Four pictures that represent chemo 4 day.
Me and Nin waiting in the waiting room. Sometimes you might have an appointment at a set time, but actually wait a little longer to be rigged up for chemo. ⬇️
The invaluable work the nurses dispensing the drugs do. Double checking the drugs and signing acknowledgement that I’m receiving the right stuff! ⬇️
The obligatory time captured forever. ⬇️
Needed my lolly to get rid of some of the yucky taste with the drugs ⬇️
So chemo 4 went quite smoothly. Nothing major to report at all. The next day we headed back to the hospital for the PEG filgrastim injection and then headed home. All very normal and uneventful.
I was ok for the Saturday and Sunday. By Monday the effects of the chemo usually kick in and I had a lazy day in bed. I think Nin even went to a Mason’s meeting, but I’d stayed in bed doing next to nothing.
On the Tuesday 5th Dec, my friend had come to the QE for an assessment. So I had said I would pop over to the Heritage building (where I had both my surgeries) and spend the time with her. Nin had flippantly said to keep monitoring my temperature and if I felt it go high, it would be easy to pop over to 622 for a check up.
I was ok for the most part of the visit to see my friend, but just after lunchtime around 3pm, my temp started to rise. I didn’t feel particularly unwell but did notice I was feeling hot. Checked it again at 4, 38.4 degrees. So I had to call the unit who asked me over.
The long walk over. The link bridge from the Heritage building to the main QE.
Once I got to 622 the nurse was waiting for me. She took some bloods and I waited for the results. Nin was making his way over with my bag of things just in case I needed to stay over.
Nin arrived and we stayed in the assessment room and the neutrophil count was around 11. So pretty good. The doc looked at the results and asked me to go have an X-ray done. I think he wanted to make sure I didn’t have a chest infection. The X-ray came back clear and my temp had settled a little so he sent me on my way with antibiotics to take, three times a day. He said keep an eye on your temperature and if you feel unwell, call. My temp was around 38.1.
On the 6th Dec I woke up and Nin had gone to work. I took my antibiotics as instructed and sat down in the main room. I did feel peeky and kept checking the temp. It was going up and I began to feel unwell. I had messaged Nin’s son Amandeep to ask if he was about and would he be able to drop me to the hospital if need be. I took my temp again and it hit 38.7, so I rang the ward and as predicted I came back in. Amandeep dropped me off, my bag was packed with 6 days of heart pills and I thought, here we go again.
When I got to 622 bloods were taken again and my neutrophils had dropped to 3.64. So the day before they were 11 and dropped more than half! I knew I would be admitted. By the time Nin arrived from work I was being given IV antibiotics and a bag of fluid also.
I wasn’t feeling so enthused about staying overnight again but I guess it was needed. I was moved into my own room, number 1 and before moving over, Irina and Richard popped over to see my from the Heritage Building where she was staying. We had a lovely chat and then at about 8:30 I said I felt tired and needed to sleep. Nin went home and Richard drove all the way back to Shrewsbury.
You never ever sleep well in hospital. I was on IV antibiotics every 6 hours and then the nurses doing observations. My IV Drip stand bleeping when the bag was running out! Then at 6am time to take bloods and give me more antibiotics! Above is a 6am shot on Thursday 7th Dec.
I did have a nice view from my room. I could see right over to the cancer centre and the Heritage building where Ira was. Strangely enough I didn’t feel so alone knowing she wasn’t too far away and we kept each other company by texting each other.
I don’t think much happened between Thursday and Saturday apart from my neutrophils going down to 1.7, the. 1.1 on the Friday! Little did we know what was going to happen next.
I was extremely tired and I remember one day, I think it was the Friday and Nin came to see me and I was sleeping. He took a picture and that upset him. I guess seeing me so helpless was very different from the person he knows.
I know I wouldn’t be going home before the weekend, as I was on round the clock antibiotics.
Dr Shah visited me each day and things were level! Everything seemed normal. Nin came to visit me on the Saturday 9th Dec and I walked him down to the main entrance to see the lovely Christmas trees they’d placed there.
When I got back to the room I began to feel cold again. Unfortunately for the whole of Birmingham, the snow had began to fall and roads and access to the hospital wasn’t great.
That evening my temp spiked at 39.1 I had a very high grade fever. I was given paracetomol to help bring the temperature down. During that first episode I remember sitting up in the bed and all of a sudden a load of people were around my bed. I was saying “Waheguru Waheguru Waheguru” and as I looked round the room, I didn’t know anyone. I saw people with sad faces, some were crying and right opposite me, straight in front of me, stood my Mammaji Kewel Singh Rehal. As I looked at him he did one of his infamous gentle kind smiles and said in Punjabi “Jitha, this is not your time to come home”. When he said that, he smiled again, I smiled at him and laid down and went to sleep. Now whether that was a dream, hallucination or what, I understood the message. All I know is that when I saw him, I felt a great sense of peace.
The next day (Sunday 10th Dec) it had been snowing so heavily in Birmingham.
Nin had began to make his way by walking to the hospital but the snow was so thick. I had spoken to him and said to stay at home and rest. By about 11am I was really feeling down and Nin called again to say he was on his way again. When he got to me around 12:30 I was relieved I had him with me. It was very short staffed on the ward and having him with me was good. When he left I had another episode of high temp! I was sick again. Same thing. Shivery. Then headache and neck and base of back pain. Then sick and a temp of 38.4. This time I also had chest pain so used my GTN spray. Again more paracetomol.
The next day – Monday 11.12.2017 Dr Shah came in early and we talked about the high temp, being sick, hallucinating, stiff neck and immediately alarm bells were ringing for them. He explained he wanted to do the following over the next week or so to try and find the source of this infection:
ECG, possible lumbar puncture. Swab on the PICC line. Sputum sample from the morning. If I spike a temp again to take peripheral bloods too. The possibility is an infection of the brain or the heart valve. CT scan of the brain also. X-ray as they can hear crackling on the right lung
OH HECK!!!! They think I have meningitis!!!! So that was it. No one was allowed to visit. Not that they came. The snow prevented that!
During the week I had one lumbar puncture attempt on the bed in my room.
Nin took a pic of it after they’d tried doing it.
As they couldn’t access the spinal fluid I would have to have another one done in theatre. The day I had first lumbar puncture was the day I was supposed to see the cardiology team in out patients. But the team had arranged for a member of the team to come and speak to me and they said they wanted to check the condition of the heart valves. Ok great. Another scan and this was supposed to be done using a camera down my throat!!!! I wasn’t looking forward to that.
First the CT with contrast of the brain, that took place on Monday 11.12.2017. The results came back clear with no swelling or tumor noted in the brain.
I caught a lovely sunset that evening too.
Later on that day, they came to get the junior lady doctor came to take pheriperal blood. Ouch and ouch! Two attempts and she got enough for the cultures. That was to see if there was an infection in the blood.
The next morning 12.12.2017, I’m beginning to look a bit knackered. I was taking to Irina and took this pic of me.
Still on antibiotics!
Still with plenty of sick buckets for me, just in case!
On the 13.12.2017 I was wheeled into theatre for a second lumbar puncture. This time it was done by a more experienced anaesthetist who got it first time. I was pretty scared having it done. Both times I cried!!!
Here’s a pic of me in recovery afterwards.
I had a lovely nurse looking after me in the recovery area. She was from Sri Lanka and came over 20 some years ago with her hubby. She was telling me she prayed so hard to have her first child and her prayers were answered. Such a lovely person. She also said she’d say a prayer for me.
The next few days were filled with IV antibiotics and fluids! Practically around the clock.
My sister Mini came over the weekend with food 😀 and a new hat.
Here’s Nin, enjoying the paratha Mini made for him!
I started collecting pictures of my bruises as at some point my PICC line wouldn’t allow blood to come through! How bloody frustrating was that! They tried everything to get it going but it just didn’t work. So here are some nice bruise pictures:
I also started collecting the tubs they dispensed the tablets in!
On the 15th Dec I went down for my CT scan. Nin was with me as I didn’t want to have that done on my own. Well you go in unaccompanied. But I didn’t want to be alone when they gave the results. So we’d come back up to the room around 3:30pm and had something to eat and we’re drifting off when Dr Shah and the lady doctor came rushing in. He said they’d found a mass on the right breast and wanted to examine that side.
He examined me and said it was red and discoloured CT scan just shows the thickening in the right breast to be investigated by the breast surgeons. The CT guys had said it looked like more cancer. Nin and I were in shock! More cancer! That quickly! I’d noticed a change on that side myself and explained to Nin about it. He said it looked angry and inflamed. So Dr Shah booked me in for Monday 18 Dec to see Mr Basu. The breast surgeon who did my surgeries.
Feeling mega fed up!
On the Monday 18.12.2017 they decided to take me off the IV antibiotics and monitor me for some time. It seemed my blood results had improved and no raised infection markers.
So the bloods were fine, pheripheral and from the PICC. No infection noted from the PICC. No infection detected in the sputum, urine, spinal fluid (meningitis negative). X-ray was clear, slight crackling but nothing more. The CT scan had shown no further black spots in the liver, kidneys, lungs or left breast.
So the I was waiting on the heart scan and the examination from Mr Basu.
I was taken over at 12:30pm and Mr Basu checked me over. He said he’d looked at the CT scan and thought it highly improbably for it to be recurring cancer. He said there was a mass in the exact same place as the tumor that was removed but he didn’t think it was cancer!!! Famous last words. He noticed the redness on the underside of the right breast and the thickening of the muscle around it. We spoke about options but he said he wanted to see the heart scan results and see if that is where the infection is coming from! He said if those results are clear then he would organise a ultrasound guided biopsy to be done to investigate what the mass is. When I came back to my room, I will admit I cried! Cried because of what it might be and what it would mean to me. Nin and I had already spoken and I’d said if it was cancer then I would have a mastectomy.
So the last thing was the heart scan. Porscha did my heart scan. That I had on the 20 Dec.
Lovely Philippino lady with two kids.
We spoke about when she came here from the Philippines and her kids were small.
She and her husband got a job here and she spoke about leaving her kids near the wall of the school so that both her and her kids wouldn’t be late. She felt heartbroken that she had to leave them there when they were little. Just so they didn’t get late or that she wasn’t late for work. Bless her. She told me the two times she’s been back to the Philippines that her father was diagnosed with cancer on the first one and he subsequently passed away. The second time she went back her mum had a stroke. So she felt it’s a lot of a coincidence and feels apprehensive about going back.
Once the heart scan was done, I thanked Porsha and was whisked back to my room on the ward.
Again another cry!
The next day 21.12.2017, Kiran came over and said the heart scan was clear and he’d organise booking me in the for ultrasound guided needle biopsy.
Mr Shah also came over and agreed as I was clinically well that they could send me home. Great news.
Mark took out my PICC line which took all but a couple of tugs.
So after all that, no source of the infection could be found. The only thing they could deduce was that maybe the cancer itself was causing the infection. All other results were clear! Except for my shortness in breath which I believe is heart related!
So on 3rd Jan I go back to the Oncologist to discuss next steps! Oh I’m not looking forward to it but do know my right boob is getting more red and sore and growing bigger!
In the 15 days I was in hospital I’d lost 5kg in weight!
Here’s a final picture for this long chapter as to when I was released from hospital! Yeah!