Complementary Therapy

[Lesley]

Morning Jan

I do sometimes think a carers role is harder than the patients. You can only but  look on and help the best you can and that is very distressing for you. Do think about yourself Jan - I know all your time and attention will be with Mike and carers don't always look after themselves as best they should. Give yourself some you time even if its only half an hour you time. I had all those symptoms that Mike had - I used to park up at work and the few yards I had to walk to the front door all but saw me passed out in reception. I was on Cyclophosomide/Dex and Velcade.
Always here to listen Jan - so please don't hesitate - I think we would all agree that's what is great about this forum.
Hugs to you both
x

[alisonjayne]

Jan, My husband  had amyloid in the nervous, digestive system and heart and I cared for him for a year. Whilst the ending to our story is not helpful to you, as late diagnosis and his advanced amyloid and  development of pneumonia meant he wasn't well enough for chemo. But I wanted to sympathise with your own needs as a carer of your husband as it's the hardest thing to watch someone you love suffer in this way. I hope his treatment brings a change for the good.  It was the most stressful period that I have ever experienced in my life, helping David to keep positive, particularly round the children. Counselling is a really good idea - I am about to start some. Up to now I have leaned heavily on friends and family but talking to a trained stranger is probably better as they are not affected emotionally  by the situation. Finding support for yourself to relieve the stress is so important. Good luck Jan.
Alix

[JellybabyJan]

HI Lesley

I agree this forum is great. I read the comments out to Mike and he is so overwhelmed by everyone's kind words and support. Counselling is becoming a bit of a nightmare. I had an assessment with a company that my Dr arranged. This lasted half an hr over the phone and I was a complete wreck by the end. She said she I was a good case for counselling and would discuss my case with her team and get back to me. She did 3 days later only to tell me that Macmillan would be a better choice for me. I can see this but my local hospital (Queens in Romford) only does it for their patients. I will have to see the Macmillan people at the Royal Free. I know from previous that this could be weeks and it will never be when we have a clinic appointment. I have decided to speak to our local hospice that Mike is already under. I thought this would be a quick process but it seems to be dragging on. I feel I really need help with my thoughts and  feelings. I agree Alix that talking to your nearest and dearest is hard because they are involved too. So sorry to hear about your husband David. How are you now? I think about what might happen every day. I lay awake at night thinking how will I cope. I'm constantly thinking about him and how he's feeling and how it's so unfair. He's only 49!

Mike has decided to give Pomalidomide another go, but is still very anxious and scared because of how it will make him feel. He was only on it for 2 weeks so it's probably made no impact on his light chains. Hopefully we'll get some results on Thursday.

Jan

[Lesley]

Hi Jan

I do hope you can get sorted as its so valuable. I know this may sound a strange treatment, and when I was offered it, I really just thought I was going along with it all.... reflexology. It just gave me an hour, me and Jackie time, for me to vent - more often than not I had Tourette's, but the lovely Jackie just took it all in her stride. They offered this to me pre Counselling (though I have had counselling upto and including my STC) and I must say its been invaluable to me.

I'm not sure how I can write the next bit but I'm going to try.

When I was first diagnosed, I refused everything. No way was anyone going to do biopsies on me/scans and all sorts of stuff - crikey I hadn't had a blood test for 22 years! I limped through all the tests with John by my side every single step of the way. If anyone had even ventured to tell me that John may not be by my side forever I would have said well no way am I going to carry on. Indeed my inner most thoughts were I wasn't going to have my STC. Just do my bit for my family and let Amyloid take over the rest. Somewhere, somehow, you gain a strength you just don't know you ever have. I've reached rock bottom at times and barely been able to get out of bed, but I got out of bed for my lads. Ok, I'm on anti depressants and they are helping.

The reason I'm telling you my inner most thoughts is when life strikes you with such terrible blows, you do gain a strength that you never knew you had. I've always believed in being open and honest with everyone in all aspects of my life and I hope by telling you my inner most thoughts, this gives you strength to carry on and fight each day with and for Mike. Whatever happens you can tell us, we understand and wont judge you. I recently told someone who has Amy who is a rock to everyone else, that I was allowing him to vent to me - this poor man had no outlet, no one could see that he was crying out for help.

I hope my 'thoughts' have helped you and not depressed you. Its quite hard to press send on this as you are never quite sure how people will receive so I shall do this quickly now before I backtrack!

Hugs
x

[Elliei21@me.com]

Hi Lesley,
I was quite moved by your supportive innermost thoughtful post to jan, I actually got a lot of Stength through that message because as you say you just want to give up with treatment, but of course you do it for the children you strive and fight to carry on and beat it and I don't know myself sometimes where I find the strength and I have always had to be the rock in all our family, when dad was given the diagnosis at the NAC that the amyloidoosis was everywhere in his body and he would not stand any treatment, the family all fell to pieces and two weeks after that I was given the diagnosis and was at the NAC and I just gathered this strength to support mum my husband the children whilst I was embarking on chemotherapy and seeing my father dying as they lived with us, and I ended up doing the eulogy at dads funeral a week after coming out of hospital with pneumonia, to this day I still don't know how I did it but one thing I always sed that this horrible illness has given me a tower of strength that I didn't know I even had, two years after losing dad I had to take on a huge supportive role to all the family again including my brother who lost his daughter through tragic circumstances my mum ended up on antidepressants for post traumatic stress and I still am there supporting my brother and.my sister in law when it's gets difficult to cope, and one day I ended up asking myself where do I get all this strength from? And I just wanted to scream to let all my inner  feelings out as I just thought I need a a bit of support now too but at the time no one was strong enough to give it to me I was the one keeping the whole family  going I'm so thankful that I found this and was able to do it and we have kept to normality as much as possible over the last 5 years.

And now as I embark on the second cycle of chemo, friends and family come to visit me and are amazed how much I can do in the house on my own whilst on treatment and I just tell them it's how much you are able to do and how strong psychologically too, a positive mind helps tremendously I feel too.
And please jan, I feel for you completely as 49 is no age, I was diagnosed at 42 and at the beginning often had thoughts like how I am going to get through treatment, and when I caught the pneumonia,
I thought I could not get through that as well as the amyloidosis and the chemo and I'm here still to tell the story, I know with dad that we ended up with private carers as the help just was not quick enough for dad, hope this message has helped you in some way and feel this forum offers us the best support possible.
Elliex

[JellybabyJan]

Hi Lesley

I know what you mean about other peoples reaction to what you write, but so far I've only had great supportive replies, your included!!Your message has helped me a lot. It's made me realise that until 'that day' comes I won't know what strength I'll have and how I will be able to deal with it. We've had so many blows lately that I find it very hard to be positive. I just keep thinking about the future on my own. I'm hopefully now going to see a counsellor, who will hopefully help me change my state of mind. I've never been in this terrible situation before so never had to deal with all the emotional side it brings. As my children are older (23,18) I feel that I need them not they need me. This is probably wrong I know.

Hi Ellie

You really have had a terrible time! I don't know how you coped, but as you say you gained the strength from somewhere! I know it's awful to loose your Dad but because it's my husband and I've been with him for 32 years I cannot imagine my life without him, and I don't want to. Can you imagine loosing your husband? This goes through my mind 24/7 and I can't get past that.

On a happier note we got some light chain results yesterday. They have come down from 263-195 after only two weeks on Pomalidomide. That cheered us up no end!! Mike's now ready to give it another go after a two week break. Let's hope they continue to come down.

Thanks for listening

Jan

[Elliei21@me.com]

Hi jan
I'm so pleased to hear the light chains are decreasing, it's such a positive feeling when you get those results and gives you lots of hopes, I wish your husband everygood wish to tolerate the next treatment and have a further decrease in light chains. You have to keep positive and not to think of losing your husband, unfortunately we get worse before we get better most of the times, then we look back and say how did we survive the gruesome treatment, but somehow the majority of us do. My children are 26 and the twins are 22 and they are my tower of strength and keep me laughing when I'm having a bad day, thank god for social media and mobiles these days as they all live away from home but they always still manage to cheer me up. Keep positive and strong at all times. I was told we have youth on our side so it's nice to be considered young.
Good luck with the next treatment
Elliex

[Lesley]

HI Ellie

I didn't want to post something yesterday without speaking to the person I am about to tell you about. He's okay'd me to tell you his story.

He doesn't live in this country, indeed lives in Texas, isn't a member of this forum but nonetheless I wished to ask his authorisation.

He was diagnosed with Amyloid 35 years ago. He was given maximum 9 months to live. Amyloid all those years ago was virtually unheard of. 35 years on, he is still with us. He hasn't had an SCT and indeed think he is now too poorly to have one. But he has fought Amy for all this time with chemo where necessary.  He admits his body moans, grunts and groans at him and he does have flare ups.  He is an absolute Amy veteran with nothing but positive postings to all Amy people. We have developed a very close bond and we call our friendship 'hands across the water' as indeed we both help each other in our own special ways.

I wanted to tell you this story Ellie to hopefully give you hope. Of course you wont get out of your mind what is going through it, its so much harder for people 'on the other side' watching in. Please go to your counselling with an open mind - you will be surprised at how much it does help you and if you need a further prop with Anti d's then go for it. This life is one shot, if you need a prop, who cares what makes it a better one for you.

I visited Macmillan this week and they had something for carers - it was a six week course - is there anything like this where you live?

I was with John for 40 years and I could never have imagined my life without him, Amyloid or not! I too, like you, fear my lads leaving home - they are the only things that make me get out of bed in a morning.

Hugs
x

[Lesley]

Sorry that last post should have said Jan - sorry Ellie - one easy lesson on how to confuse people!x

[JellybabyJan]

That is a fascinating story Lesley. I often hear this about people who have survived Amy for years and that's brilliant. I feel that Mike is one of the unfortunate ones because he has it in so many organs and quite badly.  I've noticed that if you don't have it in your heart you have a better survival rate.  Mike has stage 3 cardiac amyloidosis,  has renal failure and is on Dialysis. I'm still trying to contact a counsellor.  My local macmillan won't treat me because Mike is seen at the Royal Free.  Getting a bit frustrated now,  just want to feel better myself now. 
Mike has started back on pomalidomide as of today.  Hopefully he'll do well on it. My daughter still lives with us but my son is in Bristol. I agree though,  don't know what I'd do without them!

Jan x

[Lesley]

Hi Jan ( got it right this time - but hello Ellie too!)
I've just taken time out to know my amy hero. Amy is pretty much everywhere but I shall ask him exactly where. He did have a heart attack a few years ago. I know he won't mind me asking him.
Sometimes I get frustrated as this kind man who is so giving to everyone else needed a bit of support himself and wow what a life he's lived. He's fascinating. Amy aside! And she's ridden rough shod for all those years with him! ( biatch!!!)

Oh poo re Macmillan - could yr Dr not refer u?  I'm going to ask some questions for u next week when I'm there.

could  I suggest if you can't get a counsellor for u to go to hypnotherapy. A fully qualified hypnotherapist is worth their weight in gold. I had had hypnotherapy years prior to sct and I asked my counsellor who was at the mri when I had my sct and I was so lucky she did that too. It's amazing - don't be fooled you couldn't ' go under' it's an amazing relaxation technique!

Keep posting jan. We're all rooting for you and mike
X

[JellybabyJan]

Hi Lesley

We only know one other person with Amy and he lives in Malta. We met him and his wife in the Oncology dept and have become friends. He doesn't have it as bad as Mike but it's nice to compare!

Re my counselling, it was my Dr that first referred me. It was them that said I would be better off with a Macmillan counsellor. Still waiting. I'll give anything a go. Mike is going for some complimentary therapy soon so I'll ask there as well.

You are a wealth of knowledge!

Jan x

[Lesley]

Hi Jan

I'm glad Mike is going for complimentary therapy - here's to our fingers crossed you can get something too. These 'workshops' my local Macmillan do seem an excellent idea. Just wish I could get to them but I need to work even though the body says no!!!

I was just reading Mike's symptoms of Amy - its a text book of what I have, however, I had touch in heart and rather than in my nervous system she is also in my bones and spine (she being 'Amy the bitch!). However, I don't think she must be too happy in my heart (she much prefers the other organs!) that's why they went ahead with the SCT, however, I know Professor Yin wanted me to have chemo first and I think (Miriam please correct me if I'm wrong here) I had to have chemo to give me a better chance as the mortality rate was higher if 'she' were in the heart. Thalidomide was the recommended course at the time and the insurance company were insistent that I had that course of treatment but Professor Yin wanted me on Velcade from the off - he told the insurance company I was his patient and he were the expert and if anything happened to me, he would sue them and win! Within 24 hours I got Velcade!

Very pooped today but until I have news from PIP I have to carry on flogging this body.

x

[alisonjayne]

Hello Jan, I replied to your post made on the 16th March a week ago and managed to lose it by being logged out!  As you asked, I just wanted to let you know about how I am managing. David died 5 months ago at 59. I am 48 and my girls are 13. It is the situation you never want to experience and it came as a shock as we had no time to prepare. But I have coped, after the initial raw grief I now manage by taking it a day at a time,  focusing on the girls, and trying to take forward the life David and I built together in the way we wanted to live it. It has surprised me - I miss David deeply but it has got easier to deal with.  The strength of members of this forum inspire me in many ways and their strength gives me the strength to focus on positive things. I try and list at least three positive things that have happened each day before I go to bed and they always outweigh the negatives.

I can really appreciate that it is hard not to think what might happen in the future. I did it myself, a lot,  last year. I always say to my children when they worry how some event is going to go, that it will never be as bad as you expect. Well losing someone you love is dreadful but gradually you learn to cope and it's OK. There is a very significant chance that Mike will work his way thru this and be able to live as normal a life as possible. Whatever lies in your future you will cope because you have been coping with caring for your husband already. I have read a couple of good books on mindfulness that have helped me work at living in the moment. It is a hard thing to do but it definitely helps.

If you would ever like to chat, please get in touch using my email on my contact details.  I would be  happy to chat via email or phone. I  often feel a bit awkward about writing about my personal experience on the forum as I lost my husband to this disease and I worry about how that will make amy patients feel. But I hope I can offer some sort of support.   Ali

[Lesley]

Hi Alison

Thank you - your story also gives me inspiration.
It is true that somehow, somewhere you gain a strength. I really don't know how and if I look back on my last two years I'm amazed at myself to be perfectly honest! Mind, some may not think that if they could see me at my lowest!
Just wanted to say thank you for posting.
This may sound weird and I can only say it as I feel, but I almost don't feel scared of Amy anymore. I think maybe people looking on at me/my life may feel more scared for me if that makes any sense at all.
I will stop now before I appear to be talking utter rubbish!

But thank you
Lesley
x