sambaman
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I also experienced night sweats last summer before I was diagnosed with cancer. I was woken up and had to change my shirt in the night, but then they left once I had been diagnosed. They did return for a short time before I was told the cancer had returned a month or so ago but I have not experienced them again.
Tom
Dear Kris and Lisa,
I hope all of your treatments are helping and working to help you fight this disease. All the very best to you both.
Tom
Hi again all, thought I would give you a bit of an update. I started my next next cycle of chemo yesterday with Gemzar and Cisplatin.
But with regards my hip I met with an orthopaedist on Monday to decide upon a course of action, had an x-ray and it turns out my left hip is of most concern as the socket of the joint is affected so with my prognosis they are worried about recovery times. I have been referred to the Royal National Orthopaedic Hospital (which is the leading bone tumour unit in the UK) for a more specialised opinion. I have an appointment tomorrow morning so hopefully I will have a plan of action tomorrow! It is causing me a lot of hassle as it is affecting my mobility which is the most important thing to me as it means I cannot get out and about as much as I want to, being forced to stay in makes me feel more like a prisoner to this disease and brings me down.
Tom
Afternoon guys and girls,
Next week is shaping up to be a busy one! I have an appointment to see the orthopedist on Monday to discuss my hip which is getting better day by day but still causing me problems. Then I have chemotherapy on Tuesday and have received a letter today containing my appointment for the Royal Marsden Hospital for Friday to see what they can offer.j
Am also seeing my oncologist tomorrow morning, I am going to ask for a bit more information as when I saw her last week I didn’t really ask any questions after the I was given my prognosis, which was understandable, as I wasn’t thinking straight at the time. But now my head is feeling a bit clearer I can hopefully begin to understand things a bit more.
This week I have generally been feeling ok, helped by the fact it has been my week off chemo, just had the problems with my hip. Will be interesting to see if my CA-19 levels have increased (I was told they were at 80 last week). I am expecting them to have gone up but we shall see. The lumps on my head are still evident and I need some more info on those too.
Wishing everyone a great weekend!
Tom
I am in the UK where I’m sure you know we have a National Health Service which has its detractors for a variety of reasons but my experience of it is once they have diagnosed a disease and deal with it the level of care is unparalleled. Before during and after my surgery all levels of care were absolutely amazing.
We also have private health which I am taking advantage of for my chemotherapy, the amount of drugs and options available are more numerous than the NHS, as some drugs are not available (but saying that some operations, such as my liver resection are not carried out privately). It is also, provided you have insurance, much quicker a process. Please be aware I am not criticising the NHS at all, I was so thankful for all the care given to me during my recovery.
I have the best of both worlds since I have taken advantage of both options (I have private insurance through my employer). I feel sorry for everyone who cannot get the highest levels of care due to the simple fact of money, it is in my opinion disgraceful, but a sign of the times.
Today has been much better, I struggled again to get out of bed due to my hip, I think I must have hurt it in some way during the night. But there has been a lot of improvement today and I can now move around a lot easier. I chased the orthopedist again today and am expecting to hear from them tomorrow.
I do have copies of my most recent scans and records which I am going to forward to other specialists to garner their opinions.
Hi Rose May
i underwent a resection in November 08, removed almost 60% of my liver and my surgeon advised it would be back to its normal size by Christmas. Apparently up to 75%-80% of the liver can be removed and it will regenerate.
I did not feel any effects during the regeneration process and haven’t had any problems with liver function since, just a recurrence in other areas.
Tom
Hi all,
Thanks for your messages of love and support. I have of course told my family, I am back living at home now since my surgery so they have been with me every step of the way. Obviously they are finding it difficult to deal with this as am I but we are attempting to be strong together. There have been tears over the weekend, and I am thinking how to tell the rest of my family and specific friends.
I do think the hip area is of concern right now, I am waiting to hear early this week about a course of action as I do get some pain from it at the min. It has only come on since I was told about it so I am unsure whether the pain is from me overcompensating and trying to protect the area too much.
My father is my great help at the minute speaking to the other doctors from me, and he will get in touch with the other docs, does anyone have any specific recommendations for me? I do not have any specific names of other oncologists, but am willing to contact anyone who can offer another opinion.
I keep trying to stay positive and tell myself I am young so I can fight this, but am still coming to terms with it. I just can’t believe it is happening to me, I have too many things to experience in life.
Tom
David,
All my best wishes for appointment with the oncologist, I have my next CT etc on Wednesday and completely share your view that the waiting around is the worst part.
Take care
Tom
Hi Terri, that is great news , all my best wishes for the recovery! I was out of bed on day 2, and out of hospital on day 9.
Tom
Back pain was the reason why I went to see my doctor in September 08, leading to the diagnosis of cc. I still suffer from pain and have had difficulty controlling it. I have been prescribed Oxycodon, I am now taking 40mg/day which seems to be working well.
I have trouble sleeping at the moment and have Oramorph to take if needed during the night. I am currently undergoing chemo, have been since early December (Gemcitabine) and had Cisplatin added for the first time last week. The chemo could be the reason for the back pain, I hadn’t thought about it before to be honest.
Hi everyone, once again thank you for all your response, suggestions and support. I am struggling to cope with the news at the moment but have a strong family and friends to help me.
I have a CT scan on Wednesday which will show the spread of the disease and determine the extent of it. And then where we go from there who knows.
Tom
Hi all,
Thank you for all your kind words of support. I am going to get in touch with one of the other specialists for a second opinion on my condition. I am off today for my first chemo session with cisplatin added to the gemzar, so fingers crossed I will feel ok.
Many thanks again, I am eternally grateful.
Tom
Carol,
I too am recovering from my resection, approx 4 months since the operation now. I have been having problems with my back, and this has caused me problems with sleep, which is the main issue I have.
I initially began to recover very quickly and was up and running during the Christmas time managing to go out and enjoy myself. But since then I seem to have gone downhill, this may be due to the effects of my chemotherapy regime. I struggle to get out of the house at the moment for any period of time, making me feel cooped up and frustrated. I am trying to talk to people about it but am a very private person and keep a lot to myself, which I am trying to rectify. I just feel I don’t want to burden other people with my problems.
I agree that is the not knowing which is the worst part, every new pain seems to fill me with dread that the cancer is returning and things are going downhill. I am 26, so also young to have been diagnosed.
Tom
Hi Suzanne,
I underwent a resection in October 2008. I can say that I did not have any major issues with my recovery (with reagrds to my liver) following it. My resection removed all the tumour in my liver, three lymph nodes below the liver and bile duct, which the surgeons were not expecting, thus the operation took nine hours rather than the four expected.
My main issues were with the drains which I had in each side. Whilst the drains were still inside my body they were not filling with liquid but as soon as I had them removed a lot of liquid seeped and I had bags over them for a couple of weeks.
For recovery just eat as soon as you are allowed, my appetite returned quickly and was back on a full diet only a few days after surgery, which I was not expecting.
My abdomen muscles still haven’t recovered totally, they are still feeling tight but this is to be expected less than three months after surgery I guess? How long did you take to recover?
I wish you all the very best for the surgery and the future.
Tom
