Hello and welcome! Some great advice here. I think the counselling advice is spot on - something I wish I’d accessed earlier.
I wish I’d know what support there was out there in telling/how to tell children. This would’ve really helped. For me it was the emotional support that I wish I’d asked about more instead of being strong even feeling out of control. So glad I know where to access support now!
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Hi Erica
Thank you for your warm welcome.
I am gradually discovering what a positive and helpful forum this is. And how lovely everyone is -especially being so open with their own stories.
I have taken your advice regarding writing things down…that in itself is a really good piece of advice. It’s amazing how one’s mind goes blank when talking to the doctors/nurses!
Thanks again. Take care, Irena
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Hello Tia
Thanks for your reply to mine.
Gosh - you have had to cope with so much. And so many emotions to deal with - from the high of your first baby arriving to the low of diagnosis of your husband’s cancer.
I really hope that by now (you say first child…so hopefully you have added to your family!!) your husband is is still well and energetic and you are enjoying your family life.
I have to say I am a bit concerned by the need to avoid exposure to sunshine. I love being outdoors, walking, tennis and golf (when allowed!) and gardening. And I always feel better in the sunshine. I will have to get used to applying lots of sunscreen!
Thanks for sharing your experiences. I agree this forum is great!
Take care.
Irena
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Hello Quentin
Thank you…so far…so good. Though still nervous about the treatment.
Irena
(Oops -I’m being advised to consider replying to several posts at once…soory -I’m a newbie!)
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Don’t worry at all @irenag it’s just automated advice - please continue to reply and use this forum however is easiest for you!
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Hi @irenag, I now have a range of very fetching hats, even if I say so myself, one of which I have decorated with butterflies. Who cares what I look like, I have had skin cancer on my head twice, I am fair haired and skinned and used to burn and blister when I was young.
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I agree with you that an informal chat with say, the Specialist MacMillan Nurse, about what to expect would have been settling. I did find the MacMillan booklet about my particular blood cancer very helpful. I was so glad that my husband was able to accompany me for my appointments because as soon as you start on the chemo, within even two days, you are very depleted and it is hard to take information onboard. I also underestimated the feelings of friends. The first time I felt able to drive I went to the golf club just to see familiar faces, after ladies golf and to have a coffee. I thought I looked great and was chuffed that I felt strong enough to drive and go out by myself. A year later one dear friend told me how shocked everyone was, how pale and weak I looked etc. Several ladies were upset for days. I totally underestimated it and found it hard to believe. I also would have benefitted from this forum because you do feel the need to cheer up your family and that can be a lonely place. I had the temperament to do this and it not affect me but it is tough. An opportunity to talk honestly is a pretty rare thing when you are very poorly.
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I had a Macmillan specialist nurse for my stem cell transplant but not my chemo and would really have valued that at the time of my diagnosis and initial treatment as I was completely on my own and had no one knowledgeable to talk to. I had no idea this forum existed at the time as no one pointed me in the direction of available support. It’s great that you found us and I hope that you are able to get whatever support you need.
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Haha. You’ve been told off by Big Brother irenag !! Congratulations! Kudos !
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When is a cancer not “Cancer”? Not to downplay the conditions, but I had never heard of chronic cancers, and although I am fortunate enough to have access to information and support, not everybody is.
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Hi @Mjn500 a great big welcome to our forum, I am glad that you have found us.
All questions are valid on this forum and if you have been recently diagnosed you have just entered this world of a new medical language.
Yes, there are chronic cancers, I have been diagnosed with chronic lymphocytic leukaemia and for me that means that I have the cancer but that I am on ‘watch and wait’ or ‘active monitoring’ to chart its progression by looking at regular test results, symptoms etc. and that it does not currently need treatment, I count myself a very lucky girl.
When I was first diagnosed I found it very difficult to explain to family, friends and work what I couldn’t understand myself. I think we all felt that you get a cancer, receive treatment and be cured, however I believe I will always have this cancer and might or might not have treatment sometime.
The Blood Cancer UK website have a lot of useful, reliable factsheets on their website.
We support each other on our forum and no matter what our diagnosis I often find that we share similar fears, thoughts, feelings and practicalities.
However if you would like to talk to someone you can contact the 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 a feeling that there might be something behind your question and I look forward to hearing more about you. take care and stay safe.
I wish I’d know that it is perfectly possible to live well with blood cancer and that my consultant hadn’t been so melodramatic when she told me. I didn’t appreciate the presence of a Macmillan nurse there with tissues either. I don’t think about the future, nor dwell on how I am feeling, finding it much better for me to keep busy and put my diagnosis to the back of my mind until my hospital appointments come round. Maybe a level of denial or minimising the prognosis isn’t for everyone, but it works for me!
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I also feel the same. I was diagnosed with indolent Marginal zone lymphoma in March 2019. I had a 15 minute meet with a Haematologist who gave me a brochure and said I would be on watch and wait. Thankfully I had looked up a lot of information about it before the appointment as I felt I was treated as a number and not as a human being. However since then the Dr I am regularly under has bent over backward to ring me after scans or xray to avoid the terrible stress involved waiting. If anyone has my condition I would appreciate knowing they’re journey and if they needed treatment. It’s one of those noone knows and it’s also very rare
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Hi a great big welcome @Shelleyrennie yes, there are at least 137 types of blood cancer so it is often difficult to find someone with the exact same one.
A lot of us are or have been on ‘watch and wait’ or active monitoring and learn to manage any symptoms they were diagnosed with.
Some people have treatment straight away but I have been a very lucky girl and been on watch and wait for 17 years.
The symptom that does affect me is fatigue.
My experience when I was diagnosed seems very similar to yours although it was a gynaecologist that told me, It was my GP that supported me.
What many of us share on here is similar fears, thoughts, feelings and practicalities no matter what our diagnosis is.
We support each other on this forum and if you would like to talk to someone you can contact the 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 I look forward to hearing more from you, I particularly related to your stress around medical appointments and your waiting for test results.
I still remember that first appointment like it was yesterday. The doctor was great but also had other patients to see. I think a second appointment is such a good idea- once you have processed things. But I suppose the NHS is stretched and this might not always be possible. I’m really glad you have a good team around you now 
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Thank you for sharing your thoughts around this @Shelleyrennie, it’s really good to hear that your Dr keeps you informed after any tests you have! How are you doing at the moment? You may have seen that there a quite a few people on watch and wait on this forum. Really hope you’re finding it a useful place to be part of.
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I would say, civally and politely, listen to the advice give from the Professionals. But don’t be afraid to question it, and don’t be afraid to upset them. As I said in an earlier post, It’s just another day at the office for some, but NOT you. Keep at them if you are not happy or unsure. Do your homework and research (As much as you can assimilate, and understand) Sometimes you will hear and read a lot of Scientific, and Medical advice on this site, as well as the CLL one. Much of it is entirely relevant and correct, but don’t be blinded by The Science. I have found that, unfortunately some of the lenghty and academic advice is just too much for the average ‘Brain’ I’m afraid. (Certainly mine) Keep it simple, and make your decisions based on the advice you receive from those you respect, and trust. Difficult at times, I accept. All the sites dealing with our ‘Cancer’ are compassionate, and have good knowledgeable Administrators, and even the odd Doctor, or Scientist, who have Cancer themselves. All of the above, I wish I had known, when first diagnosed. All the very best to all.
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Hi @Vindicatrix, I think it’s so important to ask questions isn’t it. Sometimes that’s really hard for people but I’ve learnt that if I want to feel settled and in control that I’ve had to learn to do this. How have you been keeping?
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Hi Nicolas 75. Thanks for the repy, I have been managing well so far. I had my phone call consultation the other day. My Haematologist is soon retiring (4th in two years.) I did ask her many searching questions which she did answer. I also asked about 2nd opinions, and CLL Specialists.She seemed a little brusque in her replies, and said that specialist were in short supply in Scotland, and that I would have to go private if I wanted to pursue this course. In fairness to her she did answer all the questions posed. A few hours after the call, she notified me that she had referred me to a CLL specialist she had found at the Western Infirmary Edinburgh. He is apparenty willing to take me on as a regular NHS patient. My next checkup is in three months with him. I think this perhaps reinforces my early advice to other CLL sufferers, that we should push Civilly and with respect) to get the very best treatment available to us, and not be afraid to upset the applecart, so to speak. As I said in an earlier post, for some of those treating us, it is just another day at the office, but can literally be life and death to us.All the best Ron.
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Well said @Vindicatrix. I hope you have given other the courage to pursue things if they want/need to!
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