Update …

Hi Nikki

Good luck, I do hope your treatment goes well. 

For me, the early days were relatively easy. I felt nauseous from the chemo but little reaction to the radio. As time went by, my body seemed to adapt to the chemo. I kept a note of foods that made me feel ill and learned to adapt my diet. Lost all sense of appetite but with a bit of effort was able to eat. Effects from the radio were cumulative gradually becoming more challenging. Worse time for me were the days after the treatment stopped. Medical staff had told me that would be the case but somehow I wasn't quite prepared for it. 

Do check with your medical team about lotions and potions. For me, once the skin between my bum cheeks was broken, Aloe Vera made the wounds worse. Coconut oil, table salt and Epsom Salts also, for me, made everything horribly worse. Sitz bath was brilliant but I only swished gently with warm water. My nurse gave me Medihoney as a barrier cream. Flamigel in the early stages and then Flaminal when the wounds were more acute. Eventually PolyMem was a life-saver. It's a pink spongy dressing which sooths, helps to dry the fluid and seems to form a film over the area. 

Another tricky part of the treatment is being able to have the right volume of urine in your bladder. The capacity of your bladder on your first scan when they make all the calculations and apply the tattoos has to be replicated on all subsequent visits. I'm sure there are others on this forum with more knowledge about this topic but as I understand it, a full bladder helps to protect the bladder itself and move part of the colon away from the area receiving radiotherapy. I kept a diary about when I had my last pee and how much I drank. I got pretty good in the end at presenting myself with my required amount of 350ml.  It's a skill worth learning and will make your visits to the radiotherapy department go more quickly. 

I'm now two weeks out from ringing the bell and receiving my final treatment and beginning to feel a whole lot better. Still taking Paracetamol and Ibuprofen which mostly manages the pain. Still have to stay close to the bathroom and sitting upright is difficult. Lucky enough to be able to spend most of the day in a semi reclined position. 

I do hope things go well for you Nikki. The Marsden has a wonderful reputation. I'm sure you'll be in the very best of hands. Do check out the Maggie's Centre. The one at Charing Cross Hospital has provided a wonderful haven for me. A safe, comfortable, welcoming and supportive space in which I could relax before and after treatments. And now, after my treatment has stopped, I'm finding it even more valuable. 

Take care

Stells

Yes!  Before I started the six months' chemo I had prior to further chemo/radiotherapy, it had taken so long to find get a definitive biopsy that they redid all the scans before starting treatment.  These latest scans showed an area in peritoneum in the vicinity of the tumour that they were concerned about - all except the chief oncologist who said, I'm not a betting person but I don't think this is spread, I think it is inflammation.  We will keep a close eye on it, of course, but I am convinced it isn't spread.  She was right, I trusted her implicitly and she was always very straight forward with me and gave very good explanations of what was going on.  This was also at the Royal Marsden.

Wishing you all the best in the next few weeks, keep us up-to-date with how you are doing, and remember we are always here if the going gets a bit tough.

Irene xx

Irene 

Thank you for that insight helps to put my mind at rest 

I will check in again soon thanks so much for the support means the world

Nikki

Thank you Stells very helpful and grateful for the support. Be good to hear from you in two weeks when you reach that amazing day & ring that bell …

I will be checking out Maggie’s this week with my treatment buddy that I met in waiting room. 

This group really is so insightful and really helps with my anxiety… and helps me prepare mentally as well.

thanks again 

Nikki 

I had a similar situation with 1 lymph node mildly positive on pretreatment scan. It was in the aortic area away from the primary tumor. I think they included it in the radiation port. No biopsy was done, my last 2 PET scan were negative for cancer. I’m in the US. I listened to my oncologist who thought it wasn’t cancer. 
so it sounds like you’re in good hands. This site is great for all the practical help, so access us if you need help or encouragement. 
Good luck in your treatment!  Keep your chin up!  Believe me you can get through this. I’m 71 yrs old and have been cancer free for almost a year. The side effects from treatment are a dim memory, kind of like having a baby!  You can do this!

Socks02 

Thank you for your kind words and support good to hear … 

Nikki 

NikJ18

Hi, I was initially told I had spread to my peritoneum. I sought a second opinion who disagreed and then my local team decided to investigate with a camera and turns out it’s not in the peritoneum, 

I do have some areas that were being classed as spread but they are difficult to pin point. They have never Ben biopsied but were included in my radiotherapy treatment. All very confusing. 

Im due to get my post treatment scan results next week so will know more then x