Pecantim's blog

Surprise phone call today.....

2010-06-23T13:31:20Z

Thought i would let you all know that i have just had a phone call from my hospital in London (UCHL) with the news that i am to scrap the start of my chemo on Friday and await a phone call from a Professor in abdominal surgery who has looked at my scans/images and has said that he could probably remove my massive tumour. I would then have some chemo later on. He is going to phone me sometime next week to arrange a meeting to chat about everyhing and then arrange admission for me. My goodness, i didnt quite know what to say. I was all geared up for chemo on Friday and now everything has changed but i do think this will be a better option. I think it is brilliant, so now i had better go buy some new nighties. If the surgery goes well, how fantastic is that!

Best wishes to you all, Gillian X

No chemo but now Op......

2010-06-23T13:29:55Z

Best wishes to you all, Gillian X

:-)

2010-06-20T08:42:41Z

Pecantim wrote re: This news has kicked me into touch!

on Sun, Jun 20 2010 9:12 AM - Delete

Thanks so much for your comments John. I have not been told i am to have anything with the doxyrubicin but maybe i will. I am to see my specialist just before i am shown around the chemo clinic on Friday, perhaps i will get some sort of prescription as well? I hope i get the same response as you did, any amount of shrinkage would make me so happy.

Persimmonar, i have read your blogs with interest wow, what a journey you have been on but, thanks for enlightening me, its all so very scarey though. Crazy isnt it but the losing of ones hair seems to be such a big issue, like it or not, its gonna happen i guess.

Well Im looking forward to getting some treatment and will be following behind lots of you all on here and will keep you updated with my progress. Gosh, to think, i used to be scared of the dentist!! G. X

This news has kicked me into touch!

2010-06-19T00:17:57Z

I received the promised phone call from my specialist at the UCH in London on Wed afternoon. Following their medical meeting, it has been decided that my tumour is too big to operate on at the mo, so i am to start chemotherapy (doxorubicin) on Friday 25th, next week. Wow, now that news has really put me in a different frame of mind. So many questions to ask, i keep logging in here to find my answers, which to a great extent i have found. I really thought i would have had surgery, then some further treatment, so now i am beginning yet another journey i dont want to go on! Funny tho, i cant wait to get started, i really need something to start killing off this horrid tumour. One very good thing i was told, it is coming from the same area as before and has not spread elsewhere. Phew, thank goodness. Im obviously curious about chemo and i wondered if someone could tell me how soon it starts to work, immediately, or after a few days? My tum is so big, it looks like i am about to give birth, i cant get many of my clothes on and i am finding it difficult to walk cos it is so heavy and also my worst pain is in my leg as it is pressing on a main nerve. This is such a cruel disease. Im counting the days till next Fri, it always seems a relief when you are receiving treatment i think. Just hope i can cope with this chemo, it does seem rather daunting.........

Best wishes to you, luv Gillian x

My third surgery in as many years.........

2010-06-14T17:30:36Z

Hi everyone. Thought i would write a little update on me. Since Eastertime i have been feeling less well each day. I have been having my regular checks and full body scans but asked for an earlier scan than my next one due in August. It turns out that my pelvic sarcoma has returned and is huge :-( It is pressing on my main nerve that runs down my left leg which is giving me such pain. I have medication for this but it soon wears off, i have even developed a limp. Im trying not to let anything stop me doing my usual daily chores, but i am finding myself on the sofa more and more these last few days. I am waiting for a phone call from my Specialist in London on Wednesday who will tell me whether i can have further surgery (which will be my third) or if i have to start chemo. Wed seems so far away but i have to wait until they have a meeting about me and the best way to go forward. I do not live in London but nearer to sunny Southend. This time i have opted to have my treatment in London as they are Specialists in my type of rare cancer, leiomyosarcoma. I will let you all know what happens......................

Best wishes to you all, Gillian X

Scan results and more..........

2010-02-28T22:55:25Z

On Friday i went off to London for my 'end of treatment' scan results. My daughter who was visiting from Suffolk came along too. We went on the train and got to the Hospital about 15mins before my appointment time. Felt ok but a little apprehensive wondering what i might be told. I was called in after about 25mins. My Specialist spoke about my kidneys to start with as on Monday i had a small op to replace the two ureteric stents i have in place due to my renal failure last year. It appears that my kidneys are still swollen but in time may get better. She then went on to tell me that she is pleased with the scan results as the treatment seems to have worked even though there is still 'something' showing on the scan, which she says is probably scar tissue. I was pleased to hear this but was concerned about the something still there bit! I asked a few questions and then something made me query my surgery back in 2007 where i had a huge benign fibroid removed which was in my uterus. On my hospital notes i saw that this fibroid was listed as a benign leiomyosarcoma and i didnt know that these tumours could be anything other than malignant. Well my Specialist then looked through her notes she had in front of her and then she looked at me and started apologising that no one had told me yet that they had in fact got my uterus out again and examined it whilst i was having my radiotherapy last Sept/Nov and discovered that it was afterall a malignant cancer. My goodness i was in shock! That meant that i have had cancer since 2007 and didnt even know. Wow. It was also a rare leiomyosarcoma like the one i had removed from my pelvis last June. She went on to say that my treatment would not have been any different as i had a total hysterectomy therefore no other treatment was necessary. The good news was that at the present time all was well with me apart from my swollen kidneys. I was the asked to come back in 3months time for a chest x-ray and in 6months time for a full body scan again. Both my surgeries were done at a different hospital to the one in London which i have to go to as it specialises in my type of rare cancer.

My daughter and i left the Hospital for the train home. Having thought more about what we were told, i was angry because i was thinking that i could have had lots of regular scans/checkups after the first surgery and i may not have had to go through last years hell. Surely i have a case for misdiagnosis? Gosh, dare i open a can of worms?

Luv to all, Gillian x

R/T finished but no celebrating yet :-(

2009-11-18T17:45:55Z

Hi everyone, have not blogged for ages, but i do log in nearly everyday to read everyone elses, how awful am i! Ive been busy with my daily visits to the hospital to get my radiotherapy. Felt really horrid as i feel so very sore inside and keep getting water infections due to my uretetic stents still insitu................

I have just finished my 35 zaps of radiotherapy this week (thank goodness) and saw consultant yesterday with results of blood tests i had to have last Tuesday. It turns out that on top of everything i am going through, i am severely anaemic, so i have to go into hospital on Friday for a blood transfusion. That was a surprise, but i have been feeling rather grotty of late, thought it was all down to the radiotherapy. Also my kidneys are not functioning properly, so in 2 weeks time i have to return to see the consultant regarding the stents which are still in place and treatment for my kidneys. They are hoping the blood transfusion will help improve their function, so have to have another blood test next week in readiness for results when i see the consultant. I am absolutely shattered with all of this, I am not having a very nice time but i try and keep cheerful and plod on taking each day as it comes. I have yet to go to London to see the oncologist up there but because of all my problems this has been delayed till New Year. I seriously hope the zapping has dealt with the tumour, but i am now worried about my kidneys and what is next on the agenda for me..........

So, i guess its waiting around again and suffering in between time. The nurses have been brilliant at the hospital, a great team and very supportive. I think i have had every side effect you can get with my treatment but i always try and keep cheerful. I am very restless of late cos i am so uncomfortable, what on earth am i gonna do on Friday when i am hooked up to the drip for 6-7hrs having this transfusion - any suggestions!!

I really hope all is well with everyone today, be very strong and keep smiling - xxxxx

Not sure what to think........

2009-09-22T06:26:08Z

Just an update on me. I went to have my 6th session of r/t yesterday and was told the Dr wanted to see me afterwards. Panic mode set in! Well, as uncomfortable as i could be as i am still suffering with this UTI and not getting to the loo before the Dr spotted me, i sat down with him and he opened up my folder and said he had the results of the last scan. My heart was racing - what was he gonna say?

Ok, he said he was rather puzzled and that apparently my scan was quite a good one but somehow my tumour had got smaller all by itself!? (I hadnt started my r/t till after the scan). I wasnt sure what to say, but i was so relieved at hearing this, then i immediately thought it must be something technical gone wrong. The Dr was quite happy with what info he had and so that was that. How strange. Smaller or not though i still have it :-( and it still needs treating, but i felt so happy and near enough skipped out of the hospital.

When i got home though i started to think differently and i felt cross that perhaps some kind of mistake had been made with the scans and how dreadful that is. We all put our complete faith into the treatment we are offered and dont expect queries, good or bad. Hey Ho.................

discomfort - cant sleep........

2009-09-21T00:54:41Z

Well i have done my first week of radiotherapy, it was absolutely fine. Amazing to think that something you cannot see or feel can do so much work. I just hope it is doing what it should do to me!

Unfortunately, i have managed to get a really bad wee infection. I took a sample with me on Fri and it appears i have too much protein, & white blood cells in my urine, so after i had my r/t treatment i got sent to the clinic and was given some antibacterial tabs to take this weekend. Not sure they are helping much cos i am still feeling grotty down there. It could be something to do with the two uretetic stents i have in still from when i had kidney failure before my op to remove the mass in my pelvis which was blocking my wee. Gosh, having this rotten disease is bad enough, without getting anything else to cope with on top. I guess i will have to go back to the clinic today and say how i feel. The nurse did tell me i would probably be given some more medication once they had grown whatever bug from my sample to find out the best way to get rid of thid infection. Something has upset my kidneys i think :-(

Anyway i am still bright and breezy in my own little way, i am not sure i like this new site much yet, i had only just got used to the old one, and it seemed a lot simpler!

Ive woken up and took some nurofen which seem to help me and its 2am, cant sleep for the discomfort, so thought i would log in here and have a bit of a ramble and look around the site a bit more..............

Luv & hugs, Gillian.

First radio.............

2009-09-15T05:21:39Z

First radio............. Submitted by Pecantim on Mon, 14/09/2009 - 21:26. Thanku so much for all your good wishes for today. I was ok about going this afternoon and was amazed at how quick and simple it all was. One thing i was surprised at though, i got given the next 24 appointments and they are all over the place, some really late approaching 7pm and some as early as 7.30am! Gosh, i will have to keep my wits about me a bit :-) I am pleased to say that i have managed to get free parking for my daily visits, so all in all a good day today..............................X

First radiotherapy tomorrow.....

2009-09-13T22:01:28Z

Well last week i had all my radiotherapy planning done, scans, simulator and tattooing, so now tomorow afternoon i am to have my first radiotherapy session. I have read lots about the treatment but i am still wondering what they will do with me when i get to the hospital. When i was on the couch having my little pinprick tattoos and my measuring done, (with the lights dimmed down!) i was thinking of all of you on the site that have gone through this before me and writing all the blogs........it was kinda comforting for me. I mustn't forget to ask about getting a parking pass, i think patients who have to have daily treatments qualify for this? Ive not written on here much yet but often log in and read the daily blogs. This last week has been really hard for some it seems but its so nice to see the determination and positivity that keeps people going. Well its time for me to get some sleep now, thinking of you all, luv Gillian X

Ms

2009-08-26T20:33:10Z

I have had a call from my Hospital today to tell me i have an appointment on Friday to start my radiotherapy treatment. I was so relieved that something is actually going to happen. Im told there is a lot of preparation first. I just hope the next 6 weeks will be enough to zap this horrid thing away from me................not looking forward to the side effects though..........are they really as bad as they say? Take good care everyone X

My LMS

2009-08-24T19:10:41Z

Just an update on me. I have been to see the specialist in London re best treatment for my LMS and have been told i need 6weeks radiotherapy treatment as following surgery, there is still some left behind :-( That was a month ago and my treatment will be at my local hospital. I went there for a further blood test 2weeks ago and was told to wait for an appmt. for another CT scan. I just heard today on the phone that i can have an appmt this Thurs for the scan. Oh well, at least something is happening. I was getting a little worried cos i was told at my local hospital that sarcomas are slow growing?and yet i have been given to understand the opposite!! Does anyone know?...................take care everyone XX