Halfway through treatment

Thank you so much, everyone on here is so helpful ️

Lots to reply to there Mags and to Squashable too.  Will try and cover everything in this.

Everyone is different and we all respond differently to treatment.   I was bleeding a lot before CRT - for 4/5 months, but the CRT stopped that in week 2 and it has stayed away (thank goodness, as it was difficult to contain - it was also my only initial symptom that something was wrong).     At one of my reviews I was asked if I was still bleeding (I could say it was reducing at that point) and the RT said that often those that start CRT bleeding, will find the bleeding stops, those who start CRT without having bleeding as a symptom, often start to bleed.  I'm just passing on what I was told, so take it with a pinch of salt.

I was brutally honest at my reviews, all dignity is already lost with this disease so I just told people how it was, told them how my poo was, if I had skin changes, if my bum was sore when having a poo.    I was given Instillagel, which comes in a syringe (no needle) that you can squirt up your bum.  It contains sterile cleaning stuff, but more importantly, local anaesthetic - so if I timed it right, I could use it before a poo to make sure it was painless (think there is a bit of skin cracking going on).  I also had Flamigel RT, which I am still using all over my bits, and then flamanil??  which is more for broken skin, so alternated that with the numbing stuff as it creates more of a barrier if there is skin damage.    I also made sure I used Aveeno all over the other skin areas that were looking a little pink, especially any creases.  Also used that on feet and hands as the capecitabine can affect your skin there. 

So my plan - initially I was told that I'd have 5 days of RT then chemo, then 27% of people need no further intervention  (can't remember the name of the trial/intervention).  At this appt the computers were all down, so they couldn't even tell me my grading or size of tumour - just that I was being referred to the oncologist (2 week referral that took over 3 weeks).   

Oncologist decided to change this plan and put me on the OPRA treatment, which is the 5 weeks of CRT (with just capecitabine as the chemo drug)  followed by the 18 weeks of CAPOX, which is an infusion of Oxaliplatin every 3 weeks, along with 2 weeks of oral capecitabine, one week off and repeat - so this is different chemo to the CRT regime as there is a stinker of an infusion drug in there and a higher dose of cape for longer.  Evidently both treatments are gold standard (lol, like I feel this is gold standard)!   But the aim is to shrink the tumour before surgery.   I think this is because it is rectal, so the smaller amount they have to remove (hopefully bigger margins), perhaps the better outcome for me re permanent stoma, if Rasputin shrinks enough, maybe it could be reversed in the future, but to be fair - it is too soon to be thinking that far ahead - just have to get through the next treatment.

So yes, I get all my chemo etc up front, then repeat scans, then surgery - prob Feb/March time.  No idea if there will be mop up chemo after that.

Have had my hair cut very short ready for chemo (oncologist says 'no hair loss'  I've read otherwise).

Mags, if you are finding it painful to poo, get a sitz bath from Amazon - or just take a bath as sitting in hot/warm water will really help you, if your tumour is low, bit of salt might help too.  If things are a bit runny, then they will give you immodian - and if things are painful and paracetamol isn't cutting it, then they can help you out with that too.   Get the meds in so you can have a good holiday.

your symptoms will depend on where your tumour is, so with me I've been zapped near all my internal girlie bits, hence needing dilators to keep me elastic.  Boyfriend has offered to help with that, but to be fair, he'll be lucky!  Anyway, I've been prescribed dilators and lubrication for doing that job.  

I'm now a few weeks in from CRT finishing and to be fair, I feel the best I have done in months, it has just taken a little while.  I still get tired, but have to adapt to that. 

Leg still swelling, but not red - no sign of infection, again the RT will have zapped some lymph nodes, so hopefully it will get better with elevation and gardening!

Hospital staff are always brill, my first job after leaving school was 6 years working in a hospital.  It was an eye opener and made me who I am today.  Of course I left as I couldn't afford to stay there or do my nurse training.  Always take at least a packet of biscuits with me for staff when I go - and don't forget the receptionists!

Zoe

Can I just say what a brilliant post this is? It’s always great to hear first hand about how people are finding their treatment and honesty and a touch of humour for good measure too? 

You’re doing great ladies - keep it up!

Take care

Karen x

Brilliant post, Zoe.  Thank you for sharing x

Take care x

Hi Zoe

Thanks for your reply, loads to think about there. I do have a barrier cream that I was given called Medihoney. Works quite well.  I have since Friday been feeling tired and quite lightheaded at times. I’ve rested quite a lot in between doing normal housework etc. Stomach has settled 

I was given a dilator at my last meeting as I was zapped near my girlie bits too. Didn’t enter my head that I would need one until my radiographer started showing me and explaining about the use of it and why I had to use it. 
I am starting to get sore at the base of my spine or top of my bum but I’m using the barrier cream and Cetraben moisturiser. Very similar to Aveeno I think. 

anyway, how are you doing and has the swelling in your legs gone down yet. I’m sorry you have so much more to contend with before your op. 
I have to agree with Kareno62, you do have a great sense of humour and you’ve certainly cheered me up when I’ve read your posts.

Take care and chat soon

Mags x

Hi Mags!  and anyone following my posts.

I hope all is working out for you, let me know!

I've been a bit busy with starting chemo.    Sorry for response delay.  I've been either laid up in bed, or  painting pictures as it is what I like to do and if I can get back to 'normal' for a few days, it helps. 

Still trying to remember to dilate - happens about once a week when I remember (chemo brain).  I know it should be more.  Partner still offering to help - lol - no chance!  Did eventually get prescription via GP  for some water based lube which has been good.  I'm thinking the RT was absolutely spot on with not hitting vital organs.  Have lost some pubes now,  but no bladder issues yet.  Bum still a little sore, especially with chemo blocking things up  and subsequent explosions! Had to resort to senna, more senna and then immodian.  

Tired?  Yep, not sure if it is CRT or chemo doing that, I suspect both.  Bought new PJ's to counter act that. 

Chemo - only done one round (it's a 3 week cycle so I'm back again in 2 days).  It's OK.  Nasty on the cold effects, but I'm just staying in bed with the electric blanket on for 2 days after infusion, getting up to fill a flask of hot water for herbal teas and hot squashes and again to heat up a bit of food as and when.  Also taking oral chemo, so lots of ginger biscuits to help with that.    Days 3-5 are a bit better and I'm getting up for more time then, day 8 the cold side effects and tingles are better - so doing gardening and walks.    Leg still swelling, although it did go down for a bit, but I think it was bed rest that did that.

Planning a major knitting project for bed rest days. 

I must ask you, what is housework?   lol.   

I did have to empty a mouse trap today (rural living, they come into the airing cupboard every winter).  I can empty a trap, don't seem to be able to operate a hoover.. 

Hope you are doing OK Mags, listen to your body, rest when you need to, dilate when you remember and flippin well tell me what housework is!  :)

Zx

Hi Zoe

I have been away for a while and I must admit it was good to think of other things for a while. Weather was a bit iffy but hey, in the grand scheme of things, it’s a small iffy.

By now you must have had your second round of chemo so I hope you are feeling ok and not having too many effects. 
I do feel for you as it brings to mind when I was having my immunotherapy for lung cancer. That was in 3 weekly cycles where the first week I would go down and my immune system would be at its lowest, then plateau for the second week and come back up on the 3rd week. 

it’s lovely that you paint as you can get immersed in it and take your mind off everything else. What knitting project are you planning on when resting? 

I still get very cold feet but that’s about it which is good. I also think the RT was spot on in my case too. 
I have a few things happening this week coming which include a flexible Sigmoidoscopy, MRI scan and a CT scan.  

You asked “what is housework”. Well, it’s something that other people do if you are lucky but if you’re not so lucky then it will always be there tomorrow. 

Take care and to you 

Mags x

Love it Mags56 . Thankfully my husband pulls a good shift on the housework front too . But there is always tomorrow when it all gets too boring .

Hi Mags.
Glad you got away for a bit. Iffy weather is OK if there is a glass of wine involved. 

Had chemo 2 on Friday. (I'm on Capox)  It was tougher than the last one and I suddenly started talking like Barry White towards the end, then when I tried to get up and go, it turned out that someone had swapped my wrists and ankles with someone elses that didn't work, so I was walking like a penguin as well as making deep Barry White  involuntary grunts and groans. All very attractive!   

Took a few days for the ankles to ease up and I'm now at that point where I can get out of bed for a bit, but still can't do housework as can't hold cloths or hoovers - shame!  :)     Have lost some dexterity, so paintings are a bit random, but still good to do.   Will have to do some washing tomorrow, but that is easy enough.    Darn the chemo hurts the veins, another thing I didn't know about.

I am going to attempt to knit my first ever lace shawl - Hoping to cast on tomorrow.  3 stitches a day might be my limit as I have no idea what I'm doing, but nothing ventured...  what was I thinking with taking on that project?

I wonder if Barry White could knit?   This might be 'my first, my last, my everything'.

Day 6 tomorrow, that will be when the nausea kicks in, but it is also nearly halfway through taking the horrible cape tablets, I know I won't feel much better until I get my week off from taking those.  I guess each cycle will be that little bit harder to get over, but I'm prepared for that.  4 more to go.  

Much love

Zx (aka Barry). 

Hi Zoe 

I am sorry I’ve not been back until now as I’ve been waiting for results from biopsies.

How are you doing with your treatment? You had two treatments when we last caught up. The effects from the Capox sounded awful, are you still doing a Barry White? I hope the pain subsided for you.
How is the knitting of the lace shawl going? You do know that we will want a picture of you wearing it  

I wanted to update you on the outcome of my Sigmoidoscopy and scans and kept on thinking I’ll do it tomorrow when I get my results through in the end I had to phone up for them after a few weeks. 
it appears that the tumour has been zapped good and proper and the results from the biopsies were good. I may not require an operation now even though there is an ulcer left behind. I have an appointment soon with the surgeon to discuss this so fingers crossed.  

Take care and let me know how you are doing.

Love from Mags xx