[strictlymyelomaParticipant]

Hello Eve,
I don't write on here very often but can really relate to your position.
Like Susannah, I lost my husband, Norman, in February.
He would not accept that he was dying, well not to me anyway, and so I continued to fight his battles for him. In fact 8 days before he passed away he told the staff at Royal Marsden "holiday" – he couldn't speak well at that point but wanted to book another holiday. That had always helped him.
Looking back I think the top of my head knew he was going to go soon, but the rest of my head and heart couldn't truly accept it. In fact, I didn't know what I was supposed to accept – I didnt know what death was. I had lost grandparents but no-one closer and had no experience of losing a loved one.
All I can suggest is that even if you do not say anything to eachother you have plenty of hugs. The physical contact will mean a thousand words anyway. It is this I miss the most after the finality and reality of death.
Just make the most of every minute.
Jackie x

[strictlymyelomaParticipant]

Thank you Dai for your lovely reply. I will try to follow your very good advice.
I am very sorry to hear that you are near the end of your treatment options but it is brilliant that you have such important conversations with your wife. Norman just wouldn't talk about his illness. I think with hindsight he was in denial and also very scared.
Best Wishes,
Jackie

[strictlymyelomaParticipant]

The abseil idea is good. My daughter did it last year and Norman insisted on us flying up to Edinburgh to support her. It was the start of his good time last year. She raised over £1,000 and I think photos are on the website.
The worst bit is walking along the bridge she said.
The hotel (Hawes Inn) at the bridge was a lovely place to stay. Have got good memories even though the weather was not brilliant.

x

[strictlymyelomaParticipant]

Hi Anne,

It seems incredible that three of us have lost our husbands on consecutive days..this disease is much more common that I ever realised.
I too feel guilty when I have times where I get involved in a TV programme (or something) and forget Norman has gone. Then the next day I get overwhelmed by grief and can't believe I will ever feel any better. It is as though there are two of me!
Jobs around the house are also bothering me. Yesterday I found a vent from the extractor fan on the ground outside…what on earth do I do to put it back? To be honest Norman has not been able to do much around the house for the past couple of years but I really miss asking his advice (even if I did often ignore it!).
This rollercoaster is very difficult to bear isn't it?

Jackie xx

[strictlymyelomaParticipant]

Norman would not speak about it – I wish he had.
I just have to believe that he has gone somewhere where he will be waiting for me when my time has come.
The alternative is even more difficult to bear and I am unable to cope as it is.
Jackie

[strictlymyelomaParticipant]

Hello Sue,

My situation is so similar to yours. My husband, Norman, passed away on 22nd Feb and the funeral was this Wednesday, 6th March.
My daughter suggested I went on this forum to try to get some support.
Norman did contribute to this website a couple of years ago when he was diagnosed but I think he went into denial.
He did pass away in hospital but I could not have coped at home (don't know how you managed it) but in the end it was very quick – less than a week.
Although I am relieved he is no longer in pain and the stress of caring is over, I feel worse than I ever did and would do anything to have him back.

Jackie xx

[strictlymyelomaParticipant]

Good Morning Eliz
unfortunately thise particular words dont appear on my discussion board
maybe ineed to re-register?
norman

[strictlymyelomaParticipant]

hallo web team
may i suggest that you contact chrissie to explain the process for starting a new discussion on the myeloma site
ta

[strictlymyelomaParticipant]

hello all
thankyou all for the comments and info, bridget it looks like i would be going to UCL hospital also so info was helpfull if and when i decide to go down the SCT route
the advise from my consultant is that i will have to agree SCT or i will not be able to have it later?? if i stay with the revlimid, this i dont understand!!!have made arrangements to discuss with my specialist nurse tomorrow after i have seen the consultant
reckon i will have to go onto valcade as latest results of PP are only a difference of .3 from last so am at 18.6
Debs im sorry u appear to be having the same problem
I was diagnosed june of last year i was put on the non evasive treatment apparently they thought i couldnt take the invasive because of the more severe side effect now my consultant appears to have changed his mind so obviously i look better although i dont feel any different personaly take care will come back on when haven seen consultant and nurse
norman

[strictlymyelomaParticipant]

good morning Kaychappers
sorry to hear about your painfull BMB
i have had three to date the first was very very painfull
after speaking to a friend who is a nurse she suggested asking for gas and air (although im not pregnant) which i duly did, luckily my consultant agreed the subsquent BMB's were completly painfree apart from feeling pressure when carried out but you must give pre warning this is what you want, the only effect is the feeling of being drunk
now that i can put up with
hope this helps
norman

[strictlymyelomaParticipant]

RE: Revlimid Maintenance Therapy
22-12-2010 at 9:21 PM
hello Amelie
since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of Thalidamild as a first line of attack against MM no serious side effects too note, apart from an occational red face and nose,i cannot comment on Thalidamide as i havn,t had it.

[strictlymyelomaParticipant]

hello min
since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of Thalidamild as a first line of attack against MM no serious side effects too note, apart from an occational red face and nose,i cannot comment on Thalidamide as i havn,t had it.

[strictlymyelomaParticipant]

hello Bridget
hope the rad goes well
i have been on revlomid from diagnosis last july as a trial CLD with no side effects to date apart from a red nose/face for the first few days and at this time of the year guess what i am called by Jackie my wife,
last week i was advised by my consultant that he thinks i will be offered my first SCT in a couple of months time, does anybody have any ideas re:Pro's & Con's, serious side effects, etc; and how long on average might the whole proceedure take as we were thinking of booking a long weekend UK Ballroom dance with Anton & Erin or a 10 day cruise both during June/July this year.
Norman

[strictlymyelomaParticipant]

hallo gaye
what seems many months ago i had my first BMB
and it hurt
on the insistance of myself and my dear wife i were given gas and air at the time of the second and i didnt feel a thing apart from a mild pressure
and the same for the third the advantage is it brings back good old memories of being slghtly tippsy but with a quick recovery and no side effects.
norman

[strictlymyelomaParticipant]

hello susan
diagnosed mm just over a month and half ago
sharp pin point pain in front right chest rib area felt this was first indication something wrong this then overtime radiated across the chest area to the left, pain killers failed to completely remove but subdued it a bit
after ist dose of chemo and steroid tablets (first month)pain returned in full on right causing sharp shooting pains (spasm)taking breath away and stopping me from driving as no indication as and when this spasm would hit me
have now just finished first part of chemo and steroid (2nd month) same thing occured i couldnt decide if the pain was associated with possible indgestion, constipation bone or nerve pain
have taken laxatives, anti acids, also get a build up of phlegm on chest taking over counter remedy for this (cavonia) which also helps sometimes when phlegm broken up a bit and couphed
basicaly hitting it with anything i can think of because it stops me from sleeping properly also spasms when lying down, getting up from bed and chair
dont know if this has helped in any way but u are not on your own with this problem mm generaly causes a lot of pain
u have my deepest sympathy i have also tryed to vary my parcetomol painkilers with soluable sophodine 2 tabs in water every 4 hrs it seems to help but everyone is different
i hope other members of the forum will give their views on the subject so as to give u a wider view of the possibilities
norman

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