Hi Min,
I don't know how to send a private message but my email is cmclarke@talktalk.net. I live in the Midlands (Kenilworth)
so a meeting is a definite option.
I have been persuaded by my son to fly back to Canada with
my daughter-in-law on 11th February for a couple of weeks.
They have a farm so both could not come over for the funeral and Nick
will be more helpful in Malta. David passed away at 5.45pm on the
Saturday and she was here by 12 noon on the Sunday and has not left my side since. I have another son who lives in London but they have two small boys and Roger has his work, so they could not possibly have stayed with me all this time. They wanted me to go back to London with them but I couldn't bear the thought of leaving so soon after the funeral.
Oh Min, thank you for your words of encouragement. I cannot believe that, come Saturday, it will be a whole month since my life changed for ever. Here I am again, roaming the house wondering how I am ever going to manage without him. I don't sleep, hardly eat and am haunted by the memory of those awful months when David was in such agony and bore it with such courage and hope. I feel so ashamed of myself for wallowing in self pity. I found his notebook today containing little reminders of things he was planning to do when he was better. It broke my heart. I don't think I will ever get over losing him.
We did everything together, everything!
We have an apartment in Malta and I have that hurdle to face – settling all our affairs there. He took care of everything and I've no idea where to start – my son will come with me but I dread walking into our home there.
I feel as though I am in a dream and will wake up soon and find it was all a mistake. Is this a normal reaction?
Hello Roisin,
My big problem is that so many things were left unsaid between David and me because he never contemplated losing the fight. It was always "we'll do that when I am better" – so much optimism. I know for certain that had the positions been reversed I would not have coped so uncomplainingly. I think I have now entered the 'anger' stage of grief. He was too poorly for me to take him to his last review appointment and I was told to dial 999 and send him in an ambulance. I refused to do this. Next day I requested his next lot of medication over the telephone and was told it was out of the question without him being seen. So I got him up out of bed and took him into a quarantined hospital. X-Ray showed no pneumonia (Wednesday) so we were given his meds. and sent home. When I arrived I turned my back to lock the car and the extremely strong wind blew him over. On Saturday he had extensive pneumonia throughout both lungs and that is what he finally succumbed to. How cruel was that? I am convinced that this series of events hastened his death and I feel anger and anguish. Will it ever pass?
Dear Dai,
I lost David on 7th January and I am bereft but I do find your sentiments commendable. How wonderful to be able to discuss things with Janet. I didn't get that chance because David never gave up hope, he was determined to beat the illness.
My son read these words at David's funeral and I think they reflect your feelings:-
"Do not shed tears because I have gone but smile instead because I have lived. Do not shut your eyes and pray to God that I'll come back but open your eyes and see all that I have left behind. I know that your heart will be empty because you cannot see me but still I want you to be full of the love we shared.
You can turn your back on tomorrow and live only for yesterday or you can be happy for tomorrow because of what happened between us yesterday. You can remember me and grieve that I have gone or you can cherish my memory and let it live on.
You can cry and lose yourself, become distraught and turn your back on the world, or you can do what I want – smile, wipe away the tears, learn to love again and go on"
I hope that, eventually, this is how I shall be……
Dear Alexis,
Thank you for your comforting words. I am bereft – can't sleep, can't eat and I have had my daughter-in-law here since the day after David passed away, we go to bed and then after lying there crying I get up and roam about the house. David was given a prognosis of 2-4 years and everyone told me that chemo. made one feel much worse before getting better, so I truly believed he would go into remission eventually and we would have some quality time together. He managed to fight back for just 10 months and they were 10 horrible, pain-ridden months and that is what
I find so difficult to accept. I feel cheated……
This is a big thank you to all the kind, very special people who have replied and offered me comfort. David's funeral was beautiful and I was overwhelmed at the number who came to say farewell – boyhood friends, golf buddies, former colleagues,
close friends and, of course, my wonderfully supportive family.
In the days before the funeral I was in a kind if limbo but now reality has kicked in with a vengeance and I cry a lot at the thought that I am never going to see him again other than in my mind and that is where my difficulty lies. His poor ravaged body and his lovely face pinched in pain are what I cannot get out of my mind. Of course I have photos
but it is that last image which haunts me………
Thank you so much Sue. I really find this site a help.
Chrissie
Good evening Claudette,
Thank you so much for your encouragement. Am I right in my assumption that sufferers who have had stem cell transplants do better than those who, for whatever reason, cannot have this procedure?
The other question is, when you travelled to France was your husband's treatment on-going? I do not see how we could possibly go away at the moment because David is under treatment/blood tests 3 time a week. His actual chemo is taken orally (which would not be a problem) but he has hydrating drips for the kidneys twice a week and the bone strengthening drug, Pamidronate, every fourth week. We did go to our apartment in Malta, in March, but against doctor's advice and he was in bed for the first three days. We also managed five days in Wales, in June, for our 50th
Anniversary but, again, he was very poorly after the journey and we came home early.
Like you, I also questioned the consultant regarding his treatment because he went downhill so quickly once it began and, to be honest, he has not really had many good days since. I was told, quite bluntly, that if he had not had any treatment he would probably not be here now! That was a huge shock to us a both as, before his diagnosis and treatment, he was relatively well. The whole thing began with a 'bear hug' from our son which fractured two ribs and crushed a vertebra. A bone density scan followed and he was told he had osteoporosis, then a blood test showed his kidney impairment and after several weeks, he had a bone marrow sample which revealed the myeloma. Prior to all this he had no symptoms whatsoever. It is cruel when you consider that a gesture of love and affection lead to such a horrible diagnosis, but as I am constantly telling Nick,
without that 'love hug' it might have gone on so long that it may have been too late for treatment.
Anyway as my 'friend' Tom would say, onwards and upwards!!
Bless all of you kind people for the advice and encouragement. I do so appreciate it.
Chrissie
Thank you very much for your kind wishes. I do not fully understand this horrible disease but David has so many myeloma related conditions that his quality of life is, dare I say, almost non-existent at the moment. He has had both hips nailed to strengthen them against possible fractures, chronic
kidney failure (moving towards dialysis) osteoporosis, anaemia and bronchiectasis. We seem to be forever at the hospital for one appointment or another. He has tried to remain positive over the last 9 months but is, unsurprisingly, becoming quite dispirited after two failed treatments. Still, while there is life there is hope, as the saying goes and I am greatly encouraged by the many responses, and experience, of the users of this site. Chrissie
Hi Eve,
We do have skype and speak to my son most evenings, it is just that David is desperate to see where they have settled. They send us loads of photographs but it isn't the same as seeing for oneself is it? We both know it would be foolhardy to travel against doctors' advice and are not sure if we would even be able to get David insured, so it is a pipe-dream really, but it helps to keep us both going somehow. I must admit that I cannot bring myself to ask too many questions regarding prognosis, and it would most probably upset David if I did. I find huge encouragement from hearing that Slim is a different man to what he was six months ago and I thank you for that.
Hello Nettie,
Thank you for joining the rest of the wonderful people on this site who offer such warmth and encouragement.
I read your profile before replying and noticed that one of your correspondents was going on holiday. That is my dearest wish – to be able to take David to Canada. Our son emigrated in June (with our full blessing)and David is so keen to visit. But how can we when the treatment is so on-going? I have asked the question of his doctors and they have emphatically advised against it. Still, it is one thing we can aim for in the future. David was given 2-4 years prognosis, and one of those years is almost up! Do we throw caution to the wind and go anyway?
Once again, thank you for your kindness.
Hi Bridget,
As you will see from the note I have posted to Tom, I have been feeling pretty down for a few days now. Actually, I am worn out. The MacMillan nurse has offered day care at the local hospice but, I get several hours free time whilst David is at the cancer unit, so this is not necessary. She has also offered counselling but I don't wish to go down that road at present. Thank you for your encouragement.
Good afternoon Tom,
I have been in a pretty dark place for a few days. The chest specialist has now told us that they have reached the end of the line as regards treatment for his bronchiectasis and this, coupled with the kidney problems, is making life a struggle for David. I feel so impotent. Thanks for your kind words though.
Good afternoon Bridget,
Have had some pretty devastating news this afternoon. David's consultant told us that the myeloma has increased by 25% and his kidney function has also worsened. Not quite reached the dialysis stage yet but getting ever closer. Because of the kidney impairment they can only use very low doses of Lenalidomide as it, also, damages the kidneys. Seemingly a vicious circle.
As for doing ordinary things, away from hospitals and myeloma, that is a pipe dream as he is now to have thrice weekly hydrating drips for the kidneys and twice weekly blood tests. The staff in the cancer unit are fantastic though.
Good evening Tom, and thank you for taking the time to give me such encouragement. I have learned to hide my worry (David always used to say if I had nothing to worry about. it would worry me!!) but it never goes away.
Like you, David is a fighter and has remained so positive throughout this nightmare, it has amazed me. But after two failed treatments, even his faith is beginning to waver. Having said that, I have read some of the posts I have seen, to him, and it has renewed his hope. As you say, onwards and upwards!!
Once again, thank you for your encouragement.
