Depression and living alone

Sorry Jim l use a mobile phone and the accept and decline are too close together so l have sent you a request in the hopes you don't have the same problem! 

Hi Caroline 

So sorry to read of your difficulties and worries which are understandable as your diagnosis and treatment you were not happy with and you have concerns as to your future. Have you thought of discussing these worries with your gp and ask for a second opinion? Stress and worrying about reoccurrence is not going to help your well being. Do your cancer services at your hospital offer counselling which may be helpful? I realize you have a need to express your feelings and worries. 

So sorry if my asking if you have an incurable prognosis has upset you but this new group is being trialled as there are a number of us who are living with an end stage prognosis and we would like to be able to chat freely about topics that do not involve palliative chemo, immunatherapy treatments etc. We are beyond that stage and still have the need to share and unburden without causing offence to those going through treatment. It can be very lonely at this stage. Unfortunately a very brave kind soul tried to introduce a discussion on assisted dying which caused distress to some and relief to others and the outcome is this trialled sub group. We are being sensitive as our discussions are part of incurables. I am aware that in the past members of incurables have found it difficult if carers or those on first treatments post and they try in the kindest way point the poster to the correct forum without offence. 

I hope this explains why l asked. Hope your worries ease x

Hi m-j.

Thank you for taking the time to reply. I should say after recently reading from your profile, How much more it has helped me to understand more of what your going through. it's been a few weeks since i joined up to the Macmillan's online community group, and it's only now i find myself exchanging any of my experiences and thoughts with anyone so, thank you for that. It was late 2011 when my estranged wife (2nd one), out of the blue, decided to pack her bags with our 3 children (twin girls & one boy) and move back to mothers. At the same time, i had been experiencing  all the symptoms of a urine infection?, and embarrassing as it is to say, had also been struggling with my nightly duties in the bedroom!,. Which probably had a lot to do with the bag packing, who knows?. Being as stubborn as i was, it was only when urinary problems worsened that i visited the doctor who put me on a course of antibiotics to start with but things only got worse. Time to be embarrassed again, when my next visit resulted in  my doctor giving me the middle finger!, and you know i don't mean in the derogatory sense  . Moving forward, on the 22nd march 2012 i was diagnosed with stage 4 cancer of the prostate. At those early stages, i was put on hormone injections (decapeptyl) every 3 months, and i was told the cancer had settled itself in my hip, pelvis, and bottom part of my spine. I really wish i hadn't done this but, my curiosity got the better of me and i asked the inevitable question, how long did they think i had to live?, 6 months to 4yrs was my answer.  As the cancer grew some more, i was eventually put on a added dose of steroid (dexamethasone) which in turn, resulted with me ending up with steroid induced type 2 diabetes.My first real depression only kicked in when my "wife" decided to move further away with her new partner and i no longer got to see my children!, , but as i said, the tablets were no good for me. It was October 2017 when i had my last appointment with my oncologist after she shared the results of yet another bone scan. The offer of being upgraded to further hormone treatment which she explained would have similar side effects as chemotherapy was for me enough was enough. On January 1st 2018 i decided on no more scans, no more appointments, no more treatment, and especially no more tablets!. Today i'm taking pain relief, zopiclone (sleeping tablets) occasionally, doxazosin, to help keep my prostate from swelling, and the odd propanalol for the anxiety i get now and again. I've sent you a friend request which i hope you accept, would like to hear more about "you". Thank you for allowing me to open up and sharing with you. Hope you have a great day....  xx

Hi Jim

Glad my profile helped you join in and sorry you find yourself in this end stage sub group. Can l suggest you fill in your profile as it too may encourage others to join in. 

Sorry l fluffed up your friend request. My ancient lap top also reached end stage and rather than buying a new one l use my mobile phone. Unfortunately print is very small on the mobile and l hit refuse instead of accept. Hopefully my request has reached you. 

Goodness, Thankyou Jim it is a long time since l was asked about 'me'. I have tried not to be defined by my lung cancer and copd and somewhere along this journey 'me' has somewhat disappeared!

Like you my cancer was the cause of my marriage ending. My cowardly ex husband blamed the cancer for him having an affair so l went through an acrimonious divorce and my ex has manipulated our only daughter ever since and she is in denial l am now at end stage under hospice support. 

I think this is enough of 'me' here (we can continue on pm) as l am acutely aware this thread is for everyone at end stage to join in with their experiences and concerns. To exchange worries tips etc.

I do admire how you have stopped all your treatment Jim. I did decide the same back in 2016 but continued with scans and appts until last October. Oh the bliss no more scans, no more anxiety, no more counting the days until results. It is not until l stopped did l realise how this 3 monthly routine for 17 years had taken over my mental well being. 

As you didn't continue with the anti-depressants after your initial bad reaction do you mind sharing how you managed to over come your depression through such a difficult personal time for you. Not seeing your children must have been so hard for you. Do you see them now as you have mentioned your daughter and grand sons?

Do keep in touch x

Hi Margaret

I am very grateful to you describing how you take all your meds upstairs to take on awakening and then waiting an hour before starting the arduous tasks of getting washed, dressed and making breakfast etc. It was brilliant this morning not slumped over my kitchen worktop wheezing and coughing etc to be in the comfort of my bed taking my meds. Why l never thought of this l don't know perhaps habit as l have always lived in flats or bungalows and last time l had an upstairs was back in the 70's!

Hoping we can exchange more tips x

Hi MJ like yourself and many others, with end stage lung cancer. Or whatever cancer you have. I have been on antidepressants for years, it’s nothing to do with me having cancer that started my depression. Mine was due to childhood difficulties and becoming a widow with 3 young children at the agar of 29. I also like yourself. I have a 18mnt old granddaughter, and my daughter is expecting her second child, a boy in July this year. When I was first diagnosed terminal I didn’t cry, I didn’t say why me. After everything life had thrown at me at 54 I just said well never mind shit happens. I was given 6/8 with palliative Chemo treatment or 3/6 without. I had 2 sessions of palliative treatment and on my second I was so so extremely ill. That my GP and my end of life Macmillan nurse, they actually told my husband to warn my children because I wouldn’t last until the weekend. Like yourself I also have severe COPD. So I genuinely do not think antidepressants will make you away with the fairy’s. I am on concetrated oramorph and high doses of OxyContin. I actually found the OxyContin and oramorph was making me sleep for very long periods of time. I had asked to reduce the doses because I wanted to stay awake longer. Later in the week Macmillan tried to put my dose up even higher. I was already on 1,200 mg a day, plus oramorph concentrated for break through pain every 5mls = 100mg up to 6/8 a day. Cutting a long story down I decided to lower the doses myself because I met resistance. I did it slowly by 20mg morning and everything until I went to see a locum GP and I told him exactly what I was doing. I actually had some support then, I can honestly say I am now down to 60mg BD and 30mg 4/6 times a day for breakthrough pain. Although I feel the pain more at least in I am not sleeping as much. Oh and please bare in mind end stage cancer. With sever COPD now it’s been 5 and a half years since I was only given a few months. No one knows why I am still alive. My oncologist who is a world renowned cancer researcher. Asked if he could share my case with cancer research etc. Apparently everyone he’s spoken to who are all involved on cancer research all over the world knows about my case. Their genuinely is not one person or professor. Who can not explain why I am alive still. Only thing that they believe it’s all down to my attitude, not having cried or sad why me. One other thing I did say was no, no no. It’s have no intention of dying in the period you have given me. I have people to meet places to go before I die, and if cancer wants a battle you Mark my words I intend to give it the biggest battle it’s ever had. I don’t know if my positive attitude has kept me alive. All I do know here I still am when at one point when they told my husband to warn my children they said that 4 days before they said I would have died before the weekend. I now give extra bloods tissues etc to be sent direct to cancer research and some goes over to the USA, Germany etc. I was hoping that they would or could find out before I died as to why it is I have lived so much longer. With no one having the answers but I guess I am going to find out. I joined a PEACE TRIAL. So after I do pass they can use my organs for cancer research. Although I have had so much longer than anyone ever thought or understand, I know am coming to a point it’s enough now. The pain, breathing well everything really is becoming unbearable. Yet the one thing I keep holding on to is my Granddaughter I should never have met and my grandson who to be born. Don’t grieve for not being a grandmother, take antidepressants, most of all just keep saying your not ready to go yet, don’t just say it mean it like I did. As the experts don’t know why it’s truly the only thing is the reason I am still here. They say the power of positivity and the hurge to live is more powerful than any drugs. Anyhow wish you well if you want a chat just email me back mhv x

Hi mhv58

Oh wow Thankyou for responding to my dilemna. Your journey is very inspiring not only to me as l have lung cancer and am end stage copd but to everyone. Over 5 years is amazing and l can see why the cancer experts are so keen to explore your case.

I have this fear of taking anti-depressants and having a severe mental reaction living on my own. I have reacted badly in the past and in my late 20's recovering from emergency surgery as an inpatient l believed l could fly and apparently tried to fly out of a hospital window!!

Thanks for confirming you are ok on anti-depressants and l do admire how you have managed to reduce your meds on your own.

I believe l have a positive attitude and like you have never cried or said 'why me' but this has waivered with this wretched clinical depression when l have felt negative about everything. I am getting my positivity back then wham my gp is retiring in 2 weeks. She is that rare medic who turns away from her computer by moving her chair and speaks to me face to face!

My grief of not being being the grandmother l want to be isn't only being end of life it is because l have a difficult relationship with my daughter who is in denial over lung cancer x 2 and the end stage copd prognosis. 

Sorry to read that you are now finding everything becoming unbearable and do hope you meet your new grandson in July. 

Thanks so much l have been inspired by you to think my end stage copd may not be months but could actually be years. Hospice nurse did say exact prognosis for end stage copd is difficult to judge as you have proved. 

Thanks again x x 

Hi M-J I am pleased you found my message helped to a degree. First I fully understand what it’s like to have a daughter in denial I have one also. She’s 25 but when I had to sit down and tell them my cancer was terminal she heard no more she got up screaming no no. no. and she just was not prepared to talk about it at all. When I had my first dose of palliative Chemo, I lost all my hair after the first section, she saw me and ran off, I suppose it was the reality of seeing me with no hair it made it real to her. She would not  actually talk to me but she sent me a text about how I had to go and get a wig, because she would not look at me until I did. I got one just for her, I only ever wore it once, it was a hot day and I was sweating so much with this damn wig on, I went into new look looking for a new top, when a Banda caught my eye, it was in the George cross pattern, I asked if they had anymore I was told it was literally the last one in the shop left over from some England football competition. Can’t remember which one. I bought it and without a word or hiding myself I took the wig off and put the bandana on. I did feel I had to hide away, my philosophy at the time was one of this is me, and it’s how I am you other people accept I have no hair because I am not going to hide it from anyone. The amount of people who stare at you if your wearing a banndana or if you go out bold, because yes I did, and I held my head up high. So I really feel for you having this awkward relationship with your daughter. As I said to you last time I wrote I also have COPD graded 5 which as you know a 5 is definitely not good. I know how hard it is to say when your at the end stage, it’s difficult for them and difficult for yourself, have you tried explaining to your daughter how hard it is for you being in denial, in one way I was lucky I told you I had been sterilised but after I remarried I had a reversal and nine months after I had a ectopic pregnancy. Which I found out before the reversal it carries a 80 % chance of a ectopic. After I had the ectopic they said it was highly unlikely to work, they got that wrong on my 6 week check up from the ectopic I was experiencing a pain in my left side just the same as my right side. The registrar didn’t really listen so I went to my own GP who arranged a urgent scan, I waited while the doctor phoned then I was in that afternoon, I was dreading another ectopic it was the thought of another operation so soon, surprise surprise the baby had passed the scaring and latched on in the womb so their I was baby number 4 on it’s way, shortly after he was born I found out I was pregnant again and off I had to go for another scan and yes this one also passed the scarring and baby number 5 on the way.. if you have tried to talk to your daughter and she’s still not accepting your situation. Ask Macmillan to come and havd a chat to her, with you present. They will do that and I do hope Macmillan are attending on a regular basis. Plus you should also be having almost daily visits by district nurses. With regards antidepressants, I have found out they will prescribe you the cheapest ones the can Prozac being a favourite, however thers so many different names out there that are Prozac based drugs and truthfully they are as much use as I chocolate kettle. It took then a good few years to get me into the right one, like yourself I didn’t try to fly but I did some weird and strange things. Eventually I had a nervous breakdown and they found the right one for me 2 in fact one being extalepram the other being venaflaxine  I do also know it’s must be so difficult for you being alone, I am still married but truthfully it’s like being alone, when I was in immunotherapy one thing was required and that was to have your temperature taken every 4 hours this was made extremely plain and simple to my husband and he was told even if I was asleep it was imperative it was done if my temperature was high or lower he had to phone the emergency number to get me into hospital ASAP. With it being a new drug they didn’t have all the full side effects, one of the biggest was the drug could start attacking my lungs not just the cancer which would cause my own natural cells to attack my lungs and also it could do the same to my pancreas. In other words my own body turning in itself. Well I can honestly say not once did he ever ever check my temperature if I fell asleep he would and still does just close my room door and waits for me to wake up, if I am being truthfull I could have been dead a number of time for about 3 days before he would check in me, and that’s no lie. I like you had doctors who turn away from the computer and face you, and actually talk to you so I am going to make a suggestion that if you do try antidepressants ask for extalopram do not be surprised if you are told it’s a black listed drug that only because of the cost, I only got mine because they where prescribed by a physicists, I once they have given it to you then you will have no problems getting it again, I know it was on a blacklisted drug chart 3 years ago I went with a friend who had been prescribed 3 different ones everyone was related to Prozac. So before your doctor leaves ask her for that one or even venaflaxine, neither of those two antidepressants give you hallucination and generally do have a good response to helping people with depression unlike a lot, I am sorry M-J it’s the only thing I suggest, regarding cancer research being untested so much in my case, I have said they can have anything they want or need, because if I carry something that can help others live a few years longer then I am only to happy to help. When I said it’s becoming a bit of a nightmare now, it is, I don’t react to any treatment I have had so far very well at all and living with some of the side effects are starting to become a bit too much for me now, also when I said don’t grieve for not being a grandmother I meant it in a positive way enjoy being a grandmother now for as long as you have got, just keeps on telling yourself cancer and COPD if you want me they have a fight on there hands because you are going to enjoy being a grandmother despite what the cancer and COPD want your not ready please please enjoy them for as long as you possibly can do. Do let me know how you are getting on I would love to keep in touch with you, you have touched a corner of my hearts and I genuinely do want to to write anytime you feel you need to let me support you, just remember I am here for you, even if it’s only to have a good moan looking forward to hearing from you soon  xxxx

mjhv58 

Sorry mhv58 for delay in replying l have had a bit of a drama. I went to stay with a friend and l was allergic to her soap powder. So all her towels and bedding brought me up in an itchy rash from my face everywhere down to my feet. Thankfully she had anti-histamine tablets but l react to them. They knock me out like sleeping tablets. I came back today so it will be good to not itch. Not the  break that was planned but it was lovely not having to cook and enjoying her company. 

My daughter doesn't live near me so l could not ask Macmillan to intervene. I do appreciate all your suggestions. I am feeling the depression is slowly lifting and started to take an interest in my garden again. Having planted my life long dream of wisteria am thrilled the leaves are poking through the trellis.

Have you heard of The Grove in Bournemouth? It is run by Macmillan. I have met a fellow lung cancer patient at the hospice as we have done several courses together. He has just had a holiday there and everything is laid on for cancer patients. You have to have confirmation from a medic you have cancer when you book a holiday. You can go with a partner or a carer and they have a nurse on call. I was wondering whether you could apply to go and whether this would lift your spirit. You do sound so weary which l can relate to. It is so debilitating having lung cancer and end stage copd. I do find my breathing is slightly easier now l am not weighed down with winter clothing.

Thanks again for all your suggestions and do keep in touch x

Hi M-J it’s now my turn to apologise for a delay, however before I explain I was so sorry to hear you had gone away for a few days, only to have a allergic reaction. I really felt for you. It’s so dficult to even try to get away, but when you finally do. You just want to enjoy it without something other than your COPD OR CANCER, popping up.Its must have been heartbreaking for you. I know when get anything even a flare up with my lungs, all I want to do is be at home. On top of that I bet you your friend felt really guilty too. Yet truthfully we both know if you are going to have a unknowreaction then your friend couldn’t prevent it. I am not that good on anti- histamines either. I ended up having to have mine prescribed by my GP the over the counter ones, either do not do anything r me or I have a reaction to them. I am on one called Fexofenadine Hydrochloride 180 mg a day. I must admit it’s a high dose but god do they work well. If ever I have a reaction or break out with urcaria theses fortunately seem to work very quickly thank god. Right my reason for not having written sooner.  Prior to me writing the first email I had just started to get a bit of a chest infectionas I often do. Only it turned to pneumonia again. On paper pneumonia I have a really really very negative prognosis of survival. I say negative it depends on how you look at it in my case. Has you kw this mirical as become a punishment. I have DNRs stroke plans in force just to let me go. So before the pneumonia really set it, I told my GP I did not want antibiotics to clear it up. I have a grt doctor who actually believes I should do exactly as I wish. He didn’t try forcing me he only ever asks me one question and that question is are you sure. If I say I am sure then he will do as I reest. So there I was not technically committing suicide just not being treated left into the Lao of the gods, or as I say let nature takes its own course. I would not commit suicide at all. Not for rigious reasons, I will probably make you laugh really, I refuse to have my insurance policies void because of suicide lol . Well they go on about me being a miracle. Once again I have surprised everyone with having survived pneumonia especially with lung cancer COPD and not treatment. The if it’s not Sod’s law as I am getting over the pneumonia I come down with pleurisy on top. I actually am recovering from that now. Honestly I just don’t believe I have survived  pneumonia but pleurisy as well. So here I go and defying the law of nature again and again. Yesterday although extremely tired I just sat back and thought, they give me 6/8mnt in 2013, and didn’t die. It’s almost as if I can’t die. I know I really am such a horrible person people would give everything they had to be in my position, yet I don’t want it. Mind you if a lot could feel the way I do and be suffering in the same way I am sure their would be a few out there that might just understand. M-J I will or should I say send you this email now and finish off what else I wanted to say. Also a couple of things that I was going to ask you sometime tomorrow evening please. I am just so so tired still and I am almost asleep again . So sorry best wishes MHV I hope you really are ok. Xxx