sandie-in-france
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Tony
I my heart goes out to you and I hope through your tears and anguish you can one day find peace and happiness again.
My thoughts are with you
Sandie
Tony
I have just spent a week in a hospice and they did wonders for pain management and rebalancing medications. I am now back home and feel more energised as I have the pain under control. I think it would be so worthwhile your wife trying a hospice just for some respite and to help her with the pain management and other issues she may have or just to talk to other people in a similar situation to learn how they are coping.
Did you contact AMMF? They really are an amazing organisation and will be able to give you so much benefit from their experiences and knowledge.
Best wishes
SandieHi Kris
It’s been a long time since we have chatted, but it’s great than we can still do so.Sorry to hear you had to go back into hospital. I hope they’ve managed to sort you out and put you back on track.
I have been in a hospice to get my pain under control which has proved very successful. Whilst there I unfortunately discovered I have metastiacies to my right kidney and right lung and am awaiting an appointment to discuss possible options. I’m so not keen on having any more chemo, as I found one doesn’t get any quality of life and there’s no guarantees of any real success, but I’m keeping my options open.
Take good care of you
Sandie
xHi Hazel
I am Sandie and I also have cc and live in the UK. Like your daughter I had a resection followed by chemo and radio. The chemo may not be easy but it may not be too tough either, as we each react differently. If your daughter stays positive and finds lots to laugh about she will get through it. There are lots of coping strategies I discovered to help with side effects and also to help with talking to people about progress whilst on chemo. Like your daughter, I saw Prof Valle for a second opinion and he really is excellent and honest. My advice would be to stay in touch with Helen at AMMF who has an amazing knowledge and network of people that can offer advice. (AMMF also have a discussion on board on their site). Also to use these forums to talk to others who may have experienced similar side effects to the ones your daughter may go through.
Take care and I wish your daughter and yourself the best.
Sandie
xBrigette,
I had six months of gem/cys and got 60% tumour reduction. It was a harsh regime and I suffered extreme fatigue and horrid mouth ulcers, but the result meant Ithat following treatment I had 18 months before the tumours stared growing again which gave me excellent quality of life. Everyone reacts differently and there is little advice one can give because of the differng reactions. I would suggest that you drink plenty of liquids. (2-3 litres every day) and get advice as soon as a side effect occurs.
I wish you luck
Sandie xHi Tony,
I too have lymph node involvement and due to the fact they are close to my aorta, treatment is not really an option and I have opted to take the quality of life course. In the past few weeks I have had uncomfortable dull aches in my lower back and across my front between my hips. I have been taking paraceutomol, but in the last couple of days the pain has worsened and I now cannot lie on my back. I too do not want yo start on morphine but realise that I am heading in that direction. I think when the time comes to start morphine, it will be another quality of life decision. I appreciate this answer won’t offer you much help.
I wish you and your wife the best.
Thinking of you
SandieTony
I too have CC and live near Nottingham. I had a liver resection in January 2012 but a year later it recurred in my lymph nodes. I was told I had a maximum of 21 months, that maximum date came and went . Don’t use the any dates you are given as a target or guideline, we are all different and a positive attitude together with lots of love, fun and laughter is the best medicine.
The Christie is excellent and I would also encourage you to contact AMMF who are the only cc charity in the UK and are absolutely excellent.
I wish you are your wife the best.
SandieThank you for your lovely comments. I do not post very often, but regularly read the posts and am so often brought to tears by the sadness, strength, support and love that emanates from people using this site. I so wish none of us had to have even heard for this dreadful disease..
Keep smiling and bless you all.
xHi,
I had a portal vein embolisation in Nov 2011 prior to a liver resection in Jan 2012. I too became tired and it just got worse until I had the resection. It was explained to me that a lot of the tiredness is due to the fact that the body uses up to 3,000 calories a day just growing the new part of the liver – no wonder I felt exhausted! I think it is important to maintain a good diet during this process – ensure you eat lots of green vegetables (spinach, broccoli) and red vegetables (fresh tomatoes and red peppers) and avoid alcoho. Are you going to have a liver resection? If so, the tiredness will continue for some after that, but it is worth it. My advice is, if you feel tired, lie down and sleep. Your body can concentrate on helping you more when you are asleep. If the operation is a success, it will all be worth it.
Keep smiling and fighting
Sandie
xThank you to you all … you have reinforced that I have made the right decision.
I am thoroughly enjoying my trip and building a lot of memories to live on for the months to come. I have had the chance to see dolphins up close, jet boating, geyser watching, horse riding and even did a bungy jump. I have done all of these adventures with my precious Little Bear who has been through so much with. He is helping raise awareness of this dreadful disease for AMMF in the UK and I’m sure if you log on to their website you will be able to meet him.
Thank you for support and thank to this amazing site.
Sandie
x
