Bowel cancer treatment and side effects

strongsami

Alien Evacuation Day has arrived!

Hi everyone,

As you have probably seen, I haven't been on here in a while.

After I finished my Radio-Chemo, the horrible side effects thankfully wore off after a couple of weeks, the sore bum bum skin healed perfectly. Many thanks to my friend SUDOCREM what a fantastic invention lol.

So since then I have been feeling pretty healthy, I had my scans last week (massive scanxiety!) and on Wednesday I went to see the consultant who said I had had a very good response to treatment, I think everything has shrunk, the tumor itself and the surrounding lymph sites - of which there were quite a few - so no it's surgery time. Actually, I wasn't expecting such a quick turnaround, Im having my op on MONDAY! EEK! Today I completed my bowel prep and tomorrow I've got to take a cocktail of antibiotics, anti wind meds, some nutri prep juices, stab myself with a syringe (will probably get hubby to do that!) all in preparation for...

ALIEN EVICTION PROCEDURE!

I think I am having LAR (they call it something different in Italian but I'm pretty sure it's that). I met the surgeon on Thursday, she is very nice and I was shocked - quite young - this freaked me out a bit but my hospital is a centre of excellence and I[m sure they wouldn't put someone in that position that they didn't think was capable... She said it should take about 4 hours, they might remove my ovary too as it was very close to the tumor at diagnosis (not now but she will check when she goes in then make a decision).

So I am quite apprehensive, more nervous about this than any other step along this path. I have never had an operation before, never had general anesthetic and I am a control freak so you can all imagine the thoughts going through my head.

Anyway, I am happy as I have been waiting for this since November... so Mr ALien, it's time to leave the building!

Anyone have any advice for me for staying calm? I am doing some pre-surgery meditations from youtube. Trying to focus on the main points, good shrinkage and it's time to cut it out and throw it in the bin.

Love and Rocky Balboa super strength to everyone.

Sxxx

greyhound gal

Dear @strongsami , love your artwork! I wear one piece bags too, just about to cut the holes to size. I’ve thought about buying some zany bag covers.
I hope you get your answers today about your leg problems. Let us know what happens
Best wishes, Wendy :x::x:

strongsami

Thanks @greyhound gal ! I had fun doing it, I think I will do more!!!
My psychologist always tells me to do something creative with my bad thoughts and I am a frustrated creative person and this doesn't take that much effort so... bring on the next one!
I really hope I get some answers today as you say - fingers crossed and I will keep you posted!
PS. Rocky is coming back, yesterday night I sat and watched a medley of all the training montages and felt the Rocky Balboa strength stirring.... ;)
Hugs!
Sxx

strongsami

Thanks for remembering @determinedjoan

So I went to the neurologist yesterday who made me do a few movements with my legs - mostly resistance testing and he said I had damage to my femoral nerve - in his opinion based on the “scraping” of my left side lymph nodes - in his words - even the best surgeon would have had a hard time not touching any nerves...

So next steps are an EMG (has anyone done this? It looks a bit scary - I think they test nerves and muscles by feeding electrical impulses through them?! 😱)

And then physio...

I’m feeling a bit better today with my leg but my back was sore today 🙈

Plodding along!!!

Lots of love
S :x::x:

SteveQ
Quote from @strongsami:
Hello my lovelies!
Well leg issues haven’t gotten any better so tomorrow I’m paying to see a neurologist privately because I can’t stand it any more...

Stoma nurse has given me some 1 piece bags to try so will see how Cliff responds to these, and...

I did this last night with my paint pens!!! Xxxxx

Best of luck ☺☺☺☺ - love the artwork :x::x:

greyhound gal

It’s good that you’ve got an answer @strongsami 👍, and a plan too. Hopefully the physio therapy will help
Keep on plodding! Wendy :x::x:

Lirio345

Hi @strongsami, I am just catching up having returned yesterday from Lake Maggiore! I am really sorry to hear about your leg issues, but really hope that the plan helps. Take very good care, Kim xx (PS I did think of you as I flew to and from Milan, Malpense)

strongsami

Thanks @greyhound gal and @Lirio345 !
I managed to walk to my son's nursery today so am happy about that! Can't wait to start physiology and hopefully it gets sorted quickly!
I already have my sigmoidoscopy on Friday to check the heal in the bowel!!!
@Lirio345 you were soooooo close! I literally live 30 mins drive from Malpensa :) Did you have a lovely holiday? Hope it wasn't too hot for you ;)
Hugs to all
:x::x::x:

justhope

@strongsami so pleased you sound to be walking better its all in the right direction, I'm sure physio will help too.

Sadly we are still waiting , no appointment for PET scan. No updates. the mental wait is torture! :x::x:

strongsami

Thank you @SteveQ ;D:D:)

Quote from @SteveQ:
Best of luck ☺☺☺☺ - love the artwork

strongsami

Thanks @justhope

Oh man I'm sorry to hear you're still waiting, how very annoying. Did they give any indication on how long you would have to wait and why? I think some good old badgering might be in order here.. even just to get an idea of how long you have to wait. It literally IS the most annoying thing...

Sending hugs
xxx

Quote from @justhope:
@strongsami so pleased you sound to be walking better its all in the right direction, I'm sure physio will help too.

Sadly we are still waiting , no appointment for PET scan. No updates. the mental wait is torture!

justhope

@stongsami out of the blue they said he needs to have a PET scan, he was last seen for sigmoidoscopy and biopsies and surgeon said see you in two weeks, on that report she put possible complete response and ulcer at sight of previous tumour, so all sounded good,

When he didn't get an appointment I chased and got the shock of PET scan requested, I was asking about appointment, nurse tried to read through two recent MDT meetings just two weeks apart, but she was not present at MDT so only interpreted notes, but said one spot on lung grown slightly
Nurse said Could be anything, maybe surgeon being cautious. Said no mention of cancer on biopsies.
But no appointment no one sat us down and told us anything, nurse said don't worry....easy to say!
I have just rang but you can never speak to them direct it's always answer machine and they ring back some time later maybe next day. Just to ask if they can chas appointment
But she said takes 2/3 weeks to report after scan so more and more waiting....I hate it.....causes so much anxiety. :x::x::x:

strongsami

Oh @justhope
That's awful, I do wonder sometimes if these people realise how much mental anguish we go through in these situations?
I sincerely hope it's just them being cautious and nothing wrong with being cautious at all but of course the waiting with no clear explanation is pretty much hell - I hear you loud and clear and I'm so sorry you are going through this... what a rollercoaster :( I want to give you advice but I know it's all so much easier said than done - try to keep focused on the positive response and plan some activities. Do you meditate at all? I try and do it every day (I don't always manage it) but it really helps me relax. There are some excellent guided meditations on YouTube, you can even search by what you require eg. relaxation meditation, healing meditation etc.

Hope you get some answers soon, massive hugs xxx

Quote from @justhope:
@stongsami out of the blue they said he needs to have a PET scan, he was last seen for sigmoidoscopy and biopsies and surgeon said see you in two weeks, on that report she put possible complete response and ulcer at sight of previous tumour, so all sounded good,

When he didn't get an appointment I chased and got the shock of PET scan requested, I was asking about appointment, nurse tried to read through two recent MDT meetings just two weeks apart, but she was not present at MDT so only interpreted notes, but said one spot on lung grown slightly
Nurse said Could be anything, maybe surgeon being cautious. Said no mention of cancer on biopsies.
But no appointment no one sat us down and told us anything, nurse said don't worry....easy to say!
I have just rang but you can never speak to them direct it's always answer machine and they ring back some time later maybe next day. Just to ask if they can chas appointment
But she said takes 2/3 weeks to report after scan so more and more waiting....I hate it.....causes so much anxiety.

determinedjoan

Yes - abs awful.
Woke up this morning thinking IF I were the Queen & sneezed, everyone would come rushing around to check me over, order immediate investigations & then provide treatment/relief of symptoms based on the results.
Was shocked by BCUK podcast when Head of BCUK, Deborah, said in one breath that best hope of cure is early diagnosis, but for anyone with Stage 4 Bowel cancer, only hope is IF u hv private health care, which most of us don’t.
Sooo many of us tortuously awaiting scans/results - FINALLY get my CT tomorrow which has taken me all summer to sort while I’ve been rapidly deteriorating & feeling more & more unwell. Steroids hv defo helped - not like I haven’t been listened to, heard & treated, but shouldn’t be like this in 21st Century UK - NHS just collapsing under strain - needs massive resources ploughing into it - all v stressful, worrying & depressing. Know that the brilliant, dedicated staff will do their utmost to help us all, but suspect in my case may now hv missed boat for further Ablation/treatments...
Thinking of all & sending love, hugs & soothing, healing vibes :x:

strongsami

So glad you've finally got your CT scan @determinedjoan
Wishing you the best of luck hope you feel better.
Big hugs
:x::x::x::x:

determinedjoan

Thx sooo much dear @strongsami ; let’s just hope scanner working today !
Hope you’re continuing to feel better. Love & hugs :x:

strongsami

Ok people I have updates!!

So today I had an ultrasound because in conjunction with my upper leg pains, I have also noticed a swelling just below my main scar... I mentioned this to the surgeon and she ordered me with an ultrasound which I had today...

And straight away the doctor told me I had a big lymphocele. She explained this can happen when lots of lymph nodes are removed as they would normally dispose of this fluid themselves but as they’re a bit depleted post op - these accumulations form...

She tried to contact my surgeons there and then but they were in theatre so off I went. Then an hour later I happened to bump into one of them in the canteen! I told her and she said they would probably drain it with a needle (ahhhh 😱) but I’m relieved to know what it is and that it can be sorted... it may even be this swelling pushing on the nerve on my leg causing the pain and difficulty walking... who knows?!?!

So main question: anyone know anything about this? Had one themselves?

@determinedjoan how are you lovely? How did your CT go?
Hugs :x::x::x:

determinedjoan

Good to hear you’re gonna get some answers & treatment soon :x:
CT not good, as anticipated cos I hv been feeling increasingly unwell over past 6 weeks.
However, couple of possible treatments available; scan being discussed @ MDT meeting @ Royal Free Hospital 26th to c IF I might be eligible for SIRT.
NOT eligible for new Research Trial @ Sarah Cannon Institute.
If all other options fail, can TRY Avastin (self-funded top up) to c IF that will help slow progress of disease. Delighted to be able to tell my young adult sons tomorrow that, although poorly, new treatment available- phew 😅.
All v best of luck getting current probs sorted. Pls keep us posted.
Sending love & hugs :x:

strongsami

Thanks for your message @determinedjoan and for your update.
I'm sorry the CT results weren't great but happy to see there are different options available on the table and I'm sure your team will find the best solution for you.
Your name says it all! Go lady!
Love and hugs coming straight back at you
Sxx