Waiting for liver re-section

Hi

First of all, you are welcome to rant whenever you wish. It's normal and healthy, after all we are all going through a difficult stage in our lives, so rant away! Your comments that "When do we, the patients, have their say?" concerns me. The answer is, of course, all the time. It is your body and it is up to you to decide what is suitable, what you can cope with after, of course, listening carefully to the advice of the professionals. If they are not listening, make sure that they do! I am very fortunate; from the very beginning of this nightmare, my GP, consultants, oncologist, chemo nurses etc have all been superb in giving me plenty of advice, but always ensuring that I make the decision. I made it clear from the very beginning that I do not want the issue "dressing up"and fed a lot of sanctimonious bs; I merely want to be told the truth, as it is at that stage. My consultant seemed very relieved and made the comment that many patients just do not want to know, which makes it difficult for the health professionals too. From the beginning, I read and researched a great deal, and ask the doctors and nurses many questions. I always receive helpful and knowledgeable replies and, if they don't know, they tell me so. I know that I am very fortunate with my NHS locally, and I am appreciate of their friendly and supportive efforts to help me.

I have an aggressive liver cancer. The first round of chemo did not work, the second has been successful in holding the spread, but my consultant is concerned that unless chemo is continued immediately after round two, it will rapidly take hold. Initially, I agreed that the third round of chemo should follow immediately after the second round ended. There may be other treatments, but I suspect that we are coming to the end of the road. After more research, and discussion with my partner, I decided to delay the next round of chemo for one month. I need time for myself and my partner to visit friends, relatives and have the occasional meal out together. I want to forget hospital visits, blood tests, scans and proddings for a while!  I have DIY projects to finish, a book to complete and I want to play the violin again! Silly things maybe, but things that will mean a lot to me later on in this journey. So, I have taken a month off and I am having a great time!  I will deal with whatever consequences follow. I live in hope, but I have no expectations.

So, make your views clear. Ask questions, and don't be afraid to say "No thank you" and "What if?" Remember, it is your body and your life, so claim it!

All good wishes

Thank you so much for taking the time to respond to my post. Given your circumstances it means even more to me. I, like you, have asked for worst case scenario. My problem is the language that has been used and it’s vagueness. I understand that until certain things happen they can’t give me more certainty, but using words like hopefully, and potentially, are really unhelpful. I am not asking for absolutes. I keep being told that once this or that happens, they’ll discuss my case at the MDT meeting. Then they’ll decide what to do next. I asked to speak with an oncologist, and was told that might not be possible, they’ll see if it’s appropriate! Maybe, if it was a primary cancer I’d understand, but not with a secondary with a 40% possibility of cure. I hope that you’re enjoying your break from treatment. I will remember your kind words in the weeks to come. Wishing you so much luck and hope for your future.

Thank you for your reply and kind comments. One thing that I should have replied to in your first message, was your comment about fatigue. How I empathise with you on this one, and for me this is the worst thing of the entire experience. My partner is rushing around doing things for me and never complains, yet even the smallest things make me exhausted. I had hoped that my month off chemo would see a rapid return to normal energy. Whilst I have a little more energy, is is still way off what it should be. Even walking the dog is an effort now, which is so frustrating. There we go, my rant over! Take care.

Once again I am humbled. I can’t believe that you have responded to me again! I don’t honestly think that was a rant though. I’m in complete agreement with you regarding the fatigue. I too am finding it harder to do my normal dog walks. I m really sorry that your break from treatment hasn’t given you back more energy. It’s lovely when our partners want to do things for us, but I can’t bear having my independence whittled away. I’m not a religious person, but I will certainly be saying a few prayers on behalf of us both, especially you. Take care and I hope you can make the most of your time before you resume treatment.

I saw your conversation. 

I am very much in the same boat. 

Undergoing chemo and feeling wiped put and wondering what the future holds, though knowing my prognosis may be just 18 months. 

I have found that the best way to get people to include you in the clinical discussions properly is to use the specialist oncology nurse allocated to you as your advocate. Keep in touch, asking questions  and stating your wishes and concerns. 

Always ask to be copied into the medical letters so you have Information and evidence, (which has also been really useful in claiming PIP benefit), for you are able to base your questions on. 

Our hospital has a macmillan cancer care drop in centre where it is possible to get its ofhelp and information around your illness and benefits and local support too.

Be proactive. 

Ask lots of questions.

Prepare lists of questions I  advance of appointments.

Write down what is said to help remember.

Know that nothing happens without your consent and agreement so you must be I  the loop.

If time is passing without action call the specialist nurse for an update and advice.

Thank you so much for your response. Since my last post I gave spoken to two colorectal nurses. I don’t seem able to speak to the same one. I have now been told that my local hospital will pass my biopsy and colonoscopy results onto the specialist hospital! I received a phone call from the specialist hospital yesterday making an appointment to speak with their consultant liver surgeon next Tuesday! I was so excited that I startled the poor girl making the call. Although I am scared of what’s to come, at least I’m now seeing progress with my situation. I am scared of what my prognosis is giving to be. I’ve tried thinking of the worst case scenario, but don’t think I can really cope with thinking that way. For now I’m going to be cautiously optimistic. Plenty of time to face the reality of my future. Sending you lots of luck for your future, and hoping you cope with your treatment without too much of a struggle.

Progress is always good.

Every day is a step forward.

We never know what is Coming next really but I have found that while there are ups and downs, there will always be days when I feel better, and able to enjoy doing things, unexpected treats and just savouring the sense of the here and now. 

Using good days to enjoy life is Important.

Vector in other good days to blitz some of the jobs you need to do such as will, and benefit applications.

Worst case scenarios help us plan for the worst

Optimism helps us live life to fhe full.

Think about the bucket list and plan to enjoy every day... even treatment days can be such fun!

Hello again

Thats good to hear and it is good news. Don't think too much about the future; just one day at a time is enough in our situation. I always try to live in hope, but I have no expectations. Yes, "cautiously optimistic" is a good way of putting it. I hope it goes well for you! Take care.

Good advice. Well, I managed to complete one item on my bucket list today - painting the gate, which I have wanted to do for ages. OK, it was only really half a gate as I began to lose energy, but I did it and will do the other half next week! Yes, I enjoy treatment days too (mostly). Such lovely people and we often have a good laugh together. Someone once told me that bad days are an opportunity to learn; they were right. Take care.

Thank you once again. The kindness you have shown me really does mean a lot and is a comfort. Keep doing whatever you’re doing to get through. Realistic, but optimistic is the way to go.