12th October 2012 – What I wouldn’t give for a full night’s sleep, if I could sleep this is something I would dream of. I have started taking neurofen plus at night which is helping with the pain but I’m repeatedly waking up spiking a temperature, at least 6 times per night. I am also getting really bad joint and muscle pains which I think is indicative of a low grade infection. I will know soon enough but I am managing on the increased dosage.
The other problem is weight loss which I’m sure will annoy people when I say it is a problem. I didn’t have that much extra weight to start with and I’ve now lost almost a stone. I look great, my face is a bit pinched and I really don’t want or need to lose anymore. My clothes are literally falling off me. I’m sitting here in a pair of jeans which are hanging! It is the one time in my life that I should actually be eating high fat, high calorie food but I can’t bloody well taste anything and therefore have no appetite. The nurse was supposed to contact me with an appointment to see a dietician, just to see if they can suggest other foods I can try – that hasn’t happened, why am I not surprised?
Then to further add to my litany of being poked and prodded this year I’ve been called to breast check today. I think it is a fantastic service and it has certainly caught many of my friends early. The last time I went I was recalled which put the frighteners up me as it was less than a year since my 5th MM. Thankfully everything was ok, they thought, they weren’t the most reassuring. Today should be fun – not! It starts with a form to complete which, if memory serves me right asks any recent surgeries, taking any medications etc. I’m going to go early as I suspect I’m going to be causing a few raised eyebrows. I questioned my oncologist on whether I should go at all, considering the scans in January and PET in April but he said it would make sure I’m still in the system which is important.
It was my birthday on Sunday and we had a lovely day out. I couldn’t help but think back on last year’s when yes I knew I had something funny growing but had been told it was nothing, so maybe I was just a little concerned but my memory is one of feeling so carefree. Little did I know what was ahead?
17th October – I’m sitting here absolutely steaming. Had my mammogram and tried to tell the nurse what was going on in my life this year. Really got the feeling she wasn’t that interested, only in any breast changes. She asked if I’d any weight loss, I replied yes loads since July due to the treatment. She said she was only interested in case my breast size had changed. Having been squashed and pummelled which brought tears to my eyes she finally said I was free to go.
Was I worried? No as I feel I’ve had enough scans etc this year that if there was something else there it would have shown up. However, I was surprised that she wasn’t more interesting in my surgeries this year and also in the fact that I’m on interferon. The only thing she wrote down on my form was that I was on interferon. I thought, considering my history, she should have arranged for me to speak to the doctor or at least taken some notes.
So why am I now steaming and raging? They’ve only gone and recalled me for breast assessment this Wednesday. Firstly I think this is a waste of time, secondly I feel that if I’d been taken seriously last Wed this wouldn’t be happening and thirdly I can’t attend. At 9 on Wednesday, same time, I will be getting my bloods for my oncologist done and getting my flu jab. I am surprised that they have recalled me so quickly, last time there was a 3 week break. Hubbie, meanwhile is away this week so I’m not going to tell him or the kids. No point in stressing everyone out!
4th November – Oh Boy was that a bad week and that is the understatement of the year. I got the letter on the Monday and proceeded to try to just get through things until my appointment on Wed. First up was the flu vaccine and the bloods. It took them 6 attempts until they could find a vein. I know they’re bad at the best of times but the nurse herself seemed to be getting more and more flustered. She asked me if I wanted to leave it for another day – eh no I can’t these have to get to my oncologist before I see him. Finally she called in a second nurse and first go and she’s in. Thank God for that! Then I headed over to BreastCheck. The last time I was recalled I brought my OH with me and he was the only male there, this time I was the only person on my own, there were 2 ladies with their doctors and everyone else had their partners with them. The heating was off which they apologised for, didn’t bother me as I was roasting at this stage! While I sat in the room and waited I wondered what everyone else’s story was and also how many of the group of us sitting there were going to leave after hearing bad news and have a tough few months/years ahead. Their lives, as they knew it, were going to change and I felt very sorry for them.
Not mine though! Another blinking cyst and again on the left side. They’re not worried about it, no need to aspirate except that this one is quite big; however, a decision is made that because of the risk of infection due to the interferon they will leave well alone. I skip out! Then world comes crashing down again.
I arrive home to hear that a pal of the boys has commit suicide. I am just so upset and in total shock. It wasn’t a first attempt, he and his family have their own problems but it is still a huge shock. He was found dead the morning after the debs which he chose not to attend, so sadly that memory will live with the boys for their lives. They will also have to deal with the fact that a classmate of theirs had commit suicide. The funeral was just heart-breaking, his mother was so strong, we all assumed she had taken some medication – she hadn’t, it just made us all the more upset. She spoke of her son and said that although she couldn’t sing, when he was sad she used to sing this song to him and he’d give her a kiss and a hug afterwards. None of us will ever be able to listen to it again without thinking of him http://youtu.be/I85ApzR43jU
When we left the service I got a genuine fright when I saw the boy, he was ashen faced and looked absolutely exhausted. All the boys were in bits and totally shocked and upset. It is very difficult to see a group of pals, all 18/19 years old on the brink of manhood and all in excess of 6ft tall so upset. Set off us mothers again. I spoke to him at length that evening and he really is shell shocked. He is clinging onto the fact at he saw his pal at a party a couple of weeks ago and he was in good form. He asked me what I thought of the Humanities service, the eco-friendly coffin and the cremation. Then I got the biggest shock of my life, this poor boy had discussed his funeral in great detail with all his friends and it went exactly as he wanted.
My Oh arrived home the following morning and the upset started all over again. He too is just shocked, dumbfounded and greatly saddened. This has not been a good week and seems to have been a trigger for bringing the black dog to my door. I’ll soldier on.
So back to the oncologist on 26th October and the news this time is
Neutrophils haven’t dropped significantly but still very low.
Creatinine levels up despite me trying to drink 3L a day they tell me to drink more agh!
Weight considerable and noticeable and now being monitored
Hair loss also noticed so also being monitored, told not to wear hats!
Sometimes people give up this drug because they cannot cope with the side effects sometimes their bodies can’t cope. He has never had a woman go as far as me before and only ever got 1 man to 9 miu’s and he lasted only a couple of days.
Plan now is to do another week at 6 miu’s, I started this dose on 25th September and this will be 6 weeks. On the 6th November I increase to 9 miu’s!!!! As I am always sick first week of a change in dosage and don’t really settle down until end of week 2 it was decided that I get my bloods done on week 3 and see him at start of week 4 unless I’ve to contact him otherwise.
He said I’m one determined lady – my response – you don’t live with this since 1989 without becoming determined!
So if my body accepts increased dose I’ll finish on 6th November 2012, if it doesn’t I’ll revert to 6 miu’s and finish on 25th September 2012.
Still sounds like a crap way away but at least I know officially now there is an end date!
Not sure how I’m feeling about it all to be honest, they’ve given me a script for solpadol to see if that will help the joint pains at night – they are pretty much all over now, can cope ok during the day but pain wakes me at night. Food has turned into something akin to brushing my teeth, as in it’s something I have to do and make myself take at least a few bites. Wine thankfully still tastes fine but I’m a very cheap date as half a glass and I’m feeling it.
Would love a holiday, however, with the neutropenia I couldn’t risk a flight at the moment so I’m going to wait until I’m settled on some dose and then talk to him about trying to get away for a week. Sun would be lovely as dampness here isn’t helping with joint pain.
Oh he lost me – I overheated so nurse opened door to courtyard for me to get some air and never told him where I was!!
I’ve been struggling now for a few weeks so yesterday went for a Reiki Healing Session. The girl, who was recommended to me, was very perceptive and intuitive and lots came up. To be honest I am not sure how I feel today. I need my mojo back quickly. The Solpodol are helping me sleep better but 2 is too strong and I’m like a zombie in the mornings so have cut back to 1 with the interrupted sleep but I think it is better than it was.
So onwards and upwards from here on in. I need to get motivated again, I need to wake up every morning with a reason to get out of bed, I need to find things to do and quickly, I need to turn my life around!