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For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Good luck today Heidi, yes let us know how you get on.
really hope all went well with your scan results today (((( hugs )))
Fingers crossed for you Heidi xxxxx xxxxx surprised I can type!
How did your results go.
You are bound to feel a bit low in the circumstances - blimey, if I were you I'd be feeling pretty stressed just through having the builders in & your daughter poorly, never mind all the cancer sh*t to deal with. I hope the lymph node settles down. It sounds good to me that your oncologist feels more treatment is not warranted at this point, but is going to keep a close eye on you.
Not sure which chemo regime you've been on, but some can cause flu-like bodily aches & pains. See if you can get some pain relief if you can. Get as much rest as you can, though I appreciate this could be difficult with four children!
It is only natural to worry about the day they say there's no more they can do. I am fortunate because I now have the hope of surgery, which I was originally told was unlikely. So most of the time (except when chemo is making me feel a bit crap) I am very positive now. But I still know that if the chemo stops working & the tumours start to grow or new ones appear, that could all change, and it's hard sometimes to put that to the back of my mind. I try to just take things one day at a time & be grateful for the new hope I've been given.
Sending lots of love & positive vibes your way,
Hi MiniG, hope you don't mind me asking and I won't mind if you don't want to go into detail but what surgery are you going to have and did you clinical oncologist suggest the surgery? Reason is I am having a bit of a battle with my clinical oncologist at the moment re surgery on a growth in my pelvis, she says it would be too invasive, too massive etc. I wouldn't like to think she is writing me off and what she really means is too expensive :(
Hi Heidi, sorry to hear you are feeling low, and know exactly what you mean about the family being in denial thats why I come on here when I'm at work! If they saw me on here they would tell me off for being pessimistic! :) They are very supportive and I know they say what they do because they love me so much. I am feeling physically crap at the moment as well aching etc it is the chemo and the steroids but I only have one more cycle to go then a three month break so that keeps me going. What I try to do is take each day as it comes and do what I can on that day so if I feel crap I do less if I feel better I do a bit more. I am going to look into compimentary therapy like reflexology and such can't harm and having someone rub my feet for an hour sound lovely to me! and sometimes I feel like being 'babied' if you know what I mean?
Oh dear you are going through alot atm, am sorry hope things improve soon.
So your onc is putting off treatment for awhile, think as you are feeling rough it is a good idea, let your body recover a bit. Your dr's seem to be on the ball.
I do know what you mean about how long you have till they say they cannot help you, I feel like that atm , I have had 6 mths off chemo, my lung mets have grown , so chemo did'nt work, but onc says I can go 6 mths before another scan and to see him. I just wonder if he is giving me quality time instead of quantity if you know what I mean. My hubby wants me to be checked in 3 mths so am going to do that.
I like chatting on here too about how I feel etc, as you know someone is going to listen and understand what we are all going through.
Sending you a hug and positive vibes,
Love Pam xxx
The surgery will be a liver re-section - ie they will remove part of my liver. It is very major surgery so a bit scary! My oncologist was very negative about the prospect of surgery, though he did a referral to a liver surgeon at another hospital because apparently that is "routine". They do this kind of surgery mainly on people who have secondary bowel cancer in the liver, whereas I have secondary anal cancer which is much more rare.
I too felt my oncologist was writing me off. But when I saw the surgeon he had a completely different attitude. There isn't a lot of data to say if surgery will give me a better outcome, but the surgeon says that is simply because there are too few cases to learn much from statistics. He says there is equally no evidence that it won't give me a better outcome! He thinks it is well worth doing the surgery, if things continue to go well with the chemo.
My oncologist had previously given me duff info about surgery - I developed an anal/vaginal fistula during radiotherapy for the original anal tumour, and he told me I would have to have a permanent colostomy or live with it! This turned out to be way too pessimistic. When I saw the colo-rectal surgeon she said it would be a temp colostomy & I would only need a permanent one if the fistula didn't heal and they weren't able to repair it successfully. In the end it healed up on its own & I never even had a temp colostomy!
So I would say ask if you can be referred to a surgeon - even if the surgeon agrees with the oncologist, at least you will have heard it from them. If you are able to do this financially, try and get the initial consultation as a private patient, to speed things up. With hindsight, I would have done this, as I waited months to see the surgeon in the end. Also, the surgeon wanted me to have a PET scan, but when I saw him he said there had been a "funding issue" (which basically means my NHS trust wouldn't pay for it). This now makes me think the oncologist did not think I was worth the cost of a PET scan - which would explain why he was quite vague & evasive when I tried to chase up the scan with him!
Hope this is helpful
Yes very helpful, I have never been a pushy person and now when I feel at my lowest (physically) I find that I am continually having to turn myself into this sort of person, it is hard feel like I am walking up hill through treacle most of the time and having to question everything I am told :( when what I would like to do is relax and be able to trust that everyone (professionals) will do the best for me, but sadly this isn't the case Ive found. So I will see a surgeon privately but I will get my last session of chemo out the way first, cos I am knackered! :)
Good luck with surgery, am sure you will do well , and great the liver regnerates itself, I think.
I keep thinking about what my onc said about not being able to operate or have laser on my lung mets, do wonder if I should see a lung surgeon or not, I want to believe my onc knows what he is talking about, but when I read your message am not so sure now. Mine were tiny at first but just keep growing, and yet he says I can have another 6 months off chemo. It is hard to know what to do for the best, as I don't really want more chemo if I can help it.
Makes me so cross when people cannot get scans, when they need them, it should.nt be about money grrrrrrrrrrrrrrrr.
I wish you all the best Mini with everything.
Love Pam x
Am sorry you are having to be pushy now, but if the surgeon will operate it will be worth it.
Not sure if you read my post to Mini G, but as I said I am not sure whether I should see a lung surgeon, to see what he thinks.
Good luck with everything , let us know how you get on.
Yes the liver does regrow, a lady I see at The Christie has a whole new one now!
Pam, I don't know if you remember me telling you that nobody will operate on your lungs if you have spread elsewhere? However if you feel the need to ask a surgeon go ahead, just to settle your mind.
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