Hi Mary,

That's quite a mouthful! I hope that everything has been explained to you  and that you understand exactly what is going to be done. Do you have a date for surgery now and how are you feeling about it, now that you've had some time for it to sink in? 

I shall be thinking of you and I sincerely hope that it all goes well? As you know, we are always here for you.

Kind regards,

Jolamine xx

Thank you.The intention is to remove the sarcoma, the left kidney, the spleen, the left bowel and possibly part of the pancreas.  It seems strange no longer being in pre-diagnosis. I still feel well, no pain, eating the same as usual, and went for a one mile walk this afternoon.  I am unsure that it has completely sunk in, still feels like writing a story about someone else. When reality does occasionally sink in, then I cry. The operation is due to be 21st November. I don't want all that taken away from me, but deep inside I know it has to be done, well that's the logical thinking sometimes.There's an outpatients pre-op appointment on the 15th.

Hi Mary,

I suspect that to have been hit with so much, this diagnosis would have felt quite unreal, no matter how soon you heard. I am sure that you feel in trepidation of so much surgery. It sounds as if you'll have the most experienced surgeons in the country in your corner, so place your trust in them and let them do the necessary. The sooner your operation is over, the sooner you can start your recovery.

I am always here for you - on the bad days, as well as the good.

Kind regards,

Jolamine xx

Thank you. Before just a short time ago, I used to forget about the whole thing quite a lot. But now it's just here and won't go away. I can't say that I have the word beginning in c. I can say, not without difficulty sometimes though, the word sarcoma - maybe because I'd not heard of it before? It is a Professor at the cancer hospital in London that will be doing the operation, I should just trust him to do it but I am very, very scared. If only it could be done tomorrow. and get it done with. Thank you for appreciating and understanding.

Hi Mary,

I fully understand how you feel. As your date draws closer, this is all you can think of and although you are naturally frightened, you just want it over and done with, instead of looming over you.

I have been through gall bladder surgery for a 3" gallstone. This appeared just as I was losing my mum to her battle with breast cancer, which had spread to her liver, lungs, bone and brain. Three weeks after her funeral I saw my GP, as I was having difficulty in breathing and couldn't sleep. I was still working in my own practice and seeing patients at the time. My GP picked up the phone there and then and spoke to the surgeon at the hospital and I was sent straight in to see him. The surgeon informed me that he was admitting me there and then, as I had Empyema (A pustular pleurisy) and that he would have to put me on intravenous antibiotics for 2 weeks, before he could operate. He then hit me with the fact that it was touch and go, as to whether they could pull me through or not.  At the first attempt of surgery 2 weeks later, I stopped breathing on the operating table and no surgery was carried out. After another 2 weeks of IV antibiotics, I'm pleased to say, that the second attempt was more successful and they were able to remove my appendix at the same time. Needless to say, this couldn't be done by keyhole surgery. It meant a full open Cholecystectomy and almost 3 months in hospital to recuperate.

The reason that they lost me the first time was, that I apparently have a very narrow gullet and I now need fibre-optic intubation for any surgical procedure. This has made any further operations a bit more challenging and worrying. Again I have been fortunate so far, as I've had a further 9 operations since then.

I felt like you about the c word at first, but this has changed over the years. One of the legacies of treatment for me has been Lymphoedema in both arms. I attend a Lymphoedema clinic regularly for monitoring of this. Initially I had to wear compression bandages on both arms, from shoulder to fingertips and I looked a bit like the man from the Milk Tray advert. It looked as if I had 2 broken arms, so everywhere I went, people asked what had happened to me. I eventually got so fed up with answering these questions, that I used to say that it was as a result of my Cancer treatment. I began to look on them as my badges of honour for coming through it all. I still wear compression sleeves on both arms and hands, but they don't look quite as dramatic, as the actual 5 layers of bandaging were.

When my mum was diagnosed,  "the big C" was whispered about in hushed tones . Hardly anyone uttered the word. Perhaps this is why we, the public, know so little about it, despite the fact that it affects so many people? I hope that one day you will be able to talk about this openly and increase awareness of the disease. Diagnosis, treatment and after care have improved dramatically in recent years and more people are living with the disease, instead of dying with it.

You have one of the most eminent surgeons in the country doing your surgery. He is fighting your corner. Put your faith in him and let him win this fight for you.

I am always here if you want to chat.

Kind regards,

Jolamine xx

You have lived through traumatic times! I don't know how you coped.

Hi Mary,

They say "what doesn't kill you makes you stronger" and I believe that this is true. We cope because we have to, but find hidden strengths along the way. I  feel sure that, before long, you will be discovering strengths that you never even knew you had.

I am delighted to hear that you had a short reprieve from the sarcoma today. It's so good to get a little normality, even for a short while.

Kind regards,

Jolamine xx

Hi Jolamine on hearing what you've been through over the years is nothing short of a miracle ,you are a very strong person to have come through everything and achieved so much and I must say you have a wonderful way with words it is very reassuring for many hearing about your journey and it calms people and takes away some of the fear ,so many have been helped and reassured by your kindness x

Hi Jenny,

Thank you so much for your kind words. It is wonderful to hear that my words can help to reassure some people along their journeys. I got such tremendous help here, when I first found this forum and really needed support, that I am glad to be able to repay that. If I wrote a book about my life, I don't think that anyone would believe it. I am indeed very fortunate to be here still. This is something that I am grateful for every day.

It is great to see your caring contributions to others here too and I hope that you can continue to help out with your wisdom and compassion.

Kind regards,

Jolamine xx

Thank you. I believe you are right.

I quite agree with all that you said.

Every day is an added bonus.

Every day is an added bonus.

Hi Mary,

I totally agree and am eternally grateful for the dawning of each new day. How have you been today?  Less than 2 weeks until this is all behind you.

Kind regards,

Jolamine xx

Yes, nine days now. I was just wondering to myself, if I didn't have the operation, how long would it be / how long would I have?

Hi Mary how are you feeling now ,still ok I hope , do you have to have any pre -op checks before you go in for your op ,have they said how long you'll be in x

Mary bless you 

I’m sure your operation will prolong your life for a long long time if they didn’t think so they would not put you through this , but if you want to no this you can ask the question they will tell you , I can not imagine the worry and stress before the operstion but you will be ok you gunna be fine , a few months time you will look back and be glad you had it xx 

big hugs love Lara xx 

HI Mary,

A very good question and I imagine, one that is difficult to answer.. 

The best person to answer this would be your professor. He should also be able to provide the figures for survival, if you do have the operation. I don't expect that you'll be seeing much of him before you have your operation. However, your specialist nurse could get these figures for you, or arrange for you to see the professor again before your surgery. There are people who don't want to know anything about surgery and just want to get on with it, leaving their fate in the hands of their surgeon. Then there are people like me, who want to know all the statistics prior to the event. At best even a surgeon, as eminent as your professor, can only give you a "guesstimate", because many go much sooner and others can live on for many years past their predicted time. It is likely to be a nurse that you see when you go for your pre-op appointment on 15th.

However, one thing I would caution you about, before you embark on this. If you were told that you only had a limited time without surgery, would you feel even more depressed, with knowing the facts - I'm not saying that this will happen, only that it could and if it did, do you think that you would be able to cope? Sorry to be so blunt - I am only thinking of your long-term welfare. 

Always here for you.

Kind regards,

Jolamine xx

Quite anxious at times, thank you. Going to London on Wednesday for the pre-op checks. They've said approximately ten days.

Thank you. I think I was being silly even putting the question to myself.

Thank you. I was getting overstressed and shouldn't have asked that. I must remember that, from the most recent scan, the operation is still, as the professor said, do-able. I have to hold on to that, I think, that it is still do-able.

Ok, yes anxious times who wouldn't be ,I hope they make you feel more at ease on Wednesday and remember you'll have the top Doctors and nurses looking after you for 10 Days ,these people are amazing at what they do so just put your trust in them whilst they rid you of this thing once and for all ,I'm not thinking it will be an easy road because its a big operation but you will get there by taking each day at a time .

Thank you. Yes, one day at a time.