I have hodgkins lymphoma (2)

[anjelica]

This thread was split automatically after 1000 replies and this thread has been automatically created.
The old thread automatically closed is here: "I have hodgkins lymphoma"

 

[Jimmy P]

Caught me off guard, didn't know the new thread was starting...

Here's what I was saying in the last thread:

It's ok, don't apologize...we just wait for this scan and see how it goes...as they say, don't count your chickens before they hatch
We go by the scan...

 

[anjelica]

Ha ha Jimmy, it caught me off guard too as I tried to post something and it said I could not post and so I thought I had done something wrong and got banned from the forum.

 

[anjelica]

Jimmy, it is just so scary - I can't breathe again tonight and it is not emotional, it is purely physical and the docs do not know what is wrong. It is so scary and I just feel deep inside of me that something is really wrong. Also I feel so ill generally and when we went to my brother's I was so so ill and ended up leaving there in tears. I maybe should not have gone but I thought that to do something positive would be a good thing. I did not realise I was so ill today.

I AM scared Jimmy. You would not believe the experiences I have had since having this cancer. Scary.

I just needed to tell my Christian brothers and sisters in this thread just how bad I was feeling since the suicidal thoughts etc were scaring me. That was why we called the priests and we were just turned down. It was awful I did not know how to get through the night. So I posted here. I am sorry

 

[RuthD]

I am listening. Go ahead and get it all out. I'm so sorry your community priests have let you down. I feel for what you are going through right now. I care and will just listen to all you have to say. Praying for you dear sister.

 

[anjelica]

Oh Ruth - THANKYOU. I don't know how to get it all out now, or how to explain it. I don't know what I am OK to say publicly. But I am just so scared of this cancer and of dying. I was convinced that I was dying today and I was terrified. Dying is a HUGE thing. I was so scared and also scared of the future with Bob being disabled and me being his Carer and I could not see a future for us with no people to help us. I also felt that if I was going to die, I must prepare myself and I needed Christian folk or ministers or a priest to come and help me to prepare for death. I am sorry if this is morbid but it was how I felt. I do not know what is happening with my body. I wanted someone to just prepare me for death if it was coming, and pray with me etc. I wanted to examine myself, with help, and see what sins I had done. I just needed help. I really did.

Then, suddenly, the depression about everuthing and the fear of a horrible death from cancer overcame me, and I wanted to end it quickly and not die a long, slow horrible death.

I am possibly not posting as is allowed in the forum so I may get banned.

I am struggling so horribly.

 

[RuthD]

You are posting fine and you won't get banned. I hear what you are saying. I'm sorry you are having such a hard time of it now. I'll keep listening to what you say.

 

[anjelica]

Ruth, I fell asleep - it is real late here. Just woke up again.

I don't think there is anything else right now that I want to say. Thankyou for listening Ruth. I am just not good at all right now. When you have been close to death and when you don't know what is happening with your body and when you have a deadly disease it really changes you. Maybe I could just tell you that something odd happened to me way back before I was diagnosed and it has scared me.

OK so I had had a real bad body itch and it was driving me almost mad. I had been to the docs and was told first of all that it was scabies (which it was not) and then that it was dry skin and then that it was a skin disease called prurigo. It was horrible and at the same time I was not feeling good. This was way back in 2012.

At the very beginning of 2013, on January 1st, I had this real odd thing - I just felt somewhere deep in my spirit that I was going to die in 2013. I had no reason for thinking that or for sensing that. I let the feeling pass, thinking it was odd. But that was all. Then, in the May of that year I got real sick and a doctor came to the house and I was so ill on the sofa. and she felt my tummy and said that my tummy was distended. Another doctor had been treating me for the so called skin condition. But he want on holiday and this new, lady doctor came to the house. She was troubled by the distended stomach, and immediately said she was referring me to the hospital under the 14 day rule (in our country that means that cancer is suspected and the hospital has to see you within 14 days). I was dumfounded.

Then, suddenly the lymph nodes in my neck came up and she was alarmed.

I got the appointment at the hospital with the haematologist, but it had not really sunk in that this was really serious. I thought it was just an infection despite the 14 day thingy.

I went to see the haematologist and he examined me and felt my tummy etc and immediately said, "You hav cancer." Just like that. I was so shocked. I was not expecting that at all. I could not deal with it. He wanted me to stay in hospital there and then for three days. I just could not deal with it and said I needed to go home to take it in. He agreed to let me do that but I had to go back.

I then had to have a biopsy and then a scan. He had explained to me that the lymphatic system is like a daisy chain and that all my lymph nodes were cancerous. This was confirmed by the biopsy and the scan. He told me it may well kill me.

I then thought back to the feeling I had had at the beginning of the year and suddenly I was terrified.

Long story here, and other things happened too - I was riddled with cancer and my chest was full of it. I could not breathe.

I then started treatment and he kept on saying it is in the lap of the gods whether you survive or not.

I have never gone through such a terrible time in my whole life.

I did not die in 2013 but towards the end of the year I got terrified.

I still have this awful feeling that I am going to die. The hospital will not give me much hope even though the scan results at the halfway stage were good. I talked to the nurses about it and they have said that it does not mean that I am going to survive.

So now you can maybe see why I am so scared.

Thanks for reading this as it is rather long.

 

[Jimmy P]

You're not gonna get banned that I foresee, you're just gettin' this out and that's good...

So the Nurses and Staff aren't giving you too much hope right? BUT, you said this is a bad hospital...what would their OPINION matter? They've already proven their incompetance Anjelica...

I imagine you are scared, and that's ok...that is to be expected...but nowadays, cancer treatments have come further than they ever were...hang on to hope...as long as you breathe, there is hope...

As far as the Priest(s), you say you're Catholic, need to find the Arch Diocese for that area Anjelica...get in touch with them and let them know that their Priest(s) are not helping you at all...

Post here as much as you want Sister...this is YOUR thread...we're just guests in it...

 

[ChristianNewbie123]

Dang right Jimmy P.

 

[Jimmy P]

^ Hey, lookie who it is

 

[ChristianNewbie123]

Yeah it's me. That kid who wants to see Anjelica feel better dang it!!!! and you will

 

[LittleH]

I like hugs!! I thought I would share the love with you all!

 

[RuthD]

Here for you Anjelica. How are you today? Still listening to what you have to say. Love you dear sister.

 

[anjelica]

Thankyiou all. I am lost for words now. You are precious ppl all of you - and you all understand and are such wonderful Christians. So full of love, and that is what Christ wants us to be.

Jimmy, we became Catholic after my father died. He died in 2001, and it was I think 2004 when we became Catholic. I am not sure what happened but it did anyway. I had been Methodist for over forty years - rooted in Gospel etc. I love the old Gospel songs and hymns. Sometimes I want to go right back to my roots in that kind of Christianity. I was baptised Anglican. I also have ties with the Anglican Church, and used also to go with my friends to the Pentecostal Church. I don't like barriers and labels to be honest. We are all Christians and to me the label does not matter. But yes, technically we are Catholic although we still have loads of questions and worries about it. Maybe that is a subject for another time. But we are very broad - and as I say, don't like labels. We are Christian and that is that.

Today, we have been talking about how to get our lives sorted out. Bob and I are on our own. We moved house back in 2009, and two days before we moved from one county to another, Bob fell (he was always falling as he has post polio syndrome) and broke his leg and ankle. We were in a terrible state, packing to move, and he was taken into hospital and I could not even go see him as the hospital was a fair distance away. He was badly damaged. and was in hospital thee day of the move so I moved alone - from one county to another. The removal men were terrible - another story that I will not tell. Bob was let out of hospital the evening of the move and there was no-one to bring him to the new house as it was so far away. But they needed the bed at the hospital and in the end an old workmate agreed to bring him all the way to the new house. On the day of the removal I was dealing with the legalites (there was a hold up in the monies being transferred and we could not get into thee house) and at the same time trying to buy a wheelchair for Bob as the hospital said he MUST have one. He could not walk at all as his muscles have all wasted with the polio and so the leg that was not broken was no good. He came to the house, boxes piled high in every room, not even able to find the kettle to make a drink or even get to the kitchen sink. He could not walk at all, and he spent six weeks or more living in a recliner chair in the living room. He could hardly get to the toilet and I had to try and unpack and get the house sorted out whilst trying to look after him. NO-ONE WOULD HELP US.

This is the story of our lives. Eventually I got the house kind of in order but not really if you get me. W never really got sorted from the move. There is a lot more, but anyway, when I got cancer, we were still in that state. Bob is permanently in a wheelchair now and in danger of falling all the time and yet he is trying to look after me who is bedfast right now. The house is in a terrible state - for two years I have not been able to do housework and we cannot even pay a cleaner as there is stuff all over from the move. Every room is a mess and my family has come and made it worse whilst I have been ill.

We are now trying to find a way of managing and of getting the house sorted out and no-one will help us, not even my family. We are feeling abandoned and totally without hope. we jiust cannot manage any more. Social Services will not help, saying it is not their remit. The churches will not help even though they know we are Christians and that we had not long moved before I got cancer.

We feel so alone. We have no-one. #This morning I have been crying because we are just done in. Yes there is God, but we need people too. How can I recuperate from cancer when we cannot even find a room to go into.

Well, this is a long tale, but there we are.

 

[ChristianNewbie123]

-_- I hate it when people ignore the nicest of them. That is pathetic on the Church's part and your family and everyone else who just ignored you and your husband.

I'm gonna get a LOT of pleasure from watching you get out of this cancer business.

Now let's do something funny. I'll go first... Shoot, lost my idea. Wasn't that funny? Har har har...

... Tough crowd :/

 

[anjelica]

I am lying in the bed now, crying again - Bob has rung EVERYWHERE this morning to try and get help for us. We know the answers already as we have tried so many times before, but we can't stop trying. Every single priest in the town is out - it is almost always answermachines and if you leave a message they do not ring back. The priest who is technically our priest who would not come, we tried again but he has been summonsed to Nottingham, which is where the Bishop is. His housekeeper answered the phone and told us he is away all day. But when Bob spoke to the priest last night the priest said that he did not seem to know that he was to be in Nottingham today. He did say he would come sometime but it would be much later in time. We have given up.

I am feeling so ill again today, and I am sure that all of this is causing me to feel iller. We are struggling so much. When you are abandoned by people and by society you feel abandoned by God. Our country is a mess. A total mess. The disabled, the elderly and the sick (all the vulnerable ones) are downtrodden and abandoned and the government does not care and makes it harder for them to survive. It is the survival of the fittest in our country. LittlH, I don't know if you agree with me or not but the system is DREADFUL. People with terminal cancer in our country are told they are fit for work and cannot get benefits. It is appalling.

bob and I are feeling dreadful today. I still feel suicidal because I do not know how I am going to get better from this cancer in this situation. I don't know how me and Bob are going to suirvive any more. I should be going downstairs a bit now, and sitting in a chair for a while and maybe going to the kitchen sink and trying to wash just one spoon or something. But I am not able to do that. Things are just all over the place and we can hardly move.

I am so so depressed and desperate. Where is God?

 

[anjelica]

please god help us

 

[ChristianNewbie123]

Aww God WILL help you. I promise.

 

[LittleH]

Anjelica, I agree that the benefits system in this country is a complete nightmare. I have just spoken to someone who is going to help me, as I received a letter saying that I am not eligible for a benefit when I meet the criteria for it. She told me that someone in the main hospital near me, who is in a coma and had a family member complete the form for them, was found fit for work. It is so stupid.

Hun, keep crying out to God. He longs for you to come to Him with all of your pain and anguish. He loves you so much and wants to take all your fear and pain away.