Low Rectal Cancer Diagnosis - newbie on here

Hi Annie,   

I had a dreadful day on Tuesday, had to have an MRI before I see the liver surgeon on Tuesday.   They had trouble getting the canula in to my left arm; the needle didn't hurt that much but the feeling of someone digging around in your arm was awful.  I ended up in tears.  the other person started tapping my other hand looking for a good vein; the day of my operation the anesthetist had had 3 goes trying to get a canula in there; I begged them not to try there and they started on my other arm.  Thankfully they got the canula in but it hurt so much even though it was in correctly.  I was crying and told them I had to have a PET the next day which involved another canula and that I didn't think I could go through it again and would cancel.   When they came in half way through the MRI they told me they had rung the hospital where they do the PET; there had been a cancellation that afternoon and if Iiked they could leave the canula in and I could have the PET done.   I was relieved about not having to go through all that again tomorrow and agreed, so they bandaged up my arm and; still teary, I went off to have the second scan.

I arrived early and was waiting; still teary, when a lady; wrapped in a white blanket with a canula in her arm; all ready to have her PET came and sat close by.   She noticed that I was still teary and wanted to give me a hug but couldn't in case she disturbed the canula so she held my hand and talked to me instead.   While we sat there, she pretty much told me her life story and I was thinking, 'what a lovely old dear".   She asked how old I was and when I said I was 66 she responded that she was 62 - I almost fell off my chair!    

I had my PET and got the canula out, which had been aching the entire time it was in my arm and, still teary I went outside to get a hot chocolate; it was 4 pm and I had had nothing to eat or drink since the night before.  Unfortunately the machine had been shut down so, still teary, I waited in the lounge area for my sister to pick me up.   One of the lovely nurses whom I know walked by and came over to see if I was ok and said she would book an appointment for me to see the psychologist.   When my sister arrived, I burst into tears and she asked what was wrong; I could only reply 'nothing'.    I ended up getting my hot chocolate and felt somewhat better afterwards.   What an awful day and the thought of more in store is very frightening.  

On Tuesday I have an appointment with the liver surgeon and I anticipate he will book me in for the next surgery.  Normally the second surgery takes place 6 weeks after the first and I am now 4.5 weeks post op.   When you are going through this, there are times when you feel as though  you are in your own private hell.   When I recover from the surgery I have to have 6 months of chemo therapy which will be done via a port in my chest which will be installed the same time I have the liver surgery.    All fun and games!    

During my chemo/radiation when I initially started taking the chemo drug I felt nauseous however that passed and I had few other symptoms other than my mouth was dryer than normal and my hair thinned a little.   The effects of the radiation builds up and I cannot remember when I first experiencing the pain from the burning.   I can recall I had an appointment with the Colorectal surgeon 8 days after I finished the chemo/radiation; when he said he wanted to examine me, my reaction was horror because I was still extremely sore.   Two weeks after the radiation finished, the pain had completely gone and I was feeling the best I had felt in ages; although I still experienced loose stools (mainly in the morning) and urgency right up until the day before my surgery;  I recall having 2 good days before I got the DVT!   Once the medication cleared the clot I was back to feeling well again.  Even though you have had no burning as yet,  keep applying the cream because the effects of the radiation gradually build.

I hope you are continuing to do well,  thinking of you,   

Rebecca.   

I have a cancer too but almost feel like a fraud reading stories like yours. Untreated I'd be dead inside a few months but I am fortunate to have a 60% chance of being cured. I've been couped up in hospital for a week and am going stir crazy right now waiting to get out when my bloods are clear of the rat poison chemo.

BUT...what I wanted to say is I hate the canulas with a passion AND I'm a ruffy toughy ex special forces soldier. The hospital should have a special electric warming device like a duvet for your arm. If you have a problem next time ask for it. This device swells all your blood vessels only takes 5 or ten minutes and works wonders!

Hi Rebecca 

you sound like you have really been through it with that cannula business.. ! Your attitude and humour towards these hard hard things is simply wonderful and I know that will mean so much in facing these next steps which will be so fantastic when you are through them. You sound so young and vital and it made me smile when you talked about the woman in white .. 

so good you were able to keep it in and will it be Tuesday when they confirm when exact the op is?  .. hope so as good to keep things moving ? Hot choc is certainly medicinal ! 

I am flying along through this chemo rad and feeling very little side effects if any as yet ... but I know it is early days .. I keep wondering whether I will tell if it's working or not ? Feel helpless a bit but more in control than before starting ! hope you are feeling positive and better - let me know how how are xxxx much love Annie 

Hi Trooper,   

Thank you for your response,  I hope your blood clears and you are able to escape from the hospital.   When I had my operation I spent a week in hospital and, although I was still sore and afraid of how I would cope;  couldn't wait to get home.   It is now five weeks since the operation and I am gradually getting better though still sore where they stitched up my bottom and the colostomy is taking a while to settle.  

Like you,  I feel like a fraud because I look so healthy and well; yet if I hadn't had the surgery, I would have died within months. Before the surgery I had 5 weeks of chemo/radiation to shrink the tumor; before that I had 2 MRIs and a PET which showed up the 3 metastases in the liver;  the cancer went from being stage 1 to stage 4.   The next step in my cancer treatment is a liver re-section followed by 6 months of chemotherapy; the doctors are quite hopeful that I will be one of the 25% of stage 4 patients who survive 5 years.   

When the surgeon initially told me he needed to remove my lower bowel and I would end up with a permanent colostomy I told him I would prefer a euthanasia needle, however as time goes on I am feeling better about it everything and am prepared to give it my best shot.  Thankfully I am otherwise extremely healthy, or as the surgeon said 'strong'; although  I don't feel strong - especially when there are canulas involved!   

I wish you all the best; your prognosis sounds very promising.   Hope you break out of hospital soon.  

Kind regards 

Rebecca.   

Hi Ke 

How is it going ? Hope all is progressing well, I am on day 12 of my chemo radio and feeling much better but not feeling (as yet! ) any side effects.. but know it is early days yet for the dreaded burning ! The only thing is I seem to be a bit low on HB but don't know why .. so I have to have Iron pills today which is a bit of a pain as they can cause constipation !!

I saw the oncologist yesterday and he was talking about papillon again. I thought you might be interested to hear that apparently The Christie considered having their own "Papillon treatment" at Christie but decided that as Clatterbridge was so near they decided against it. But I thought that was interesting ? Also he said that his understanding was that contact radio goes in to a depth of 3 cm .. did you hear that as well from papillon. 

Anyway all good stuff and hope you are doing well.

lots of Love 

Annie xxxx

Hi Annie,

apologies for the delay in responding I am receiving notifications of postings a few days after they have happened.

 I am going on okay. I have finished my treatments just waiting for the toilet visits to settle down. I wasn’t too bad after the first dose of Papillon treatment but the other two doses seemed to have upset things again a bit. Professor Myint has said I have had a very good response to treatment otherwise.

I have an MRI and CT scan scheduled for the 9 September and a blood test to have a few days before that. Then I go over to see Professor Myint on the 20 September for a scope examination. So they will be keeping a close eye on me. Saw the GP last week to try to get a letter to say I am fit to travel which he has done and included that I am on Loperamide to control any loose stool visits to the toilet if it gets excessive.

I had read as part of my research that they could treat with Papillon as long as the spread wasn’t in excess of 3cm as that’s the full extent of how much the machine can contact with not sure about the actual depth.

How are you coping so far it sounds as though you are doing well with very little in the line of side effects. I didn’t fair too badly either just the toilet visits which I controlled with the loperamide and an odd day of nausea. I did get a sore entrance to the bum though which built up over time but that seems to be easing gradually now.

Are they going to put you through for Papillon treatment it sounds a bit like it if they have mentioned it a couple of times. If they do and you get referred to Clatterbridge you will be under Professor Myint who is a good guy and the top man in England as he taught the other centres. 

Let me know how you are going on.

Kind Regards,

KevH

Hi Kev 

thanks for replying. So good to hear you are doing well.: do you get similar burning with this as the normal radio chemo ? Or worse..  I am experiencing stinging now from the radio but it is just about manageable. What is Loperamide ? They haven't mentioned that ? ..my symptoms from before treatment have disappeared just the stinging from the radio now in a different place from the original discomfort .. so I suppose that must mean something is happening ) ? 

Yes I don't think they have ruled it out for me but I think they need to see results of the radio chemo .: do you think they know anything avout how effective the treatment is ie if it has shrunk before they rescan after (? It seems odd to me with all the radio scans and bloodwork every week that they don't know anything ? What do you think . It's so hard not knowing if any response whilst you are going through it ..

professor Myntt sounds really good and I have all my fingers crossed that it goes well for you . Do you think he takes private consults beforehand.

lots of love Annie xxxxx 

Hi Annie,

I got a sore entrance to the bottom from The Radiotherapy I didn’t have that before and when I mentioned it to The Radiotherapy nurses after I felt it starting and building up every day from about 1/2 way in. They told me it was due to the Radiotherapy and it was to be expected due to where I was being treated. One of the side effects of treatment is that you might experience the need to go to the toilet more often and the stools being quite loose so the gave me some Loperamide pills to take if it got too excessive to control it. The over the counter treatments are usually something like Imodium. they also gave me some tablets to take if I suffered any nausea as a result of treatment I was fortunate enough to only have a couple of occasions to have to take one tablet each time.

Professor Myint I think will do Private consultations but I went under the NHS as I asked for a referral and if they don’t refer you then you can ask to be if you want to.

So far as telling if it has shrunk then I think you might have to wait till you have finished treatment and then have a fresh MRI scan done a little while after you have finished the treatment. The Chemotherapy and Radiotherapy continues to work for a while after treatment has finished.

I think the reason for the blood tests is because Chemotherapy can affect the blood cells carrying the cancer and good ones as well so the tests will be to see how you are being affected and to check on your Immune system as that can be affected and because of this some people could be open to picking up infections.

So far as Radio Scans whilst undergoing treatment that was only to check on the positioning of The Radiotherapy machine not to scan any of the affected area. I am assuming that you will have prior to starting treatment gone for a scan and had some laser pen marks made on your body? The scan that was done on me on two or three occasions whilst in the treatment room was just to recheck that I was in the right position. I would lie down on the bench on treatment days and they would move you about till they got you exactly lined up with the laser marks on your body before they could start the treatment machine up. Which would then move round your body using these marks to do it.

I hope I have answered everything for you.

You sound as though you are coping well with the treatments so far. Not everyone suffers with side effects but they have to make you aware of them in case you do and a lot of them they can give you something to help you cope with them.

Keep me posted and be positive xxx

Kind Regards 

KevH

PS    I have just received a notification of a posting made on the 4 August and I decided to look otherwise I wouldn’t have seen your latest posing by the looks of it probably for another 10 days. I wish they would sort this as I don’t want people to think I am ignoring them.

Hi Rebecca 

not sure if my post posted but wondered how you are getting on and do you have definite date ? Thinking of you .. I am still ploughing through this Chem rad hoping .. 

muvh love Annie xxxx 

Hi Hannah ,

Not heard from you for a while . How is your mum doing ? 

Thinking of you both ,

regards Court