I was informed of the chronic lymphocytic leukaemia (CLL) diagnosis on the afternoon of the 31st December 2014. My GP did not inform me that I was being referred for a cancer diagnosis. As I had ongoing medical issues, we went to the appointment with no idea why.
The doctor I saw was a locum whose manner left a lot to be desired. He said I had been referred as my white blood cells showed an abnormality and I had CLL. We didn’t know what he was talking about and had to ask what CLL meant. In a manner that struck me that he was thinking we were a bit ignorant, he said it stood for chronic lymphocytic leukaemia. Hearing the word ‘leukaemia’ was such a shock. He then went on to say that I would be put on ‘Watch and Wait’ and we were dismissed. A great New Year’s Eve that was!
Care Team, what Care Team? My GP did not contact me or any Care Team member, we were just left high and dry with the diagnosis. We had to look it up on the internet. My understanding from the internet was that one just waits until you feel much worse. I also rang Bloodwise. They agreed with me that the way I was informed about CLL was very negative.
There does not seem to be any Care Team that follows up a patient from diagnosis onwards in this area for CLL. My partner went through cancer treatment 10 years ago and the response from diagnosis onwards was totally different, albeit a totally different cancer. Why are blood cancer patients not treated in the same way? It’s like you’re told: “You have CLL and now go and get on with it!”
I didn’t tell my children or other family till the new year as we were so shocked. It wasn’t easy. My sister put the phone down when I rang her and then rang me back when she composed herself. It was a similar story with my children, other family and friends. None of them could believe how I was told and that there was no support afterwards.
I have not been on Watch and Wait long as I have experienced medical issues that caused the consultant not to be sure if it was CLL or another medical issue.
I would say I see the consultant every three months on average. The appointments are always in the hospital. I can tell how I am doing but it would be helpful to see the results of blood tests and be told what grade my CLL is. The hospital I attend has one and a half CNS nurses and they are so busy that I felt the first time I talked to one of them that I was taking up their time.
I have experienced many infections before and since diagnosis. I have been on Privigen infusions for about 18 months now. It started at six weekly, went to four weekly, then due to bad headaches back to six weekly. It is now back to four weekly but is infused very slowly to prevent the headaches, so I am usually in for a day.
Managing symptoms is not easy as I get so tired and achy. During the summer of 2017 I was quite ill and had a lumbar puncture which indicated that my bone marrow had 70% cancer cells infiltration, plus I have swollen glands in my neck and groin. At this time, I have still not been told how advanced my CLL is. I had two chest infections in December and a urine infection too. My partner has become a full time carer.
On top of other medical issues that I have, i.e. asthma; extensive osteoarthritis (needing a new hip which the Orthopaedic Consultant will not operate on until I see an Immunologist, which does not seem to be forthcoming); migraine; CVS (Cyclical Vomiting Syndrome), open angle glaucoma which is advanced in one eye, my life has changed beyond recognition since diagnosis. At that time, I was active with swimming and walking. I am fortunate to have a very supportive partner, but it has all taken a toll on our life. I cannot walk far and am cautious to apply for a Blue Badge as everyone has told me it is so hard to get. I have bought myself a mobility scooter but at the moment cannot lift it into the car so can only go around the village.
I have just been very sick and was discharged recently from hospital. I started FCR chemotherapy on Monday 29th January. I had told both the consultant and the CNS nurse that I had CVS and that Ondansetron worked best for me. They said try the Metoclopramide first, but I said that other antiemetics do not work for me. I do not know if chemotherapy medications caused the vomiting, but I ended up on the 2nd February telephoning the chemotherapy unit who advised me to contact my GP and ask for Ondansetron. I did this and my family collected them that day.
Unfortunately, I continued to be very ill, vomiting over the weekend, and rang the chemotherapy unit again on Monday 5th in the morning. I was admitted to hospital and put on IV fluids and Ondansetron straight away, and then moved to an Acute Medical Ward.
The vomiting seemed more under control by the Tuesday morning, but I was then whisked into a single room and was Reverse Barrier Nursed. From the Tuesday evening until the Thursday, I can only remember being violently sick, hot and cold in turn and had a temperature of 40 degrees, which I was told about on the Thursday. It really was a dire experience. I have since been told that I had sepsis, due to an unknown cause. I did not come home till Tuesday 13th February.
During this time in hospital the Consultant Haematologist I usually see, nor the CNS Nurse, came to see me. I did see one of the other doctors from the Haematology team, who I had seen two years ago and actually liked very much and she listened!
On the Tuesday prior to the sepsis taking hold, the Haematologist told the Acute Medical Consultant to discharge me as, according to their blood tests, I was okay. The Acute Medical Consultant did not agree due to the results coming from further investigation into the blood tests he had taken. That evening I went into an acute sepsis episode. My white blood count went down to 0 and potassium levels were not going up either; it was like that for three days. So, in addition to numerous IV antibiotics, Ondansetron, and fluids with potassium, I had injections for three days in my stomach to initiate my white cells to work and one to prevent blood clots.
Since diagnosis, my biggest achievements are: just being here; keeping my faith and sense of humour; supporting my children and grandchildren in any way I can; starting a little sewing group making quilted bags as gifts; completing a quilted bed cover and currently a quilted wall hanging.
My advice would be get support in any way possible. If you are fortunate to be offered support from a local hospital i.e. a CNS, take it.