The Mainstay & Co.

On the 16th of December, (the date of the appointment my wonderful GP had referred Dylan for) in the early evening & just before we went home, having spent the entire day in the dental hospital trying to work out why Dylan had a swollen cheek we were introduced to a senior paediatric consultant. He was absolutely lovely, so mild mannered & gentle. I remember him saying “it looks like Dylan will be under my care”. By this point I understood that Dylan was seriously ill but I still did not know exactly what was wrong with him. Earlier that afternoon another senior consultant had uttered the words “what is the worst thing you can imagine?” & I had fallen to my knees. However, I still knew that there were lots more tests to be done & I think a part of me thought that once the tests had been run then someone would tell me that it was not cancer.

I was hoping against hope that there was still a chance that my son did not have cancer.

I remember my first exchange with a nurse, it was when I took a call that very evening after we had first been alerted to the potential gravity of Dylan’s still undiagnosed illness. The voice on the end of the line was very calm & softly spoken. She said that the consultant we had met earlier had asked for Dylan to go in that evening because “he needed hydration”.

I thought it was so strange, he had been drinking water all day & could not possibly be dehydrated but of course we took him in & that was when we took our first walk down that long corridor.

As we walked I saw the sign that read “Children’s Oncology”…I had to google the word oncology & even then I still had not quite grasped what on earth was happening.

A friendly nurse took us into Room 9 & Dylan immediately jumped on the bed & started playing with the buttons that move the bed up & down.

I would not say that I was in shock by this point, more emotionally suspended. Within the hour Dylan had a cannula fitted onto the back of his right hand & started to receive “hydration”.

The next day the consultant returned & took us into a small lounge whilst a nurse watched Dylan. Another nurse was in the small lounge with us & as the lovely mild mannered consultant found the words to tell us that our son has cancer & that they needed to run tests as soon as possible to determine what type of cancer it was, I was acutely aware of the nurse. As I was taking in the news I thought she must be there just in case one of us loses the plot & has a massive breakdown. Neither of us did that, instead we listened calmly, gripping each other’s hands, half nodding & half shaking our heads (I still shake my head today…regularly). I later learned that the nurse was there to listen to what the consultant was saying just in case we had any questions once he had gone.

In the five days waiting for the definitive diagnosis Dylan was subjected to all sorts of tests & procedures; throughout it all we had a nurse by our side, a consultant on hand & the gentlest of care from the staff.

It was Christmas so the ward was draped in decorations, Father Christmas visited, famous football players popped in to say hello, the Welsh guards even made an appearance.

There were play therapists on hand to distract Dylan & to help explain to him in simple terms what procedure he would be undergoing next, talking him through how the MRI scanner worked, giving him a choice of film to watch whilst he was in said scanner for over two hours.

There was a playroom filled with toys & games & lots of bald children with cancer.

There were the porters who chirpily wheeled Dylan in his hospital bed from one part of the building to another, or who pushed him whilst sitting on my knee in a wheelchair to get to the X-ray//CT scan department. I remember bumping into one of the porters months after he had taken Dylan to one of his many procedures & he stopped me & asked “how’s that little lad of yours doing?” I was so touched that he had remembered us.

There were the ladies who brought up the breakfast, lunch, dinner & snack trollies & would then come in quietly to remove the trays of often uneaten food from Dylan’s room.

There were the cleaners who would gently knock on our door before they came in to quietly clean the room & empty the bins all whilst trying hard not to disturb us.

There was a television in our room, a game station, a pull down bed for me to sleep on (although I spent the first fifteen nights we were there in Dylan’s bed just holding him)…I barely slept.

All the while the nurses would be in & out either to administer medication, take Dylan’s temperature, blood pressure & heart rate & to check to see how we were doing.

I remember one night, coming out of Dylan’s room & just bursting into tears. One of the nurses took me to one side, gave me the biggest hug & amongst other things told me I could do this…I will never forget that.

Months later whilst we were waiting in the clinic to see a consultant before Dylan had yet more chemotherapy, I remember seeing that same nurse rush past holding back tears. I later learnt from another parent that one of the children she had been looking after had passed away.

There were the clinical psychologists for the parents. There were the physiotherapists for those children hit by the side effects of chemotherapy. The were the pharmacists, the haematologists, the surgeons, the anaesthesiologists, the radiologists. There were & obviously still are so many people involved in looking after Dylan; all involved in trying to make him well again; all involved in treating his cancer.

Our hospital is one of nineteen principal treatment centres within the UK; they specialise in childhood cancer. We are very lucky to live so close, many of the patients live hours away but there are amazing facilities provided by the charity Latch where families can stay upstairs above the ward.

Dylan is now an outpatient so is treated in “daybeds” which is on the same ward but he is looked after by a different set of nurses to the ones where the children are admitted. Each time we go in, many of the nurses pop down from inpatients to daybeds to see him & spend time talking to him & us.

Daybeds is busy, sometimes the lists are too long to see everyone so they have to reschedule treatment for some of the children who are on maintenance.

The nurses are incredible; I honestly do not think I will ever find the words to properly do them justice. They are the mainstay of Dylan’s care. They have to deal with very ill screaming babies & children, they have to deal with the gravely concerned parents of very sick children & they also have to prepare & administer a plethora of different medications & chemotherapies amongst millions of other things. Whilst they are doing all of this & more, they are constantly smiling, constantly cracking jokes, constantly making the children laugh & constantly making sure us parents are all ok too. The complexity of these skills is endless; it is an invaluable asset to be able to do all of this at once & remain so professional.

I remember being on daybeds with Dylan once & I was just so overwhelmed with emotion that I had to leave the ward, a nurse clocked me & followed me out. As I sobbed heavily on her shoulder I said to her “I don’t know how you do this, how do you do this day in & day out? How do you manage to keep it together with so many seriously ill children here?”

She hugged me & said “We do it because we care about these kids, because we want to make them better. We do it for you.”

I know the NHS is in a diabolical state…I think we could all discuss the reasons behind this forever. What saddens me is that all of the people I have mentioned here & many more are managing to keep my child & millions of other people alive whilst constantly being on the back foot.

Incredibly (& of course I can only speak from my own experience) they all seem to manage it with smiles on their faces & genuine care in their hearts.

On the 5th July 2018, the NHS turns seventy. Apart from giving birth twice my visits to hospital were far & few between. Since Dylan’s diagnosis I have lost count of how many days & nights he has spent in hospital, being cared for by an unbelievably talented, committed & caring group of people.

I am eternally indebted to the remarkable efforts that each & every one of these people make every single day.

9 thoughts on “The Mainstay & Co.

  1. What an emotional post. Brought tears to my eyes, how all the different medics and hospital staff are there for Dylan and the rest of your family, Also your very true comments about the NHS turning 70 this week, and the staff doing everything they can with gentleness, kindness and a smile, or touch from their hands. I won’t applaud you, because, having read all your posts, I don’t believe you would want that. But I will tell you that you are one inspirational woman, who is able to tell your story so clearly and with feeling. Your wonderful son has the best chance that modern NHS medicine is able to provide and we are very lucky to have that facility in Cardiff. Stay strong, I often think of you all as I wait for the next post. xx

    Liked by 1 person

    1. I don’t think I will ever be able to verbalise my gratitude or respect for those people who’s care for Dylan…the majority of whom we have never met. It is the most humbling experience knowing that so many people are involved in saving just one life…let alone the thousands of others I have little idea about. The staff are the NHS to me & it riles me that behind the scenes they have such a tough time but on the face of it their professionalism has been unbelievably wonderful. I honestly believe that Dylan is in the best place possible & with the best people possible. Thank you so much for your comment & thank you so much for reading…it means so much to me, it really does xx

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      1. You’re very welcome and I couldn’t agree with your sentiments more. Although I don’t know you, I know of you through my own work. Whatever I do (or don’t do) in my job (admin/management), nobody will die as a result. But the frontline staff,and other medical staff? They are under very real pressures and any mistakes could be costly, but it’s the gratitude and thank yous that they get (as you rightly observed) from people like you which keeps them going. I wish you well as you fight Dylan’s battle with him xx

        Liked by 1 person

  2. Siobhan you have hit the nail on the ahead…. and made me cry …. again! We are so lucky to have the NHS. The whole team responsibile for Jack’s care in two of those top principal hospitals for Oncology have been awesome. Even when we moved from one to the other the referral was managed incredibly well. I love how they notice the parents and check in on us too, I always say to Lee what we experience is above and beyond their call of duty and I am forever grateful. Thanks for sharing this, it’s made me feel all fuzzy! X

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  3. I know documenting your journey is both hard and healing and I really appreciate the posts you share for the love and courage and awareness raising they show. Now that I feel we know you and Dylan a little bit it’s all the more moving to read your stories – I can just picture him bouncing on the bed raising and lowering the back rest with the remote control! We are so lucky to have a wonderful NHS service and I’m thankful that you have an excellent hospital nearby to take some of the travelling strain out of your visits or needing to pop down when Dylan suddenly catches a bug. Your post is a beautiful testimony to the care and dedication and love many NHS staff have as their reason to rock up for work each day. I’m going to share your post with our hospital trust as I feel the same about not only the care I’ve ever received as a patient but the amazing care my Mum receives from the Oncology department here.

    Liked by 1 person

    1. Oh thank you so much. The staff at the NHS are nothing short of incredible & continue to be so. I had no idea that your mum is under the care of an oncology department; I sincerely hope things are going as well as they can be for her & you…it’s a tough place to be but like I said, the staff make is so much more manageable.
      It would be great if you share my post with your hospital trust…I have so much admiration for them all x

      Liked by 1 person

  4. You had me in tears there! Thank you very much for sharing what seem a difficult path with us. Watching and seeing your Dylan on IGbhas strengthened my faith as well as my pride in being a nurse in the NHS.

    As a Zimbabwean living in U.K., I can’t express how fortune we are to have the NHS. In my home country healthcare is private and treatments are scarce.

    May you continue to find strength and comfort in your journey. 🙏🏽♥️

    Liked by 1 person

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