I find myself looking forward to going in a strange kind of way, I like to know what is happening with my counts and know that they are roughly what I expect. I am fortunate enough to be just on aspirin and venesection and need to go to the hospital every 6-8 weeks.
The part I do really struggle with is the emotion of being around some of the other patients, even more so when I need a venesection and see other patients in the day unit having their chemotherapy. I am finding it even harder every time I go, even though I know what to expect. It takes me a few days to settle down after my appointments I feel so emotional like I could cry if someone said boo to me and I am not usually an emotional person.
Would be interesting to hear how others feel.
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Foss33
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I am fortunate to not have to go as frequently as you but it is funny you should ask this as when I went last week I found myself more aware than previously of being surrounded by some very poorly people! I am lucky enough not to go into the day unit, but waiting for my appointment to see the consultant is bad enough!
Hi Foss 33, I know exactly how you feel. When I go into the haem consultation, the ward is close by and there are people wandering about with at all different stages of different blood diseases. On one hand it makes me think I am lucky compared with some of them but it also makes me wonder if that is my future too! I usually, like you, take a few days to settle down after it, give myself a talking to (what's the point of worrying about something that may never happen), and if results are okay, try to get back to a normal life again. I think it is another reminder of mortality and reminds me I can't control my illness to any great extent.
It is good to share feelings. If you feel like a cry - cry. I cry in private as it releases my tensions and it does me good, I am sure quite a few others will feel the same. Every sympathy Aime
When I first went to clinic I was completely in denial I kept saying I was in the wrong unit,I don't look ill so I'm not!! Then it hit me hard,I was venesection every 4 weeks given hydra to take and blood thinning ,I lost lots of my hair.also I lost my teeth.i did buckle ,cried in private,friends rallied ,sent me books,I learned to food fast to help me.6 months ago I was offered to go onto the Majic trial ,because the flushes and side effects were life changing,for me,the doctors at my clinic are without doubt my best friends ,my trial nurse Micky should be in films ( dishy)I have email contact,I carry a card .telephone numbers and pagers to my nurses,I'm so lucky to be in such caring hands ,it's o.k.now I cope really well.
You make some really good points Foss33. This is why I tried to start an informal patients meet on this forum, so that patients could discuss these kind of issues - the kind of issues that are significant to everyone of us but pretty much ignored at MPN forums and often by our medical clinicians. Unfortunately there was little interest so I pretty much gave up.
The emotional aspects of having an MPN have been worse for me than any physical issue, and I'm meant to be a macho man.
Dear Foss, thank you for having voiced your feelings and truly you are not alone. When I was first diagnosed PRV two years ago now I was in the private sector and I took for granted the privacy I was afforded. When my haem retired last August I elected to move to the NHS because I believed I would have more contact with both people who have what I have and staff who could talk about it with knowledge. It has been none of the things I hoped and much more I did not imagine.
I have met my haem once, she said she would see me in six months and then it would be annually after that. I have not seen the same nurse twice in the clinic and they don't even have time to ask how I am, just my name and date of birth and they are gone. Another one comes to take the blood and then some time later I am told whether I need venesectioning or not. All this time I am sitting beside patients having chemo. Some are quite well others really suffering poor things. When they do a venesection I am taken to a screened off area where I lie down and when I have tried to talk to the nurse it is as if I am interrupting her. I wait for half an hour afterwards and then leave.
I find that I can't talk to my husband for hours afterwards, mentally the whole thing is draining. I keep thinking I must get used to this, face what I have and jolly well accept it by doing positive things. You have described how I feel so well and thanks for being brave enough to say what I couldn't. Must stop now as migraine begun. Best wishes x
I get very nervous as my appointment approaches. I go to have blood taken first, then usually about 45 minutes later I see the haem. (One of 2 regular consultants) They ask how I've been, ask if i've had any problems then they go through the blood results and recommend what comes next. HU dosage etc. Then I'm out of there. Sometimes happy, sometimes worried sick! Sounds like my hospital is better than some others. I'm seen at a clinic not on a ward. But there are still obviously people who are a heck of a lot sicker than I am, and I know I'm luckier than a lot of people - doesn't stop me worrying though!
Not just me then! The question of your mortality each Sunday before the Monday appointment but at least its every three months now, just another cross to bear and thank our stars we are where we are, emotions play a big part in this for me but I'm on the up side most of the time, chin up!
Thank you for putting this into words and in such a sympathetic way...couldn't identify more with all you say and every time I go for appointments, so deeply conscious of seeing some extremely sick people in the oncology dept. yet feeling I look absolutely fine...first time I felt a complete 'fraud' even though the haematologist did confirm the word 'blood cancer'...what an invaluable forum this is for us all. Bless you, thank you for airing this and all those who have responded. Tinkerbell
Wow - thank you all for taking the time to reply, it is very reassuring to know it isn't just me that feels this way.
It is difficult seeing both poorly people and also people who don't look unwell at all but you know they must be poorly to be having treatment, it is a real reality check as to know how many people around us are unwell and we don't even realise.
Visits to the hospital also throw also really mix up my feelings about my own condition, on the one hand when I see the doctor if I happen to mention any symptom of fatigue or struggling with my memory which for me are my main symptoms but are difficult to deal with at times, she seems to trivialise it an tells me how I am the youngest in the waiting room I shouldn't feel like that, I feel like I am making it up and that I am making mountians out of mole hills about my condition.Then on the other hand when I am in the day unit I think I shouldn't be here I am not ill.
I have settled down now that a few days have passed.
Tinkly - what you have been through sounds terrible, best of luck with the Majic trial and with Micky ha ha
ET phonehome - I agree 100% the emotional side of this is so much harder to deal with than any symptom I have experienced so far, sorry to hear you attempts to arrange informal meetings has been unsuccessful, I guess the geography makes it challenging.
Linds - I hope your experiences improve at your NHS hospital, I felt like you at the beginning of my journey 2 years ago but thanks to the advice and feedback from some people on here things are much better now, I ask to see the same doctor every time even if it means waiting longer. I have a reasonable relationship with her although as I mentioned above I am not sure she takes my symptoms too serious because I am young (if you consider 35 young ha ha)
Towncryer/ Tinkerbell - you are so right, I do feel like a fraud when there are so many poorly people, but also makes me realise how lucky I am.
Thank you all once again for your kind words and understanding - sending you all best wishes, take care everyone
I know this is an old thread, but I was wondering what sort of PV you have and what may have caused it? You say you are only on venesection and aspirin. Why aren't you on HU or Interferon at the moment?
I'm very new to the disease and it is all a very steep learning curve, so thanks for shedding any light on your condition for me.
I have only just read this post being fairly new to this forum and totally agree that the emotional side and fear of the the future are the worst to deal with and it make me feel lonely as friends do not understand why you are worrying, what you have seen at the hospital and the fatigue experienced with these conditions, especially after a visit to the hospital or change in results or medication. I tell myself not to worry as it will not change anything and all it is doing is making me feel awful. This sometimes works but not always and it is sometimes overwhleming. I try to keep busy and to look after my social life as this is important to me as I live alone. I have a MPD Voice buddy who is very helpful and encouraging and a lovely person. Anybody go any other hints and tips for managing these kind of feelings?
Is that your dog in your photo?im so interested in pets ,I think they are a godsend as company and conpanionship, I use my dogs as therapy dog volunteers they do a great job as visitors in hospitals and schools and residential homes, I'm always busy making new friends , Twinkly. X
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