Depression and living alone

Hi m-j I have just spent the last hour or so replying to your email and with the slight touch of a button I ended up. Deleting everything I had wrote, I could not believe it I was just finishing off believe it or not, I am so sorry I am so tired I will rewrite it tomorrow, it was a in-depth reply too. So very quickly I explained about how I do have support from my local hospice Loros, I did go into detail as to why I hardly ever go and I mean hardly, so I am struggling to stay awake but I will explain everything tomorrow ok, I have pneumonia again and can’t seem to gets rid of it now, again I really will go in-depth about it tomorrow. I can not bloody believe I wrote it all out and i was explaining everything and ended up wiping it out just just like that. I am running a temperature a but my rues hurt my brain is sore and I have the most violent headache of all time. I will say nights for now, being so tired but is making me feel so ill. I promise to write tomorrow. The only thing that would stop me if I should pass away overnight. 

Lots of love Marj xx

Hi Marj

Sorry you are feeling so poorly and do hope you managed some sleep and your headache and chest pain is easing.  

Can l make a suggestion. Rather than losing all your thoughtful message you break down what you want to say into topics and once a topic is  finished you press send and then start writing the next topic and that way you won't lose everything x x

Hi M-J what a really good idea about doing it as topics. I was just so frustrated last night when I had almost finished and ended up deleting everything. Even now I genuinely do no know what I caught to delete everything. So anyhow this topic is about palliative care. Of course I was and still am concerned that you was not getting the correct palliative care. You say you have support at the palliative clinic within the NHS. They can be most helpful and help to control your pain medication. I used to go to the palliative clinic at a Hospital about 8 miles away from here. I did find them good, they got me in the see professor Steiner at the COPD clinic a lot quicker than it would have normally taken. They also suggested what level of pain relief I should be on, and what type. The morphine or OxyContin. Macmillan has put me on zormoroh slow release tablets, along with concentrate Oramorph for break through pain, my problem with that was dosage. They started me on the normal 10 mg of Zormorph ever 5 mile = 100 mg of morphine. Up to 8 times a day, although they did say it wouldn’t really matter if I took more. Obviously I wasn’t on the concentrated one to start with. But boy oh boy it was the speed they got me on such high doses. She was my end of life nurse, this started in less than a week after being told I was terminal, I was totally against morphine refusing after refusing just sticking with co-codomol 30/500 doses. I had a ectopic pregnancy years before it was starting to rupture so they literally didn’t have long at all to get me into theatre and sort it, I do know they only have approx 20 mins to save your life. Once it starts to rupture once it completely goes, it’s such a vast amount of blood lost so quickly that they have about 12 pints of O positive on standby. They use O because it’s the only one that will mix with any blood group. As they where literally running to theatre with me on the bed, I just managed to tell them my blood group was A positive. That’s just typical of me, I never knew if they changed it or not. Even though I know my own blood group I think they still have to cross match it. It was just me thinking if I needed the blood I wanted my blood group A i was a blood donor at the time, hence I knew my blood groups. This is something else you will realise I do go off on a tangent. I am actually terrible for doing this. Going back to morphine it was after the ectopic before they had the pumps you could use yourself, a nurse gave me a injection of morphine. Oh my god it made me feel so so ill, Ill to a point I prefers the pain to the actual reaction to the morphine. So later on she came to give me another injection. I asked her if it was the same stuff I had earlier she said yes morphine. So I told her I didn’t want it, she told me I had to have it otherwise it would be too painful without. Again I said no I do not want it, I tried to explain how ill at had made me feel. Now I am not a violent person yet I was always brought up to look after my siblings and myself, if I didn’t my farther would beat me, he was the only person who could put the fear of god into me. So this nurse started to get a bit angry with me and said I would be having the injection no matter what, I was trying to stay responsible and said I do believe you need my consent to give me that and I do not consent. She started to become very nasty and started to come nearer to me to give me the injection. Telling me I didn’t know what was good for myself etc, so at that point I raised my voice slightly not a lot, just enough to emphasis I meant what I was saying, I said you seem to know what’s better for me then, what you fail to understand I know how my body reacted to the last injection I have tried to explain that was my reason for not wanting it again. With all due respect it may suit you and many others however it does not suit me, so if you come any closer to give me that injection after me telling you I do not consent I swear to god I will get out of this bed despite the pain and knock you straight through that window and I mean every word I am saying. I didn’t particularly want to speak to her in that manner but after completely ignoring me and my lack of consent I felt it was my last option of trying to stop her. My husband was there at the time, I felt actually embarrassed talking to her in that manner and with the way she had been talking to me, I really felt I had to say something anything to stop her giving me the injection. My husband politely said to her my wife does mean what she’s saying and the fact she had already told you she did not consent to the injection I find it not very professional that my wife had to speak to you in the manner she did because you refused to listen. Anyhow I ended up not having the injection after that and had no more morphine. In fact although I should have been in hospital 10 days I came out the day after the operation, I had a brilliant gynaecologist who was a firm believer if you felt like going home you would heal better at home. He did comment on how much I was looking well, I told him I refused morphine otherwise I would be like everyone else laying in bed moaning feeling violently sick and barley able to move. After a list of dos and don’ts i left the hospital within the hour. I can’t say it was easy because it wasn’t. Hence my phobia of morphine. 

Topic palliative care and concerns. 

It was when I started to pick up that you had not got Macmillan coming to see you, that’s why I asked if you where palliative, if you had have said no, I really would have been shocked, especially with them having told you, you where end stages of COPD, no matter how difficult it is the predict the end stages of COPD, I thought surly to god you must be palliative. Yet it’s really strange you do not need oxygen. So yes I was extremely concerned, you say your new doctor as said your sats are showing your breathing not to be too bad to warrant oxygen. I would like to ask a massive favour, which is a big ask as although we write to each other which I find nice, and a pleasure getting to know you. The next time you have a Emphysema attack or infection, can you not call a doctor out, and ask them to do your sats then because I am sure you will definitely be in need of the oxygen. Don’t wait anymore for them to get lucky and see you like that, you need to make it happen the medical staff to take your sats then. I would hate for you to have a attack and you are so bad that you could do further damage especially to your organs while you are lacking in oxygen through a attack. I am surprised they have not made that suggestion to you,  are you still attending the COPD clinic and having follow up at oncology, because if so or even at palliative clinic the hospice, you could make arrangements or a agreement to getting someone out when these attacks come on. What I don’t understand yet it happens with everything these days is it should be the same way of doing things all across the country not this postcode lottery society we live in. I know Macmillan are a charity, and because of that it’s going to be different across the country, I have seen quite a few changes in my area from when Macmillan became involved in my life and that was within a week of initially being diagnosed with cancer not after I was told it was terminal. Ok my initial diagnosis wasn’t great, it was a 3b so it never really came as a shock that it went to the last stage of a 4, that was October 2012 now that was a really  a bizarre year, I am one of 7 children second eldest, but the eldest of the girls, it’s a combination or 3 boys 4 girls. Now cancer as never ever been known in our family, either on my dads or mums side. Not one single person was ever known to have had cancer,  in my dads side it’s been mainly strokes but none young as such average is 80+ on my mums side ok there’s always been slight problems with weaker lungs but definitely not any type of cancers, with the lung side, it’s mainly been asthma or various chest infections, but on average the odd infections starts approx in the 60s but both sides of the family have had long lives. So in May 2012 I had a message from one if my nieces asking me to phone her mum, one of my sisters, from that you will take it I don’t really have much to do with certain members of my family so whenever I moved or changed phone numbers only 2 siblings ever got my new address and phone numbers. I knew if one of the sisters wanted me to phone them, it was something kind of serious, having said that one time I got a message to make contact because one of my mother’s bulldog had a operation and never came round, and died. Now please I do not want to offend anyone who reads this but if you knew why. When I got that phone call to say the bulldog never made it through a operation and died, I just remember thinking what I get a phone call and it’s about her bloody dog, talk about pathetic that really was. Again I am not being offensive to anyone, I have always had boxers digs and truly been devastated when my last one passed away last November. But I seriously didn’t send messages out to the family at 1.25 am to call me about it, yet thersxmy sister getting her children to send me messages to make contact because my mothers dog never came round from the anaesthetic and died. Going back to what I was saying was I had this message so I thought it’s got to be fairly serious. I was expecting it to be either my mother had passed away or she was in hospital close to passing away. But no it was about one of my brothers he had been admitted to one of the hospitals in Leicestershire heart unit he’d just arrived back in the UK from having had a 2 week cruise. Once they landed him and his family didn’t go straight home, he was taken to a walk in centre for treatment out of hours, you could make appointment and be seen quicker otherwise it is literally what it says a walk in centre where you just walk in from of the street within less than 5 mins you see a triage nurse who assess you for priority reasons. Now not having been there it’s what I was told and I have no reason to doubt it at all having used the walk in centre myself they are very good at prioritising depending on illness. Within a minute or two if seeing the nurse my brother was called through with 3 doctor waiting, they told him based on his assessment they had already contacted paramedics as a emergency because it sounded as if he was going into organ failure, that’s why 3 doctors where waiting they rushed him into a room and sure enough his organs where starting to shut down, within a minute or so the paramedics had arrived and blue lighted him to the heart unit, once they had him in the unit they just went straight into his side no anaesthetic or anything just sliced his chest open to get a drain into his lungs and one around the heart, around his heart he had a pericardial infusion, in layman’s terms his heart was surrounded by over one and a half litres of fluid mainly water, his left lung was completely full of fluid no one knew why at the time they where too busy saving his life rather than knowing what the cause was at that point. Once they  got the drains in and monitored him until he was not necessarily out of danger but managed to get his organs from closing down they had to find the cause then pretty quickly test after test where done during the night they did not have time to wait until the morning he arrived at the walk in centre about 1.25 am, within a couple of hours and many CT scans, they found he had stage 4 metastatic cancers it had got one of his lungs first then went into the other lung, in his liver and kidneys, left shoulder and his brain. Because he was a HGV driver when he kept going doctors they said he had a strain then a chest infection despite him going  numerous times the last thing anyone thought of was cancer, although my brother did say the amount of times he went to the doctors he thought it warranted further investigation, he actually went on the day he was going on holiday he said he wasn’t feeling too good and contemplated cancelling the holiday. He stayed mainly in his cabin throughout the holiday, he wasn’t eating or drinking any alcohol his wife thought she had done something to upset him, but as I said to her that was a stupid thought because if you had you know what he’s like he would certainly have let you know. They told him he was terminal that night well early hours of the morning they genuinely couldn’t say how long with his organs having started to shut down they said it could be a week of 6 to 12 months, because of the organs starting to close down they did say how the hell he got through the cruise they didn’t have a clue, but the flight home because the cruise ended in Madrid it was a flight from there back to the uk, with the cabin pressure etc it was a mirical he survived the flight. Now as you can imagine with no one on either sides of family never ever having known that no one had, ever been diagnosed with cancer it came with such a huge shock I genuinely struggled to take it in he started palliative chemotherapy once things settled down a bit. Then 5 months later I was diagnosed with stage 3b lung cancer so two of us within 5 moths of each other was even a bigger shock to the entire family, the only reason I got caught that little bit earlier and not at a stage 4 was because I had started coughing a lot of blood up, which I just thought I had knocked the back of the throat because I had been striming the garden and something flew into my mouth, your natural instincts starts to coughing, I coughed up blood, which I again because it wasn’t much and been coughing hard I was not concerned at all, oh by the way this is one brother who had my phone number and new address each time I moved. We where very very close we both shared a bond that the other siblings ever did, we also no matter what could tell each other anything and knew whatever we told each other it would never be repeated him and my other brother who had my address and phone numbers us 3 where especially close, at the time of my brother diagnosis he was 50 yrs old. Younger than myself it just seemed so unjust. Why the middle child, why before myself and another sister and my elder brother plus mother it should have been one ok daring us Not him I was so angry and I do mean angry, I still am. What where the odds we both ended up with the same oncologist. Professor Dean Fennel. Even he said it was strange for him treating a brother and sister at the same time, during our treatment we both had the same cancer, we also found out it was a genetic fault, and our other siblings should all get checked, recently I found out another brother has now got it, again the exact same type. M-J I am telling you all this so that perhaps understand my story, also because if me wanting you to get the right palliative care. If you don’t want me to continue, with my story just let me know ok, I am just wondering if you did end up on antidepressants, if so always keep in the back of your mind it takes time to sort the correct ones to suit you also if you haven’t keep in mind the 2 I mentioned as being the best. Well they are for me, but will not suit everyone, I personally if you do decide or have started them I would probably prefer you to start one of the 2 that I take, only because over the years different people have said that after I recommended ten they found they suited most of my friends more so than any if the others. I also do know anyone in the medical field who get depressed the vast majority use one if the two I am on, I can’t  remember which one it was now, but it was linked to high rates of suicide, thankfully it’s been taken off the market now, yet there’s still a sister drug still being supplied I will find out the name of both, just in case. Ok right I am going to get some sleep now but please tell me if you want me to stop with my story, I find by telling mine it’s helps others and that’s all I want to do now is help if I can you take care M-J I will not apologise for wanting you to get the correct palliative care, because you need to get the proper palliative care. Night M-J and I will write some more tomorrow unless you say stop, please I would not be offended in the slightest, I can be a genuine friend if that’s what you would like, having said that I would never expect you to tell me who you are or ask anything personal about you, like your address name things like that me using half my first name was my choice, yet in reality it’s not like it’s giving much about my identity away is it not really 

hope you have a good day tomorrow Marj 

Hi Marj

Thank you for your thoughtful concern about the palliative care l am receiving. It is very kind of you. 

I am mindful our posts have strayed from the original thread and there are members who find it difficult reading long posts on mobile devices with small screens. I understand how you kindly want to help me and others and l wondered if setting up a blog would be a solution. You would still be able to help me and others by detailing all your experiences. I and other interested members would be able to respond to your blog posts. If you cannot work out how to set up a blog l am sure if you contact community@macmillan.org.uk they will be happy to help you. 

Hope your pain and breathing is improving x x

Hi M-J you are right I more than you have actually deviated and stayed of the original subject. I have set up a blog, nothing on it yet. I have called it extended live with cancer, and the affects. So thank you again for your good idea. I did try posting a comment but at the moment don’t know what I am doing, I will soon work it out. I mentioned in my last message. If you had tried any antidepressants yet or are you still unsure. I do think I mentioned earlier on if your going to give them ago to avoid any that are linked to the and please please try the ones I suggested. Which personally I am Farley sure that at least one of the two could be a big help in a big way. Depression can get in our way, it’s ond of the biggest things most cancer patients get. I can be really funny about  what medication I take, I have meds here that I do not take everyday despite the prescription says i should, I just have a philosophy if at times you don’t need them so why bother. I personally have found that taking antidepressants helped me a lot, now that’s saying something especially from someone who was in denial about being on them in the first place. Let me know M/J if you decide to try or not. Again I am literally falling asleep as I write. Take care M-J and do let me know what you decided. Lots of love Marj xxxx

Hi Marj

Glad you agree a blog will be better for you to post your experiences and thoughts. 

I decided against anti-depressants as having discussed the depression with my palliative counsellor and my hospice nurse l agree with their suggestions as to the cause. I am fine once l know 'why' and have found my low spirit is not now so all consuming and my interest in my new home and garden is returning as to is me making an effort to see my friends. Living alone is also another reason for me not to rush into taking mind altering drugs.

If you haven't managed to work out blog posting do ask community@macmillan.org.uk for help x x

Hi M-J in many ways regarding antidepressants I think you have done the right thing. Although I take them myself. It took me a long time to accept I would need them for life, but that was to do with my past and past traumas. Although it’s understandable that you did consider them, overall if and only if you can manage without the better. It’s much much better to have support from those around you and the Hosoice, etc. I say. Someone who doesn’t want to sit there discussing my life past or present with people. However we are all different, you said your daughter didn’t agree or understand a little while ago. Has anything got better on that front. What exactly was she against or was it problems accepting your diagnosis. Sorry M-J my mind tends to forget something for a little while, then all at once it comes flooding back. Right now I am in a bit of a blank brain. I know I have had problems with my diagnosis not being accepted. I have also had problems with people in my family telling me what I should and should not be doing. Sometimes I think with family they believe they want the best fot you. Yet at the same time you. Just have to say no. I know I did. I turned round  and pointed out it was my body going throug this not theirs, I also had to remind them I was a person in my own right, not just their mum or a wife but a actual person who had her own opinions and feelings. In effect regarding treatment, funeral I was having to be a a bit of a tyrant, being cruel to be kind are the words I would have preferred, but got tyrant, yes I sorted my own funeral and I had DNRs put in place also stroke plans, recently I have done a advanced directive. This might sound bad, I have done this because I don’t want  to be kept alive at no cost. I ban not see a point to letting them save my life, just to prolong things. One of the most uplifting thing with all this was knowing no matter what others wanted from me I was and am in control. I genuinely think families can make depression worse or even bring it on sometimes, don’t let anyone do that to you, anyone in our situations either with cancer or COPD others like us who have both, we really really have to take control back, for our own sanity, regarding starting my blog I have not worked out yet how to post anything. Although I genuinely have not had a really good look with still having this lung infection, not even sure about the title. M-J but I will get there, especially once I find a more suitable name. I am pretty good at technology overall. Once I put my mind to something. So it’s telling me one I am either too tired at present or I need a more in-depth title. I thinks personally it just constant tiredness. I will write again MJ in a day or so to see how you are. I do know if ever you need or want to chat about anything I am always here for you to do so, 

lots of love and please take care Marj 

Thanks for your kind concern Marj.

My daughter is in denial re my 2nd lung cancer diagnosis, end stage copd and hospice support and l find it distressing and prefer not to talk about it.

I do think you should ask for help as to how to post on your blog as community @macmillan. org. uk will happily help you. I have been thinking about a title for your blog and  wondered as your experience of surviving a 6 to 8 month prognosis for 5 years is so encouraging. Would this work 'My 5 years of incurable lung cancer and copd'?

I am now in week 3 of latest chest infection and l am having a break from taking antibiotics as the worry is l may develop an allergy to the only antibiotic l can take. Am hoping as the weather is finally getting warmer this will help.  Hope yours is easing and the tiredness too x x

Hi M-J please accept my apologies once again for not having been in touch sooner. I did write you a message last week, but I did my normal caught something and deleted it. I hope things with your chest infection is getting a little better. I also hope your depression is under control. I can not believe you can only have the one antibiotic. Now I thought I was bad with my limitations of medication. I only have a choice of three myself. Those three belong to the cin family. How long for is anyone’s guess. But you M-J with only the one it must be frightening really. I understand you do not wish to speak about your daughter being in denial. It’s hard I know. I have had a struggle myself with another chest infection. It’s one following another. It’s at times like this I genuinely want everything over with. I saw my consultant last week. He felt they had neglected my well being. He also thought perhaps me wanting for things be over as underline depression. I know it’s not. After speaking to my GP after he agree with me. However I do see my GP more than the consultant I have taken antidepressants for a few years now. I have mentioned this before and mentally feel very very balanced. It’s hard sometimes for the consultant to understand why people want things to come to a end. I truly believe they think everyone wants some form of life no matter how bad it is. But there you are, anyhow again I apologies for not having been in touch and I will drop you a message when I can. Please keep well and you also stay in touch. Do not ever feel bad for feeling depressed. It’s a illness.  Marj xx