Update end of week 1 radio/chemo

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Hi all! 

I hope you are all doing well.

It's been three weeks since I last posted and I've read everyone's lovely well wishes for Paul and myself, so thank you so much. 

The last two weeks have been hard for a variety of reasons.

Paul had a failed RIGG procedure on the Monday two weeks ago and then had to go back on the Thursday for another.  The whole thing was really hard and quite traumatic for him in how much it hurt (I won't sugar coat this) it hurt for Paul because they had already pounded his stomach and filled him so much with air on the Monday so he was then bruised for when they tried again on Thursday and even then they struggled to get the whole thing in without a lot of brute force and pain relief! He's had issues with it since then and after only 3 days one of the buttons which was over his right rib popped (Monday last week) and we ended up in A&E that night)  and they were useless.  He was finally seen on Tuesday after a whole day of chemo and then waiting for radio and then the Nutrition nurses looked at the RIGG and removed the other two buttons only a week into the procedure.

It all went tits up with patient transport on Wednesday and they left him waiting after his radio for over 3 and a half hours before he was finally picked up.  If I get told one more time that we can't let Cancer rule our lives then I think I'm going to scream!!! When you are trying and then things like this happen it's really frustrating to say the least.  

He's now had a whole week of radio every day and one day of Chemo and he's wiped out.  He's got hiccups and heartburn already from only one day of Chemo which apparently is a side effect.  Sleeping a lot already and today he's been really upset about how it's already bringing him down, along with constant reminders to take pain meds and all the extra medications and ensures in the house are driving him nuts.  He feels really emotional that it's affecting us as a couple and me as well.

We have the PIP form and lord people weren't joking at how awful this form is.  We have an appt on 9th Dec to get some help from Citizens Advice at the MacMillan centre in the hospital.  

Financially we are trying not to panic too much at the moment.  I lost my sh*t at work yesterday over something someone had done to my stuff on my coach and just broke down.  Work have now arranged for me to actually get some proper driving time during the day along with my college runs so that at least on the days I'm at work I am earning more money per hour etc which is going to help.  

I hate hate not being at home for Paul especially when days like Wednesday happen and he's just left waiting for hours when all he should be doing is being at home in the warm and comfort of our home and not sat on a crappy waiting chair in hospital.  

Apologies for venting but needed to get all this out! 

I hope everyone else is having a good week.  

  • Hi LadyAH

    Sorry to read that you are having difficulty with the feeding tube, others have had a rough time but they can be a life saver. .. hopefully things will improve soon. The steroid Dexamethasone given as an anti emetic during chemo causes hiccups which can be miserable....I found that sucking ice cubes helped.. .. things usually get worse before they get better.... stick with it. . .Hard going for both of you ....make sure you get 'me time' you will need the space....I always made sure my wife got a breather....and a bottle of Cava.

    I could be difficult, moody, non complaint and a host of other negative things.. .. but it does pass. .feel free to vent on here at any time.

    Take care 

    Peter 

  • Hi LadyAH,  no need to apologize have a good old rant anytime you need to. It can be a very stressful emotion time during treatment, but this time will quickly go, then he will be on the road to recovery. Keep his team updated with any side effects he gets, they will give him something for them.

    Ray.

  •  Sleeping a lot already and today he's been really upset about how it's already bringing him down, along with constant reminders to take pain meds and all the extra medications and ensures in the house are driving him nuts.  He feels really emotional that it's affecting us as a couple and me as well.

    Give him a huge hug from me and one for you too. 
    Tell him from me that being so out of control is hugely difficult but it’s only a few weeks. If he can find a little peace and acceptance of it all and let it wash over him he will find a way to do this day by day. 

    Can you organise a rota for his meds? 
    I did make a list which I put up in the kitchen and my husband took it over. I didn’t have to remember anything. He suddenly appeared with whatever was needed. There were a few times when I told him to bugger off Joy especially when I had to bolus feed. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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