Natalie Richards
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Diagnosis to Transplant

Natalie Richards
Posted by
16 Jun 2017

My Cancer Journey so far, from diagnosis to transplant.

At 28 years of age the last thing you expect is to find yourself sitting in a Heamatologists office and hearing 'I am just going to come out with it, you have Myelodysplasia transforming to Leukaemia'.  I was living a fabulous life and had lots of plans for my future, from that moment on and even still now my life was put on pause.  

Pre-Diagnosis

It all started in March of 2016 when I was admitted to Hospital suffering from Pneumonia, at a follow-up respiratory investigation I became aware of my blood results.

As a Senior Biomedical Scientist working in Heamatology and Blood Transfusion I noticed that I had a substantially raised Mean cell volume (MCV) one of the parameters of the Full Blood Count combined with a low Haemoglobin level (Hb). I booked an appointment with my GP in order to get this investigated, initial investigations indicated a Vitamin B12 deficiency, but since B12 injections falied to correct the MCV and I had a worsening Anameima I was referred to a Haematology Consultant.

You dont need to be a scientist to know when a Consultant personally calls you requesting a Bone Marrow Biopsy, things dont look great.The Biopsy was preformed in September and the diagnosis given in October.

Egg Harvesting    

I was diagnosed with my cancer before it had transformed into acute leukaemia. This provided me with enough time to be able to harvest my eggs prior to begining treatment. Both my husband and mum felt that subjecting my body to additional and unnecessary treatments was a bad idea but I chose to go against the views of my closest family and worried about there support.

I began injecting hormones late October and had my eggs harvested at the begining of November. What was supposed to be a simple procedure with a half day stay in hospital resulted in internal bleeding and nearly two weeks stay in hospital. Although my blood had been checked prior to my operation and the platelet count was within the normal range, the platelet function is not routeinly checked and so the inicisions in my ovaries made during the procedure took alot longer to heal therefore resulting in blood loss and alot if pain! 

Initial Treatment 

My Consultant Haematologist had decided that one of the harshest chemotherapy regimes would be the best course of action, due to being young and otherwise healthy he felt this would result in only needing one chemotherapy cycle in order to obtain remission. Although this prediction was correct, nobody was prepared for the subsequent infection which followed.

It is now thought that the internal bleeding as a result of the egg harvesting lead to a liver infection, which in turn resulted in a pretty rough 8 weeks in hospital for me during the first chemo cycle. I was initially keeping a diary of my experiences in hospital, the first few weeks detail pain below my ribs and temperatures of over 41 degrees! Before a gap of about four weeks in which I felt too unwell to record my experiences.

When I did feel able to write i couldn't put into words what i had been through. I recall being an in patient over christmas and new year was pretty rough, being one of only six patients on the ward my mom and husband did their best to ensure i didn't feel alone, they brought my gifts to my hospital bed, brought in a miniture xmas tree and decorated it.

The Nursing staff and health care assistants wore headbands with dancing snowmen and played music all down the ward. Xmas lunch and an evening buffet was provided in place of the usual menu but nothing mattered to me, I felt so unwell I had no interest.

My husband wanted to come bring in the new year with me in hospital the following week, but I was so sleepy I knew I'd never stay awake and so told him to stay at home, he brought in the new year alone. Typically patients subjected to the chemotherapy regime which i had experience a period of neutropenia lasting 21 days.

The period in which i was neutropenic was by far the worst period in my whole cancer journey including the stem cell transplant. The infection in my liver had started to take hold of me, I experienced a period of tachycardia in which my heart rate rose above 220 beats per minute. I was suddenly surrounded by alot of people and a defibrilator. A drug was injected into my line which would stop my heart for a breif moment.

The purpose of the injection was to reset my dangerous heart rate. I was given three doses before my heart rate returned to 120 beats per minute. Had the last injection not worked the defibrilator would of been used to shock my heart. I suffered with nightmares for the weeks following my ordeal and was unable to sleep for a substantial period of time dispite calming and sleeping medication.

As my infection was so serious I was transfused with 4 units of granulocytes over the new year period. As a Senior Transfusion Scientist who had over 6 years experience, I had never issued Granulocytes to a patient and so was very anxious about recieving the white blood cell transfusion.

After discussing my views with my colleague over the phone I discovered that the transfusion of granulocytes is rare, but often used in chemotherapy patients who cannot produce their own white cells despite a dire need. Around day 21 from the beginning of my chemotherapy regime my neutrophil count began to rise and with it so did my spirits and I began to feel better.

Round two! 

Before being sent home i was given the news that I would need a second 'maintence cycle' of chemotherapy. I had as planned obtained remission during the first cycle however as my recovery had taken longer than anticipated there was a chance that i could relapse prior to transplant and so the second cycle began.

Chemotherapy wasn't started until an MRI scan of my liver confirmed my infection had been cleared. The cycle was much more manageable than the first, although it resulted in another seven weeks as a hospital in-patient I was able to experience what chemotherapy was like without an underlying liver infection. I struggled to taste foods and experienced a few raised temperatures due to infection but these were managed with intravenous antibiotics and i was soon discharged, i was allowed two weeks of normality at home prior to being readmitted for transplant.

Transplant

It was back in November whilst I was recovering from egg harvesting that my sister called to confirm she was going to be my bone marrow donor. She was a 10/10 match! And as my only sibling I am very lucky that she is such a close match to me. I remember my family feeling relieved that I had a donor and my sister feeling elated at the opportunity to help try to save my life, but I felt scared. Having a confirmed stem cell donor made everything feel real to me.

I was admitted into hospital on the 20th of March to start my conditioning chemotherapy with the transplant planned for the 28th of March. Apart from servere mucositis lasting around five to severn days my transplant was pretty managable.

I remember feeling apprehensive about how I may feel during the infusion, but the small brownish bag of my sister's stem cells took around twenty minuets to infuse, a short chat with the nurse performing the infusion and it was over before I knew it. I had planned to have my family with me but it was sprung on me early on the 28th before anyone had got to the hospital! 

The days that followed the transplant I felt fine, around one week after i had a few days of tireness and inability to eat due to the mucositis. This passed quickly and I was released from hospital mid-April.

What's next? 

I am currently enjoying regaining strength and a sense of normality at home, i am waiting for my repeat bone marrow biopsy at day 100 and getting progressively nervous as it draws nearer. I am enjoying organising events to raise money and awareness for Bloodwise and see it as my personal mission to repay the debt I have to the national blood service by encouraging my friends and family to donate blood and platelets on my behalf.

 

Comments

16.06.2017

Natalie, I am so very sorry that you have had such an unbelieavble amount to cope with and go through. I can only imagine how immensely difficult this all must have been. Thank you so much for sharing your experiences, which I'm sure will help to remind a lot of people that they're not alone in what they're going through. It's really good to hear that you've got such supportive family around you, and I am so pleased to hear that you're regaining strength and getting back to a sense of normality. I hope this continues for you and that everything is onwards and upwards for you from here. Take care of yourself and remember that our support line is here for you, and your family, if there's ever anything we can ever do to support any of you, at any point. I've got everything crossed that your bone marrow biopsy on day 100 brings positive news for you, and wish you all the very best going forwards. Do keep in touch and let us know how you're getting on. Alice 

20.06.2017

I am amazed at what you have been through Natalie. It was lovely to meet you and your sister at Impact Day. I think it must have been even more difficult for you as you had so much knowledge about what was happening to your body and the treatment. You are a beautiful lady with a gorgeous smile. I will keep everything crossed for your biopsy. Take each day at a time. Wishing you all the best for a healthier future xx

20.06.2017

Natalie,  there are so many similarities in our stories but many differences too. I was diagnosed with AML in December 2014. I'm a bit older than you but at just 41 I was considered too old to have a transplant automatically and we attempted to get me into remission with chemotherapy alone.  I spent Christmas and New Year in hospital.  I also got bad infections and my final consolidation chemo involved an 11 stint in hospital suffering with sepsis and raging temperatures.  It eventually turned out to be an infected fallopian tube.  Unfortunately I relapsed very quickly so I had to have more chemo and a stem cell transplant.  My sister was also a 10/10 match! That was in Feb last year and 16 months later I'm still clear but suffering a little GVHD.  I'm also a Bloodwise ambassador and like you keen to help others going through this hideous experience.  Good luck with reaching100 days.  It sounds like you are doing very well and are in a good place mentally and physically to cope. Go easy on yourself.  Recovery is a long slow process and it will go up and down.  Try not to let the low points get you down. They don't last too long! Best of luck.  Perhaps we'll meet at a Bloodwise event one day and we can compare notes!

Aileen Lamb
20.06.2017

What a wonderful blog Natalie. I was diagnosed with AML in Sept 2015 and after four chemos, more 40 units of blood and around twelve of platelets I had a non-related SCT in Feb last year. 

Ive no idea where the past two year have gone, and your experiences brought back many, many old memories. 

However I simply wanted to say "go girl. You've got this". I had days where I questioned my ability to continue to get up, showered and out of bed.....but slowly, without me even really noticing it, things improved.

Improved so much that I am now back at work full time, travelling loads, planning my future and thinking...."well, that was a shocker......but now I'm getting on with living!"

Be good to yourself, look forwards, not back, and do everything you want to do whenever you get the chance. X

 

 

 

21.06.2017

Thankyou both Alice and Louise x

21.06.2017

Aawww wow there really are many similarities!underlying infection during chemo is no fun!!Glad to hear your doing well its inspiring....these sisters we put up with do have thier uses

21.06.2017

Thanks for your encouraging words Aileen. Great to hear your out and about and enjoying life. i like the sound of lots of travelling.I am seeing many status updates from friends on facebook jetting off overseas and it makes me wonder if ill ever feel ready to go so far afield away from hospitals i know and exposed to different bugs....then if ill ever afford the insurance. You had alot of blood! Geez you poor thing. I think i had abt 20 but taking my husband to donate for his second time tonight so will be giving a little back through him. Thanks for your kind words x

22.06.2017

Hi Natalie,

just had to let you know things do get better. I'm going to be celebrating 9 yrs post SCT, from my youngest brother, on 7th August. I was diagnosed at 48 with AML, had 3 session of chemo, where I was also lucky to go into remission on the first one but all my 6 & 9 chromosomes had changed places & so the prognosis wasn't the best. 

I had my SCT with my husband, father & brother present along with what seemed like half the staff. I described it as a sachet of smoked salmon, but felt a real anticlimax after the infusion.

 Nearly allowed home after 3 weeks but allergy to an antibiotic set me back 2 weeks.

I was told 'little steps' & its true! Don't push yourself in your anticipation to return to 'normal'.

As a little inspiration, I have been on 10 cruises since & seen some amazing places throughout the world. Life most definitely does go on!

Good Luck & i hope your recovery is uneventful.

 

18.07.2017

Thankyou for your message. Ten cruises sounds good to me!x