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Share your story: your experience of being diagnosed

I also regularly get people commenting on how well I look when it’s quite often taken every ounce of energy I have to get out in the morning. I must admit I’m finding an upside of the lockdown is I can work at my own pace quite often and don’t have to expend energy travelling into work.

Take care and stay safe everyone.

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@Maple your words rang true to me as I felt quite fraudulent when I went into hospital for my second stay. I was on a liver ward with a group of very ill patients and I just had a DVT in my leg - granted my leg was double in size, but it still felt a bit wrong to be taking up a bed. I found out I had Budd Chiari and ET blood disorder after a work trip to US where my stomach ballooned. I looked bigger than when I gave birth to my kids, so it was clear something was wrong! It took 8 weeks for them to work out I had a liver clot and that it was linked to an MPN. In that 8 week period I couldn’t walk, so was crawling around in agony, couldn’t leave the house and was struggling to breathe as was full of fluid. Was rushed to A&E as well as my potassium levels were so high they thought I might have a heart attack! I now have a stent and on lots of different drugs for my blood. Work were great at the start but then just wanted me back full time, so I’m now out of work at the worst possible time to be unemployed. But everything happens for a reason so I see it as a positive for me to move on and do something better with my life. I work in PR so am very good at doing ‘jazz hands’ and people telling me how good I look and that they wouldn’t know I had been unwell (again that makes me feel like a fraud, feel like you need a viewable symptom for people to appreciate your illness) These forums are what make things better as I realise it’s not just me that feels this way and to hear how other people are dealing with it.

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@Lou We really appreciate you taking the time to write this. As you say Lou, I can only imagine how difficult it must be to have already gone through so much but feel like you didn’t get the all the support you hoped for from your workplace. And in addition, dealing with the reactions you described from other people. I’m so glad to hear how much you get out of this forum, and am sure as well, sharing your experiences will help our other lovely forum members too

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@Lou, you have really had some scary and agonising times, I think those times can feel so lonely and isolating sometimes, my husband cannot take it and often says something to make it better (more for him !!) or ignores what is going on and sticks his head in the sand, it is not his fault, that is just how he is made. Yes, perhaps sometimes we understand as family, friends and work colleagues are unable to. Keep letting us know how you are doing.

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@Erica That’s so kind. The only upside is my kids both managed to ace their exams. My son got 3 A stars at A level and my daughter did well in GCSEs. He’s doing medicine and it made me laugh as in his first exam the question he got wrong was on INR and Warfarin - I mean come on!! He was kicking himself!!!

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@Lou, you must be so proud of your children.

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@Lou well done to your children! they sound like superstars :smiley: !!

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It is so comforting when our children do well despite having to deal with so much at home. My youngest is living by himself, and working at home during lockdown, so I was most worried about him coping. He was a teenager when I was undergoing treatment and nothing was hidden from him, but it seems to have given him the resilience needed to cope. Congratulations on the exam results, and I am sure your son will do well, and will be very knowledgeable about warfarin and INR now

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@Pisces56 Such lovely words to Lou, I hope you and your children are doing okay @Pisces56?

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Thanks Su. They are all adjusting and being kept busy with work and children. One son commented this morning that although there has been less traffic on the motorways, the accidents have been worse, meaning even on days off he has had to deal with phone calls about problems. We had a lovely video call with his young family this morning. One daughter has started talking, and the other walking since we last saw them. Hope the team are all finding ways to relax during a very busy time xx

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hi @Pisces56 hope you’ve been doing alright since this last post? And so sorry to hear about your son’s work, hope he is managing okay? So lovely that you had that video call :slight_smile:

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Hi Su

We are all doing fine thank you. My husband was 70 on Friday, and that was so hard as we are such a close family. Our youngest sent a video message, and then phoned in the evening. Our daughter and family contacted us on Zoom, and had a danish pastry with a candle on which they blew out and sang happy birthday. Both of us were choked up and shed a few tears for the first time since lockdown. They had also made a lego movie to show him the birthday present we are giving him once things are back to normal. Our older son was working, but his wife sat the two girls with some of their cuddly toys and videoed the older one singing Happy Birthday. They video called us on Saturday when Daddy was home.
I received my shielding letter last week. G has been doing the shopping and getting medication, so not so concerned about that, but wanted to know what I should be doing…although that is not so clear cut. The highlight of the week is going out on the driveway and clapping with the neighbours and waving to everyone. We do have shouted conversations across our back gardens so there are no secrets…medical or otherwise.
How are all the team? It seems ages since I came into the office to talk to the recent recruits, and then the Christmas concert at the Royal Albert Hall. Also the awards ceremony in February.
Stay safe

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I was diagnosed Friday 13th March 2020 with NLP Hoskins lymphoma, I had a lump in my groin which the doctors thought was a hernia but was in fact a tumour. The diagnosis was a shock and how it happened was not ideal. I’d been in hospital for a week as my wound got infected and I needed IV antibiotics, then at 6pm on the Friday night a nurse came to get me to tell me my biopsy results were in and a doctor would tell me. As he was a general surgeon it was literally just that I had Hopkins lymphoma nothing else. As the hospital was going into covid lock down they wanted as many patients out as possible, so I was discharged on the Saturday. Then cause of covid I’ve only had 1 call with the haematologist, it was to tell me good news that I had Nodular lymphocyte predominant Hodgkin lymphoma and I was being put on watch and wait and I didn’t need treatment. I don’t want to sound ungrateful it’s the best diagnosis but I feel so confused about it all.

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@Pisces56 Happy Birthday to your husband! Gosh must have been so odd having to do many of the celebrations over video message and Zoom, I do hope you get to have a belated celebration when the time is right. It’s so lovely that your family made such an effort to still make it a special birthday, they sound incredibly thoughtful!

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Hi @Magwitch1, A great big welcome to our forum, I am glad you have found us. What a time to be diagnosed, it certainly was a Friday, the 13th. That was the weekend we went into lockdown so, whilst not wanting to defend what happened to you, I think the whole country was in panic mode in unknown territory. You are not the only person on this site to have been diagnosed at this time and some were also given minimal information about their condition and way forward. Medical people use the words ‘watch and wait’ that feel like just being abandoned with a diagnosis which is a complete bombshell for us. To us the usual course of events is a diagnosis, treatment, hopefully a cure and we go back to ‘normal’. Often blood cancer patients go onto watch and wait, which is active monitoring, and patients have regular blood tests and the medical team look at the results, the patients other symptoms and tests and their medical history to decide the way forward. Some people have treatment immediately, others over the years. You must be in complete shock and so, so confused. I stress I am not a medical person, just someone who was also given my diagnosis in an unhelpful way a few years ago. The Blood Cancer UK website has lots of information and leaflets and they also have a wonderful 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 if you need to contact them. Please keep posting how you are doing, we are all supporting each other through these unprecedented times.

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@Magwitch1 a warm welcome to the forum. Thank you so much for sharing this. I’m so sorry you’re feeling confused about it all, though, it is totally understandable. A diagnosis of blood cancer can be so difficult at the best of times, let alone during the current climate. May I ask how you’re coping at the moment and if you have much support around you?

We have some information around Hodgkin’s lymphoma on this page of our website but also in our Hodgkin Lymphoma information booklet here which you’re welcome to order for free. We’ve also got some information around Watch and Wait - https://bloodcancer.org.uk/understanding-blood-cancer/watch-wait/

Do you have another call with your haematologist coming up? Or a consultation with a different member of your healthcare team such as a clinical nurse specialist?

If you want to talk anything through @Magwitch1 our support line is only a phone call or an email away. Please don’t hesitate to get in touch if there’s any general information we can send you or anything we can do to support you.
We’re really glad you’ve joined the forum as it’s a really supportive place. There’s other people with Hodgkin Lymphoma and also, people on watch and wait for a range of different conditions, who might find have shared similar thoughts and feelings as you.
Take care @Magwitch1

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Hi All,
I am looking for some reassurance regarding CML we have just received a diagnosis last Thursday via video link for my 58 year old husband, he had been having blood tests since last October,which came back as high white blood cell counts these were repeated again in November, December and January, he’s hospital appointment came through in March,this was cancelled due to covid 19, May hospital appointment cancelled too, we now have more blood tests and bone marrow biopsy next week. I am worried sick that all this time has passed and the disease has accelerated.
I would be grateful for any information,thanking you all in advance.
My husband has lost about stone in weight,his arms are itching constantly at night.

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Hi, @Pip61, I am so glad you have found our forum it is here to support you as much as your husband. You certainly have both had a very worrying time and to receive a diagnosis that rocks your world by video link must be really traumatic. The Blood Cancer UK website has a link at the top of the front page ‘Understanding blood cancer’ and then ‘leukaemia’ will give you information and details and also specific information to CML. It also gives details of ‘watch and wait’ which is active monitoring of symptoms through blood tests and other tests. I am not a medical person and obviously your husband is having tests next week. I cannot say don’t worry because you must both be in shock and it is completely natural to worry. We are here to support you on this forum and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk. Please let us know how you both get on and post at any time what it is like for you. Take care, have some treats and stay safe.

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@Pip61 a warm welcome to the forum. I’m so sorry to hear that you and your husband are going through what must be a worrying time. How are you both doing?
We have this information booklet on CML, in case it’s useful for you and your husband. In there is general information around diagnosis of CML and the different pathways to manage the condition. It also has information around staging CML on pages 37 - 38. It’s so understandable that you have worries around the fact that his blood tests were cancelled - it’s good to hear he has an appointment next week. You or your husband may want to get in touch with the healthcare team at his hospital by phone or email before his appointment, to talk through these concerns.
As Erica said, we are here for you on the support line. We are only a phone call or an email away if there’s anything you want to talk through with us, or any information we can send/post to you st this stage and going forwards.
Do keep us updated and let us know how you and your husband are getting on.

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Hi Pip, welcome to the forum, and really sorry to hear about your husband’s diagnosis and also the slow process to getting that diagnosis. It’s a huge shock to get a blood cancer diagnosis anyway, and I can understand that you’re concerned because of the delay. …I think quite a few people with CML are diagnosed late or accidentally (through a routine blood test) because there are sometimes vague symptoms, and as a recent Blood Cancer UK campaign highlighted, sometimes GP’s are slow to spot it…In my own case (diagnosed in 2010) I had lost weight too, but put it down to doing extra walking. I was really scared and shocked to find out it was CML.
But apart from that - it’s good that the proper tests are now being organised. Once the diagnosis is confirmed, the treatment regime will be able to start and generally works pretty quickly in getting bloods in ‘normal’ levels. I had a massive spleen when I was diagnosed, and that improved in a pretty short time…There will be lots of information to take in , so please make sure you ask the questions you need, whether you and your husband need to ask on here, or hopefully you’ll have a named nurse you can talk with. There are lots of treatment options for CML nowadays, even if one drug doesn’t work there are more to try. I’ve had a more unusual CML journey but am still here almost a decade later, so it’s certainly not the death sentence it was…With love to you both and keep us posted Jx

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