Bowel cancer returned

Lou, 

I definitely don't like how this site is set up. 

Yes it's hard telling parents, that's why I'm holding fire but I'm fifteen-odd years older than you. Also friends know of my agnosticism and my attitude to crank ideas. Even my sons mother (your age) who is a bit meusli and sandals, says owt in that regard.

Angry to blaming yourself?  Don't. It's nobody's fault you/we have to be pragmatic about what's now on our plate. Like you, I have been fit and healthy all my life - I didn't stop playing football until my early sixties.

The thought of having another operation makes me sick as well - my reasoning is I feel OK now so why have another op that has no guarantee except that recovering from it is hard. What if I do nothing? At 73 it's easier for me to say that. The elephant in the room is the word death, which isn't off the menu for me - it's the quality of life that comes between now and then that concerns me. And there's my dear old (pushing 14) dog, Banjo. What happens to her?

I put fuel in my car for the first time in God knows how long yesterday on my way to my parents place - one of the few bonuses of lockdown. Smiley face. I enjoyed the near-novelty of driving too! Another smiley face. 

I was gas-bagging on WhatsApp video to my pal in France this morning. We go back a long way and it includes the death of his then 14 year old son in a motor accident. Tomorrow its my mate in Perth WA - we go back even further and will probably gas bag for even longer. 

Whereabouts in the country do you live? 

Yes, I will let you know about hot Chemo, stem cell treatment and what happens if I say that I don't want any more surgery. 

Keep calm and carry on (yet another smiley face) 

Gaul. 

Hi Lou, I tried to reply yesterday however don't think it sent! The HIPEC surgery is major or at least mine was about 10 hours however everybody is different. If you are going to have it at Basingstoke then that is the best place in the world for this op. Prof Brendan Moran. Lucky lady. Imagine you will do many pretesrs to check your body is strong enough for the operation.I had a full day of exercise and other tests before I was given the green light to have the operation.That was in Sydney. Where only 1 in 10 who need the op are offered it as the chances are it will succed. If you have been offered it you are in a good space. It is frightening the prospect of another major operation. Fo me I had no choice my tumour grew literally overnight to the size of a four month fetus, I could easily have died without it.

Ask the specialist team exactly what your operation entails and what are the liklihood of C returning after the op. 

I like you exercise daily, eat really good healthy food, don't carry extra weight however this whole C phase has taught me life is an utter lottery so have given up questioning angryly why me. If you can shift to a 'what is is' space the simple pleasures in life become an even greater joy. Keep as positive as you can and remember you are a person not a diagnosis or a statistic on a bell curve chart and a good team should know that!

Hope this helps if you need any thing more let me know. Just ask.lots of questions get a second third fourth opinion if not happy. Basingstoke along with in a place in the US with a Paul Sugardaddy or Sugar something is the other top spot. I know my Sydney surgeon trained with Brendan Moran and they all keep very closely linked.

All the very best with your choices.

Julia

Hello Lou

i was sent to Basingstoke on March the 5th had op on the 6th ,had hot chemo, I was out within 10days, they were asulutely brilliant lovely caring people.i had 3 places my bowel, bladder and lining of stomache, I am well.

Friday I go for Pett Scan to see if I am clear , I am very apprehensive hopeful

Quiche

Many thanks for your reply Julia, 

I hope you are getting on OK now. 

Yes you are right I have to stop asking why it happened and just get on and get better. Don't have a lot of choice really. Yes I googled the Dr 's you mentioned. It seems Brendan Moran is the top man so hopefully I will have him. My tumour doesn't sound as dramatic as yours. It is on my large bowel and another one under the kidney. So far my digestion is OK, but seem to be passing a lot of gas. 

I do have a few questions if you don't mind. 

How were you after the surgery?

Did it take long to get back to your usual fitness?

Was it painful? I know everyone is different. I just hope it will help me. I am not ready to give up just yet. Too stubborn!

Take care, 

Thanks for the reply Quiche,

Great to hear you are well now and very reassuring to hear you got good treatment. Hope you don't mind me asking a few questions? How soon did you get back to your usual fitness after the surgery? Was it painful and are you allowed to say which surgeon you had?

I am waiting to hear back from them this week but the waiting is very difficult, I just want to back my bag and go over there and get it over with.

Lots of luck for your scan on Friday. I will keep my fingers crossed. It is a bit nerve racking having the scans and blood tests but they have to be done. 

Lou 

Hello Lou

My op went well, I woke up after I had no pain, they control the pain for you, I was in ICU for about 4 days, they are with you all the time.I felt ok .

i was put in another room after that, I had physio she took me for a walk, it was amazing, I eventually after 4 days managed to do the stairs, after that I did not look back, I should have been in for about 3weeks but left after 10 days, 

when at home I gradually started going out walking, I did a little further each day and eventually I felt good.

Eating I had small meals at first  after a couple of months back to normal,

I lost a stone during that time in hospital, but now I am fighting to keep the weight off

Good luck  with your op, keep in touch 

Quiche 

Hi Gaul, 

just wondered how you got on today. I think you said that you were going to speak to your specialist nurse. I am trying to get information about the hot chemo and what it involves.To answer your question, I live in Essex but not a typical Essex girl! Although I did wear white stilletoes in the 80's! And we danced round our handbags in the night clubs. Lol. Where on this sceptered Isle do you reside? 

I am a bit tearful today and trying to pull myself together and have a shower and go out and get some petrol in my car. It is almost running on fumes. Really don't feel I can cope with going through surgery and having chemotherapy again, especially as it doesn't seem to have done any good last time. 

There is a very useful section on here about how to tell someone you have cancer. I should have read it before telling my parents as I did the exact opposite as it advised. Just blurted it out without any preamble. Feel bad about that now. My mum had breast cancer and mastectomy about 10 years now and declined chemotherapy when it was offered. She is in good health thank goodness takes the dog out for her daily walk. A black greedy lab! And does no end of baking. (My mum not the dog) 

Take care and stay smiling 

Thanks Quiche, 

That is encouraging to hear. Glad you did so well. I will let you know what happens this week hopefully I'll hear something. I know it will be hard as I won't be able to have visitors and I will away from home.

But it is the best place for me to go. Not such a good day for me today. Don't feel like doing anything and really tired. 

Lou, I left a message with Oncology nurse who will reply within 48 hours (unsmiley face). Then I rang MacMillan specialist nurse (very good) and learned a few things, one of which is that there are number of trials available looking for victims. I'm up for (nearly) anything that bypasses surgery and Chemo. Like you, I've had a gut full (pun!) of being interfered with. I'm even considering doing nothing - my quality of life though not perfect is certainly bearable and I'm after quality of life rather than longevity. When I get the scan results it will be make your mind up time. 

I was speaking to my old mate in Perth Australia (I love WhatsApp) where I also used to live for many years. We kicked the elephant out of the room and talked about one of the facets of cancer. Death. We reasoned things through and it really helped me get all my ducks in a row. It was more rewarding rather than morbid. We shared a good laugh in the process! Honest. 

I live in a village near Taunton, Somerset. 

Dont be tearful. Even at your modest age you've outlived more than half of the rest of the World. And you haven't got MND like some poor buggers around half your age (how on Earth did Steven Hawking last that long?). 

My mum had a bowel cancer op 30+ years ago and she refused Chemo. Now she's 96. Take heart. Just another of our near-parallels. 

There's quite a big article in todays Telegraph about the 650,000 people that have had their cancer treatment put on hold thanks to covid. I'm one of them. 

Now for another glass of wine - it's 5 o'clock somewhere. 

Think positive!

. 

Thanks Gaul, 

Somerset is lovely you are lucky to live there. I have a friend who lives in Gloucestershire, she loves it there. I haven't told her about my cancer return yet but I expect I will do soon. Good to hear you are starting to get some answers I also am getting more information. I left a message for the specialist nurse to call me back.

Glad to hear your mum is so hale and hearty. She sounds brilliant. 

I am still employed so will have to arrange a sick note, can't go to the GP as I am shielding. Really don't know if I will be able to go back. I was only back a month so don't know if I will be paid, but that is the least of my worries now.

My good friend's brother and his family lives in Perth Australia and he has often asked me to go out there with him.. That isn't going to happen for a while anyway now.

Think I will add some wine to my online shop, I will give you a toast. I don't think it will do me any harm. Can't be worse than the chemo.It comes tomorrow, I still get excited about having online shopping, as by the time it gets delivered I have forgotten what I have ordered!

Sorry to hear that your treatment was on hold, I would have probably carried on with my chemotherapy if covid hadn't come into the world in March. I am sure it will be in the news later.

Best wishes Gaul, and stay strong.

Lou