Due to the current situation we are in, my wife and I have been fortunate to meet some of the most genuine people you could ever meet. This post is in dedication to them, I can’t thank them enough for all their support. One of those suggested I write a journal to record our journey, it has never been my thing, but thought I would use this forum to log and share, even if one person reads this and experiencing the same issues, and seeking reassurance that it is all normal under the circumstances, than that is a positive.
My son is doing well in terms of his treatment, and sometimes that magnitude of the situation we are in fades into the background. Mainly during periods at home, and when he is well, the loudness of our life, and family can drown it out, I like that, it makes you realise we are bigger than Cancer, it is not defining us, it is just a very much unwanted guest, to whom departure can’t come soon enough. We will put up with it, knowing that we are making its life uncomfortable.
My son continues to make me proud. The saying that ‘children are so resilient’, could not be more accurate. I feel sorry for myself when I have a cold, and just want to rest up. Kids with cancer, just want to be what they are, kids. Its amazing the amount of drugs, blood withdrawals, transfusions, blood pressure testing in the middle of the night they put up with, I am yet to hear one of them complain. Makes you re- look at yourself, I tend to stop before I complain now, and for those who know me, know I like to moan, I think that we men feel it is our right as we get older.
I find staying in hospital on the Paediatric Haematology and Oncology ward a mix between a bubble of comfort and safety to a strange feeling of suppression. You can occasionally forget Cancer at home, when you are on the ward it is all around you. I find even looking at the doors of the ward the opening to a place no one wants to be, yet behind it an amazing world of incredible people, along with the bravest little people you could ever meet, I just wish they did not have to be there.
On our last stay, I met another brave little lad, 3 years of age, and shared a bay with him and his parents; it again humbles you, and makes you feel lucky. Although my son has Leukaemia, he is responding well to date, that’s not to say we don’t have days where he is physically ill, or struggling emotionally with it, he is 10 years old, and trying to make sense of an already complicated world without needing the complexities of such a nasty diagnoses.
Re lapse, is a new word to us, that sends shivers down our spines, sadly that is what the amazing little lad we shared with now faces. On talking to his parents and the treatment and journey they have ahead, puts a different perspective on our own fight. My heart goes out to them, and others having to face the same battle. To get to maintenance, and then find out the cancer has come back has to be the most crushing thing ever, to learn your child has cancer is gut wrenching enough, to hear it again is something I can’t begin to imagine.
I am learning so much about people in this un chosen situation, I would never have learnt before. Strength from others, friends and family and the local community to which we live, the parents we meet in the same situation, dedication and commitment of the specialists, doctors, nurses, play workers, teachers on the ward, social workers , entertainers that strive just to make the sickest of children forget about it all, even for a moment, it is magical. There are not enough words to truly show my appreciation and gratitude to them all, it is something I don’t think I could cope with daily, yet they all do with a smile on their faces. I often see staff I speak to due to finish at 7pm, and are still there gone 9, then back in at 6.30 to do it all over again, never stopping. If anyone wants to complain about the NHS, I would suggest they go on to the Paediatric Haematology and Oncology ward first. They may not complain after that.
Anyway, we will continue to fight the battle we have, remain strong as a family, and look forward to getting the all clear, Our thoughts are with all those parents in the same unfortunate boat, and all those effected by Cancer that may read this on this forum. Wishing you all the best and a speedy recovery. But finally, Thank you to everyone who supports those with Cancer, be it in a professional capacity or as a family member of friend it is so appreciated.
