secondary bowel cancer

Hi Bramblewoods

And I am so sorry you find yourself here.

I take it your husbands Primary is in the colon?

Do you know yet what Chemo he will be on?

My husbands had a "port-a cath" fitted - which is similar to a PICC line and his "regime" involved a day at the hospital with IV Chemo and then he was given the 46 hour "pump" - it's in a wee bum bag "thingy" and it is very discreet.

When you find out a bit more about the chemo he is on - please let us know and there will be loads of information available to you.

My husband is on Folfiri.

Try not to panic too much  XX

Jinty XX

Hi MissyB,

Sorry you find yourself here.

It can take a while for the reality of having this disease to "kick in".

Have you spoken with your husbands Oncologist - has he given your husband a treatment plan?

There seems to be no "normal" in how people react to Chemo - some carry on and are not tired - some are completely wiped out...

It does seem to me it depends on your HB levels whether you have any "energy" or not - so you may want to ask about his blood levels?

Is he eating OK?

We too have had our world turned upside down - we had sold our house and were just about to move to Italy when he was diagnosed - so I can empathise.

Please ask anything you want on here - even if you think it's trivial-there are quite a few of us going through the same thing - unfortunately.

Jinty X

Welcome to Macland,

I had a PICC line for chemo and had FOLFOX for 6 months for secondary bowel cancer. Although a nuisance it made administering the chemo very easy and I soon good used to being attached to it for 48 hours - much easier than having the nurses search for a vein each time you go in for an infusion. More to the point  after two years of treatment including chemo radiation, 3 surgeries and then 6 months folfox I am currently NED so definately worth it.

Hope all goes well.

Cathie x

Hi jinty

Thanks its nice to hear from others.

The primary was in the colon and the last time the chemo was ok at begining but left him exhaused by the last two sessions and all were given in hospital.

Am spending so much time  driving to and from hospitals with hubby I am unable to think, its so selfish of me to be so put out by the drive its about 2 hours but with winter coming it will get longer!

The picc line goes in on tuesaday and his first chemo is on wed it will be 5fu and oxaliplatin by iv then he gets a 48 hour pump, i worry about this the most because if it gives problems we are so far from the hospital and currently the lane to our house is flooded (this happens every year but is early and i worry it may stay longer than normal until now we always comsidered it a minor inconvience for living in such a pretty place! )

My sister is also in the middle of treatment for uterine cancer.

How did your husband find the port a cath was it painful and has it given trouble?

Bramblewoods x

Its so hard to cope with everything at once isn't it, My mind wont settle or sleep like that my hubby is still trying to carry on as if nothing is happening and talking about next step in our plans for the garden we were about to start a business very small to help others become small holders Mac is only 52 and our youngest has just gone to uni. The oncologist said that the treatment won't cure the cancer but she said we were to look at it as living with cancer not dieing of it.

I have been making Kombucha tea for years now and my hubby says it helped before with his energy levels so maybe worth trying that to see if it helps

Bramblewoods,

My advice would be to get our GP and District nurse involved - they may be able to arrange to have the pump disconnected at home? Which would save you having to drive - and it is good to have them "on board"

The fact that the doctor has said "living with" instead of "dying of" is VERY good news!

Try not to think too far ahead and just deal with each situation as it comes or hopefully doesn't:

Given our experience, which isn't everyones !!

I would advise getting the following "In" on a "Just in Case" basis

Loperamide in case of the "runs"  (or Codiene Phosphate)

Movicol in case of "constipation"

A Thermometer - to check his temp (if needed)

Co-Codamol or whatever painkillers the doctors prescribe.

Nystan - in case of oral thrush - which can make eating unpleasant and food "taste funny".

I hope you won't "need" any of these but it is good to at least feel "prepared" - I had none of the above "in" and felt really stupid when I was asked over the phone had I given him X or X or X....

Also, has your husband been prescribed anti-depressants? - They can take a few months to "kick in" but they have helped my husband cope with the diagnosis a great deal.

Just let him make his plans - as long as he doesn't try and overdo it - it is important to be positive.

We also have a son (18) he has just gone into 3rd year at Uni - we bought a flat just round the corner from him - (poor guy) - so he can still be independent AND see his Dad :)

Keep asking 

Love

JintyXX

Sorry didn't answer your question - no issues with the Port-a-Cath - except most GP's and non-Oncologists - still use his arm for bloods - which is REALLY ANNOYING!!

Well we have had a  bad week, the placing of the picc went ok, still very unsure about this but hubby says its not sore in any way. The trip was the worst bit it takes about 2 hours each way and left him very tired. On wed we arrived back at hospital and after waiting over an hour were told not getting chemo as bloods to high in folic acid but woulld next week, so they checked the line and of we went both of us tired by time we got home! We had a visit yesterday from the pallative care nurse who has got the pain meds sorted and also was very good to talk to in a general way. I felt like she was more there for me in many ways. Not getting the chemo has frustrated the other half but may be for the best as now we can get "used to" the new pain relief and any side effects noted before we get chemo.

I have also got my kit ready as suggested have to thank you for this it does help to know what to have in so if things happen I feel as I can cope, I also added a box of bits for the car just in case!

Also spent time sorting out the last of the work I was doing and finally feel as if I can concentrate again, my sister has told me that the house elf will arrive in a few days to do a good clean and tidy of the house,  its nice to not need to panic over the little things isn't it.

Does anyone else feel that their oncologist drip feeds them information or is that just me as when we last talked she avoided answering some questions by going down other paths and we found it hard to pin her down on things. Do they get to decide when and what we need to know?