picked up again. This time it was the GP, who ended up phoning twice for different reasons. Calls from two separate Macmillan nurses followed – something that is always hugely welcomed – to check my progress and then an Occupational Therapist visited the house to check on two new pieces of equipment that had been delivered. She stayed for a good 20 minutes before we had two calls from family and friends – again something that is of course always welcome.
Somehow, in the middle of all this, I managed to fit in a trip to the toilet and a wash – two things that, believe me, are not very simple right now. And that’s something that cannot be understated. Every single task that I took for granted before my surgery is now a test of patience for both me and whoever is helping me. Whether it be getting out of bed or getting to the dining room table for a meal – every job is a difficult one that requires planning and patience.
To help show just how different life is now, at the bottom of this blog I’ve added a nice little picture gallery of all the equipment I now have to use. Check it out!
Getting help for simple tasks is something I’ve had to become used to. In hospital I obviously required the help of the incredible nurses for every job going. I even needed to be washed in bed which, for a 27-year-old lad, was tough. Only with the nurses’ help and reassurance was it made easier for me to deal with.
But they weren’t the only ones who helped make life easier for me while I was in hospital and it’s at this point that I do something I’ve never done before on this blog – name-check someone who isn’t a friend or family member. There were undoubtedly times in hospital when I struggled. Tears were shed, pain was suffered and life was definitely a struggle now and then. But that all changed when two particular nurses showed up at my bedside. Both of them work for Macmillan, and their names are Tracey Beasley and Audrey Hopwood. Tracey is a Palliative Care Clinical Nurse Specialist while Audrey is a Neuro-Oncology Clinical Nurse Specialist. And they’re both heroes of ours now.
They would show up every day, without fail, to offer advice or simply listen to any concerns we had and act on them. On one occasion Tracey showed up at my bedside at 8am offering to get me a full English breakfast from the hospital café and bring it up for me – I kid you not!
So it’s important to me that I publically thank them – along with Sharon, Amy from Ward 53 and the staff on all three wards I stayed on at Coventry Hospital – for all their support and care. It meant the world to us then and it still does now. And to everybody else reading this – remember who they work for: Macmillan Cancer Support!
If there’s one word that would often get used more than any other during my chats with Tracey and Audrey, it’s this one: Progress. And it’s a word I still use more than most now. Because that is my aim. To make a little bit of progress each and every day. To do something today that I didn’t do yesterday. A few days ago I managed to pull my body back up my bed without any help. That was real progress. Today I managed to stand up on a piece of equipment for at least ten minutes without any help. That was real progress. And it brought a smile to my face.
Tomorrow? Who knows? But I’ll find something. Because without progress, what’s the point in life? My goals each day might be different to that of everybody else, but the point is the same. Because if there’s one goal we should all share in life, it’s to make a little bit of progress each and every day.
Thank you for reading x
*UPDATE* – The weekend has now passed and I have made more progress, although I am struggling with more pain and discomfort – this time from my stomach and ribs rather than from my back. Yes, we have our difficult days – but I’m still hopeful of further improvements over the next week. Fingers crossed! X