Living well with bowel cancer

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strongsami

Updates, apologies, explanations!

To my lovely tribe,

As you know, I've gone from being very active on this forum to basically hiding. I have mentioned this before but the reason is my mental health. The past few months have been tough, not only because of cancer but just life becoming very hectic and some other stresses with family which have all really been piling up.

I want to give you all an update and also apologize for my absence. I am the type of person who loves to help other people but I know that unless I am in a good place myself, it's basically impossible for me to help others. I hope my absence hasn't offended anyone! I think of you all often!

So here's my update - for those who can't remember:
- Diagnosed late 2018,
- x4 xelox
- 25 sessions of radio & cape tabs
- August 2019 blighter removed and staged: T3N1M0,
- October 2019 reversal,
- x4 xelox mop up and signed off Feb 2020.
- check up in June '20 - lymph nodes that were being monitored showed up as having grown a bit,
- August 2020, 5 sessions of intensive radio.
- November 2020 scans showed inflammation but they told me this was normal after radio.
- Feb 2021 scans showed continued inflammation and 1 more lymph node having grown. PET scan confirmed some cancerous activity.
- March 2021 - surgery was planned.

I was happy because I loved the thought of going in, whipping it all out and closing the book.... then oncology got involved and told me to have "a bit of chemo" to mop up any stray cells... OK I thought - 6 sessions of Folfiri & Panitumumab - finished then told despite stable scans that the op was intense and the chemo was working so we could continue. I was LIVID, demanded to see my surgeon (who was on holiday), finally saw her in September and she said as long as there were no changes at next scan, then surgery would be ON.

FFward... had my scans and they show all the same and even slight decrease of volume in lymph node on right hand side - good times - or so I thought. I had my meeting yesterday to be told by the surgeon that as the node on the right is "pushing" on my piriformis muscle, she'd rather not go in and do such a drastic surgery (the plan was: remove nodes, re-resect colon as the node on the left is pushing on the intestine, apr barbie butt and permanent stoma) - when the chemo was working and situation was stable... and she couldn't cut the muscle so couldn't guarantee getting all the naughty node.

I do understand their thinking but at the same time I was gutted as this felt like the chance of getting rid of these crumbs has just been taken away from me. I always held on to the fact that I could get rid of all of this and just carry on without cancer.

So now I'm on maintenance chemo (FUFA & Panitumumab) and thankfully my skin issues are under control, I have stopped the cortisone too and I *think* my hair is starting to grow back. I know this is not bad news but it has been a blow. I know I need to just reprogram my way of looking at this situation and I think I need to start counseling again.

Any advice or similar situations much appreciated.

Sorry for my epic message and thank you to anyone who has the patience to read this to the end.

Rocky is somewhere inside licking wounds but will be back,
Lots of love to all
Sami :x::x::x:

Joshua A

Well it sounds like you've unfortunately been through a lot. I too can echo the feeling of thinking im done with this sh** and then it hits you like a truck! I had a recurrence in my liver this past july-aug after having colon surgery and chemo last summer. I also have been keeping a low profile on here but still check in to see how other's are doing. You have to do what you can to keep your mind healthy. They don't Tell you about the mental side of all of this when you are diagnosed. I feel also a lot of us have been alienated during this covid crap. Anyways wish you all the best stay strong. Just like your name 😉 take care.

Molly2me

Oh @strongsami it’s a mental rollercoaster lovely and you’ve been on one hell of a ride! Be kind to yourself first and foremost, you begin with you, we will still be here fighting our battles when your ready. Reaching out and getting help to realign your thinking is a very positive move and I wish you well. Take care and here ok :x::x::x:

Lucy118

@strongsami, you’ve had such a rough time. Sending big hugs and lots of love :x::x::x:

Wegwe

So you’ve been promised surgery -on and off- for more than six months only to be told it’s not an option, because of a node that was there all the time? That sounds so horrible. Wishing you all the strength you need.
Have you considered a second opinion with a different surgeon?

Forum user

Hi @strongsami I know how gutted you must be in regards to the operation as I was looking like going down a surgery route and then had the rug pulled from under me at the last minute,all I know is that I have seen lots of people who were told that (there is nothing more we can do) to then seek second opinions, talk to different surgeons and options sometimes change, the real strongsami is licking her wounds but she will pick herself up, dust herself down and come out fighting again,and you will do whatever you can to keep moving forward, sending you lots of love take care cheers John :x::x::x:

Ali

@strongsami so sorry to read above but well done for getting it out and letting us know how you are feeling. So many stories on hear echo similar and different ways of dealing with the mental side of things. I have to admit I hadn’t taken that side of things into account but never felt so low in my life especially after my first infusion. However I see others on here going through far worse or for much longer and find comments inspiring. I can’t offer any advice other than maybe getting a second opinion.

Take care

Ali :x::x:

Lirio345

Good morning @strongsami, it is lovely to hear from you, but not lovely to hear that you having such a rough time. Please don’t ever feel you need to apologise for taking time out ….. lots of love, Kim :x::x::x:

Siona

Such a rollercoaster @strongsami you are most welcome to share whenever you feel the need to. No need to feel obliged. Big hugs :x::x:

louise28

I'm really sorry @strongsami this is rubbish. I think it will take time to process and you've now had this to deal with over the last year, hoping for surgery. I can only offer my ten pence worth! I think you've been v unlucky with the SABR as the success rate is usually quite high, however, the lack of spread elsewhere means what you have is a v small localised/regional disease. It is reassuring that it's not elsewhere but you essentially need this localised disease dealt with. The guy doing my SABR told me that it keeps working for weeks and months and sometimes over the course of a year. He said it's not that easy to tell it has worked or not. Would you be able to get a PET scan? And see whether they are active. The nodes could still be large or inflamed but not necessarily active anymore....

Also re: surgery, I would be pushing for this for sure. It is v tricky with nodal crumbs because they are there with the potential spread but who is to say that is not the only disease. If it is, you want it gone! And you've been told surgery was an option from beginning.....I follow a bowel cancer survivor called Nat Woodward on twitter (She is on insta too) and she had a recurrence in the pelvis - she had pelvic exteneration and a permanent stoma. she had cancer i think on one of the ureters, possibly nodes and she had part of the piriformis muscle removed (as I udnerstand it). Obviously it's major surgery but she's NED for over a year. Her surgery was done at the complex cancer unit at St.Marks. Would you consider a second opinion there?

:x::x::x::x:

Baxter2

Hi @strongsami,

Lovely to hear from you but honestly, there is absolutely no need to apologise, offer explanations or updates. It's your health and your business! Share only what you want to and when you want to without any obligation! We're always here for one another anytime!

I'm sorry you've had these challenges and hope you find a way forward that you're happy with. Second and even third opinions are always worthwhile in my opinion and without these, I'm not at all sure I'd have been around much beyond my initial rubbish prognosis.

Sending you lots of love and very best wishes,

Karen 💛💜💙❤️💚

Stella 2020

Hi @strongsami , so sorry you had such a rough time, after all these time then been told the operation is off. I wonder whether you can seek a 2nd opinion elsewhere. Since you are in EU, maybe other centres such as Heidelberg university hospital? Or as @louise28 suggested St Marks’ in London.
Drop by when ever you are ready and take care :x::x:

GD62Z

Hello @strongasmi sorry you have all this hassle hope that you rebound from it all, wishing you positive healing :x:

justhope

Hi @strongsami first it is good to hear from you but also sorry you are having to go through all of this at the moment. Rocky is in there just not out visibly maybe at the moment… I heard something the other day about hiddeness and the strength and beauty in that and that it is usually strength building the examples given were….plants in winter hidden but storing up energy in roots ready to bloom in spring….babies in womb hidden building up all they are until ready to come out….the Olympic athlete spending many many hours training often unseen until they shine in the arena of the olympics….there are many more…so Rocky doing the same..sending love to,you :x::x::x:

bowelbehavingbadly

@strongsami it’s good to hear from you. I’m so sorry you’ve had such a difficult time and on top of all to have the option of surgery, which you’ve worked towards, taken away for now. But as others have said there may be benefit in second opinion. @louise28 has given great advice. And I love @justhopes analogy of building strength and I can just see this for you. You’ll be back soon throwing some rocky style punches at that old bugger cancer. Take care of yourself in the meantime. Lots of love. Sandra. :x::x::x:

strongsami

Awww you guys,

Reading your replies has brought many tears - good ones - I feel understood and supported (something I haven't felt in a while, sadly). I feel so grateful for this forum and all you amazing people.

There is absolutely no substitute from words from people who really *get* what you're going through. I mean no ill towards my support circle as they only want what's best for me but recently, their reactions have only succeeded in alienating me much of the time.

I am slowly getting my head around the situation and am collecting some questions. My husband thinks they want me to do Proton radiotherapy (they are just about to open a centre at my hospital) which is meant to be amazing on hard to reach areas... They did mention radiotherapy in my meeting but as far as they are concerned, the situation is good atm so "if it aint broke" type attitude... I know I should focus on it being small, localized and possibly already dormant. I will get there of course and maybe a second opinion as many of you have mentioned, might be useful. Sending so much love to all of you :x::x::x:

Hi @Joshua A
Thanks for reaching out and sorry about your issues, thanks for your supportive words! :x::x::x:

@Molly2me thank you so much for your sweet, wise words, so very appreciated. :x::x::x:

Thank you so much @Lucy118 :x::x::x:

Thank you @Wegwe - yes exactly, extreme emotional rollercoaster! I am thinking about a 2nd opinion :x::x::x:

@cyclingjohnny my friend, thank you, I know you know exactly how it feels and more, you are always such an inspiration to me, so grateful for your message and input. Huge hugs :x::x::x:

Thanks so much @Ali :x::x::x:

Lovely Kim @Lirio345 thank you so much for your reassuring words, so very very appreciated xoxoxox

@louise28 hello my lovely and thanks for your amazing message, so as you say, I was told this initially before they decided on surgery / chemo, that it's not guaranteed that the cells are active (they lit up a bit on PET but not totally - Left hand side looked mostly necrotic, right hand side looked more active). It's a good suggestion re: the PET although as you say - and as I was told, the inflammation is also "normal" post radio... Great suggestion re: Nat Woodward, I will look her up. I also read that the piriformis muscle CAN be removed, people with nerve issues have it done in day surgery??? Funnily enough, St Marks is about 10 minutes' drive from my parents' house in London... I am thinking about it. :x::x::x:

Lovely @Baxter2 Karen thanks so much for your support and reassurance :x::x::x: Actually I wanted to ask you about the extra long eyelashes (I think it was on one of your posts I read about this) as I have this too! I am grateful they didn't fall out but I do look a bit odd hahahaha!!! Did you ever get them trimmed? Thanks so much for the advice :x::x::x:

Thank you so much for your message and kind words @Stella 2020, I will think about a second opinion. :x::x::x:

Hello lovely @justhope thank you so much for your kind words and I LOVE those analogies, I know the inner Rocky needs to regroup, these images really help me! Thank you xox

Thank you so much @GD62Z :x::x::x:

Thank you so much lovely Sandra @bowelbehavingbadly :x::x::x:

louise28

yes @strongsami take this big collective hug and wrap yourself in it!

I dont know Nat but I find her posts v helpful as she is v honest and also supportive of other people. Her op was not for the faint hearted but she is doing v well. I think in her case they shaved the pelvic sidewall and removed part of piriformis and ureter as well as possibly ovaries etc to get clear margins...

Sending love :x::x::x:

louise28

also good that the SABR has potentially done a good job. the guy i spoke to at specialist SABR place said it really can take months and months and even a year or 18 months. Trials showed that in prostate cancer, the cancer markers can be reducing still after 2 years!

Baxter2

Aaah, the ultra long lashes @strongsami! They're crazy aren't they? I have to trim mine as they grow so long and curl back on themselves. I so wished I was more clever and dedicated with eyelash curlers and I could maybe train them! 😂😂. I have had eyelash straightening (or I think it's maybe called something else?..........Chemo brain!) It worked for a bit but of course they continue to grow and become a little straggly. I have been known to compare them to pubic hair but we won't go there! 😳

Keep being you and pop in and out as often as you feel like!

Sending Lots of love,

Karen 💜💙💚❤️💛