Originally I went to the doctors in May of this year with a tender right testicle and pain in the lower right hand side of my back. Doctor thought infection so gave me antibiotics for 10 days. The day after they ran out I was up all night with a pain in my stomach so rang the doctors in the morning and got an appointment that day. While she was examining me, poking and my stomach she pushed down on the front lower right and straight away I wondered what she hit. The next thing she's asking me how I got there and if someone could pick me up or whether she needed to get an ambulance. Luckily I rang my wife and she left work picked up our other car and came and took me to hospital.
Nothing happened that day but I had to go back the next day for an ultrasound then later in the evening a ct scan. When the results of the ct scan came back we were taken into a room an basically told don't make plans for the weekend. That is how it came across. My wife just broke down while I never really let it sink in. We went home and didn't hear from them for a week, due to them coming together to discuss their patients once a week on a Tuesday and we found out on a Wednesday.
When we did get called in the consultant we spoke to was a bit more positive but going by the ct scan which showed a fast growing tumour there was still something that could be done.
I got an appointment for a biopsy the following week and once they had the results of that it was non hodgkin lymphoma and not as bad as they originally thought. I was quite lucky in the fact I'm normally a happy go lucky person that doesn't worry about what might be because I could've spent all the time worrying about there worst case scenario. I was booked in for a pet scan a week or so later and by now the tumour was just growing bigger and bigger.
I was told I needed to have an ileostomy because the tumour was wrapped around my bowel but then nothing seemed to happen. I got an appointment for the 11th July to go and talk about having a bag fitted which wasn't what I needed I just wanted it done so I could get on with treatment. Luckily my doctor rang to ask how I was and if I was given any pain relief, which I wasn't. She prescribed me some and asked if I had any other issues. I told her about having to wait for the ileostomy which definitely worked for me. Within 2 hours of talking to her I got a call from the hospital asking me to come in the next morning to have the operation.
We were there from 7.45am to be told at 3pm that it wasn't going ahead that day. We went home very disappointed and from midnight till 4am I suffered with terrible stomach pain and in the end got my wife to take me to the hospital, later that day I had the operation and the stoma bag was fitted. I spent a few days in that hospital before being moved to one in my town. The next thing I'm wired up with drips and steroid treatment started before the chemo. They were hoping to shrink the tumour down but it started to break down, they did miss 1 treatment out on the first chemo because they wanted to go slow.
I came out of hospital on the Saturday, it's Thursday now and since I've been out I'm suffering with a bad back, lower right. Hopefully it's not kidney related. I have to drink 3 litres of water a day to keep the kidneys flushing through. I had an appointment booked for 1st August which requires a blood test before hand now yesterday that appointment has been put back a week and is now a phone consultation.
I received a call from one of the consultants 2 days ago saying that tge genetics test on my biopsy showed it was a little worse than they thought and instead of going to 1 hospital as an outpatient for my next chemo, I had to go to another hospital as an inpatient for a few days during each of my treatments as more drugs are needed. I still ended up getting an appointment come through as an outpatient, don't they ever talk to each other? I now have pills to take in the morning and inject myself with steroids, 5 day course.
Even though I don't let things get to me I still sometimes can't get my head around the fact it's real.
Hi Vic68 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your I do appreciate the challenges of this journey rather well.
Your journey actually sounds rather familiar, the diagnosis of Lymphoma can be difficult and is often initially misdiagnosed at the start so this often results in delaying treatment and communication confusion between departments.
Have you actually been told what of the 60 types and sub-types of Lymphoma you have?
What exact chemo are you having?
You will see from my story my initial chemo back in late Dec 2013 to April 2014 had me in hospital 5 nights/6 days on my 2 IV pimps 24/7 for my 6 cycles........ it's all a pain but needs must.
The drinking of 2-3 liters of water a day... every day is very important.... it is a mission to do it but it needs to be done.
Always around to help more or just to chat
