Sorry I havnt updated in a while. It's been very busy and full on that I havnt really had a minute to think or write.
After I last updated on here I had a meeting with my oncologist who decided I would go back on chemo I'm on a different one now called folfiri this is due to the progression on my liver and lungs. It was agreeed that I would try a different line of chemo being as my last one capox is classed as harsh with the neuropathy side affects you can't be on it too long due to long term damage.
I was nervous about this. I had to bring a pump home with me and have it connected for 46 hours after being in hospital to have part of it for 2.5 hours this happened every two weeks . This ment I needed a picc line, this was the part scaring me I don't know why because everything I had read and been told said it wouldn't hurt. So I rocked up to the hospital with Scott knowing full well they most likely wouldn't let him in due to Covid so made him test like me so they couldn't say no. When the lady came out she said he couldn't come In I was on the verge of a panic attack so she said he could come in as long as he promised not to look at what was going on she had had someone who has passed out before and broke his jaw on the bed on the way down. Poor Scott must have been terrified he hates things like that anyway so absolutely would not look. I was so grateful that the nurse let him come in with me but actually thinking about if afterwards it was just the thought that was scaring me because it really didn't hurt at all. I had a quick x ray and was told it was all in place and I was good to go home. My arm felt a little tender for a few days but has been fine and I'm so used to having it now I barley notice it. The only downside is no swimming or hot tub and it a little awkward to shower but it's not painful.
I was due in the same day to have my chemo but my stoma wound hadn't healed properly I was still having to go to have it packed and dressed every other day. So I was delayed chemo for another week. This was very frustrating but nothing I could do.
My stoma wound had actually healed really well I wasn't that brave with having the wound packed and dressed it just made me feel a little funny it stung a little but not a lot. It was more the thought of nurses pushing dressing in to a whole in my stomach. I will put some pictures on further down so if your Squamish don't look 🤦🏼♀️🤣.
Whilst I was waiting for my chemo to start I was still trying to get used to my reversal my stomach was so unsettled and some days that bad that I wish I didn't get the reversal I still had to be careful of what I ate and when I ate. If I was out of the house I wouldn't eat because I had no idea if it was going to upset my tummy that quickly that I wouldn't be able to get to the toilet. It hasn't really settled down that much but I'm unsure if it's a mix of chemo now too. I am back to eating most things since my reversal but things like spice, alcohol and too much veg can set my stomach off I do still have it but only if I'm at home I like my food and wine too much to be going with out.
My stoma wound is completely healed now to which is a plus that I can shower a little easier.
The week before chemo I was adviced to go wig shopping I was told the regime would most likely make my hair fall out or thin. I was told that I could get some help from the nhs to pay for the wig and went to a shop near me to go and try a few on I took my friend Gina with me so she could give me some advice about what looked good and ask questions that I didn't think of or couldn't remember. It's hard when your in a situation like that because you just want to agree with what ever the person whose the professional in front of you but sometimes it's not right (not saying the lady wasn't she was absolutely amazing) so good to have extra eyes and ears.I did feel a little daunting going to the appointment but they were lovely and made me feel so at ease we decided on a wig and they showed me how to put it on and to practice putting it on and off even whilst I still had my hair. Gina also treated me to a halo wig which basically fits on the top of ur head so then you cover your actual head with a cap, hat or turban we also brought a turban cover this way it saves the main wig whilst out on dog walks or little errands. After we finished in the wig shop we went for lunch and I wore my wig the wholes time to get used to it a little I didn't feel uncomfortable or self conscious what so ever but I think that it helped having Gina with me that day I am so grateful for all of the support from all my friends
The time had come for me to go in for chemo it was so nice to sit in the waiting room not having to worry about having a needle for the cannula knowing I had my picc line It would be smoother to just be ready to connect and it was. I sat was connected straight away and was a little nervous for a reaction being as it's a new chemo but I was fine. It's so lovely going back in the cancer unit (obviously not for the treatment) to see all the nurses and that day I had my nurse who don't my very first chemo she remembered me and we just had a lovely catch up and laugh for the two and half hours it went by soo quickly with no reactions. She came over with my pump and I was connected to go home with it for 46 hours with a little bag that a patient had made a few of to help other patients which I thought was lovely.
I got home and waiting to feel rubbish I felt a bit coldy but other than that I was fine no pains in my hands or feet I could eat and drink normally, I didn't really feel like eating but I didn't feel sick or in pain like with my last lot. I didn't sleep very well that night I think being connected to my pump and the mix of steroids didn't help so was very tired the next day. But once I was up I was fine no real side affects other that constipation from the steroids and feeling tired. It was so nice to still be able to do my normal day to day things like walk the dog and a bit of food shopping.
Come Friday it was time to go and get disconnected I went in and they took the pump off flushed with some saline and I was on my way so easy in and out within 10 minutes. I then go in every Thursday for bloods again this is done through my picc line it's so easy a little longer than your usual blood test because I have to have my dressing changed then both lines flushed before and after but so much nicer than being pricked with a needle again. I then speak to someone on the team over the phone who check I'm not suffering too much and need my dosage change which touch wood I havnt had to change anything yet... they the. Give the go ahead for my chemo the next week and that's it im back in on the Wednesday to start all over again.
On my 3rd round I was informed that my base line scan had showed some progression I thought this would be the case being as I hadn't had any treatment for 13 weeks and my scan before had shown growth. I was suppose to be on this treatment for 6 weeks but it has been decided that I will most likely stay on this for the long run as long as it is working. I'm due for a scan on 19th December I will be on my 8th round by then. This to me should have happened sooner being as we don't even know if the chemos working. But I suppose they just can't fit me in. So I will wait and continue to have the chemo. Thankfully it isn't affecting me like my last one and I can handle to continue on. So as long as this chemo is working I will stay on to keep the cancer at bay.
There has been talks of a clinical trial I can go on for my KRAS mutation but I dnt really know a lot about it and until iv had my scan I can't discuss it with my oncologist so will keep you all updated when I know more on that. But for now I will keep plodding along on my folfiri and enjoying actually being able to live my life whilst on chemo. We are on our way to Disneyland Paris as I type this so just shows you can still live your life with stage 4 cancer!!!
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