Depression and living alone

Hi mhv58

Thanks so much for thinking of me. I am feeling sorry for myself as l had to cancel a pamper day as l have yet another chest infection. My friends were treating me to a day out.on Saturday. The only positive thing was the weather was so cold and wet we probably would have cancelled it anyway. I had pleurisy years ago and understand the pain you are in. I had the pneumonia jab a couple of years ago and listening to your accounts of repeatedly getting pneumonia feel very lucky not to have had it. It is amazing where you refused antibiotics you have managed to overcome pneumonia naturally. I know some lung cancer patients with copd are on maintenance antibiotics ie they take tablets for 3 days out of 7 permanently. My lung consultant wanted me to go on maintenance to prevent these darn chest infections but l cannot. I am allergic to penicillin and now any mycin antibiotics so only have one antibiotic l can have and he didn't want to risk me becoming allergic to this.

I do find it easier to manage these chest infections as l have a week's emergency supply so as soon as chest infection symptoms start l can start taking antibiotics and then get a gp appt. What a farce l have moaned elsewhere my gp retired and talk about bad management rang surgery to get appt with new chap to be told he is on holiday. Surely the surgery could have negotiated my retiring gp to work an extra fortnight so a smooth handover rather than waiting 2 weeks without my named gp..... Grh!!

I was wondering whether you have thought of ringing the Macmillan helpline to get some support re your feelings on being a miracle patient and how this weighs heavy on your mental well being. My lung consultant has told me l am his longest surviving lung cancer patient which l tend to dismiss that l was lucky with the tumours being found at a treatable stage and do not feel unique or special. Think this is down to my approach where l refuse to be defined by what illnesses l have. I can see how difficult this is for you and hope it is helping you by sharing your thoughts with the incurable group.

Do keep in touch and more than happy to answer any further questions you have x x x

Oh M-J nothing wrong in feeling sorry for yourself I do think everyone who’s going through cancer, COPD, or both in many cases have a right to have days where we all feel sorry for ourselves. I amo sorry you didn’t make your pamper day, things like that matter especially when you can’t get out much. When I last wrote I thought I was getting over the pleurisy how wrong was I. I had been feeng a little better for a couple of days, yet I of all people should have known better than that. The following morning I felt worse than ever not just with pleurisy but I felt I had flu on top of . I like yourself have had The pneumonia jab and each your I have my 2 flu infections for some unknown reason I have to have to two, one August September time the other end of February begins of Mch. I have had to have had the 2 for about 5 years now. If I was honest my reason for going without antibiotics when I had pneumonia was for one reason only, firs I will tell you I am not and far om suicidal person. It just being this mirical patient which I have already said has become a punishment I just thought there was no way my body was in any state to fight pneumonia off on its own,o doctor did either. Everyone told me if I should get pneumonia even with antibiotics it would be doubtful I would survive. So when I did get it, first I refused hospital treatment then I refused tibiotics thought I would bring thing to a head and put a stop to this punishment. Well again no one can seem to understand why. I literally am just so tired of existing and not living. I also knoa lot of people would give anything to be in my shoes if it meant a longer life, I have always said quality over quantity, yet got neither although i am alive that’s all it is someone alive and brthing only not living. It’s rather bizarre how much in common we have, my COPD consultant wanted me to start taking preventive antibiotics to try to put a stop to all the chest infection because Ian not also have penicillin and many many other antibiotics I vetoed it myself. At first the original DR I was seeing was doing a few sputum tests to see what else I was sensitive towards, becauselthough I had been on some antibiotics suddenly after a few moths my body reacted badly to a lot. Like Docicyclne fine with that for just over a year, then just out of the blue I took it and I cou still go shopping then. Once I got out of the car, I started vomiting so so badly that one it was acutely embarrassing although it didn’t happen in a shop it was against a wall. After just over aour later I got back into the car and came straight home, not having been in any shop at all, for 3/4 days I was incapacitated, with vomiting that badly it just made me so so ill. Anyhow he kept ting me on different antibiotics without trying to compromise the only one I could take for chest infections. On one occasion DR Green was of Himself and I saw another Dr who gave me 2 prescriptionone was to take antibiotics 3 times a week to try and control the amount of chest infections the other was for the one antibiotics I could take. Yet both antibiotics belonged to the same family anDR Green was trying not to give me the one to try and prevent a chest infection that being the case I refused to get the prescription telling her in no uncertain terms that DR green was not happy th the combination of the 2 could leave me without a antibiotics that would work should I get  to a point they wouldn’t work any longer. What I did want to ask you are you on oxygen and do you hava oxygen concentrator at home. I don’t know why but I got the impression for some reason you hadn’t and was not on the oxygen. If not then it’s about time you started to put your foot down and staed insisting. I know end stage COPD is hard but never the less, you should have these things. I know after a certain chemotherapy I had been having my GP had a oxygen concentrator and a hospital b in my house. She had then out that same afternoon. I also have portable oxygen for if and when I go out of the house. Which now is only for a scan and to see my oncologist. COPD didn’t make me anher appointment after I had a go at the doctor who tried to put me on antibiotics the same ones which I could use. Not that I worry because my oncologist and COPD I now see at my GP surgery. I didut a complaint in about her. Believe you me oncologist who is a professor and my GPS Macmillan everyone who knows me knows I have no qualms of telling them exactly what I think, because if anythinthat one down fall I do have, you suggested I sooke with Macmillan about how I feel being a mirical now a punishment. I already have spoken to them all about it. Unfortunately there’s nothing theyan do it would be classed as euthanasia if they where to help in anyway with us being in the Uk it’s obviously against the law. Yet they wouldn’t let animals suffer in the same way they do humans er here. Anyhow M-J I will write again in a couple of days or so but in the meantime do let me know about the oxygen situation you have or do not have. It’s just amazing how different counties worthroughout the UK work. I am in Leicestershire. Also call me Marj using your name the don’t advise well I am only using half lol keep putting MHV58!is a lot where as Marj is much easier xxx

Hi Marj

Good to hear from you.

I am very curious as to why you have 2 flu jabs l assume by your dates one is at the beggining of the flu season and the other at the end of the flu season. This year l had the flu jab on a Saturday and by the Monday l had a chest infection. All the publicity says you cannot get flu from the jab. I queried this with my hospice nurse and we came to the conclusion that you do not get flu from the jab if your auto-immune system is ok but for us our auto-immune defences are compromised. Thanks I will ask my new gp about whether 2 jabs would help.

You asked if l am on oxygen. No I am not. I apparently most unusually for lung cancer and copd have good oxygen levels. I did ask lung consultant whether being on oxygen would make a difference when l get 5 chest infections one after the other and some days could not walk from lounge to kitchen without several stops. He said it would have not made a difference. I know Margaret was starting oxygen a couple of weeks ago and haven't heard how she is getting on with it and whether it is making a difference to her mobility etc. 

I am sorry Macmillan was unable to help you and wondered whether you were having any hospice support? My hospice has trained counsellors and other staff are trained in well being awareness. If you go to any of their courses or social activities staff do keep a watchful eye on your mental health wellbeing. I was wondering whether your local hospice could help you as they may have had experience of other patients considered 'miracle patients' and would understand how you view this as a punishment as your quality of life is such a struggle.

You have mentioned your children. Do any of them live with you? I was wondering if you were like me living alone?

Hope your pleurisy is now easing. I remember the pain as it was acute with every breath l took but l cannot remember how long l had it for.

Hope you have a good weekend x

Hi MJ

Sorry not been around much last few weeks but not been so good, they have been trying to get my pain under control, I have been on Bupomorphine slow release patches and over last few months they have tried increasing the dosage alongside taking short release Oxycodone for breakthrough pain but it wasn’t helping at all so saw consultant at my hospice and he has changed me over to Fentonal patches don’t want to speak to soon as I’ve only been on them a couple of days but I’ve had a really good day today pain wise so hopefully fingers crossed we have found something that works better. The oxygen is helping me around the house too and I am also taking a sedative  Lorazapam at night to help me sleep

Sorry to hear about your repeated chest infections I would have thought they might have considered oxygen for you to help you, also read your post about your allergic reaction at your friends house what a shame it spoilt your weekend 

Take care and have a good weekend 

love Margaret

Hi Margaret

Lovely to hear from you. Sorry you have been having problems with getting your pain under control. Constant pain wears you down physically and mentally so do hope the new meds work. It was good to read yesterday was a good day for you on the new meds. 

Glad oxygen is helping. I have an appt with new gp on Monday and will ask why l have been told oxygen won't help me. 

Thanks re allergy to friend's soap powder. I hope you have a good weekend and do keep in touch when you.can x

Hi Margaret, I'm so glad they seem to have, at last, found you something to help with the pain! It's terrible when you try all the things that others swear by like Oxycondone, Pregabalin and Gabapentin, I too went through a lot of things that should have helped but didn't. I do hope this continues to work for you and you enjoy the nice weather they are promising for the coming week. Take Care 

Thank you Annette for taking the time to reply especially with you and your husband  having your own problems, really hope things start to improve soon for both of you. Since I last posted the pain has been a lot more manageable so I’m hopeful the Fentanyl is working for me, I do have Oxycodone for breakthrough pain but today I’ve not needed any !

Take care

Love Margaret 

Hi Margaret, I think when you don't need to take anything for breakthrough pain, it means the main painkiller has started to do what it's meant to do and control the pain! I'm so glad something at last is working for you, long may it last! 

Hi M-J so sorry for the delay in getting back to you, although I have been thinking of you a lot recently. It’s regarding oxygen I am very much like yourself repeatedly getting chest infections. Some days as you will know you can barley breath, and like you also said how difficult it can be to even get out of bed. I can only contradict your consultants them saying it would have made no difference. I honestly think the vast majority of people with lung cancer and COPD will tell you it actually make a big big difference. I told you about getting pleurisy just after getting a bit better from pneumonia. If I had not had access to oxygen god only knows what would have happened. As I have already said I have no control of sleeping but during the periods of chest infections the pneumonia and pleurisy, although it was difficult I could slowly get out of bed and make myself a drink. Now I am the type of person just because it’s there doesn’t mean to say I am going to use it often. When my GP and Macmillan made the phone call to order it for the same afternoon. I did use it but at the same time I know this is bizarre but I actually felt embarrassed. Looking back I think it’s because you never think you are ever going to be in a situation in life where we both are. So at that time not having known too much about cancer but having COPD, I had not reached the point of needing oxygen. As I said I genuinely do think my embarrassment came from a few things really one being a mental stage I was going through at the time was how much of activity I had to forgo. I led a very very active life prior to all this and suddenly I couldn’t be nowhere near as active as I used to be, the problems that caused me mentally was like a trauma in itself. Of course as you become less and less active I found that to be one of the hardest things to overcome. Somewhere deep down I had convinced myself I will feel a bit better tomorrow yet as the saying goes tomorrow never comes. So I do believe the embarrassing part of having to have oxygen was suddenly it made me realise that never again would I be active. Although you know this but suddenly needing something like the oxygen just hit me in such a profound way. I remember after everyone had gone GP Macmillan nurses sitting back deep in thought. Always having known consciously nothing would ever be the same but subconsciously and hope I suppose really. I was hoping that day if needing oxygen I had pushed so far back into my mind it just became one hell of a shock. However hand on heart your consultants say it would have made no difference I find rather disgusting. It genuinely would not have made a difference infection wise. During the infections that where everything was far far better with the oxygen. The strain on my lungs from trying to breath become far easier and also eased quite a lot of pressure off my lungs just being able to breath that bit easier, actually it was a lot easier the breathing and less stressful. You know yourself how exhausting and difficult it is breathing more so with chest infections how hard it is on the lungs and stressful when struggling to breath. So that’s where I would challenge any doctor. You must be classed as palliative despite they can not fully predict end stage COPD. I can not remember what your cancer status is. Either way with them saying I think you are in the end stages of COPD. You would definitely be classed as palliative. Being palliative just means more or less the same as terminal. You are dying but can’t give you any idea on how long. Where as you know terminal means your dying and we think you have only 6 months left. Yet despite me having the terminal and living so much longer than any prognosis they gave me the 6/8 months. Yet 5 and a half years I am still here, the only bit of my actual diagnosis that’s been changed is one word, terminal has been changed to palliative, he told me he changed it because no prognosis could be given because I had outweighed my previous prognosis bun 100 fold. I have had the odd person say perhaps you have been misdiagnosed. Now that I know for a fact is not the case. I know doctors and consultants are very wary of how or what to say to some patients due to how some people will take it, people with mental health problems because of the mental health problems it maybe more detrimental to tell them everything. They have to do by law is put anything they think would be detrimental to a patient to one side and tell them as little as possible because of their state of mind. I am only using mental heath as a example there are other things they think it’s not in the patient best interest. Where as myself it more detrimental to withhold anything and my GP and oncologist know this. So not only do they tell me I also get to see every scan they do. When I was told I was terminal I was shown my scan and as I looked I was so surprised he gave me as long as he did, but then again I think I may have mentioned this before I was given the 6:8 if I had palliative treatment like chemo 3/6 with no treatment I chose the one that could possibly give me a extra few months. No one expecting years. Now M-J going back to you  being palliative literally do or supposed to do everything in their power to make you had comfortable as possible. Now if no one has said palliative I would suggest you ask one of your consultants when they say yes, ask to see someone from palliative care. Explain how bad your breathing is becoming and either ask for oxygen or you could word it in a different way by asking if they thought oxygen could help with your breathing, NOT infections they will say it helps a loof people but not everyone so therefore you just say you want to try it if it makes no difference then you tell them you will be honest if it does make a difference or not ok. You will find it makes a massive difference to which you will soon find out if you request it, consultants don’t always think they answered your question right to a degree which would it have made any difference well no to the number of infections to had or keep getting however the should have told you it can help profoundly with your breathing l. Not say no it makes no difference that just sure ludicrous. Please don’t just take my word for it, ask others you also don’t have to use it as often as suggested. At first I didn’t  I thought I would come to depend on it if I had used it as much as they recommend. Having said that perhaps it would have made a big difference if I had of used as they suggested, maybe I would not be gasping as much as I do now. With reference to 2 flue jabs a year is something I personally believe every cancer patient and COPD plus anyone else who have severely respiratory related illnesses should have to 2 the reason being is as we all know flu is seasonal in the uk from October to March. I was told because I couldn’t remember so I asked them to explain again last week after I told you I had to have the  2 a year. Flu is now quite often now becoming to be more and more cases have become people with flu getting it as early September and it starting to last longer up to the end of May in some cases, but those on both sides of the spectrum people like you and I  with the illnesses we have it’s best to cover each side of the spectrum and have 2 just the one would not be enough because of on paper should only be around approx 6 months in earlier and later cases or anyone else that’s everyone with cancer we are all immune suppressed. I was recently told by Professor Fennel I really do not have very much immune system at all. M-J so sorry for such a long reply, yet I found it, was required because of things your not been getting to make your journey easier. I am going to go back to sleep now, as I am struggling to stay awake and I do mean struggling. I will write in a couple of days and fill you in on what’s been going on with myself lately. After having read your message I just had to tell you what you needed to know to give you a better quality of life

lots of love and please ask about being palliative Marj xx

Dear Marj

Thanks very much for your reply and concern for me it is very kind of you. 

I have met my new gp and asked him about oxygen and he confirmed at the moment my oxygen levels are very good naturally. I understand your concern and l think l will have to wait for further deterioration or have my levels taken when a medic witnesses when l have a debilitating emphysema episode when l cannot clear all the liquid building up in my lungs.

You are kindly concerned about my palliative care l am receiving palliative care from a NHS hospital cancer unit counsellor and the hospice. Here in Kent we do not have Macmillan palliative nurses. You mention your Macmillan nurse but no mention of hospice support or a hospice nurse. I try not to get upset that cancer treatments and palliative care differs so much according to where you have cancer and where you live. Having learnt the hard way focusing on this upsets me needlessly so l now focus on the positives and feel grateful for the palliative care l am receiving. 

Take good care Marj x