Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@Enigma54 yes, the allergic reaction was terrifying and it happened almost instantly. The chemo unit doesn't allow visitors due to infection control but luckily, DD had traveled with me and was over in the main building working from her laptop. Your poor DH, it's so hard on loved ones too.

Yes, I had ondansetron and I think that was the culprit. I have had some diarrhoea yesterday and today, but don't know if it's the overdose of Laxido or the new chemo drug. I'll see how I am tomorrow and ring the chemo line if it's still going. With all the toilet trips, my bladder bleeding has got going more but nothing like it was before with the gushing and clots.

I've looked online and there is a dedicated PIP number for people with an SR1 form and it looks as though they just take the details over the phone. It doesn't look as though there is any form filling, I hope I'm right. I'm not sure I qualify for the mobility part though, saying that, I wouldn't have been able to walk out to my own car on the drive yesterday.

I totally understand your feelings over fearing you won't see your DD's next birthday, I've had the same feelings with everything being my 'last'. It's so hard isn't it. I am thinking of little else currently so I do understand xxx.

@Ohjoyohbliss I too am so pleased you're cancer free and also hope you stay that way for a really long time.

@Washingforweeks I primed some of those suppositories but had already done my manual evacuation by the time they arrived! I've set them aside for next time though, thank you for the suggestion. Could I ask please, where do you position it? I had a bung really near the exit so in this case where would I aim it for?

@Earlandmrsgrey I'm really pleased you've had such a lovely time at the windmill and such good news you've got a flush sorted for tomorrow. I know what you mean about feeling guilty when DH cries, I am a single parent and feel the same when adult DD cries, I feel so guilty that she has to go through this. There's nothing you can say though that will ease their pain and that's really tough xxx.

The problem you face with your Trabectedin is the one I've got with this Caelyx. I overdid the Laxatives massively (I think) but still don't know if it's the chemo. Last time was more straightforward as it was constipation all the way.

@balkanscot how are you feeling and how is DS? I've been thinking of you with the appalling digestive issues and mouth issues you had last time.

@Fantasea With the SR1 I just had to answer a couple of questions about mobility over the phone. I was honest with them and said that sometimes, depending on my pain levels and depending on the chemo and fatigue levels then I can walk over 20 metres but not over 50. I got 12 points for mobility and was then able to fast track for a blue badge with the local council. Today I have probably walked a total of about 3 miles ... I can't imagine I'll be capable of that this Weds/Thurs/Fri...

Yeah I was that bad. I started using them when I was pregnant and hadn’t had a bm in 2 weeks 🥹 just wet the tip with warm water )they are very slippy 🤣 put one leg on the loo one on the floor and gently push it in, once it’s about 3/4 of the way in it will just naturally go in. I try to get it as far in as I can. But when I was really bad and the impaction was low down they helped even just inside as the kind of melt what’s there and stimulate your bowel xx

@Earlandmrsgrey that's really helpful thank you, I have read you have to describe your worst day. Thinking of you for tomorrow and hope it all goes as smoothly as possible.

@Washingforweeks thank you for that, that's really helpful.

I started reading this thread when I had a bad smear. I had precancerous cells that got removed then luckily I’ve been all clear since. I’ve read since the beginning and seen people pass away. I’ve never commented other than the advice for the suppositories.
my step fathers for bowel cancer and he’s refusing all help. He passed out in the bathroom the other day the pain was so severe. But what can we do. We’ve all tried to tell him to go and get help if even pain relief but he won’t.
its such a sad tragic illness. You ladies should be so proud how you are carrying yourselves. Quad biking etc. I’m not religious at all but I do pray for you all every night x

@Earlandmrsgrey I found Trabectedin gave me constipation. So that coupled with the dreaded ondansetron, meant any kind of BM was a non starter! Obviously we are all different though.

@Washingforweeksyour step father must be made of steel? I mean powering through pain and then passing out! Won’t he entertain any type of pain relief at all?

I’m not religious either. I just rant and rave every so often (more often these days!) 🙈