A 6th Hickman Line for Rebel Rev

Hello everyone. I hope you are having a good day wherever you are. 

I’ve had a blessed day with visits so far from Emma, Aunty Pat, and Sue Hoad. I’ve still got my little skin and blister Gail to come. Ain’t I lucky? 

The latest from me is that my poor arms have turned into sieves and can’t really cope with the daily blood tests and cannulas needed. I am having a new Hickman Line put in tomorrow. I know that will be unpleasant, specially as it’s only been out a week. My 6th vascular surgery. Fingers crossed it goes smoothly. It will certainly help my poor arms so will be worth the pain and discomfort. 

I’ve argued before that adult cancer wards should have access to some of the treats that children’s wards have. A gentle neck rub or head massage is a lovely de-stressing thing to experience. A manicure or pedicure or reflexology is a lovely treat for some. When your daily routine involves things like being stabbed 7 times in a bid to give you access to life saving treatment. Being locked in a room the size of a prison cell and unable to get out either because you are infectious or you have no immunity or both for 24/7 for weeks on end is no fun either. 

Another hard aspect of being an inpatient is you can’t see your grandchildren as no children are allowed on the ward. 

Imagine each day living on a very limited food menu unless friends or family bring something in. 

Imagine sleeping on a rubber mattress and rubber pillow every night for nights on end. 

Imagine peeing in a jug to measure the fact that your kidneys, which have been affected by the toxic medication you’ve had to take to save your life, are continuing to work and not failing. 

Imagine having to poo in a bedpan and have others inspect it and send it off for testing. 

Imagine having your ob’s taken at 2&6am every night. Then lots of noise and cheerful people when you don’t normally start grunting hello till 10am. 

Imagine the impact of all this on your nearest and dearest and the pain and worry they have on their faces at times.  

Imagine how stressful it is to have an hours journey to visit the person you love. How tired would that make you after a long admission? 

Imagine that music and singing is vital to you and your emotional health as it’s one of the few activities you can still do and then you lose such a degree of your hearing from toxic medicines that you have to stop singing. 

Imagine ballooning in weight because of high dose steroids and having to buy new clothes. 

Imagine losing 22kgs because your gut has stopped absorbing properly and having to buy new clothes. 

Imagine losing your mobility when on the inside you still want to be the person who flew down the right wing so fast that no one could catch you when playing football. 

Imagine attending virtually weekly/fortnightly hospital appointments for years, sometimes 4 or 5 times a week. 

Imagine having to give up a job you love. 

Imagine coming in to hospital feeling relatively ok then ended up thinking about Dignitas because you now feel so ill from the toxic medicine you need to save your life. 

Imagine losing your social life because you now don’t have any energy or your immunity is too low. 

Imagine having to learn to take truck loads of medication a day

Imagine adjusting to feeding yourself through a tube in your stomach. 

Imagine losing friends because they can’t cope with how much you suffer

Imagine making new friends through the patient forums and regular out patients waiting rooms and some of them dying. 

Imagine living with Damocles sword continuously poised over your head. 

It’s for all these reasons and many more that I argue adults with cancer and life limiting illnesses need treats too. I’m fortunate and blessed to have so many great people in my corner. Some have no one. Ellie's Friends is one of the few places I can see that is offering something but it seems that is patchy. 

If any of you are entrepreneurs, maybe you’d think about setting up a business that fills this gap in the market. 

I write this post not that I want you to feel sorry for me. I don’t need sympathy. Empathy is welcome though. The reason I write like this is just to give you a glimpse of living with cancer and the consequences of treatment. It’s also to say thank you to Lyn and Richard for setting up some fundraising for me to enable me to have some nice treats. Those of you that have donated have already made such a difference to me. My spirits have been really lifted by each of you whether I know you or not. 

My intention at present is to get the new glasses I need. I think a massage might be in order too and when I’m well enough I think the love and generosity you have shown will pay for me to have fully covered insurance for a holiday into Europe. 

For now I will concentrate on getting through the line insertion and getting out of here and back on my feet. Thank you for your part in helping me achieve this.