Share your story: your experience of being diagnosed

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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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Hi @Pip61

I’m Paul, I’m a Blood Cancer Uk Ambassador and I’ve been living with CML for 6 years. I’m sorry your husband has had this diagnosis but I’m glad you’ve reached out, when you first receive this diagnosis it’s very scary and it’s a great shock. It DOES get better. For the vast majority of patients (and I do mean vast) this will be a chronic condition that we live with and your husband will be able to lead a relatively normal life with pretty much a normal life expectancy.

You will have all sorts of worries and questions at the start and your emotions will be all over the place. Try not to worry about the disease progressing, if the clinical care team were worried about your husband’s blood results they would have had you in sooner. The Bone Marrow Biopsy (BMP) will determine the stage of the CML at a molecular level and it is highly likely your husband will be treated with a daily tablet called a TKI (Tyro Kinease Inhibitor). The first measure will be that the white blood count comes down to normal and then the monitoring of the molecular level starts. This will take quite a long time, years so don’t expect very quick results and don’t worry about them.

In the early stages getting used to the treatment and any potential side effects will be your main focus. Many people don’t have side effects which is great; I do but they are manageable and I’ve been working full time since diagnosis amongst other things.

I don’t want to bombard you with info at the moment but some practical suggestions which might help you through the first few weeks and months:

  1. Try and keep a notebook to hand to write down any questions or concerns you have as they occur to you and take it along to your appointments. It’s often easy to forget when you’re at the appointments and having them to hand will be easier for you. You’ll also be able to capture key info from the appointments without having to rely on memory.

  2. If someone can attend the early appointments with your husband it will be useful to capture the info because as a patient your mind can get a bit foggy especially in the initial stages when you’re still in a bit of a shock.

  3. You will be allocated a Clinical Nurse Specialist (CNS). They are just wonderful, don’t hesitate to contact them if you’re concerned about something or need specific info. Do use them.

  4. Try not to think too far ahead, concentrate on the next couple of weeks, then the next couple. It’s a long journey and quite different to other cancer journeys. It took me a year to get comfortable with the ‘battle rhythm’ of treatment. Be mindful that this can have an effect on emotional and mental health wellbeing too and there is lots of info and support on that as and when/if you need it.

I think I’ve said enough for now, you can get information overload but if I can support in any way do get back to me. You’re not alone and there is a CML Facebook group https://www.facebook.com/groups/cmluk which I found useful early on in treatment, but it’s entirely up to you how you engage with others.

Good luck with the BMB and the next appointments.

It will be ok.

Paul

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My diagnosis was a big surprise to me.
I went to my GP with abdominal pain which had increased in severity over a week. It was only three days before Christmas and I pondered what a burst appendix would do to the family celebrations and so went to the doctors. She agreed appendicitis was likely and sent me into hospital.
After the first blood test, routine just, one bottle, I saw someone more senior. Lots of questions about how tired I was etc and three bottles of blood. Then someone more senior still and more questions then four bottles of blood. It was difficult to answer clearly because I had just had my Dad’s funeral and was clearing his house for sale so tired seemed perfectly normal for me at that time. The one question which did trigger my understanding was about bleeding gums. Yes I had this and the dentist had lectured me about dental hygiene even though I had seen her for decades and this had never been a concern in my past history. When the mri scan was called for I knew what they were looking for. My hugely enlarged spleen was seen and I was to stay the night. All through this I kept asking about the ‘appendix pain’ which nobody was interested in. In the night my abdominal pain increased until I was given morphine and then disappeared although super tender. It was later explained to me that this was probably a lymph node blocked by the huge number of leukaemia and other white cells in my blood.
The hospital was amazing in getting the London hospital to open their lab for a bone marrow test for me the next day- when it was due to be shut for Christmas for external tests. Bone marrow was taken in the early hours of the morning and a motorbike courier delivered it. The test results were back by 8.00am. The team met me at 8.30 and shared the results. I would have prepared one person to tell me but eight in the room including students was a painful moment for me. I did feed this back to the hospital at a later date. By 11.30am I had my husband back and my chemo drugs dispensed and ready for me and was able to leave.
I feel very lucky. My leukaemia number had increased from arriving at the hospital to the next day. If I had not had the , ‘largely irrelevant’ abdominal pain I would not have seen the doctor and this only because Christmas was fast approaching and I did not want to spoil it for others. I was just into the blast phase but responded quickly to the treatment and although in my sixties was fit and well.
The one thing I would wish to have happened was for my dentist to have suggested a blood test with my GP because gum bleeding was unusual for me. I did approach her later to have her be aware of this symptom with blood cancer but she was defensive.
If all dentists were reminded of this maybe a few folks could be caught earlier in their blood cancer journey.

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Hi @GrandmaJo, Thanks so much for your story, it is a coincidence that many of us seem to have be diagnosed near the festive period.
Yes, mistakes seem to have been made which delayed your diagnosis, I bet dentists do not know certain warning signs, but your hospital getting the London hospital to open their lab for your bone marrow test is heart warming.
Take care and how are you doing now?

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I feel very fortunate. Despite low neutrophils I keep well.
Although I am normally a busy Grandma to six delightful grandchildren, including four little lads aged 4-6 years, the only contacts we now have are via the internet and the occasional countryside walk. They would normally be all over me and hugs and book reading and loads of sporty things. I do miss that. I sympathise with those school workers who have shared with the forum. My family talked, without me, and decided that too many infections would be available to their children in school and should not be shared with me! Covid was obviously the worst.
I think my family’s views were shaped when my daughter, a teacher, picked up shingles in school, whilst the family were living with me when builders were in, the Doctor told her to go home, get her dirty washing, her bedding, her toiletries and leave the house and go back to her own home. It really shocked her to see how seriously he took my vulnerability and she shared this with her brothers.
I get out a lot to the golf club and the lovely walks around me. It is fascinating how many different views are held by normally sensible people about the Covid risks. The idea of Covid has been normalised for them and some think we are being fussy. My husband appears to be some sort of health ambassador and shares understanding wherever he goes!!
The love of a good man is a wonderful thing but equally I can see that, at times he is affected by the concerns he has.

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Hi @GrandmaJo, It comes to something when the younger generation make decisions for us, doesn’t it, and it is even worse when I realise that they might just be right !!!
I also think the doctor might have been right when he told your daughter what to do when she contracted shingles. I contracted shingles 7 1/2 yrs ago with the stress and effort of downsizing to our flat. I have never got rid of it and it can flare up anywhere in my body if I overdo it mentally, physically or when I feel personally stressed. The rheumatologist says I will never get rid of it because of my compromised immune system and I am on permanent nerve suppressant painkillers for that and back pain.
I have given up with other people and now take my advice from my medical team, the health professionals and Blood Cancer UK.
I sometimes feel my husband does not take my health seriously enough, and goes around with his head in the sand, we cannot win can we.
Enjoy your golf and walks, I love my fresh air and walks and the best exercises you can do, in my view.
You must really miss your family, take care and keep posting

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I lost my 20 yr old son Joe to suicide in November last year, a terrible shock to us all and I knew from the moment the policewoman told me, that life would never be the same.

Somehow as a family we got through the following months and then in April 2021 I was diagnosed with acute lymphoblastic leukhemia with the Philadelphia cromazone.

We had been walking in Derbyshire the previous week and I noticed some bruising on my lower legs. I thought I had just been extra clumsy. When we returned home we had planned a longed for get together on the Saturday with my daughters, their husbands and my grandchildren. This was our first time to be together following lockdown and since we had lost Joe.

My daughters all commented on my bruising and insisted I should get it checked. I had convinced myself that it was a side effect of the Astra Zeneca vaccine I had recently had. On the Sunday morning as I got out of the shower I tapped my elbow on the shower screen and a dark red bruise appeared. I decided this was a bit a odd and took myself off the a&e to get it checked, leaving my partner cooking Sunday lunch.

After waiting for a while to be seen, it was at last my turn to be assessed. I explained that I had recently had the vaccine and that I had noticed this bruising. I was fit and well otherwise. They took some history and bloods and left me to ponder what was happening. I was sending texts to my family not to worry, I am sure I would be home soon.

I was told about 9pm that I would be staying in for more tests as my blood had shown up something. During the night I was transferred to an Oncology ward and I think I realised then that this might be more serious than I thought. I was seen first thing on the Monday by a registrar who said he wanted to do a bone marrow biopsy. I had no idea what this entailed but agreed anyway. I was still going on about the vaccine to him and asked did he think there was a link? He said not and told me then that he suspected a blood cancer which the biopsy would confirm. I was pretty stunned and started googling blood cancer. I had no knowledge of this and wanted to understand what this might mean for me. I remember being so sad telling my partner and my girls what was suspected. After all, hadn’t we all been through enough.

Due to COVID I was allowed no visitors.

Later that day the registrar returned with the news that it was Acute lymphoblastic leukaemia but that it was very treatable. I asked it I could FaceTime my partner as I knew I was not taking in all this new information . We FaceTimed my partner and the registrar told him what they had found and agreed for my partner to visit straight away. The registrar hung around so that he could meet with me and my partner and explain what was to happen. I was so grateful to him for that. The hospital also agreed for my daughters to visit so that we could explain to them what was going on. I think the hospital made allowances as they were aware that we were also grieving for my son.

I was started on steroids and chemo that same week as an inpatient and then allowed home. I still felt absolutely fine.
It was strange telling friends and family and I felt kind of embarrassed. They had supported us through the loss of Joe and been such a constant source of support to us all. It felt strange now having to explain I had cancer.

I am on the UKALL14 protocol and about to start my last block of chemo before a stem cell transplant. I feel like my life has been turned upside down during the last 8 months and nothing feels the same. I am having my transplant at Addenbrookes under Dr Charles Crawley, who I have met and am told is fantastic. I have had wonderful care from the lovely oncology nurses and have been lucky so far that I have not had too many problems with the chemo drugs.

I understand that they are looking for a 10/10 match for me and they have some potentials they are working on.

I am just trying to stay positive with my lovely partner and family and trying to do everything I am told my the hospital.

I am not looking forward to the transplant or the recovery but I am looking forward to next year and getting back to some kind of normal life.

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@Summertime words cannot express how sorry I am that you lost your son to suicide, so sad and that you did not get a chance to grieve properly before your shock diagnosis., yes what an 8 mths you have all had, plus the pandemic.
One of the benefits of this forum is that you can honestly say your fears, thoughts and feelings, sometimes we cannot with our nearest and dearest. I also bet you are not the only one with those emotions and feelings.
Let’s hope a 10/10 match can be found for you soon.
Please let us know how you get on and look after yourself.

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Hi @Summertime. That is such a huge amount to go through im such a short space of time and I can imagine that you haven’t had time to grieve or completely process everything. It sounds like you have an amazing medical team around you which is such an important part of your journey!
Your family also sound amazing!
Please keep us updated on things. We are all here to listen and support you X

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How are things @Summertime? X

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Nichola75, Erica
Thank you both for your kind words. I’m doing ok thanks. It’s amazing how much you can cope with when you have no other choice😌.
I am getting closer to transplant and then I need to recover and get back to my family and my life. I know I have my grief to deal with eventually but just don’t feel able to go there at the moment.
It was the inquest last week. I didn’t go, I was in hospital having treatment but my daughters went. Such a surreal feeling.
xx

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Oh @Summertime yes, it is amazing how much you can cope with when you have no other choice, but that does not make it any easier and as you say it must be all very surreal.
Yes, this is a time to really look after yourself and build yourself up for your transplant, but perhaps also acknowledge it is so natural to grieve which can be completely exhausting.
The inquest must have been so harrowing for you all, whether you were present or not.
We are here to support you all the way and this is a place where you can really say how it is for you. I find I have shared things on here that I cannot with family and friends and I know nobody will try to fix me or judge me.

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