Is there anything you wish you'd known when you were first diagnosed?

Is there anything you wish you’d known when you were first diagnosed?
Whether it’s around understanding your diagnosis, telling people, speaking to your treatment team, or coping through a time which can be so overwhelming and worrying, what would you say to others who are going through a new diagnosis of blood cancer?

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Hi, yes…I would like to have been given more than a couple of leaflets and a chat with a nurse. I want to be treated like an intelligent person and have the abbreviations of the blood tests explained to me. What do the numbers mean? What does it mean to be above or below the “normal range”? What are they testing my liver and kidney functions? Etc!
I feel I have been left to Dr Google to answer my questions.
And I want a copy of my Jak2 results, as well as my blood test results. This should be offered as standard, in my opinion.
I fully accept that some people just don’t want all the forensic detail, but it would be nice to be offered the information.
I have no doubt that I’m being treated well…but one day I’m blissfully unaware of what ET with JAk2 positive means and the next day I’m taking a cytotoxic drug…possibly for the rest of my life, and it could actually harm me in the long term!!

So…I think that more can be done to help people to understand what this all means!

I also feel up and down emotionally. The word “Cancer” is scary!

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Hi @irenag, a great big welcome to our forum and I agree with you.
A cancer diagnosis completely rocked my world and what I had planned out for my future.
I suddenly entered a parallel universe that spoke another language, yes, as you say mostly of abbreviations.
Perhaps sometimes when you are working in the medical field that is your natural language and it is not appreciated the effect of receiving a cancer diagnosis can be.
How could I understand what my diagnosis meant emotionally and practically and therefore how could I tell family, friends and work.
Personally I was in such shock nothing that was being said to me was getting through, so for me I would have liked a follow up appointment a few days later with a CNS (Clinical Nurse Specialist)
I think I wish I had know of the shock process I was going through, my emotions were all over the place for a very long time.
I would say to others to be really kind to yourself and give yourself some time to let your initial shock settle. Then perhaps to have what I wish I had had the Blood Cancer UK website, support line and definitely this forum and the support I have received on here and to realise I was not the only person in the world with my diagnosis and feelings.
I would keep a diary of how I was and also write down all my fears, questions, thoughts, feelings, symptoms and practicalities and make sure that I covered them all at medical appointments and if I didn’t understand something I would ask for clarification and give myself time before making decisions.

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Hi @irenag
This is such a relevant question.
I wish I had known about blood cancer uk at the time of diagnosis.

My husband was diagnosed 4 months after our first child was born. I’ll be honest I went into shock and maybe even depression. I had no one to talk to and I was so scared of losing my husband.

An additional appointment with someone after diagnosis would have been a good start. The medical stuff, yes more detail would have been appreciated. To understand exactly what they are monitoring. What they look at in the blood and what it means.

During treatment, I used to make him sit outside for some sunshine and fresh air. We weren’t told about the effects of sunshine and chemotherapy drugs. He now has a severe dry skin problem. His confidence plummeted my guilt sky rocketed and not having others to talk to was a big point on the loneliness scale.

After he had his treatment he remained weak and unwell. Prone to chest infections and so tired. Dr’s kept saying he didn’t need any additional vitamins but after some convincing he listened to my reasoning and started taking Vitamin D and iron tablets. He is so much better. We’ve finally found a cream that helps his skin and he has remained well and energetic.

Now I’ve joined this forum, read what people have shared it’s really helped me. I can have a more informed discussion with my husband. I hope this helps.

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Gosh @Tia having your husband diagnosed 4 mths after your first child was born must have been such a shock and such a lonely time for you.
I can imagine your emotions and thoughts were just bouncing about everywhere, yes, I wish you had found us at that point.
I also wish I could have known how to ask the other person how they were feeling as we were probably both going through the same thoughts and feelings and I think a feeling of ‘floundering’.
Thank you you have helped me realise some things.
Please let us know how you get on and don’t forget if you would like to talk to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
I have found this forum very supportive and I hope you will too.
I look forward to hearing more from you

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Hi Tia

That must have been so difficult getting the news about your husband’s diagnosis so close to the birth of your first baby. It’s great you’ve found the forum and I know you’ll find this to be a great space for support and guidance.

All the best, Peter

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Hi @irenag

I know what you mean about the word “cancer” being scary. I was in a similar place when I was diagnosed three years ago but with support of family and friends and especially this forum I been able to get my own head around things. There are still good days and bad days but I must admit I have found more good days and when things are challenging having the support of my friends here on the forum is fantastic.

All the best, Peter

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Hi there, your experience so matches mine that I wonder if we are receiving treatment at the same
hospital.
You’ve got it/here are a couple of leaflets/a nurse will call you.
I would also really like to see my results.
I wish I had known about the JAK2/STAT3 pathway becoming deregulated. In my case this manifested as significant hip pain for a year. Fortunately I tried 1Ibuprofen (200mg) and discovered that it reduced the inflammation by 95%.

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Hi @rigor, I am so glad that you have found our forum and you have showed one of the values of it already. That feeling of not being the only one was such a comfort to me.
Yes, we have entered another language, but it sounds as if you understand it far more than I do.
I look forward to hearing more from you, take care and stay safe.

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Hi @rigor

Welcome to the forum. Different hospitals seem to have very different ways of handling things. I lived in two different parts of the U.K. and the first haematology unit I was referred to was far less thorough and communicative that the one I’m attending now. In fact they didn’t didn’t even diagnose my cancer and at times made me feel there wasn’t anything seriously wrong despite me suffering from continuous infections. My current haematologist carried out a full range of tests including bone marrow biopsy (most painful thing ever) and was able to diagnose my MDS. He explained things clearly to me me in terms of risk and life expectancy and that incurable didn’t mean terminal. He always takes time to go through my results at my 12 week reviews and highlights the normal limits so I know how my results compare. I also have an excellent CNS who is always gets back to me via phone or email if I have any questions or any worries. All in all I’m really lucky with the team I have looking after me now.

The one thing I wish I had been aware of at the time of my diagnosis would have been this forum. I’ve found it to be a great support and a place where you can discuss things that you can’t necessarily talk to family and friends about. I hope you also find it a support and there are a great group of people here together with the other support available through Blood Cancer U.K.

All the best, Peter

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Firstly, this reply is me trying to be honest about my personal experience and that was several years ago so hopefully things have improved and at the hospital you are being treated at they will have better information for you!

I had no idea I was sick the first time I got diagnosed with AML. As I put all the ‘symptoms’ down to the physical job that I did at the time. When I relapsed and was told that as well as chemo that time I’d also need radiation and a BMT I wish the doctors had explained the full consequences of that treatment. It literally destroyed my life, mainly because I assumed I’d get fit again and get back to work as I had done the first time. But I never did and as well as the toll it took on my body, it messed my head up much worse. I’m someone that likes to know as much as I can to make an educated decision. When I discussed how bad the treatment had been with a doctor, he told me that they hadn’t told me how bad things could be as they didn’t want to put me off having the treatment. But that should have been my decision to make.

My recommendations for you though are these;

  1. Speak with a counsellor. You might think you don’t need to and that family and friends support is enough. But trust me, you will try and protect them from how you feel and you’ll bottle stuff up to be able to cope. You HAVE to let that out. Seeing a counsellor was the only way I sorted out my head after everything I’d been through.

  2. Ask lots of questions and if you think a doctor is wrong, stand up for yourself. Most docs are great but some think they’re gods and they’re not!

  3. Don’t use Google! It’s tempting but most articles you find are about worst case scenarios and that might not be your experience! I personally had an awful time with each chemo bar one. Yet an older guy on my ward with leukaemia had his chemo for a week, was never sick and went home a couple of days later after each course he had.

I’m not going to lie, this will be a difficult time, but you can get through it! Just take one day at a time! Don’t set dates in your head of when you’re going to get out after each treatment if your in hospital for chemo etc, as you can get disheartened if those dates come and go and you have to stay in. All the best to you and I hope you have a quick recovery!

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Hi @Dan2021, a warm welcome to our forum.
It sounds as if you have and are going through a rough time.
Yes, I agree that you need balanced information in order to make a choice that is right for you.
You say it messed your head up, I would be interested in hearing exactly what that meant for you.
Also what this has meant for your work?
We are here to support you and if you would like to talk to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Take care and stay safe.

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I would have quite liked to know what Myeloma was as nobody really explained it to me or talked me through what the consequences were. It would have been nice to know what support was available to me also as nobody really considered that I might want some and I was very much left to my own devices aside from nurses taking obs and physios trying to bully me into learning to walk again.

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Hi @Dan2021

I’d also like to welcome you to the forum. The three points you have raised are very pertinent. I particularly agree about the counselling and benefited greatly from this myself shortly after my own diagnosis. I was lucky that my employer provided me access to this as the waiting times for the NHS etc were between 6 and 36 months. I also agree about avoiding google as there is so much material out there that is incorrect. This forum is also a great resource that I have really benefited from engaging with and have also made some great friends whom I know I can turn to when things are not so good.

All the best, Peter

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Hi Peter, thank you for your reply and welcome! Now I’ve found the forum I look forward to engaging more on it!

Dan

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Thanks Erica, I have sent you an email regarding this.

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Thanks @irenag - great post. Hope you are well and strong.

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Good question Alice.
I agree with many of the good replies so far (@irenag , Dan2021 and others).
My AML diagnosis and treatment left me lacking 2 things:

  • better knowledge of the BloodCancerUK forum (as it would have provided some of the support I was missing in the early days post diagnosis)
  • “perspective”. I sort of understood my diagnosis (thanks Dr Google !), but couldn’t find anyone to explain the timeline of treatment (Chemo x 3, then MBT) or the longer term prospects for returning to “normal” life. I appreciate that much of this detail needs to come from a Health Professional; and indeed some patients may not need or want to know much of this detail. But others do need it - and it is necessary for them to have this full perspective in order to sort their heads out and start the long and difficult treatment and recovery journey .
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@Quentin, really good points, thanks so much.
Anyone else got any thoughts?

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