I am ensconced in Fishguard, looking out of a picture window 10' by 6'… and framed in the window, is a photo-perfect combination of landscape and seascape. Bottom right I can see the old harbour of Lower Town where they filmed Dylan Thomas's 'Under Mlkwood' in 1972, with Richard Burton, Elizabeth Taylor, Peter O'Toole, Glynis Johns and Victor Spinetti. Middle left I can see the new harbour (1900) built by Isambard Kingdom Brunel and home to to filming of 'Moby Dick' with Gregory Peck and Richard Baseheart in 1956. The rest of the scapes of land and sea form the background of my childhood.
I see all this and report it to you by dint of a dongle that grants me access to the internet… and in return I learn of the passing of Peter.
The passing of Gordon, Gaye and now Peter, in such quick succession has, I am sure, left all the contributors to this forum shocked and dismayed. Some of us… those who followed Min's posts closely are, like myself, feeling bereft.
I was dropped off by the rest of the gang of my brothers and sisters (7 of them) after a morning out… they have carried on while I came home to sort out my dongle and put my feet up.
Min, the shock and pain I am feeling over the loss of Peter is small compared to your own… but shock and pain it is… and anger… his death seems obscene some how… the last thing I expected.
I am so glad my family and Janet are with me… I will be comforted by their enjoyment of the holiday and the wonderful feel of camaraderie in the house… and Janet, as always.
I hope that you are surrounded by love… don't drown Min, swim and survive. I and all of your cyber friends are with you… I just wish I was there beside you… just for a brief moment, to say how much I care for you… my true friend.
Much love,
Dai xxx
Gill's starting word was Friendship – leaving the last three letters HIP – from that she made HAPPINESS – leaving ESS. I think that the rigid rule is that you have to use the last three letters of the last word but you can use them in any order to make your word.
So:
Friendship
Happiness
Existentialism
………ism up for grabs.
Dai.
I think we were left with: E S S
So, I'll raise that to EXISTENTIALISM 🙂
Leaving the next to play with: I S M
Dai.
If you went to the pictures on a Saturday morning and paid to get in then you had pocket money – I had mine the same way, only our picture show was on a Friday night with a 7 O'Clock showing… so we had a good late night and the whole weekend to follow. We called threepence a Threepenny Bit as well.:-)
Dai.]
BTW – those Flash Gordon (and other guilty parties) were deliberately given 'cliffhangers' to keep us coming back each week.:-(
Hi Min,
Hopefully now that they have identified the problem they can find the appropriate anti-biotics and get Peter back to some kind of 'normal'… whatever that is. I can empathise with the high temperatures, I've suffered from my fair share and I know how uncomfortable they can be.
The loo-dash with IV stand was one of the events in my SCT Olympics… and I achieved some very good times. When the trots kicked in my times became phenomenally quick but often occurred penalties for arriving with more weight than when I started. 🙁 😀
Saying that I never had to contend with oxygen related paraphernalia… so kudos and sympathy to Peter for having to bear that as well.8-)
On a serious note I am truly impressed with his forbearance of everything he is going through… but I also hope that the last threads of macho-driven reluctance have disappeared from his ability to admitting to being ill and ready for the trip to hospital.:-|
For your sake I truly hope so Min.:-)
Dai.
My relapse in the spring coincided with a tumour on my sternum which was growing rapidly – I was fortunate that it was due to Myeloma and was totally eradicated by my first cycle of Velcade.
I wish Stephen every success in his treatments for his 'quite a few other bits of plasmasytomas' and I hope that after they have been eradicated and/or brought under control, that the myeloma remains immeasurable in his blood and leads to a long and happy remission.:-)
Dai.
Jumble Sales. I still love them today… despite Janet saying she thought I would avoid them like the plague given their significance to my childhood… but I didn't know any different.
The significance? I was the third of seven children (an eight appeared in my mother's second marriage). I can remember three or four of us having to stand in front of various clothes stalls facing outwards with our arms stretched out, while our Mother held various items of clothing against our backs to see if they were a fit.
Generally she was a very good judge and always went for nearly new in excellent condition. To me it was great fun with a cup of tea and a bun. It was also great fun sifting through the purchases and trying them on… on the rare occasions my Mother got it wrong there was always someone in our house or next door who had 9 children – of which several often joined us in line while my Mum and Kitty from next door marched up and down trying to get the best bargain – my Mum was quicker, with a better eye, so Kitty was always willing to buy anything that didn't fit our clan.:-D
I can honestly say, that apart from my first senior school uniform, I didn't have a single new item of clothing from the age of 3 months to the age of 14. And I was happy with the arrangement… and got as much pleasure from the Jumble Sale 'cast-offs' as any store bought clothing.8-) 🙂
Dai.
Sixpence was also a tanner in West Wales. I had a shilling pocket money between the ages of 10 to 12. It cost ninepence – 9d to get into the cinema with threepence – 3d left for sweets. Threepence would purchase a 4 oz. bag of mixed sweets… I normally settled for mix of toffees and pineapple chunks… not many of each in a quarter bag but they both lasted a long time. If the film was carp the sweets soon disappeared – if the film was good they lasted much longer.
If the film starred Norman Wisdom I almost always had a couple of sweets to chew on the way home… which took a long time as we recalled and re-enacted his brand of daftness.:-D 😀 😀
Dai.
Hi Debs,
I have exactly the same symptoms, with exactly the same effect as you and it drives me to distraction.
I don't bother with the Oramorph because as good as it is for general pain it just doesn't work on nerve pain. I'm afraid that I have no other suggestions (i bought a Tens Machine but had to stop using it after one session after discovering that I had a DVT… which made using it a tad dangerous.
Like you I am interested in the suggestions made and any other information added.
Dai.
Hi All,
Yes, they kept me in… after being told to come in I had a quick shower and my temperature went up to 38.0 by the time the nurse took my temperature it was 39.0 – examined by a Doctor who admitted me.
The Doctor came to see me in the room and said that my Neutrofils were fine, as were my white cells, so he wasn't inclined to give me anti-biotics in the first instance but he was going to give me blood – one bag that night, one the next morning and blood was taken for cross-match. No blood that evening but I was given anti-biotics… the duty nurse told me that the Registrar had over-ruled my Doctor.
No blood that night, so 2 bags in the morning… but I did start the anti-biotics.
Come the morning… no blood until after the ward rounds… the ward rounds were done by my Prof. He said my HB was 9.0, so they were holding off on the blood. He then said that if my temperature stayed normal for 24 hours (I had awoken to 37.01) then I could go home… and enjoy my holiday.
At midnight a phlebotomist turned up at my bedside to take blood. I said, between big yawns, (while she made two unsuccessful attempts at finding a productive vein) that it was a funny time to be taking blood and she said they needed it for a cross-match for a blood-transfusion. (the second cross-match, as the first had clashed with previous records of blood given last year). I said' Whoa! I'm not having a blood transfusion and related the decision made earlier that day.
She went off to check with the main desk and returned with my duty Nurse. My duty Nurse told me that I was having blood in the morning… that the Prof. had based his decision on my first blood results taken on admittance but when he saw the morning blood results (8.3 – that returned while he was on his rounds) he decided on 2 pints of Gold Top blood to boost me for my holidays. I said that was nice of him but I was very unhappy that no one had bothered to tell me!:-S
Anyway, I started my 2 pints @ 3 hours per bag at 11:30 after securing my release immediately after from the visiting Doctor and asked the nurse to check with pharmacy to make sure my anti-biotics were delivered to the ward before I left (Circa 5pm) – the pharmacist popped into my room at 2pm to say they were on the ward… so that was a potentially long wait avoided. I finished my last bag at 5:40pm and was off the ward at 5:55pm… and on my way home.:-D
I feel tired now and aching from a hospital bed that only had the head raiser working. I await the morning for the benefit of the new blood to start working… otherwise it is very nice to be home and free to start packing for my holiday.8-)
Dai.
BTW – After being admitted I then spent another 2 hours in the small (uncomfortable) waiting room, while the ward Sister argued with the records office about my identity – apparently the woman on duty in the records office had me down as David Crowther, with a different address… so it couldn't be me… it was the only Crowther on record (according to her) So I couldn't be admitted as a current patient????
The ward Sister knew this was wrong because I had been admitted to the ward on four occasions, including my SCT, so I was known to three of the staff on duty. I asked what the address given to the David Crowther and the Sister (as frustrated as me) told me… it was my address from when I taught in Nottingham… in 1987 – and seen at the Queen's Medical Centre in Nottingham… where the central records are kept… for a twisted ankle. It was my only visit to hospital in four years in the area. (I left the area in 88). I gave my name as Dai Crowther but the A&E Nurse changed it to David after remarking on my 'strange' name. Since my initial diagnosis in 2008 I have been registered under my full birth certificate name of Thomas David Crowther. The Sister handed me the phone to exxplain to the records office clerk and I explained. This seemed to placate the records office clerk so I was allowed to be admitted… the Sister was determine to sort the problem out in the morning. My whole stay continued in the same vein. :-0
Kitchens? No… but we had a new boiler the other week and the disruption was irritating (it took 12 hours over one go because the plumbers, very good plumbers, didn't want the disruption to continue into a second day.) That's what I call service.
Its good to see you back on the site and doing your rounds Tom… our very own Doctor Positivity.8-)
Mind you, Tom's a facebook friend and he is very active and enjoying life to the full I can tell you…:-0
Sorry…but no tales out of school from me.;-)
Dai.
I think I'm right in saying that Peter and Slim are both ex-military?
The nearest I got was Lieutenant in the Boys' Brigade… with a 'First Aid Badge'… so I seek professional aid at the first opportunity.
I was trained to do so. 😉
Dai.
Hi All,
Thank you for your support.
The Day-Case Unit is not taking calls and I have found out that it is only open for chemotherapy treatments that are fixed by need… and quite right too.
I have felt better all night and my temperature has been completely normal… until 10am when it jumped to 37.70 and had stayed there since… so I rang the Haematology Ward and was fortunate to be answered by a doctor that I know. She has told me to come in at 2pm for a check-up and bloods (I do feel anaemic) and hopefully they can sort me out with either anti-biotics or blood products… and get me semi-fit for my holiday.8-)
She offered the alternative of coming in early tomorrow to the Day-Case but I'm grabbing hold of the first offer.:-D
Niggles and little dramas… almost guaranteed. 😛
If they don't keep me in I'll report back later – Janet is finding this session very hard to cope with bless her… she is feeling really down, so I'm truly hoping its something to nothing.:-)
Dai.
Hi Pauline,
I appreciate how difficult Monday must have been for you, especially as it came from left field without reason or warning. I don't know your husband so I cannot pass judgement or offer a rationale for his behaviour… but I do know where he is coming from? and I believe I know where he is going.
You want to live each day to the full… to enjoy each others company while you can, he on the other hand seems to be more comfortable with looking at the future with a bleak, almost blinkered view.
My perspective (not necessarily your husbands) is this.
We (MM sufferers) have been told that we have an incurable disease… incurable but treatable. The prognosis is to use a series of treatments, including transplant(s), to knock MM back and give us some breathing spaces and time with a reasonable quality of life. When we relapse we move on to the next treatment and knock it back again. I would love to say at this point that we repeat ad infinitum… but I can't because we can only knock it back so many times because of the limited treatments.
Your husband knows this… of that I am certain. He knows this and although he is in remission, from the main event of the SCT, he knows that when he relapses he will be one step nearer the end of available treatments? and there lies his problem. He cannot see his current remission as a cause for celebration of life because he is looking beyond it… all of the time. He is waiting for the relapse and expects it every day. Anyone who tells him to enjoy life while he can is to him, cruel, callous and uncaring. Why? Because of the negative implications in what is intended as a positive statement.
'Enjoy life while he can'… to him this is a continual affirmation that the time he has is limited and it frightens him to the point where he cannot enjoy life at all. He feels safer expecting the worst because he knows that it is an inevitable truth and everything else is false or forced and he cannot live that way.
Eve said something earlier in the thread that is an absolute truth. When someone is diagnosed with MM their life, as they know it ends… as it does for their wife/husband or partner.
Your whole life has been turned upside down; whatever you had before the diagnosis has been replaced by all things MM. Your daily routines, your social life, etcetera, have been taken away from you by several words issued from a Doctor's mouth.
Your husband's pain is both physical and mental… your pain is both mental and emotional. It is understandable therefore that you want to make the most of all and any time that you still have together… and while it cannot be Christmas every day there is still the opportunity to try and find fulfilment and enjoyment in the simpler side of life… in loving companionship, family and appreciating every positive action and event that crosses your paths.
Your husband needs to accept that this is what you mean and want? for both of you. Perhaps he will… but at the moment I believe he hears 'while he can', he ?sees? his relapse and he tastes fear. Before you ?forget? Monday night I think you need to convince him that your positivity is not denial? only your perspective and your way of coping? and hope that he opens up instead of closing down.
I truly hope that he opens up.
Dai.
Yes here… seemingly every night.
Dai.:-P
