Living on a time line

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Hi to you all, I am 75 years old 76 next week. I was diagnosed with Stomach cancer in October 22. It was all very sudden. We had been out a couple of times July/August where I was unable to complete meals that I normally would and I was certainly eating less but feeling full up. One particular occasion I brought the whole meal up before leaving the restaurant. I made an appointment to see the GP who arranged for blood tests snd sent a request for me to have camera down he warned me there could possibly be a six week wait. I was luck that it was only a two wait I had opted for sedation but changed my mind on the day. My husband waited in the main waiting room. When the procedure was complete I was taken to a small relaxed area where other patients were resting. Other patients were spoken too about their tests and what would happen next and left. I was called and asked to go into a small room! The Doctor came in followed by a Macmillan nurse, my response was not good news then. He explained that there was a mass in my stomach and that they had taken biopsies. He explained that the next step would be a scan. He then said he would leave me with the nurse who would got though things with me and I could ask questions. I asked for my husband to come in and join us. We did have a chat with lovely nurse but still to this day it was all a blur!

on the same afternoon when we got home I had a phone call from my GP when I was able to tell him what had happened that day, I then said to him that you are obviously ringing me with some test results to which he said yes what you have just told me answers the blood results. He said he was sorry about the outcome but to keep him informed.

the following morning I had a call to go for a scan the next day. The day after the scan I had a call to go to my local hospital to meet with the medical team and MacMillan nurse. They then said that they wanted me refer me to St Thomas hospital under the care of Dr Maisey.

I met Dr Maisey on October 5th 22. Who explained what had shown up on the scan , they were still waiting for the biopsies results to come back. I asked what the prognosis was and for him to be truthful. He said it was inoperable, I asked if chemo was possible he thought it would I asked what the prognosis was without treatment he said six months but with chemo I could possibly have 15/18 months. He said he would like us to spend some time with Sue the oncologist nurse and to have some blood tests and then to go home and have a discussion regarding the treatment and to contact them with our decision. We decided to take the offer of chemo treatment.

we were given an  appointment to meet the oncology team at Guys Hospital on October 18th 22. I was told I would  be having a chemo cocktail called Capox, was told about the side effects, given lots of paper snd various leaflets to read. Was told that I would have a pickline inserted.

my chemo journey began on 4th November. I was quite unwell, having difficulty eating with very little appetite, was given supplement drinks which I really didn’t like. I spent most of the time asleep but almost commotosed. I had a phone call to go to guys for an iron infusement, by the time I got there I collapsed and was put to bed. I was able to go home later that day and did feel a little better. The following day I was asked to go back to have phosphate infusion and some days latter I had to go for  pottasium infusion.

I had a scan after the third chemo session on 26th January 23 the results showed some shrinkage but also had caused several small blood clots in my lungs. I was referred to heamotology. On the 6th April I had to for a blood transfusion, I had already been put o a six month course of daily anti coagulation Dalteparin 12500 units by injection. Hoping to be changed to tablet form in early July.

I stopped the Capox treatment after session 5 and had the chemo cocktail changed to Folfiri which has been much better I am due to session 6 on July 20th followed by a scan the following week to see where the cancer is at so fingers crossed. They will then decide if I have further chemo I can have a further six. 

There are times when I wonder is the Chemo worth it as I know it’s trying to shrink the it but it also seems to be killing off other other things. I also through the Capox have perrifory neotherapy affecting hands and feet badly. 

I will finish here for today as although I have questions to ask you I thought you should understand where I am coming from medically and I will get back to you all soon x

  • Hi  

    Welcome to the incurables group. We're sorry that you find yourself here but you are very welcome and will find lots of friendly support. Thank you for your explanation and cancer history. If you are up to it, it may be an idea to copy and paste your information to your profile. If you click on your username it will take you there, click profile and save. If you click on my username, you can read my or any of the group members profile. It helps in replies to you and saves you repeating yourself.

    The chemo sounds as though it is taking it out of you. You're right that it kills off good cells as well as cancer cells. We, as a group, are not medical but we have experience and knowledge. Keep posting, it helps to talk to people in the same position as we have a common understanding.

    A x

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  • Hi Loony, Welcome to the group and by the way we could just about all have your Username!

    I can't have chemo because it doesn't work with my type of cancer but like you, I went straight to Stage4 incurable with a prognosis of 5-7 months.. My only option was a Drug Trial, which I jumped at because any treatment is better than no treatment. Like chemo, the Trial had lots of side effects but the alternative was unthinkable. My fantastic Oncologist at the Beatson in Glasgow said it could give me up to an extra 6-9 months, IF it worked. I was on the drug for over three years during which I had a few treatment breaks because of severe side effects.

    Anyway, why I'm telling you this is I stopped the drug in September 2016! Yes 16 it is not a typo! The thing is, they are developing new drugs for different cancers month by month, so anything is possible! Where there's life there's hope. I know there are others here in this group, who have beaten the odds and lived past their "sell by date!" Including some who got chemo. It is possibly because you posted during a weekend when people are busy living their lives as best they can. So I hope they will be along to support you later.

    In the meantime I would advise you to do what Sistermoon suggested and and copy your post then paste it to your profile page, it will make a difference. Good luck and if anyone asks me was it worth suffering the side effects, my answer is always definitely or I would have missed our son's wedding, the birth of a 2nd & 3rd grandchild, seeing them all start school, and finally celebrating our Golden Wedding Anniversary!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Loony, I'm so sorry to meet you here, I'd much rather it was elsewhere. As Sistermoon says, we have lots of support and know just exactly what you're going through in terms of worry, fear and apprehension. If I can give you one crumb of comfort there are some people here who have outlived their prognosis, some by many years. 

    I happened to see your email as I was signing out for a while because my wife has also now been diagnosed with cancer and she's having chemo and radiotherapy for 5 weeks, 5 days a week.i have bone marrow cancer and was diagnosed in March 2015. I'll pop in now and again to see what's occurring.

    Tvman x 

    Love life and family.