Well I never

Lovely to see your update though am very saddened to see your husband is suffering. Often wonder how things are with you as you are at similar stage of journey to us.

Quite concerned that he is struggling with his breathing. Forgive me if I am stating the obvious but has gp checked his chest, maybe there is a simpler solution. I know it is very easy to consider the worst when at this stage of the journey and await oncologists plan.Am hoping gp may be able to prescibe something to alleviate symptoms.

I will be thinking of you Monday and hoping Oncologist comes up with an effective longer term plan.

Sending you a big hug.

Lesley xx

The breathing issue has been reviewed by the GP and it's been put down to the anaemia. I think it probably is the reason. Mind you I think we have another chest infection brewing by the sound of the coughing, sigh. He had the Zoladex jab today and it hurt like hell and had blood taken in preparation for Monday. So a typical day in the life of a long term met patient.

I must admit to feeling pretty down myself, I think the years of being on edge have taken their toll on me and although on the surface I am the same, I know I am not. I am a very lucky person, I know that, I've been married to my love for 39 years, have two wonderful daughters and now a beautiful granddaughter. And we have survived five years of metastatic disease and we didn't expect that. I'm not sure why I don't feel like jumping for joy these days but I am so weary of it all. That's the reason I don't post much anymore. There's really no alternative but to just get on with it. We do enjoy our lives so it's not all bad but I do wish this disease would do one! I have no doubt we all feel the same.

Lots of love

Allison xxx

Maybe it is the sense of time ticking on Allison - being blessed to have had 5 years that you maybe didn't expect to begin with does not trump the sadness of wondering when the luck will run out or the exhaustion of constantly being on your guard. You have said this to others plenty of times so I will remind you ..... sometimes the one looking after forgets to look after themselves.

Keep on being strong, my friend, although I have to be a little selfish and admit I miss your posts on here.

Love you loads xxx

Why not

Best wishs Allison

Barry

To hold down a job and look after your OH in the way you'd like is an impossible task. Your doctor has done absolutely the right thing for the 2 of you. Taking better care of yourself will enable you to care for John with more energy, and most importantly proper rest.

It seems unbelievable the comments that have come from work. In this day and age, target driven management has a lot to answer for. It seems some people just don't have an understanding bone in their bodies. It was Richard Branson, I think, who said the company that best looks after its employees is the one that will achieve the best customer satisfaction. It is a maxim that needs to be followed more often.

Best wishes to you both.

Paul

Allison, so glad you wont have the stress of working, it amazes me how people manage to carry on and have a loved one they are caring for., I would have gone crazy if that was the case when Neil was ill. Hard to do, but hope you get some time for yourself, even if only a distraction. I know how this whole thing eats away at our physical and mental resources. Hope you have a bit more time to post here, I often think about you and how John is getting on. My love and thoughts with you,

Fiona. x

I so so empathise with you.As yourself, I understand 5 years of dealing with a loved one with metastatic disease trully takes its toll. Constantly trying to keep the family organised and in good spirits. Maintaining a positive attitude when deep inside the negative thoughts battle to the forefront of our complex brains. And then throwing a stressful job into the equation where it's so difficult for colleagues to really appreciate our stressful situations.

I have had a recent change in work departnments and change of work colleagues. It quite unsettled me and i had to take some time off to recharge my batteries and discuss a plan of support. I have been very lucky that my new work colleagues are most understanding of our circumstances. I am still counting down 4 years till I can retire at age 55, though I too have the option of 6 months full sick pay if needed.

Allison I am so shocked at some of the comments you have had to deal with from your work. So glad to hear you have a good option to step away from work. Hope you can recoup some energies to enjoy valuable happy times with your family.

Take care.

Lesley xx

Your words have struck such a cord with me, the stress and exhaustion of living with our sort of diagnosis is mentally ,physically and emotionally so draining.. Yes so grateful for the extra time but the cancer is always just over your shoulder. We can,t run from it and we can,t hide it is the extra member in our life.

So glad about your work situation people don,t realise how hard it is too be pulled in so many different directions you can now focus on John. Stay Strong.

BFN

Julie X

Just an update from us. PSA remains low and stable. We continue on with Stillbestrill (that's from Sept 13!) at least for two months, which is our next oncology appointment. In the meantime they've booked a new bone scan to see what's happening as John has been having pain in the back ribs and left side. On that point, he also had a kidney scan today and they said right away that he needs a stent, his flow is very poor and the prostate is clearly blocking the ureter. We aren't sure when that will happen. But it can't come soon enough. We've always thought the left side pain was his kidney and feel relieved that the stent will relieve some of the worst and most annoying symptoms (at least I hope it will, I've no experience of this). I must admit the horrible period before an oncology appointment has been getting me wound up recently, and now I'm not looking over my shoulder at work tasks, I feel I may be able to cope better, who knows though!

The Dexa scan he had a few weeks ago has revealed some significant osteoporosis, especially in the legs and hips, and they are working out how to deal with it, possible a weekly biphosphonate, calcium and Vit D supplements we think.

So all in all a good report, much better than we thought, though the doctor did say the March RT is probably still doing its job. I do believe I married a walking miracle.

Having said all that I did read in Keith Cass's link to a new Site for advanced PCA sufferers that some G10s do live for 10 years or more and there were some things in the report that were consistent with John's diagnosis. Low PSA on diagnosis (25), few mets (5 or 6), little pain (this has generally applied to John). So he's now been given a challenge by me, he's done well for 5 years, here's to the next 5.

Love to you all, I can't tell you how much your support means to me,

Allison