Life is certainly never dull and as the years and months pass since Jimmy's diagnoses in April 2014 it becomes more of a realisation that things will never be normal again and we need to accept the new normal, some of us more than others.
Had I blogged on Monday or Tuesday it would have been in the tone of a very disgruntled carer looking after a cancer patient who is in complete denial of his situation. I only wish Jimmy would accept the new normal...but I am feeling slightly more calm again now and not as angry with him. An anger born out of my love for him.
Emma and I got back from our trip on Monday to find Jimmy at home sick with flu and a very chesty cough. I was absolutely gob smacked and couldn't believe that we had spoken to each other a couple of times during the day while we were on route home and he never thought to mention this to me. The first thing I did was get our flu meds out and dose him up and take his temperature. It was 35.1 which is normal for him. I then proceeded to blast him and ask how long he has been sick for and why he didn't make an appointment to see the Dr on Saturday instead of playing golf!! I phoned our GP and made an appointment for 9:30 on Tuesday morning. The Dr diagnosed rhino sinusitis, conjunctivitis and an upper respiratory tract infection and booked him off till Friday saying that if he gets worse or doesn't start feeling better then we need to come back immediately. We came home with 5 different meds and proceeded to take Jimmy's temperature every hour. By the evening his temperature was 36.something which for you and me is normal but already a bit higher than Jimmy's normal. Also bear in mind that because of his weakened immune system we have to report to high care if his temperature reaches 38. I endured a second night of no sleep, listening to his breathing and comparing each breath to the last and wondering of his chest was getting tighter and praying we caught this early enough and the antibiotics will kick in. I took his temp at 8am on Wednesday morning and it was 37.3 and again at 9am and it had shot up to 38.5. I phoned through to the chemo clinic and they said to bring him in straight away. Jimmy was assessed by his haematologist who booked him straight into high care where he was put on a drip and intravenous antibiotics.
They did bloods, chest x-rays and some cultures to identify the infection. By last night Jimmy's temperature had stabilised at 37.6. His blood counts are all down as well as his platelets which have dropped to 75. His infection markers are quite high at 80 (normal is 10) so this is a definite indication that there is infection. But I have to say that his symptoms were definitely not as bad as previous times when his blood pressure was low and he was short of breath. His chest x-rays came back not being very clear as there is quite a bit of damage from previous infections so they compared them to his last ones and we are relieved that we caught this pre-pneumonia and it is more than likely a bronchial infection. They are concerned that he has a very bad cough and are not prepared to chance it that the infection gets worse so he will stay in high care until Monday on intravenous antibiotics. Today Jimmy's temperature was back to 35.6 and they had him on a Nebuliser for a short while.
I have decided that I am going to enlist the help of a cancer support group representative (not quite sure what you call them) or hospice and get someone to sit down with Jimmy and explain to him that he has to listen to his body and take the necessary action when he is not well. He has to accept that he has cancer and a compromised immune system and will never be normal again and that next time he has to be intubated and ventilated he might not be as lucky. He needs to understand how these episodes affect everyone in his life and how much it is wearing me down. His friends have spoken to him and God knows how many times I have spoken to him and each time he promises me he will change...... Yesterday morning he sat on our bed crying and apologising for not acting on this and for what he is putting us through again. I know that Jimmy is scared.....once you have cancer it NEVER goes away. It consumes your head almost 24/7, you never know what is going to happen when, you over analyse every new change or symptom and as a carer it is the same for me. I believe Jimmy needs help to face these fears and accept the new normal and know that we all still believe he is a hero for being such a fighter and coming through this terrible disease as well as he has. That he will never be judged for saying that he feels tired.....He will always be my hero xx
1 comment:
Vivienne!! I can't believe what I am reading! Bad Jimmy!!! OMG, if I was close by I would personally come and "yell" at him ;) He can't be in denial about myeloma. It is a serious immune compromising cancer. Maybe it's the macho-male thing, or maybe it's still denial that he has a chronic, incurable cancer. Sorry to be so blunt and harsh, but as you know, I've
"been there, done that" and know what's happening to his head and body all too well. I tried to get back to "normal" also, but learned my lesson, and have had to accept the "new normal". So many patients after SCT, think they'll be just fine, and they're "cured" (like other cancers), and on about life they go. Noooooo... myeloma is different and it's for life! So sorry I am being so direct. But again, I've known what myeloma can do for 6.5 years, and Jimmy has to take his situation seriously! Maybe you will see this comment and read it to Jimmy. He has to take his health seriously! He's been thru so much already, and so many hospitalizations! No more set backs Jimmy! You have to take your symptoms seriously, and you have to protect your health and your fragile immune system. You can still enjoy life, and work, etc, but you have to accept we are different now, and can't take protecting ourselves lightly. Ok lecture over... get better Jimmy, and behave... please!
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