The English language is a mysterious thing, full of strange and sometimes contradictory expressions. One example is of course the title of this post. You can be "one tough cookie" a phrase that on occasion could have been applied to me. Generally I have been a tough cookie when it has come to Mike's illness, but this last week has stretched me to the limit, and this cookie crumbled big time on Tuesday.
It was then that the postponement of Velcade was mentioned, originally for a week to give him a break. I felt as though the house of cards we'd been building had fallen on my head. The staff in the day ward were wonderful and tried to reassure me that it would all be fine. (I know, it all got worse, but they weren't to know.) Little Miss Hurricane said that although the haematology support group no longer existed, she knew that one particular lady was still helping people over the phone and suggested I might like a call from her. Now those of you who know a little of my past will realise how big a step it was for me to say yes, but I did.
Now I am well aware that I am far from normal and that my reactions to many things in life do not sit well with other people. But for me the telephone call was a complete write off. The lady I spoke to sounded very nice, and I'm sure that in person she is very pleasant, but as her opening gambit was, "both my husband and I have myeloma", it was clear from the start that it wasn't going to help me. You see what I really needed was to talk to someone who was in exactly the same position as me, someone who was a carer and not a sufferer, someone who I could say my biggest fears to without me thinking I should worry about them being ill. Well I listened to her stories of treatments for them both and answered her questions about the Myeloma UK site and their infoguides, and when she had finished she asked if I had any questions. I obviously said no I couldn't think of any. You see it wasn't information I was looking for, but answers to questions we all fear to ask.
Well that's the way the cookie crumbles. I'm a tougher cookie for it, and when all this is over, I'm going to make damn sure there is better support for those carers who need not information but emotional support around here. Not everyone can do it over the telephone.
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Ohhh Lorna........I saw my Mum go through it Thursday with an unusual/horrendous registrar appointment we had ,she usually stays out of appts but as I had met him once!! before I needed her in....
ReplyDeleteShe started seeing a councillor at our gps ,before I started treatment and she gets on well with her and Mum feels it helps a lot.
What about Macmillen nurse? theyre for patient and family mines lovely and ready to support my daughter and family as soon as/or if i were to ask.Shes not all medical stuff and info she just understands
They may also be able to connect you with someone local whos a carer/similar position ?
On a side note Ive asked to see Mark Cooke at QE about me maybe having SCT there instead of Russells hall after my bad appt last week and ? strange protocols here.
Is mike still swollen ? had he taken anything new he could be allergic to? Hope you are both back on track soon ...glad you had a lovely concert ,Im jealous and would love to see Joe Cocker if ever I could hes wonderful.
Can he sleep a bit more upright? if its fluid collection and if it is he should be seeing nephrologist/physician again I think?
take care
Lorna I would be more than happy to chat but I really do think you're right you need someone whose experiencing things from your side. Don't worry about the Primark knickers I've got plenty. x
ReplyDeleteLorna, I am so sorry you have been unable to find a caregiver you can express your fears to about this damn myeloma and Velcade. I keep trying to think if posting to the myeloma listserver here in the US could be of some help. There is a mix of both myeloma patients and caregivers and perhaps a perusal of the posts might give you the name and email address of someone who could talk to you about your fears.
ReplyDeletehttp://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=MYELOMA&A=1
Also, the IMF ( http://myeloma.org/Main.action ) has a toll free number for use outside the US: 1818.487.7455
I hope these might help. I do know how you feel about Velcade because they sent me home yesterday which was my Velcade chemo day because my neuropathy has gotten worse. I have been frantic just imagining my numbers climbing higher and higher. Anyway, I do hope you will look into the above info. Rebecca
Sue: Yes he's still swollen. He did start taking some new meds Tuesday, antifungal thing, Bonefos, along with increased dose of Aciclovir and Augmentin. (Which the doctor we saw Friday prescribed.) They seemed to rule those out immediately.
ReplyDeletePaula: I could do with a day out in Liverpool. Not that I'm saying you should...... well you know what I mean. ;D x
Lorna,
ReplyDeleteWell, I am a caregiver who has been doing this for 3+ years and you know from my blog that I even have
a very similar backround as you. I would love to chat and help in any way. Give me a shout at my
e-mail address which is tdos59@optonline.net
Not sure if this was already mentioned by you or on comments but have they thought that he may be allergic to the Velcade? Not sure how they ruled out those other meds. Augmentin for one being an antibiotic(and having penicillin in it) could certainly be a culprit. I know my kid can't take it. Anyhoo, give me a holler girl.
Denise
Lorna - I think we can safely say I don't need to do ... you know... so you can. You can visit anytime! And I do mean that I don't say stuff that that if I dont't! x
ReplyDeleteOh Lorna - I missed all this and I feel so guilty! You could have called ME. I will find a way to send you my number - um - I don't think I have your email address? But I might do it via Paula if not.
ReplyDelete