National Amyloidosis Centre Patient Forum
Amyloidosis => General Discussions => Topic started by: JellybabyJan on February 24, 2015, 06:31:41 pm
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Hi
My husband is on his third lot of chemo, (Pomalidamide), and the side effects are really getting him down. He's has hand tremors, dizziness, breathlessness,extremely tired to name a few. He is finding day to day life very challenging. My question is, are there any complimentary therapies that anyone has taken or can recommend to help reduce all of these horrible side effects.
He's 49, diagnosed in April 2013,previously had Velcade, then Revlamid. He has AL Amyloidosis in his Heart, Liver, Kidney, Spleen and Nervous System. He's on PD Dialysis every night. Oh and to top it off he takes 46 tablets a day and 66 on Fridays (steroids)!!!
Thanks
Jan :)
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Hello Jan, Welcome to the forum. I am sorry to hear how your husband is struggling on the treatment. I experienced similar when I was on my second course of chemotherapy. My life practically came to a stand still. I found the steroid component of my treatment caused more problems than it solved. I know that we all react differently and other people I know on steroids are fine.
I don't know of any alternative medication that could help but I have found meditation highly valuable. I have also been helped by the practice of mindfulness. When I was very ill in hospital a couple of years ago, I felt desperate for a nurse or doctor to acknowledge my suffering. I had a compacted bowel and no one was prepared to help me. I texted a Hospice therapist that helped me after my husband died. She came to visit me and offered a guided meditation. It was wonderful to escape my situation for a little while. I'm sure this experience helped me to beg a nurse for help a day later. He tended to me throughout the whole morning in a determined effort to clear my bowel. That meditation was like a seed that had been sown which I started to water and feed so to speak.
I do hope that your husband finds some help. I will be interested in the contributions of others as I am open to all kinds of help.
Best wishes.
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Hi Helen
Thanks for your reply. Glad meditation helped you, not sure my husband would be willing but anything is worth a try in my book!
Jan
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Hi Jan,
Sorry to hear that your husband is suffering from horrible side effects. My husband suffered a range of symptoms associated with amyloid in the nervous system, heart and gut (mainly swollen tongue). Whilst he didn't get well enough to go on chemo I persuaded him to try acupuncture which after some reluctance he did have for about 4 months, most weeks, sometimes twice a week. We felt it helped energy levels and sleeplessness and it may have helped to control leg cramps. I definitely think it helped him to maintain a positive outlook which felt essential. At that point he didn't know it was amyloid. We didn't have a clue what was going on. David was even persuaded to try Chinese medicine and in his first consultation the Doctor was alarmed at how weak his heart, kidneys and gut was. He went into hospital soon after and didn't take the foul medicine for more than 5 days so can't really comment on that.
I think reflexology is worth a try just for the blissful relaxation it gives when suffering a horrible illness.
My close friend has recently been diagnosed with breast cancer, and although amyloid isn't cancer, she researched the positive effect of diet choice on the effects of chemotherapy. The Penny Brohn Cancer Care Centre in Bristol gives good advice on holistic care and diet to assist with treatments and could be relevant. I think they have a website.
I hope your husband finds relief and improvement very soon.
Alix
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Hi Jan,
The way that you've described your husband's discomfort at the moment resonated a lot with me. After I’d been diagnosed with AL Amyloidosis, I had my chemo over a few months starting in April 2011. My Amyloidosis affects all the organs that you've mentioned but my nervous system escaped.
Whilst on the chemotherapy, I found that my entire body was aching and I'd lost quite a lot of muscle mass, which meant that my bones were sore when they came in contact with one another. I really couldn't find a respite from this. Then I remembered seeing a leaflet in my haematology clinic about a local charity that provided complimentary therapies for cancer patients (for free). I phoned them and explained that I didn't have cancer per se but was happy to pay for an aromatherapy massage if they could arrange it.
As a fairly average guy, asking about aromatherapy massage didn't sit comfortably with me at first. I was embarrassed about the state of my body, as well as everything else. However, the therapists who free-lanced for the charity (Circle of Comfort) were all used to treating very ill patients and the lady who came to our house (complete with her own table!) to see me was excellent.
I can't tell you just how good that first session felt. After suffering for several weeks, I finally got my first decent night’s sleep and the boost to my morale lasted. I organised a second session about 6 months later and tried a penetrating massage with hot stones. Again, this soothed my aching muscles and left me feeling great. I don't know if there is a similar charity in your area (I'm in Fife) but I'm sure that you'd be able to find a masseuse\r privately.
Outside of that, my only other ‘pamper tip’ would be to get a Turkish hot shave!
I was 47 when diagnosed but have, so far, made very good progress. Along with everyone on this forum, my heart is with your husband, yourself and your family. Good luck!
Mark
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Hi Jan
Sorry to hear your husband is suffering so much with his present treatment. When I had my first chemotherapy regime CTD four years ago, I suffered with very similar symptoms to what your husband is experiencing and I found that reflexology really did help me to deal with the neuropathic pain and also helped to relief some of the most worst side effects from the chemo. I'm on a CVD treatment at present and I am being especially careful with my diet whilst on chemo ie no caffeine, no green tea not a lot of dairy and I am finding that I have few side effects on the velcade at the moment. I hope that the treatment is working and soon your husband will be relieved from the pain he's suffering now.
Take care and good luck
Ellie
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This is an important discussion, as many patients with amyloidosis seek complementary therapies and these can help people to relax, to maintain a positive outlook and to cope with unpleasant symptoms, as you’ve all mentioned here.
But it is really, really important that complementary therapy doesn't cause you to delay seeing your doctors and nurses and discussing your symptoms with them. Delayed diagnosis and treatment of amyloidosis can adversely affect the chances of response to treatment.
(Although Ali, I understand from things you’ve said in your other posts, that it doesn’t sound like there’s anything you could have done differently that would have changed David’s outcome.)
Also, it's important to tell your local doctors or the NAC doctors and nurses about your symptoms during chemotherapy so they can make appropriate decisions about your ongoing care.
Some types of complementary therapy, such as Chinese medicines, may even contain actively harmful ingredients. Some should be avoided by patients taking chemotherapy, for example green tea may reduce the effectiveness of velcade and should be avoided by patients on this drug.
So if you’re considering trying any type of complementary therapy, please discuss it FIRST with your conventional doctors.
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Hi all
Thanks for your replys. I think that massages/reflexology would help him but it's getting him there! I will try though. At present he's suffering sleep apnea which is making our lives hell. He has a very large neck due to all the steroids he takes, Dexamethasone, Hydrocortisone and Fludrocortisone so can't really change that. He gasps for air, stops breathing, can't catch his breath all night. It is awful to listen to so we both suffer! We're having to watch his fluid intake and try sleeping at a 30 degree angle before seeing a sleep therapist.
Having amy in his autonomic nervous system causes so many problems. It controls your blood pressure, regulates your heart and other involuntary functions. This is completely damaged and dealing with this is so challenging. We having to use a wheelchair now as he can't walk far without getting totally exhausted. I try to stay positive but for 2 yrs it's been nothing but bad news afer bad news. When will we get a break?
Jan
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Agh this disease is just rotten. Whilst during chemo, my water retention went awful - I couldn't help thinking it was made worse by the steroids too. I was offered reflexology and I do know each time I had a session I was desperate for the loo after! The reflexologist explained this happened on most occasions.
Since my chemo and SCT, I was sent to the excellent Macmillan centre close by. They are absolute stars in the help they are giving me along with many other things, they offered me reflexology again - this time it was more my state of mind that needed sorting, however, I went along and have just never regretted that at all. Jackie my reflexologist, a trained specialist Nurse for 40 years, went into the Macmillan side and alternative therapies. For that hour I can forget Amyloid and all the other bad things that have happened in my life at the same time and its just me and Jackie and I do believe its offered me a prop along the way.
I think anything alternative, alongside your treatment regime, has to be good as long as it doesn't interfere with your main treatment.
Jan, I know you wouldn't have it any other way looking after your husband but I think you too would also benefit from something along these lines. Please do ask Macmillan as they do cover carers too as your role is just as important. Big hugs to you as yes, two years is awful and you do both need a break.
Lesley
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Hi Lesley,
It was interesting to read your complimentary therapy post, I found reflexology a help after treatment, at the moment I am on the third dose of CVD and I had bad fluid retention with my last treatment but upto now the swelling is not too bad, I'm hoping will stay that way for the whole of the duration of the treatment, I agree amyloidosis is a horrible illness but I just keep thinking that even though the treatment is harsh, hopefully in most cases its is controlled and managed, I think we all have to be aware of our symptoms and in my own experience to tell the consultants all the symotoms we suffer so they can treat us asap. How long is it since your treatment and how are you feeling now ?
Regards ellie
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Hi Ellie
I started chemo Feb 2013 - this finished beginning of June 2013. I have to say I was rather surprised at the after effects when the treatment stopped. It took a good while for my body to settle down. I then had my SCT in November 2013. Unfortunately I was in hospital for 3 months so came out 14th Feb 2014.
Because of the complications I had, its taken me a lot longer to get over SCT.
When I first went to the Dr, I had slight weakness in the legs and then Amy was diagnosed. I thought after the regime of chemo/SCT I would return to the normal Lesley and of course this hasn't been the case for me.
I do get frustrated at the limitations my body dictates but I do hold down a full time job so maybe if I could do as my body asked I may not feel quite as exhausted! I also worked all the way through chemo but not quite sure how!
I have to say the support from the NHS and all the medical team has been absolutely brilliant.
Lesley
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Hi Lesley,
Thanks for your reply, you really have been through the mil chemo the a SCT, and after all that managing to work full time too you are unbelievable, as you said maybe we don't listen enough to our own bodies as I don't work anymore as my job was physical but do keep myself busy in other ways, I hope you go from strength to strength, you deserve to most definitely. Where do you live and which hospital where you treated at, I have gained a lot of confidence from your posts, thank you.
Elliex
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Hi Ellie - that's kind of you thank you and I am glad you have gained strength from me too.
Out of all the awful things that have happened to me I know a lot of (Amy free) people have changed their outlook on life. The worst thing to happen in all honesty was losing my husband so soon after I was diagnosed.
I had the good fortune to have private medical cover at first and met a gentleman called Professor Yin. Lovely man - so strict, I felt like a school girl when in front of him but boy did he fight my corner with the drugs he wanted me on! He then wanted me to go under the care of Dr Simon Gibbs (this was then on the NHS) - Simon had worked at the NAC and then moved to the MRI in Manchester, which is where I had my SCT. Simon left to go back to Australia I think in May of last year. Such a big loss to the MRI - and such a massive gain for Australia. However I have a lovely Dr Rocci now at the MRI and he is so lovely as is Pippa and Amy the care nurses. I also have Macmillan support and my GP is amazing. I owe my life to my GP. Please, if you ever feel you need to ask me anything, do so. Cant give you medical answers of course but can lend an ear when Amy bites - I find she has given me tourettes!
Lesley
x
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Hi Lesley,
Thanks for all the support, yes it does seem you have been in very good hands, my GP too is very good too we are very fortunate and I'm under a very good haematologist at arrowe park hospital on the Wirral, I also live in Cheshire, and was diagnosed by a private nephrologist who has since gone to Australia, I think we both share the fact we are amylodosis sufferers but we have a lot of similarities too I'm just praying at the moment that this treatment will give me a good clonal response unfortunately my father passed away when I had just had to come off my last treatment due to pnuemonia and that was hard to bear at such a difficult time in my own life so I can understand how hard it must of been for you to regain ur strength after the loss of your husband to fight the Amyloidosis too but thank God you have managed it and hope you can carry on the best you can, my husband always tells me we have to make the most of a bad thing in our lives I think he's right.
Take care ellie
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Thanks Leslie,
I am due to speak to a counsellor tomorrow, hope this helps, never thought I would need this service but I'm really finding it hard to cope with the stress, worry etc. Since my last post Mike has now stopped the Pomalidomide as he wasn't tolerating it. It made him so ill, then he got a chest infection so Dr Wechelekar advised him to have a 2 week break. If he decides not to start it again there is only one option for him which is Cyclophosomide, which only has a 20% chance of working. So yet again another blow. He has just started to feel a bit better after 2 weeks of hell. Didn't really get off the settee, had chronic diahorreah, was breathless and was probably at his lowest.
We're hoping for a week or so of getting back to normal and dings things together before we decide what is the next step.
Thanks for listening.
Jan x
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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
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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
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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
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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
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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
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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
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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
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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
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Sorry that last post should have said Jan - sorry Ellie - one easy lesson on how to confuse people!x
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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
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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
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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
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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
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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
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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
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Thank you Lesley for those words ... you are a star. In a strange way bereavement and illness gives you strengths you never knew existed. Ali xx
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Hi alyson and Lesley,
I agree with your last posts so much, in all the negative there always seems to be positive, and alyson feel free to speak on the forum, you need as much support as what all we do , and I am a firm believer live for the moment !!! Very true.
Also Lesley, I understand what you mean when people fear for you, I often see it in people's faces and I'm the one laughing telling them I'm fighting the Amy it won't beat me and I'm not scared in any way, on the second cycle of velcade now and have few side effects but tolerating it much better than thalidomide, so glad think the Less side effects helps you to cope better too. My haematologist told me last week, we are making this treatment more tolerable which is another positive for fellow sufferers to to hear.
Take care ellie x
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Hi Lesley
I so wish he didn't have it in his heart then a SCT would be given. He's been told that his heart would never cope with it and it's far to risky. When he has his echo every 6 months there was either no change or only a slight deterioration This is good news!
I've not heard of Proffesor Yin, where are you treated? He sounds very good. Mike's at The Royal Free under the excellent Dr Wechelekar.
Hi Ali
Thanks for re-posting your story. I cried when I read it because I can see myself so much in what you say. You are a very brave person, as are all Amy sufferers! Yes I'm caring for Mike 24/7 and it makes me happy doing this. I would do it for 20 yrs if I had to just so he can still be with us. It's great to talk to people who know what you're going through. I've been a lot better this week. Feeling more positive about things and planning our summer cruise.
So far so good with the Pomalidomide. Mike seems to be tolerating it better this time around. Worse thing is when he crashes down after the steroids. They are a real bitch!!!
Jan
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Good Morning Ali, Ellie and Jan
I think its fantastic that we can all be truthful on here. You need to speak the truth to allow people to help.
Jan - I was directed to Professor Yin, who now works in the private sector. I do believe he is in his early 70's (but certainly doesn't look it). He looked after me with the very first diagnosis/stages of treatment - I think he just works now at the Alex, Cheadle Hulme. He knew, and I think I might be right in saying, worked with, the wonderful Dr Gibbs who has since left us to go back to Australia.
I can tell you that my friend in Texas, 35 years ago was put in a hospice to die. Those are his words. 35 years on, yes, he is still fighting Amy, he has had a heart attack amongst other things too and she is now in his skin.
If anyone had ever asked me at the start if I were brave I think everyone who knew me would have laughed hysterically after I had passed out at the mere thought of a blood test. My Dr said I had a long uphill road to travel, and that was when John was still with me.
Looking back its been horrendous but out of all the bizarre moments, there have been some funny moments too.
Just wanted to reply and say thank you for these posts - they do make me feel part of something - even though it is 'Amy the bitch' who brought us together
Lesley
x
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Happy Friday evening Jan, Lesley and Ellie and any other member reading! It is lovely to chat here and be part of your lives. For me, finding out about this amy shortly before losing David left me feeling that I need to still be involved in some way so this forum is so comforting. I suppose I feel upset that I didn't have time to help David cope with this illness and get the chance to walk thru those NAC doors that appear on this forum! I am hoping to walk thru them by attending the open day in November. Yesterday was hard as I had three phone calls in the space of 10 minutes, the first from a difficult work contact, the second about a life insurance I'm setting up and the last from my GP finally giving me the formal diagnosis of AL amyloid which I have been waiting to hear since last Oct. I needed to know it wasn't hereditary, so that is a relief. I was exhausted after those 10 minutes. My friend took me out for lunch by the sea and restored my spirits. Friendship is so important.
How fantastic you are planning a summer cruise Jan. We are about to go away for a couple of weeks to see friends and I shall be glad to get away for a bit.
I hope you all have a lovely Easter and I hope you continue to feel OK Jan. Eat chocolate....its that time of the year!,
love Ali x
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Hi Ali
Sorry for the late reply we've been away to the Isle of Wight for a break. We had a good few days but then Mike started to feel very unwell with a sore throat. It got worse so I took him to the drs. Turns out he's got tonsillitis and is now on anti-biotics again!! He's really taking a kicking this time.
Glad you got a diagnosis, shame it took so long! Our local hospice who are helping Mike said they can give me counselling so I'm happier now.
I gave up chocolate for lent (41 days!!!!) and plan to gorge on it tonight lol!! Enjoy your break away, we all do need it
Jan x