Being drip fed information!

Hey. I understand where you are coming from with the trip fed information & the travelling to hospital too plus being anxious not knowing what's going on & why need scans. Sometimes the whole thing can be a total joke & doesn't do you any favours because it causes so much worry & stress. Can you not ask to speak to your Oncologist over the phone to find out what's going on? Speak to your nurse or the secretary & ask for phone appointment with Oncologist for full update ASAP. These people need to be chased & chased until you get your answers. Don't wait for them nor trust them with your life.  Hope you get answers soon. X

Thanks for your reply GNG. Unfortunately, I live in North Devon and we share an oncologist and their team! I couldn’t even speak to them when they messed up my prescription for capecitabine! The Pet scans are done by a private company within a hospital in Somerset, so have to wait for them to get an appointment. Thanks to all the time that will pass between the end of chemo and scans etc, I can’t get a flu jab on the NHS. I read your profile. I am so very sorry to hear all that you are going through , and at such a young age. I don’t understand why they can’t find your primary. It’s unbelievable! I always thought I was quite lucky getting bowel cancer and being diagnosed in 2019. Having done what I’ve been told from the beginning, to find myself being told without the chemo I’d have 6-12 months, feels really harsh.  I hope you are one of those people who beat the odds, and prove the medical team wrong. I hope your treatment isn’t stopping you from getting on with your life. Sending you lots of love and hugs.

I'm so sorry to hear what you are going through too. Seems like a lot of waiting & a lot of patience is required. Every part of the country is different I guess. The NHS is great but the whole cancer treatment/process needs be reviewed especially for areas like where you live. 

Thank you so much, you reminded me I needed to update my profile which I've just done. If you want read the update. I'm hoping the gene will be found.

6-12 months is so harsh I really hope you get through this, prove them wrong & are not waiting too much longer for answers. Keep us updated.

Xx

I routinely have a liver MRI as well as a CT scan every 12 weeks. The explanation I got is that the MRI allows them to see the tumours in my liver in much more detail in order to get a better idea of what’s going on. I have had a PET-CT on a couple of occasions. Whilst I understand a CT shows up the anatomy better than a PET-CT, fast dividing cells light up on a PET-CT so it’s good for picking up any small new problems. It sounds like good belt and braces to have both, even if it’s inconvenient. Unfortunately time does pass whilst they faff. 

Hi GNG I have been away from this for a bit and you can catch up on my profile.  Really glad to be in touch again.  I see that you are still going through it and I agree so much with this drip feeding of information.  I have asked who is the person that can really coordinate everything and give me answers.  Fortunately my Breast Care Nurse seems to have this role but I do badger her for answers and reports after MDT's.  And no-one will give me a prognosis with or without treatment...it was gloomy to start with and now more optimistic.  Not that anyone has told me.  I have to wait until 22nd to see the oncologist...but I have got a prescription which I am reluctant to take until I know more.  Thinking about you Jools and hope you get support soon.  It takes up so much of your mind and I wake up panicky some days until I get myself together...The red cell transfusions are helping and last about 6 weeks but for how long I don't know. What a strange place to find ourselves.  NHS wonderful individually but need coordination. Love and hugs xx

Thank you MaryQ for your kind words. I’ve read your profile. What an unbelievably long wait for your appointment with your oncologist. The nurses more than pick up after the rest of our healthcare teams! I had a massive meltdown on Friday. I finally reached my limit. The lovely nurse, who has been there since the beginning in 2019, talked to me for half an hour, and left me in a better place. I’m sure I’m not alone in reaching the point where you’re exhausted from trying to stay strong and positive. I actually felt like I didn’t want to carry on with all the scans, waiting for results and treatments. I still have to wait for a Pet scan appointment, which is really stressing me out. It’s a 3-4 hour round trip without all the preparation for the scan. I’ve got two dogs who I need to make arrangements for. My prognosis with chemo was possibly 2 years, so with all the time “lost” waiting for appointments and results, that’ll shorten it by 2 months. I hope that doesn’t sound like I’m feeling sorry for myself, I’m just stating facts. I hope your infusions are still keeping you “ticking along”. Even as a cancer patient, I still find the language clumsy! Sending you a big virtual hug.

I’ve read your updated profile and will keep everything crossed for you. You sound like an incredible lady. X

 MaryQ  so lovely to hear from you. I noticed you had gone quiet. It's good to take a break from this to be honest. Being able to reach out to others is great but I sometimes find myself constantly on this then making myself extra worried when i read other peoples stories. Glad you are more optimistic & the transfusions are helping.  The waiting around is awful. Like what you said I wake up some mornings & it's like a dark cloud over my head. Then you have to get on with life. Keep badgering your nurse, you deserve to be updated & looked after well. Hugs & kisses. Xx

 Jools63 thank you. Your comment gave me motivation this morning. We are all entitled to feel sorry for ourselves & we don't need to be positive all of the time. Everything gets too much & all gets on top of us, especially when things aren't going our way. You got 2 dogs bet they help when you feeling down. I've got 2 cats they make me  laugh when I see them doing silly stuff.  Hope everything gets sorted re your appointments. Hugs & kisses. Xx

Thank you for your kind words. I’ve gone from chirpy and busy today, to feeling weepy! It really does get on my nerves. I’m glad you’ve got furbabies too. Mine do make me laugh. I got a thorough fac wash from my eldest this morning. ️