Diagnosis, feelings, keep fighting

In February 2016 I was diagnosed with ALL (Philadelphia negative) after being unwell with flu and chest infections… this cane as a complete and utter shock to me as my brother had died aged 22 from ALL some 30 years before and I could not believe this could happen to us again.

After 3 weeks in hospital receiving platelets, transfusions and starting steroids and chemo (signed up to uk14 trial) I was discharged Home followed by phase 1 of treatment which was weekly chemo and steroids. After a 2 week break I began phase 2 which was the hardest, daily chemo and weekly lumbar punctures and also had a Hickman line inserted. At this point I was informed I was in remission and would need a stem cell transplant. My brother proves negative so a donor was being sought.

In May 2016 I began phase the final phase of treatment prior to my transplant which was 2 separate admissions into hospital for an iv chemo. Unfortunately at this point I declined a nasty infection from my Hickman line which required another week in hospital for iv antibiotics.

In June I also received the news a donor from Germany had been found (100%) match! I was admitted into the queen Elizabeth hospital in Birmingham in July 2016 for my stem cell transplant. This was very difficult, firstly to be away from my children and husband yet again for 3 weeks and secondly because I felt so well at this point and knew they were going to have to make me feel very unwell in order to get me better for the long course.

I underwent kidney and respiratory tests to check I was healthy enough to have the transplant then one week of chemo and other medication to prepare me for the transplant. On the 12rh of July my donor cells were flown in from Germany and at 9’pm I received my cells via an iv drip, to be honest this was an anti climax! It was no different from any other transfusion except I knew this one could be the start of my cure!

The day after my transplant was the worst with nausea and exhaustion I had never felt before! This was the only one and only day I couldn’t get up and shower, I just had to sleep! Following this I gradually improved and on day 14 post transplant my neutrophils suddenly kicked in and I was allowed home!

I then went back to clinic weekly for bloods and also 3 monthly bone marrow biopsies and lumbar punctures, my strength gradually returned and I felt I was finally getting “my life”’back again which had been rudely and abuptly taken from me some 12 months prior.

In September 2016 I developed graft versus host disease with a rash, terrible itching, hair loss (again) flaking and red skin and severe chills but after 2 weeks of steroids this improved and by December 2016 I felt great. My energy levels and hair weee coming back and I started to feel really well.

In March 2017 I unfortunately picked up chicken pox and shingles but again after medication recovered well. In April I went to Tenerife to renew my wedding vows and May 2017 Disneyland in Paris. We also then had a lovely summer spent at our home in Warwickshire and our caravan in Stratford upon Avon.

In October 2017 a few weeks after my 3 monthly bone marrow biopsy I received a call to attend clinic the next day. As a medical secretary I know being called in the next day is never good and I was right! I was called in and informed my acute leukaemia was back and I would need to go into hospital the next week for a new treatment… we were absolutely devastated and in complete shock as I felt so well and my bloods were so good… my consultant was also confused and asked me to have another bone marrow biopsy the next day to be sure. I was told these tests are never wrong but something didn’t feel right… we cancelled our planned holiday we were due to go on the next week and broke it to our 3 children again that my blood was poorly and yet again I would be away from them for another month. This was the hardest point out of the last 2 years and I hit an all time low, I felt I could no longer go on and had no fight left in me to keep going… luckily I have a great GP who got me on anti depressants immediately and referred me for counselling.

I returned to clinix a week later expecting to be told I would be admitted that day for treatment only to be told a mistake had been made and in fact I was in remission… I know I should have been jumping for joy but I was shell shocked so now again I had to get my head round I was now in remission. I was told to go home and not worry and rheysnsee me again in 3 my months.

Two weeks later I was called into clinic again only to be told on further testing a gene had been picked up, my transplant was failing and there was some kind of slow growing bone marrow cancer but they couldn’t be sure what it was. The following day I underwent her another painful bone marrow biopsy and after a frantic two weeks of worrying was told they had picked up a form of chronic myeloid leukaemia and would apply for funding to see if I could be prescribed the target therapy imatinib. After waiting a month for the decision we received the news I could have the treatment and have been on it now for 6 months. I have been told this is a treatment not a cure and the cure will be further donor cells which will be given if and when I’m in remission again. I go for a bone marrow biopsy in September to find out if I am in remission and if I am my top up donor cells will be given in October, my consultant is fairly hopeful I am in remission as my bloods are good but I won’t allow myself to get excited or hopeful any more as I vantnout myself through the disappointment again.

However I feel great, I live every day to the full, I’ve just come back from a great week camping in Cornwall and WILL NOT allow this retched disease to control me or stop me from doing anything, it can do one!!

I eat well, I take daily supplements, exercise and drink fruit smoothies daily packed with vitamins and live my life as normally as possible… keep fighting we can do this! Xxxx


Hi @Julesmcneill , just to let you know I have read this post from you and that I have responded to your other post, keep fighting and having varied and various holidays, take care.

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Hi @Julesmcneill. I have just read this post and you have certainly been through the mill. I know several people having treatment at the QE and I think you are in very good hands. I hope that you continue to stay in remission and the top up donor cells help. You have a fantastic attitude. I hope your family are getting any help they need too.
I don’t know whether you live near Birmingham, but the Impact Day is on 15th Sept for giving those affected by blood cancer a chance to meet and chat. Further details are on the Bloodwise site.

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Hello @Julesmcneill,

I would like to thank you for sharing such an incredible post with us. I just wanted to follow up with you regarding your clinic visit. You informed us that you were told that you needed further testing and a gene had been picked up and possible transplant issues. How is everything going now?

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Hi Joshua, lovely to hear from you. All good at the moment, had my bone marrow biopsy three weeks ago and just waiting to hear if I am in a deep remission which I will find out in a couple of weeks, if I am then the next step will be more donor cells to “finish the job “as my consultant puts it! Have a few side-effects from the imatinib with fatigue and some joint aches and cramps but nothing really I can complain of compared to what you go through with chemo! Will keep you posted thank you again Julie x


Yes, Julie, please do keep us posted on how you are thinking and feeling and your bone marrow biopsy results and the next steps. It will also be interesting to hear others experiences.


@Julesmcneill that is so good to hear! I am so pleased to hear everything went smoothly for you and hope that you are in deep remission for the next steps.

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Hi Julie, I just read your original post (I appreciate it was months ago now) and was blown away. Thank you for sharing your story, it was so moving and beautifully written. How are you doing now, all these months after treatment? We would love to know how you are if you’re able. Wishing you well.

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