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Diagnosis 6/8 in 2013. Yet here I am still

21 Jul 2019 01:11

I was diagnosed terminal with 6/8 months to live. That was back in 2013. This was following a left upper lobe removed. I was in remission in April 2013. My brother was diagnosed 5 months previously. It transpired we both ended up with the same oncologist. He thought it rather unusual and bizarre treating  two members of the same family. My brother and are are from a large family of 7 children altogether. I am the second eldest but the eldest girl. My brother he was exactly the middle child with only 4 years between us. He was just 50 when he was diagnosed type 4

left lung cancer, it had spread to his kidney, shoulder and it was making it way to his right lung and brain. Up until my brother we had a family had not known of a singe person within the family on either side my mum or my dads nor did our parents know of anyone else having ever having cancer. Eventually after my brother and I had a few extra test we where both told it was a genetic twist we where we both told it was a genetic twist we told our siblings who all said the rather would not know, a good few months ago my elder brother who lives in Malta has been in touch he now ha cancer himself. Exactly the same as my first brother and myself. It’s also strange all 3 of up it stated in the left lung. In some ways he was fortunate and in another way it was a tragedy how they diagnosed my elder brother. He retired to Malta after servings in the Army fir 22 years. My brother took a boating pilot lessons I am not sure joe that works al I know he’s now a fully fledged boating pilot. One day coming into dock his friend let go of something leaving this thick metal wire loose on a coil it caught my brother and because of speeds he ended up losing his left hand and severely twisting his left arm during a scan to see the extent of damage it had done to his arm to see what they could do. On the scan they had caught part of his left lung. It was on that scan they my only saw the extent of his damaged arm that’s when they picked up his cancer. I was distraught. What a way to find out, plus him having lost his hand that same day. I can’t describe how I felt let alone him.. he’s had some chemotherapy and things were looking goof. Then last week he contacted me to tell me it was back. I should have died yet there’s something for some bizarre reason that I have totally baffled the cancer world because I am still here. I hope the bloods I let them take for cancer research they find why. Yet I feel bad for my brothers the younger one he passed away a year and 12 days after they found it. I know some people do not get a year. My brother who passed away did so a day before my birthday. Not that the birthday bothers me. He was 51 I just want to know why him and why have my brothers not developed whatsoever it is that’s keeping me alive. Also had I known then what I know now. Apart from them removing the biggest part of my left lung. There’s no way on gods earth would I have put myself through chemotherapy. Not a cat in hells chance. I also had immunotherapy which is a different thing again no poison involved. Again I lasted 7 months with a good reaction to it. If I had have know the gradual affects it was to have on my body I would never have had that either . I know my last scan still showed I still had metastatic cancer, however immunotherapy has killed some but it now back on the move. I have gone no further treatment. Although I do know my oncologist has said if I had immunotherapy again for only 6 months it would give me more time, and if we did that every time it starts moving again and we do that every time then perhaps I could get a extra 5 years. Oh and that’s only untill the immunotherapy stops working. It might not work the next time round. Am I prepared to take that risk. NO NO NO I really know their are lots of people out there who would literally give everything they had to be in such a rare situation and have the extra life. I wish I could give them my whatever it is keeping my alive I genuinely do. It one reason I have given so much if myself to cancer research with the hope they can find out exactly what it is and they have said if they can replicate it, it would give thousands upon thousands extra life. To give someone a lot longer prognosis would be amazing. I have also said they can have my body to take whatever tissue they need after my death. I know me saying no further treatment was a bit of a blow because it’s transpired the longer I live the better for cancer research. So now having found that out I am stuck between a rock and a hard place. I do not want anymore treatments. Especially how it’s left me, but please someone help or do I continue despite what it’s doing to me have more treatments to help hopefully to give other people a far far longer life. ??????? Anyone have any suggestions would greatly appreciated. 

Diagnosis 6/8 in 2013. Yet here I am still

21 Jul 2019 03:34 in response to marj58

Hi marj 

 

I don't know weather to say congratulations or not, you certainly know you're own mind so sorry about your brother, I'm not same as you, I'm non curable prostate cancer it's spread to lymph nodes, spine, ribs, pelvis and I lung, i had cemo it cleared the lung and shrunk the others, my oncologist told me I'd need more cemo before a year was up that was Feb 2016 Im still waiting for more oncologist doesn't know why its not growing quicker, I'm not complaining last cemo nearly killed me, I've been thinking about not having anymore treatment, but I've a disabled wife who needs care 24 /7 I know care homes don't do that so I want to look after her while I can so she can have a good life, i do everything for her feed, wash, medicine, toilet her minds not bad just the body, sorry I'm going on a bit, it's nice to talk to someone who understands, best wishes.

Billy 

Diagnosis 6/8 in 2013. Yet here I am still

24 Jul 2019 01:38 in response to Billygoat

Hi Billy I am so sorry to hear of your bad news. I understand about your wife, it must be so hard. Like yourself I am not curable, far from it, being metastatic as well, as it flowing in my bloods. It’s whats really knocked the researchers off their feet. Apparently I can not name him of the actual hospital, I had already used his name and the hospital. I had a massage from the moderators telling me they had edited my post and removed the name and hospital. Having thought about it,,it is understandable. My oncologist is a professor also a cancer researcher. He’s listed as one of the best in the world with many others. He a fantastic guy who is so sockeye soiken, yet he’s a man who actually sits and listens not one of those that listens yet still don’t actually hear you. I have come across some registrars who do that, they tend to latch on to something and do not really hear the rest. Now regarding I seem to know what I want I do, believe you me one is definitely no more chemo, like yourself I had one type that almost killed me. I overheard my GP and Macmillan speaking to my husband, I was actually unconscious at the time believe it or not. However they told my husband they gave me until the weekend and prepare my children plus himself. That same day because it was my choice to die at home they had hospital bed and oxygen in my house. Oh I forgot to tell you they also said from tomorrow it will be the end of life team will be taking over. That’s how close I was to death. With being unconscious I can actually say you hearing is definitely the last thing to go. I had heard this many times and I am sure you have too. I just remember thinking to myself . Now this is going to sound pretty stupid however I thought no way ladies am I going to die before or at the weekend. It’s just not convenient. I still have places to go and people to see. Honestly that’s what I thought so I said to myself I had got to wake up before they insert a syringe driver into my chest or my upper arm. I knew once my brother had, been given a syringe driver out into place all hope had gone. I don’t know if you know what a syringe driver is or if you have seen one. So please forgive me by explaining. It’s purky because in this strange world of cancer I have met people who do not know what one is and a lot that do not know of a pet scan is either. I had never heard of a pet scan prior to getting cancer, although I had heard of syringe drivers. I have a daughter who is a organ emergency transplant nurse who really is at the top of her game, when I say her being at the top of her game I am not bragging, however a lot of surgeons have told her instead of being a scrub nurse she ought to become a surgeon. I know she’s been out in a couple of situations that she herself has had to perform a couple of the surgery’s herself with the guidance of surgeons. I hope you don’t mind me telling you this. However during one night early hours of the morning. They took a call their was a triple anurysome coming in. Now I am not a nurse yet because my ex mother in law had heart problems I knew what one of those where, it’s unusual that when someone has a triple that the person makes it to the hospital alive. Anyhow my daughter went and scubed up ready, in reality she thought it wasn’t necessary yet she automatically does it. Well this chap did arrive still alive, they rushed to theatre for a emergency operation. It took everyone of the back foot because surgeons on call nine had bothered to scrub for the operation when they got into theatre it was madness running around people trying to get scrubbed yet every second counted, this surgeon saw my daughter was already so he told her she would have to perform the operation under their guidance, just as I said every single second counted, another surgeon came into theatre and agreed with the one who told my daughter she would be doing it. Thankfully she’s not a person like myself who doesn’t panic. They guided her through every parlt of the operation and she removed all three clots in the mans heart stitched him back up all the time they where talking her through this procedure. She had seen plenty of heart iops so it wasn’t like she had no idea she’s been a emergency scrub organ transplant nurse now for well over 10/12 years, could be a bit longer I can’t actually remember plus it was always hard to keep up with her because at 19 she moved to Glasgow with her partner. She’s 38 now. Almost two years ago after having lost her first baby she declided to move back closer to the family I have a daughter who at 18 moved to Aberdeen to be with her partner. When they split she moved back in with us she ended up meeting someone from Doncaster. So my other daughter who lost her baby moved towards thst way, untill she got settled in the job she wanted she’s now living in Sheffield. She had applied for 3 jobs, yet she heard from Sheffield first had her interview got the job on the spot. Then Leeds and Doncaster offers her a job in fact Leeds did so based on her cv and a few phone calls wanted her before she had even had her interview. Unfortunately for them once she started at Sheffield she was renting until she found somewhere to buy, she was tied to this flat for 6 months, she didn’t want to live with her sister only because she had children and the house was big enough but she felt she was in the way. 

I only explained that when I said why I had heard of something’s medical prior to cancer. Going back to a syringe driver it’s a box that can hold up to 3 different IV drugs going into your system at the same time through one needle, they do a six one too. The box is kept locked so know one can tamper with it . So having seen my brother had, had one fitted I knew then I had to wake. I do not know how to this day I actually managed to wake myself up and bring myself out of being I unconscious. All I really remember is how important it was. I can only sat through sheer will and detention is what brought me round and I shocked them trust me I did. Although I donate blood to cancer research after my oncologist asked if I minded him using my notes and asking about if I would donate extra blood and biopsy’s to cancer research because they had never come across this before someone walking around not looking too bad at all when I was supposed to be dead. Even now they look at me sometimes and you can see how baffled my professor his. Also Macmillan nurses. I said take what you want what they are hoping to do is find out what it his and replicate it to give other people a longer life. I hope they can, I have also dintated my body on something called a peace trial that my oncologist is running. They will take bits or all of some of the organs they need for a new trial, I did that because I had been a organ donor and given blood as far back as my 62 year old brain can think back. I do remember when the took the upper left lobe of my lung out, higher risk than most, however I will tell you why another time. That’s when I found out about not being able to be a donor anymore, have you been Reading some of the messages I have sent Jenny on Terminal but still going strong. I noticed you had posted a couple of messages to her telling her she had done right in joining that group. Then a saw another one where you said see I told you, you would get lots of reply’s. That made me smile. Because I don’t think anyone can fully understand what it’s like unless your in it. Not that I would wish cancer on anyone. If you go back and read some of the messages to Jenny I sound like a right dumb blond. I was wondering Billy if you have had any problems with your short term memory. Or with anything else. I have never asked anyone before, only because your the first person who I have met who’s been in the very same position as myself at deaths doir after chemotherapy. You said you need some more. Well all in all I had two different lots one finished in the February 2013 then I started another one after the terminal diagnosis in November 2013 now that one had really left me with some very unpleasant side affects that’s why I have said hell would freeze over before I would ever have chemo again. I tried the immunotherapy which I had started to have a good response to. It just didn’t agree with me, so I pulled out. I in your position would actually ask for immunotherapy. It no where near had bad as Chemo. Plus people are actually having a far better response to it than Chemo. So in your situation with yourself and your wife is why I am suggesting you ask about it. Don’t let them shrug you off. One thing I have certainly done about different rmtyoes of cancer and treatments is really really researched it and continue to do so with all the new treatments coming out. Billy do write back because yes if anyone understands about your situation it’s me. I will not go in about my daughter then, it really was although she’s no expert on cancer she’s helped me understand some medical terms that I was not aware of. Plus they few times she’s been to see my consultant she’s made suggestions regarding side affects of immunotherapy. I had said no more treatment however having rethought it through with the suggestions my daughter mentioned to help me with the side affects they where going to try it, however st hat particular time I said no more. Any how after talking or writing so long I had best say night and I am looking forward to your reply. Also if you do read the messages I sent to Jenny I am far from a dumb blond it’s I have just had some really funny ha ha moments on my journey, not at the time now I can look back and laugh at some if them. 

 Lots of love Marjxx 

Diagnosis 6/8 in 2013. Yet here I am still

24 Jul 2019 03:06 in response to marj58

Hi marj 

If you looked at" about me"youl notice about addisons it can kill you a lot faster than cancer if you're not careful, my doctors brother died from it in his 20s, you probably notice I try to keep chearful on forum so I can help others who are struggling more than I am,, like you said I am worried about more cemo, I'll be seeing oncologist next month I'll see what he says, my main worry is waiting to find out whats wrong with the Mrs it's been seven months now sorry if I sound down these hot days are playing hell with my hot flushes I have to keep changing clothes because there wet through, at least i don't smell with it (I hope) Mrs says not unless she's just being kind, hope to hear from you soon,.just been looking through your letter again sometime things don't sink in, memory loss before cemo, i usto be able to do loads of sums in my head metric to imperial and all sorts, now I have to use a calculator and I'm still struggling which button to press, before I get half way through your letter I've forgotten the beginning, it makes me mad sometimes but I'm stuck with it, 

Billy

P.s if you like big words, try these,, metastatic bony metastases,, adenocarcinoma,, and retroperitoneal lymphadenopany I don't want to know what they mean, why can't they get words ordinary people can understand, i have a rough idea, be nice if I could say them (no even going to try,). 

Diagnosis 6/8 in 2013. Yet here I am still

27 Jul 2019 09:26 in response to Billygoat

Hi marj are you up or are you getting some extra beauty sleep, I'll not say any more, love.

Billy