Hi lu , my husband has nueroendocrine tumour his primary is in his lung with mets to his lymph nodes in his chest and his liver and we now think it's gone to his brain , he has an irregular heartbeat and had 2 different types of chemo etopocide /carboplatin and cav  he,s just had radiotherapy to help relieve the symptoms in his lymph nodes he didn't have any probs with his heart due to chemo but as you say he was kept an eye on hugs and hope all goes well for your mum xx Gwyneth

Hi Gwyneth,

Thank you so much for your reply. To be honest, I wasn't sure I was going to find anybody who had experience of this sort of cancer. It has completely knocked me for six. Because bowel cancer runs in our family and because of my mum's symptoms, we just assumed it was going to be that. Obviously no kind of cancer is good but at least that would have 'made sense' in a way. As it stands, I can't quite get my head around this and feel completely thrown in at the deep end because I was preparing myself for something completely different ...

I'm sorry to hear about your husband but thank you for your info about the heart condition. I read some of your other posts and I hope the headaches and sickness are under control and that you find out what's causing them soon.

Lu x

Hi Lu

Just caught up with  your new thread and though have no knowledge about your Mum's cancer do hope that her next appointment will give you more information and an idea of when treatment will begin.  I am sure she will well assessed by her medical team in relation to her irregular heart beat and all medical history is usually gone through prior to chemo.  The chemo nurses are a mine of information too (think I asked more questions that my hubby did!!) and once she has the treatment plan in place you are usually given access phone numbers for any queries.  When my hubby had had chemo (on a day ward) we found it a good idea to take a few snacks and reading material/music.  All chemo is tailored to the particular patient and side effects really do differ from person to person.  Hubby was given a 'chemo diary' to log how he felt and any symptoms he experienced which then enabled the staff to offer other medications to help.  When  his appetite was low we were recommended to switch to milk based drinks/soups as these were easy to digest (he is still drinking around 2pts a milk a day) and buddies on the forum kept me going with suggestions as treatment progressed.  Certainly taking things day to day is the best way I have found of 'coping' with our journey and two and a half years on am 'still learning' (probably more about myself than the cancer to be honest) and adapting accordingly.  Look after yourself and hope your Mum's next appointment gives you some understanding. Virtual hugs to you and the family.Jules x

Hi Jules,

Thank you for your reply and your advice. Need all the advice on chemo we can get and getting it from somebody with first hand experience is so useful!  I hope your husband is doing well at the moment?

We're going in to see the oncologist today - probably in around an hour or so. I've promised I'll go into the meeting this time as I've been voted in by my family as the one most likely to actually absorb the information without going into a complete daze! We'll see if I live up to the expectations.

My mum has been up and down the last couple of days. She's been really trying with her diet and eating a lot more fruit and drinking smoothies, which she said did her good and improved her digestion. However, yesterday she seemed to go down a bit and, if I'm honest, it was touch and go whether she would actually make it in to see the consultant today. She's feeling very wobbly and the toilet visits are still very frequent. I hate seeing her this way but am just trying to be practical. I was wondering if anyone knew protocol for this kind of situation if it arises in the future? What happens if my mum can't make her appointments? The problem is that I'm not sure whether the issue is really psychological (i.e. that she's nervous and just can't face going) or she genuinely doesn't have the strength to. It wouldn't surprise me if it was the latter - she is looking very frail at the moment.

I've connected with some people on a specialist neuroendocrine forum - one person who is actually under the same doctor as my mum, so that's quite good. She was able to tell me about the hospital we're going to and even advise me on parking, etc. Forums like that and this one are a godsend really.

Honestly not sure what today is going to bring but I'll update later on if I'm able.

Lu x

Hi Lu,

Just caught up with this thread and hope today brings your mum and your family the answers you need.

It maybe worth jotting down your question (about the possibility of missing appointments in the future) and of course, anything else that you've thought of to ask. It's amazing how things go out of your head when you're sitting in the consultant's room.

Glad you've found a forum which is specific to your mum's condition. This will no doubt help support you and your family from people with first hand experience.

Take care, will be thinking of you,

Hugs to you all, Jo xx

Hi Lu

Hope your Mum and  yourself found the meeting today helpful and managed to get answers to the questions you have.  So far the only reason we were unable to get to an appointment was transport issues so we were able to reschedule. It will obviously vary from area to area but a phone call to explain is usually enough to re-book.  If you Mum was too frail it may that she would be taken into hospital to sort issues out.  As to the chemo, if and when this is begun,  my husband was invited (I went too) to look around the local unit before treatment started (to familarise yourself with the surroundings/amenities) and there are always blood tests beforehand to make sure yoursystem can take treatment on a given day.  Am sure your Mum (as well as you and the family) will be apprehensive before every appointment/treatment and can honestly say I still get 'nervous tummy' before we have check ups and my hubby rarely talks about things unless he is forced to as it upsets him.  Am sure  your Mum will be able to be prescribed some medication to help with her current symptoms when she explains how she is feeling and once this is organised you may well be able to arranged 'repeat prescriptions' through GP and the local pharmacy (we are now on first name terms with out local chemist who will also home delivery it/when it becomes difficult to collect).

Its so hard  getting your head around everything at once so try to take it as it comes (I know that's easier said than done)  but sounds as though you have already gone some good forum buddies who will understand more fully what is going on as regards your Mum's specific cancer.

Thanks for asking about my husband.  Life is certainly a lot slower for him these days but I am thankful that at present his pain is under control.  Sadly I cannot take contol and make things go away so we do our best to 'manage' on a daily basis and our children and grandchildren give us lots of pleasure when they visit.  Somehow the little things in life now mean so much more to me but even after almost 37yrs of marriage I still sometimes wonder what he is thinking about but there are some things you just have to cope with come what may.  Look after yourself.Jules x

Hi both,

Just thought I'd do a quick update about what happened today. I'm still reeling a bit and getting over the intense atmosphere.

My mum managed it to her appointment in the end but thank you Jules and Jo for your advice about missing appointments. I will keep that in mind for future. There was a couple of 'near misses' with the toilets but as soon as we found them my mum seemed to relax a little more.

She then went off to get weighed - she's lost quite a lot. Down to eight and a half stone. This might not sound like a big deal but she is a tall woman - about 5ft10 - so immediately the nurses were quite serious and questioning. We then went to see the specialist and my god ... he wasn't half abrupt. We were sort of expecting this but there was no beating about the bush. He explained that the cancer my mum has, whilst usually slow-growing, is actually really aggressive and (as we know) has already spread. A lot of what he said seemed to contradict what was said in the original consultation (i.e. about the cancer being slow growing) although I was sort of prepared for that - as little as I know about cancer, I don't think 'slow growing' cancer acts like my mum's has. He also seemed to think that the cancer DID start in the bowel, rather than the lung (which she was originally told) - again I had a little 'I knew that' moment because, again, I couldn't understand how a 'small spot' of cancer in the lung could spawn a massive tumour in the bowel. Obviously not an expert, but the one in the bowel MUST have been growing longer - and now this has been confirmed.

The only option now is chemo, if that doesn't work (and the doctor warned it was a bit iffy because of the kind of cancer it is) then well ... I don't really want to think about that part yet (although I will have to face up to it soon).

I don't really know how to feel at the moment. I'm so used to thinking the worst and it not being the worst. This time it is the worst. How do I cope with that?

Lu x

Hi Lu

How I wish could just give you a hug right now but it will just have to be a virtual one.  I am sad that the consultant was so abrupt but sadly there is no easy way to be given this kind of news. I did not know where I would find the strength to cope when it happened to us but somehow you do.  First and foremost if your Mum chooses to have the chemotherapy and it will be her choice (though expect as a close family you will talk it all through together) you can hold on to the hope that it could slow things down and improve her current symptoms so that she can enjoy extra time  but no one can give you a definitive answer. My husband decided to take that chance and though only had a short course of chemo it definitely had an effect in holding growth back for a while and thus he was lucky enough to see our second grandchild born.

Coping comes slowly and you need to continue to function day to day as I am sure it helps both yourself and your Mum.  No one wants this kind of journey but the forum will continue to read/chat whenever you want to off load/seek advice as I have found it easier to chat here and my husband knows I have my virtual friends as well as the family to help me along the way. All your emotions will be churning right now and its hard to think straight - perfectly normal but draw on the support around you and ask for help when you need it.  Take care. Jules x

Hi Lu,

Thank you for updating us about your mum. It's such a shame that the consultant was so abrupt and to the point, but as Jules rightly said, there is no easy way to hear such news. Consultants vary so much in their bedside manner.

Hopefully, as you all process the news,  your mum will be able to decide whether she wants to have the chemo. Obviously everyone has their own views and experiences of chemo, but I had chemo and radiotherapy and it did reduce the size of my tumour.

Obviously your mum will have the casting vote about whether to accept the treatment or not, but I'm sure you'll all discuss it as a family.

Have the hospital given you some time to consider the next steps?

Somehow, Lu, you will cope, but as Jules' says, it does come slowly and it's all about taking things a day at a time.

Offload here to your virtual friends, as and when you need to, but remember to ask for (and take) support from real family and friends too.

Hugs to you all, Jo xx

Hi Jules and Jo,

Thank you so much for your lovely replies. I needed a little bit of time not thinking about cancer yesterday evening and this morning and feel that's been good for me. I feel I can now face this with a cool, practical head and I think the rest of my family have done the same. Even thinking about helping my mum prepare for chemo over the past week or so has made me feel emotional and overwhelmed but now I feel I can. Even little things like buying a new thermometer so we can keep track of her temperature during the treatment and finding the information for the nearest A&E (I think I said earlier that noone in my family has needed to go into hospital for anything other than outpatient services for as long as I can rememeber- so this is all new to us!) makes me feel more in control. If I can keep this 'practical head' on for now, I think I'll stand a better chance of coping.

I think we've all decided that it would be good for my mum to try the chemo. Was slightly taken aback by how flippant the doctor was about the possibility of it not working but, like you say, they have to be honest with us. The doctor also said he wouldn't have put her forward as a candidate for it if he didn't think she was strong enough so we may as well take what is offered for the moment. She had a lot of blood tests done yesterday and these must have been pushed through super quick because she already got a phone call to schedule her first session today - it's 5th August, so we have about ten days to prepare her.

I think what I forgot about is that, in the meantime, the doctor is going to do everything he can to improve her symptoms and make her more comfortable. This is the most important thing for me. I would love it if she was able to potter round the house a little bit more again or be able to sit and read or watch the TV without discomfort. We've been prescribed all sorts of things that will hopefully help her regain her strength and appetite before chemo. Of course, I was imagining my mum going into chemo as she is at the moment- and I couldn't imagine it! But maybe if she can gain a little more strength, she will fare better. She's already agreed to take regular OTC painkillers until we get her prescription through and the change in her is so nice to see - sitting up, alert, writing e-mails to friends and family, even doing a few gentle chores around the house. Of course I'm under no illusion that this is a sign or her getting better but you have no idea how HAPPY it makes me to see her look more relaxed. It's small things at the moment.

I know the chemo is the next hurdle to overcome and there is no predicting how she will react to it. However, I am content at the moment to prepare myself quietly for whatever is going to happen and just see to it that my mum is comfortable. I have told a few of my friends who have been so supportive and obviously I have the rest of my family and a whole lot of people who care a great deal about my mum. We are not alone, no matter what happens. And of course, there's this forum - which has actually been more help to me than I could have even imagined it would be. Just to connect with people who are going through similar things is the best thing and I'm so grateful to people like you, Jules and Jo, for being so welcoming and reassuring. When I've got over the initial shock of all of this happening, I hope I will be able to support others in the way I have been supported so far.

Lu x