Dad recently diagnosed - waiting and anxious

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Sarah Reakes
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Re: Dad recently diagnosed - waiting and anxious

Post by Sarah Reakes » 29 Mar 2012 11:24

Hi Nyanko,

I have been reading your postings over the past couple of weeks and offer my sympathies to you and your parents for what you're going through at present. Chris, Jayne and Janet have offered you some very sensible words of advice but nonetheless I appreciate when you're all still coming to terms with the diagnosis and all the facts and information that has been given, the whole process can seem overwhelming.

I thankfully have not got an aggressive form of MDS and am on a 'wait and watch' regime at present (quarterly blood tests) but nonetheless when I received the diagnosis last year it was a great shock and I too experienced a lack of sympathy and empathy by the medical professionals to the extent that I had been told that I may only have months/years to live when they hadn't had all the results back yet (the cytogenetic test was outstanding which determined which variant of MDS I had) and you can imagine the affect it had on me emotionally and of course my family - I was left waiting for three weeks before I received the final diagnosis which was absolute agony. It resulted in me complaining to the hospital during this time and since then my Haematologist has if anything played my condition down, and my confidence has been restored as there is the essential word 'hope' very much in existence.

I really cannot understand what can be achieved when medical professionals deliver such negative prognosis/opinion at a time when they truly don't know what the outcome will be and it can only deflate a patient totally and is in my opinion cruel.

The reason I'm posting is that we have a dear friend called Gonny who is now 85 and was diagnosed back in 1996 with Waldenstrom macroglobulinaemia which is a very rare type of non-Hodgkin Lymphoma. The Consultant told her at the outset that she had cancer and that it involved chemotherapy, blood and plasma transfusions but he did not give a prognosis. Her son-in-law is a Doctor and he admitted to Gonny only a few weeks ago that when she first had the condition he thought she would only have about three years. 15 years on and she is still amazing. Her treatments have continued and with new drugs coming on stream it has kept her going. She has regular blood tests and four-weekly blood/plasma transfusions but she leads a perfectly normal life. She is a widow and has been for 25 years and lives on her own, and we met her for lunch on Tuesday and we could not get over how well she looked. She still drives and still supports her very busy daughter who is a Consultant ENT specialist with her large family when she can. She is however, a fighter, and has a strong spirit, and I think this is a key factor that as a patient you need. Your Dad needs to have his faith restored that this does not have to mark the end, but purely the beginning of a different chapter in his life. I think it is very wrong indeed for Specialists/Doctors to take away that important component 'hope' from someone's life. None of us know when our health may change and there are thousands of people who deal with health problems every day but it really is a case of coming to terms with it and trying to still lead as normal a life as possible around your medical condition.

I really sympathise with the fact that your Dad is suffering with depression as I know first hand how difficult this is. I think the support groups that are in place that Jayne referred to may well help because one of the most overwhelming feelings one has when your diagnosed is of shock, isolation and feeling alone even though you have family all around you. It really is case of seeking support from those who 'know' what it feels like and is going through something similar. I think it gives the patient the support they need and removes that very negative feeling of hopelessness.

It really is early days for your Dad and the fact that you haven't had a full diagnosis also doesn't help. And of course to be then thrust into drug treatment almost straight away must seem so frightening to your Dad and his family. What I would say though, is if you and your parents feel that you're not receiving the right level of emotional support from the experts then you should tell them so. I think because Doctors are dealing with it on a daily basis they become rather blasé about it and they really need to be pulled up on it, and reminded of the fact of how it must feel when you're on the receiving end of such news. They also seem to be very ageist which really is unforgivable because life is life whatever your age and is very precious. I really cannot see what benefit can be derived by your Dr Pessimist being so brutally frank when from so many experiences I have heard, patients have often lived far longer than they were told and it seems cruel and unnecessary to almost give a time limit on life, when clearly they don't actually know. When I went to the London Symposium last September I met an elderly gentleman there who had had the condition for 25 years!

Anyway, I just thought I would share this with you and hope that it may give you some reassurance. It is inevitable that when there is the initial diagnosis we are all hungry for information and we can frighten ourselves silly when googling all the information there is on the internet - that in itself can be so negative and damaging. I know, I did it.

I have to confess that I don't tend to research any more not because I'm in denial but I just want to get on with my life as normally as I can with my condition.

My very best wishes to you, your Dad and your Mum.

Regards

Sarah (Reakes)
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
janetstanford
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Re: Dad recently diagnosed - waiting and anxious

Post by janetstanford » 29 Mar 2012 12:07

Sarah
I think you said it all there and for all of us :there is always hope: :) we have all gone through the shock period (there is an end to it ) also we have all had a few issues with the NHS and the way we can at times be treat and spoken too .....
as you know i have transfusions and Gonny 25 years sounds amazing i hope thats me still here after 25 years (after diagnosis) that would make me 73 and on a sunny day like today that makes me :)
Nyanko hope your dad is well and starting to come to terms with the illness and i do hope they enjoy the holiday i do believe they will come back rested and with a clear head and able to move forward
take care Janet
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 30 Mar 2012 15:59

Thank you everyone for your kind words, it's stuff I really need to hear. Sarah, I hope Gonny continues to be well for many more years!

You guys probably get to see (well, read) me at my worst on this board, as I don't want to be negative in front of my parents, but I need to let the fears and doubts out somehow. As I have mentioned before, there is no extended family or family friends to help us out in "real life" - just me supporting my parents, and my husband supporting me. There are times over the last few weeks when it's been overwhelming, and when that happens, these boards are a good palce to let it all out.

I'm feeling more confident with the knowledge that we have treatment plans in place now, although I know I shall be jittery when Dad starts the Azacitidine. His blood counts are already low and it'll potentially hit him quite hard when it inevitably makes them go down more in the first couple of cycles. But, for the next couple or three weeks at least, we can all carry on as normal. I'm learning more and more that you have to cross bridges when you come to them rather than use up your energy worrying about things further down the line!
Sarah Reakes
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Re: Dad recently diagnosed - waiting and anxious

Post by Sarah Reakes » 30 Mar 2012 18:51

Hi Nyanko,

Good to hear from you. I think one of the main purposes of this Forum as I see it, is to let out your feelings when you need to and to share with others; we have all derived great comfort from doing so. When I look back at my early postings, I was very down indeed and it was the thought of other people out there in similar circumstances and who offered words of comfort and support that helped me through.

You do need to express your feelings, as to keep them pent up is not good for you, and we of all people really do understand how important that is. You are shouldering a hell of a lot of emotional and practical responsibility at the moment but as you say it is so easy to get ahead of yourself and this can only add to your stress levels. It really is a case of a step at a time.

It cannot be easy not having a sibling to share this with you, and the role reversal of looking after a parent when they have always looked after you is always very difficult. I was a single parent with a daughter, and my mother lived with us for over 20 years and I had to hold down a full time job, take her to hospital appointments (she had an eye removed with melanoma cancer, and she was agoraphobic so never went out, and other health issues) and although I am one of six children, the responsibility fell on me totally, so I do understand your situation. You sound a very capable person and I'm sure you will cope, but you have to be kind to yourself as well, so when you are able to switch off, then do try to - it is so important that you and your husband have quality time together otherwise you will just burn yourselves out. Worry and stress are the worst emotions for draining the body and so I thoroughly recommend that you try and do some relaxation/meditation to try and have some healing time for yourself.

One of the most important things is to have confidence in your Dad's Specialists, if you have that then you will be able to relax a bit knowing that everything is being done that can be done.

My thoughts are with you and do try not to worry too much.

With very best wishes.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
david j
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Re: Dad recently diagnosed - waiting and anxious

Post by david j » 30 Mar 2012 19:32

Hi Nyanko

I myself have just been diagnosed with MDS this week and I understand exactly how you feel about having no extended family.I am a single man,have no children,and the only close family member I have surviving is my Dad,who is now 76 and thankfully,still in good health.My only sibling,a sister,died of Hodgkins Lymphoma in 1986 aged 24 and my Mum died of PSP (a rare neurological disease) in 2009 aged 79.So,my diagnosis is another 'kick in the teeth' for our family.We went through so much during my sister and mother's illnesses and my mother's is still hard to bear as it is still recent.

It makes you feel so isolated when you don't have much family.At least we have got this forum to share our feelings.

I hope your Dad's treatment goes well.

David.
David,Age 55,MDS RCMD 2% blasts,IPSS Score 2,normal chromosomes,normal cytogenics.Diagnosed March 2012,normal Red Cells, low White Cells & Platelets,Slightly Enlarged Spleen.No current treatment,active 4-monthly monitoring.Brighton,E.Sussex.
sophie
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Re: Dad recently diagnosed - waiting and anxious

Post by sophie » 04 Apr 2012 12:27

Dear Nyanko,

I try to keep out of the forum as much as possible - as all users are offering such great support to one another - but I do check in every now and then.

Please never hesitate to call us if you are struggling with any aspect of MDS care.

It affects people in different ways and things need to be repeated - often - as one takes in support and information a little bit more each time.
People go through stages of acceptance.

Please do call any time - it is very important for us to know what patients and families struggle with - so that we can try to improve matters for all patients in the UK.

All the best - and hope to hear from you soon.
Please email me on the main email address - not on this forum.
Or call me.

Warmest regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 09 Apr 2012 20:42

Thanks Sophie, I think I will be talking to you very soon.

Well, my hopes for Dad recharging on holiday this week have gone down the pan - and not just because of the un-relaxing British weather. I rang my parents last night just to say "Have fun" and it turns out Dad's been having a weird week of it. He was feeling very poorly for a couple of days after his last blood transfusion (3 units on Thursday 29th March) but was better when I last spoke to him, on the Sunday after that. In the intervening week, he's been alternating between having days when he's been OK, and days when he's been having chills, sickness and diarrhoea, appetite loss, extreme tiredness and (worryingly) a bit of a temperature. He's been resisting Mom's attempts to get him to go to the doctor/hospital, until he finally had to admit last night that he wasn't confident he was going to be well enough this week to risk going away. So, no holiday, lost money, illness and misery all round. And, he's still refusing to get his symptoms checked out. I'm alternating between feeling very sorry for him and being cross at him for being so stubborn all week. I think if he'd got it checked out and treated when he started feeling bad, he might have been well enough to travel today.

I guess what I'd like to ask everyone is, has anyone else experienced symptoms like his? They all started right after the transfusion, but I suppose it's just as possible they're part of his MDS (he last had the chills and appetite loss when his RBC was getting very low - but that was a consistent decline in wellness, not up and down like he's been experiencing for the last several days)... should I be pushing harder for him to go to the doctor or hospital? His next scheduled appointment isn't for another week, and a week can be a long time in medical terms:P
chris
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Re: Dad recently diagnosed - waiting and anxious

Post by chris » 10 Apr 2012 12:09

Hi Nyanko

So sorry to hear your Dad had not felt well enough to get away for a while. It really knocks your confidence with this diagnosis and you fear to wander far from home "just in case" something happens. I think we would all rather be in our own bed when we feel unwell.

I can also sort of understand him being reluctant to go and get it checked out and, to be honest, he has so many different symptoms that they could be down to the MDS or maybe something completely unrelated. You mentioned that he had started taking Diazepam and that has a range of side effects which include some that he has so that could be "muddying the waters". See link below. If he has a temperature, though, I would urge him to get that checked out in view of his low white cell count - in case it is a neutropenic fever as that does need to be treated promptly.

http://www.netdoctor.co.uk/depression/m ... zepam.html

When my MDS started I felt sick and had loss of appetite and weight loss for a couple of months but I could not really know whether it was part of the disease or the psychological effects of being really, really scared about what was happening to me. Perhaps your Dad feels the same? Could you check out whether he would want/could have any counselling either through the hospital or through Macmillan? It may help him to talk about it all to a stranger for whom he does not have to put on a brave face?

I can see it is frustrating for you but you will have to try to let your Dad deal with it in his own way. He needs your support and to feel you are on his side - even if you would make different choices for yourself. As Sophie says, everybody comes to acceptance at different rates and your Dad has had a lot thrown at him in a short time and needs time to process it all.

Take care, Nyanko, you are doing a great job and your parents need all your love and support at this difficult time.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 10 Apr 2012 13:17

Thanks Chris, I wasn't aware of that. Interesting to know. He's only on a very low dose at the moment so I'd be surprised if it was causing side effects, but I guess you never know.

I think I should point out that when I say I'm frustrated or annoyed on these boards, that's a reflection of my own feelings and not necessarily how I'm acting towards Dad. As I've mentioned before, the role I have adopted with my parents is very much trying to encourage them to be positive, and passing on helpful information. There are certain things that I've felt it's worth being vocal about, like him getting his temperature taken twice a day, because I know for sure that it can cause a quickly-escalating problem if you get an infection whilst neutropenic. (Thankfully Dad came round to that one quickly so it's not been an ongoing issue.) For the most part though, if I think Dad's not taking his symptoms seriously enough I just urge him to be cautious and sensible, and leave it at that. But in my mind (and online), I will probably be tearing my hair out!

Situations like the one we're in at the moment are tricky, as neither Dad, nor me or Mom, knows yet what's "normal" for him. If you've had the illness for a year or two you can obviously be more confident about this, but we've gone from mild anemia to high-risk MDS in the space of three months and we're still floundering. I'd liken it to learning to swim by jumping out of a burning plane into the sea.

I guess the issue is, since we don't know what's serious and what's trivial yet, I'm afraid to treat anything as trivial - just in case. When Dad was unexpectedly hospitalised and had to have the 9-unit transfusion last month, it really shook us all up. Not even his haematologist was expecting his blood counts to drop so much, so fast (they all went down by about 30% in the space of a couple of weeks). For me, that changed the state of play completely - now I don't feel confident to assume everything will stay stable or OK for any length of time, no matter how short. Obviously I don't express this fear to my parents, but it is there, and it's what drives most of my agitation. I hope, though, that this will diminish as time goes on.

I really want his treatment to start ASAP, as it's the only thing I can see that might bring the stability we all need.
janetstanford
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Re: Dad recently diagnosed - waiting and anxious

Post by janetstanford » 10 Apr 2012 17:42

Hello
i am blood transfusion dependent i have 2/3 units every 3/4 weeks i was diagnosed october 2008 after having had chemo for high and low grade NHL of the bone marrow
in may 2008 when first diagnosed my marrow had gave in and all counts blood whites newts and plates were at seriously low levels all but blood have grown back
the advice i was given was always to have any symptoms of illness checked those in particular temperature and diarroha and this was from the nurse specialist..... if this should happen to me within 48 hours of a transfusion i would be ringing the nurse for advice ..maybe this is an idea instead of rushing off to the hospital which your dad seems at pains to do ?....i had to take both antibs and antivirals for a year after until my white cells and newts had reached normal levels but even now when a virus hits i have go get some meds to support the immune (as it happens chest infection at the moment and have been on a weeks course ) i too used to take my temp twice a day for some 18 mths it was advised by the nurse infact now i do it at times to reassure myself all is ok :( ...
i am sorry to learn your dad is still at odds with his illness and still objects to visiting the doctor taking advice ect and this must be stressful for you
Chris is right about certain meds giving symptoms but i think i would err on the safe side and get in touch with the hospital best to be sure
as i have been having transfuions now for 4 years i have found the last year or so it takes me 2/3 days to feel normal after a transfusion i am not quite myself and this is different to the symptoms that i have at least a week before ...so your dad is not alone in this feeling of not being able to skate board swim and do the great north run ;) maybe you could tell him this could be normal to feel this way (if nothing wrong )
sorry to hear no holiday and weather :(
hope i may have helped Janet
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