We often hear from people who have recently been diagnosed and are in shock, and feeling overwhelmed at all the leaflets and information they’ve been given. What helped you in the early days and weeks following a diagnosis? What didn’t? What would have helped, do you think?
Hi Dawn, I was diagnosed in 2003 with CLL and I can remember that moment vividly today, but I felt in a bubble and I was in complete shock, fearful and anxious and I think one leaflet set out in bite sized bits of relevant information to early diagnosis to read might have helped in the coming days or details of the Bloodwise website. When I am in that amount of shock not a lot of information goes in because my thoughts and feelings are in overdrive. I could not explain to family, friends and work what I did not understand myself. Information I could have given family, friends and work to read would have helped.
The watch and wait concept did not appear logical, why was I not being treated and then life could return to ‘normal’ like most conditions. I think a Bloodwise Buddy would have helped me, I do not think I would have known what support I needed from the Support Line.
Hi Erica! Thank you for talking so honestly about your feelings following diagnosis. I think your experience of not being able to take much information in is a common one, and totally understandable given the diagnosis you had just been given. It’s interesting you mention not knowing what support you would have needed from the support line - I wonder if others feel this too? Bloodwise Buddy’s sound like a fantastic idea! Something for the future!
Yes, I also think Bloodwise Buddies are a brilliant idea and you have also come up with the perfect name.
During your experience, did you feel overwhelmed about the information given?
What helped you in your early days and weeks following your diagnosis?
Because my GP was so incompetent in dealing with my reoccurring sinus infections I saw an ENT Consultant on a private basis.
I saw him several times in 2013/4 and he suggested that I had something wrong with my immune systemGP.
My GP ignored this so I asked him for a FBC.
A GP at the same practice saw the results before he did and phoned me late one Friday night to tell me I had a bone marrow problem. I saw my GP on the Monday and he dismissed my suspect blood counts and told me there wasn’t a problem.
I went straight back to the private Consultant who referred me to a Haematologist, again on a private basis.
I saw her the very next day, she took blood tests on Monday a bone marrow biopsy on Tuesday and told me to come back on Friday for results.
She initially thought I had Aplastic Anaemia, and gave me a lot of information about blood cancer.
I was forwarned that I had a serious disease, but when I returned fo the results and learned that I had MDS RAEB2 and it was incurable was a real shock.
I have depleted my savings paying for private medicine, to get a thorough diagnosis within a week was worth every penny. If I hadn’t I’d be dead
I remember the day clearly November 28th 2014.
The Haematologist gave me a lot more information and arranged to start me on Azacitidine in January 2015, this time on the NHS.
One thing she said to me before I left her consulting room was “ don’t do anything silly will you?”
It wasn’t until I was driving home that I realised she meant don’t commit suicide!! No chance of me doing that!!
I was furious with my GP and complained to the practice manager, that was a waste of time.
To tell the truth I was filled with anger an self pity, I wallowed in both for a long time. I still have periods of self pity and fear but overcome that.
I have 4 children who expressed concern for a few weeks and don’t even contact me anymore, the only real support I get is from my ex wife who is my best friend.
The fact that Azacitidine is only effective for 1—5 years does worry me.
As it has a less than 50/50 chance of being effective I consider myself very lucky that it’s still working for me. Long may it continue to do so.
The Haematologist who gave me my diagnosis/prognosis still supervises my treatment and the fantastic team at the clinic are beyond reproach.
The only side effects I get from Azacitidine are slight soreness at injection site, fatigue and aching limbs for a few days after each cycle.
My lifestyle has undergone a drastic change, avoiding infection, crowds and avoiding certain foods.
I walk a few miles everyday, eat sensibly and try not to worry what the future holds.
On a lighter note, s*** happens to all of us in one way or another.
I’m just happy to survive.
I should have mentioned that it was anger at everything that helped me at first, I couldn’t help thinking this can’t be happening to me.
I got rid of the anger a long time ago and just concentrate on enjoying the time I have left.
I spent some more of my savings too on things I always wanted.
After all we save for a rainy day and we’ve got it now.
Hi Blackhat, thanks so much for taking the time to write your blog, I really related to a lot of it. Although I am useless at realising my anger, I always have been, I swallow it and it comes out as lots of other emotions, not a very good idea. I know the self pity though which comes out in me alone behind closed doors. I also know the feeling of people of people swarming around initially and then disappearing. I now know who my good friends are and they really are very special good friends. If I am in a crowd, I go on a lot of buses, I try and face the window and stop breathing if someone coughs or sneezes. I also try and find the funny side of things and always have a tune playing in my head. Yes, I am happy to survive, take care of yourself.
Thank you so much for sharing your experience with us. I am sorry your GP couldn’t help you properly when diagnosing you with MDS RAEB2 and you had to seek a second opinion regarding your symptoms.
If you could share with the Online Community Forum any advice you could over to people in similar situations?
That’s the way to go Erica.
Never lose your sense of humour.
Don’t think of yourself as being ill and give into to it.
I’ve seen too many patients in the last 47 months who have just given up. In fact I don’t even sit in the waiting room if I can avoid it. I arrive at the hospital in good spirits and seeing all those gloomy expressions is a real downer.
I wander all over the hospital and have made a good many friends amongst the staff.
I’m on first name terms with many of the managers.
All my life I’ve been in situations that I’ve managed to overcome, not this though.
Always make an effort to look good and that makes you feel better.
I’m 74 but I wear colourful clothes. I’m never going to wear beige, cardigans or sandals with socks.
I can’t say I enjoy what I have but I’m not going to give into it, ever!!
Self belief is a huge help, always believe in yourself whatever the situation.
What doesn’t help, is people saying “ we all have to die” or “ you could be worse off”
Hi Blackhat, I am not particularly a poetry person but there is a poem by Jenny Joseph called Warning which I immediately thought of when you mentioned colourful clothes. I do not want to leave you with an enduring image but I go to the gym and do classes a lot and live in my red Bloodwise tee shirts and leggings and really garish socks and trainers. I mostly do pilates and Zumba classes, the advantage of having more of life’s experiences is I do not care what I look like now and I am shaking bits that have never been shaken before. Take care
Thank you for speaking openly about view inside the hospital. I think your experience of seeing people in the hospital look upset is quite a common. Would you recommend people tour the hospital?
Thank you for your message Joshua.
I forgot to mention that I’m a member of the Patient Focus Group organised by the Lead Pharmacist, a good idea in theory but not in practice.
It’s attended by a few cancer patients and senior staff members.
Unfortunately a lot of the suggestions put forward involve a cash input which wouldn’t be sanctioned by the hospital management.
I’ve missed a few of the meetings because of other commitments and fewer staff now attend. Obviously nursing duties take priority.
One good idea which helped for me was having a tour of the Pharmacy Dept and Aseptics Dept. Through this I learnt the whole process of my treatment from manufacturing Azacitidine to point of delivery.
I got to know all the senior managers and the Chemotherapy Matron of the whole Trust.
They also got to know me as not just a number but a real person, and I’m now on first name terms with them all.
I’m not at all sure if other blood cancer patients in other hospitals can access this sort of personal dialogue with senior staff, because you are no doubt aware how impersonal hospital can be.
The tour around the Pharmacy Department and Aseptics Department sounds like a great idea for people in the Online Community Forum.
Hi. When Andrew was diagnosed with ALL we were given lots of print outs from macmillan website about his port and the chemos he would have. We still have them now and referred to them sometimes to check expected side effects. We felt isolated and we pleased to be added to an on line community to chat with other parents going through similar experiences. We scrapped our calendar and started again so a new clar dar/diary would have been useful as well as all the info in one handy place.
We had an usborne ‘body book’ with a page which explained about blood and red and white blood cells, we used it to explain that Andrew’s blood was poorly.
for the print outs from macmillan, do you think they were very useful? The ‘body book,’ was the book quite simple to explain it to children?
Thank you so much for sharing and it is really positive to hear how you have educated yourself in your blood cancer experience. I am so delighted to hear that you have built effective bonds with your treatment team. Not all people who are affected by blood cancer have that choice.
Effective communication with your treatment team is so important in feeling confident and comfortable with your care. Do you have any tips for people on the forum who are struggling with this at the moment?
I think this is a very valuable thing for patients to have the option to be part of. I know for me that knowing every single detail of my disease as well as the drugs, treatment etc has helped me deal with my diagnosis and what the future is for me. It has helped me to feel in control which has been very important to me. I have a good relationship with my consultant and have asked him many things via my CNS or when I see him at my appointments. Also through my role as a pharmacy technician I have a very good understanding of drugs and I used to work in a GP surgery so understand how the NHS works, I used to deal with discharge summaries, consultants etc and now have a great friendship with one of the GP’s I used to work with who is involved with Cancer care, is on panels for NHS departments and so has been able to help me understand the complicated workings of the NHS… all of this has been so helpful for me and I have used this knowledge to help many others whenever I can. @JoshuaBloodwise