6 months All Clear

Yep. That's me.... Six month's All Clear. 
The trio of tests gave me the All Clear again (apparently, the most useful one is the consultant asking how I am (..."ok thanks.", "Great, you're all clear", "Ok")

Dr Bishton reminded me that we're half way through the first year of All Clear-ness at which point, the likelihood of it returning diminishes vastly. Also, that if I said I wasn't so good then he'd be concerned but if, in four years time, I said I wasn't very good, then he'd just tell me to go away since I'd be just like a 'normal' person.  So I'm pleased with today....

... to put it rather mildly. :)

Merry Christmas

I'm at the age where I tend to play down birthdays and Christmases and since my All Clear in October I've had (objectively) quiet ones, but actually a part of me is marking these events with that release of adrenaline one gets in the upper abdomen sometimes. I see that these were events that, possibly (25% chance), I may not have seen. So, I may not be out clubbing for Christmas but I'm internally, quietly, but exhilaratingly, celebrating. Not just Christmas (whatever that means), but being here, with my family and friends and trees and everything else in life.  

Totally feeling very John Denver. https://www.youtube.com/watch?v=k9Gh6dn7hzQ

Ankh

My PICC line was an extension of my inner upper left arm from February to July and became a symbol of my cancer and its treatment. I wasn't allowed to have any physical intervention (the dental hygenist turned me away) for at least three, and ideally six months after my last chemo. So to mark my 3 month All Clear and not having cancer in general, I took my children to see me mark the place my PICC line had been with my first and only tattoo. It is based on the Egyptian hieroglyph, "Ankh", meaning life. I've tweaked it to make it curlier, longer and to embrace the PICC line mark

'Embrace Life' tattoo commemorating the mark left by my chemo. You can't see the dot from the PICC because of the camera flash but its still there in the uppermost loop.

3 Months All Clear

I'm not convinced by the tests; 1 - a blood test, 2 - "How are you?" and 3 - a feel of me, but that's how it's done and since they say I'm still all clear,  I'm 'avin' that. Yayyyy!

ALL CLEAR

 Well. It's taken some time coming but at least it came... I got the 'all clear' today. I officially no longer have any lymphoma. :)

Me with my certificate, my mum and some of the nurses.

Any ideas for presents for the wonderful nurses who saved my life would be appreciated. (A box of chocolates doesn't seem to do it justice really!)

No News is Good News

Hi. well. Again, no posts for a while here but that’s because not a lot has happened recently. I had another pent neb and weekly dressing changes and frequent blood tests but nothing new particularly. I’m taking all of this as a good sign. Since the ‘bonus biopsy’ two weeks ago, I haven’t heard anything and (surely!) they’d have got on to me if it had come back as showing cancer. they’d said that if it was then they’d be giving me radiation treatment and they haven’t said anything. I'll find out for sure on Wednesday when I have a results meeting. This time they only have to do 1% as they’d given me 99% all clear at the last one. So I'll let you know. In the meantime, I'm still in limbo.

Bonus Biopsy

Further to Wednesday's inconclusive result and really very small white marks on the PET scan, I was invited to visit QMC hospital (everything else has been at city Hospital so this was a change of scene) for an ultrasound view of the inside of my neck. This was to provide a more detailed look to try to identify whether the areas that showed up white on the PET were lymphoma or just a wonky thyroid (my words, not the doctor’s). The sonologist said it probably wasn't anything he’d normally worry about but given my recent medical history, he wanted to be sure by doing a biopsy. This was three ‘injections’ where he took parts of the lump out to send off and study. If you’ve ever tried to ‘just relax’ when someone pushes a needle into your neck, you’ll know that it’s not an easy thing to do. I have a bit of bruising now but hopefully the bit of missing neck is now in a lab with some scientists finding something conclusive.

Results

Well. I had been hoping to announce that I’m “All Clear!” but I’m actually “Inconclusive but mostly clear!”, which somehow doesn't have the same ring to it. The scan which showed lymphoma as white blotches all over the first scan, now shows just a tiny bit around my thyroids (neck) which was the biggest tumour. Apparently, the scan can produce a false positive when the thyroids are recovering or damaged and doesn’t necessarily mean lymphoma. The doctor said it was definitely 99% but further tests will determine if it requires more treatment or not. I will have an ultrasound scan and a biopsy to look into it further and probably some radiology treatment. Then I'll have a meeting in 3 weeks time similar to today’s which, hopefully will be more conclusive and add the missing 1% to my recovery. I’m happy with 99% but the wind is out of my sails a little!

Results Day

OK. So today is the big day - results day. I slept, but restlessly. Less than 2 hours until I find out if I have cancer or not! Did the 3 months of chemo work? I've crossed my fingers quite a lot over the last few months. Today is the big day. Update to follow.....

Final (hopefully) PET/CT Scan

My pet/CT Scan is to put radiation into sugar then inject it into me. The sugar clusters around areas of cancer and the radiation is read by the machine producing a 3D picture of any cancer in me. The previous scan in march was to determine how much and where the cancer was, the purpose of this scan is in the hope that there isn’t any. The picture is the doctor injecting the radiation into my arm. The yellow box has radioactive sugar into it which takes a few minutes to administer. I then wait an hour for it to reach every part of my body before the scan. I’m then radioactive and can’t be near children under 18 and pregnant women for a further 6 hours. Results in 2 days. Gulp!

"Hey, nice veins"

I've not been posting so often as I’ve had everything at least once and any treatment/experience I have are already mentioned in previous posts. In a nutshell I’m waiting for my final scan and results next week but in the meantime, I’ve had 2 outpatient rituximabs and a pent-neb as well as regular blood tests - the nurse was in awe of my ‘lovely veins’ (haematology was obviously more than a job to her), she was very complimentary of my arm and went to get her colleagues to show. It was the most unusual compliment I've had since the nurse at Toghill complimented me on the shape of my skull after I shaved my head. Both of these compliments were at hospital and would have a more worrying tone out of that context.

THE Date

I now have a date for my final PET/CT scan!

As a follow up to the previous post, in addition to the meeting on Wednesday 3^rd July, I now have an appointment for my PET scan on Monday 1^st July. This is the scan where they give me irradiated sugar and use it to look for cancer in my entire body. The results will be ready in time for the Wednesday meeting when they will tell me. Exciting stuff (not sure if exciting is the word actually)!

Endgame

The clinic meeting today with the consultant gave a bit of a clue as to when the end PET scan is as well as some more therapy. I have 2 more courses of retuximab on the next consecutive Tuesdays and another clinic meeting in about 3 weeks in which we will discuss the results of the final PET scan. This will determine whether I have cancer or not. I may also have another intrathecal injection before then. I’m hoping it won’t be necessary as I've been having headaches since the last one and I’m not really happy about more chemicals going into my nervous system. Either way, the final scan will be in 3 or 4 weeks time.

Ding Ding!

Ringing the bell was something that started in the children’s ward where they’d get to ring a bell to celebrate finishing their last chemo. I don’t know if I get a real bell or just a symbolic bell but either way, I just had confirmation that I have almost had my last chemo!  Ding Ding!

It’s not over quite yet as there are at least 2 intrathecal chemotherapy injections in my spine yet but I don’t really count them because they’re over and done with quickly and there haven’t been any side effects previously.  Also, the effects of the ‘real’ chemo last time took 3 weeks to clear and are only just (painfully) coming into effect. The doctor was sure it would be very much quicker this time due to the nature of the chemo being CODOX, not IVAC. As always, I'm crossing my fingers he's right.

One for the road.

I've been discharged! Yep. That's it. I’m getting out. My neutrophils are just high enough to see me out but I am having a blood transfusion beforehand to wish me on my way. I still have 2 intrathecal chemo injections, a meeting with the consultant, observations, pet ct scan and results before I’m totally clear but they're daycase visits so I’m no longer an inpatient and sleep in my own bed.

Hospital Food

Further to an earlier post about learning about nutrition, I have taken an online course on the basics of the subject to further my knowledge on how what we put into our bodies makes them work or fail. It seemed a relevant subject to be studying in the bed of a haematology ward. I’ve also spent a lot of time trying to reconcile the hospital food that I’ve been receiving with the health situation of its recipients. Don’t get me wrong, the food is reasonable, the staff are lovely and most of the food is probably what people want and may well eat at home. Its good comfort food. But it isn’t healthy. In fact, from what I think, it seems to be counter-intuitive to the improvement of patient health. I don’t want to rock the boat of those who hold my life in their hands but I felt it was noteworthy. One could argue of course that patients have spent 50 years doing the damage and a month or two of chips isn’t going to make a difference but there must surely be some uneasy consultants / dietitians.

Half term.

Half term was great. I’d predicted (wrongly) that it would coincide with my most recent round of chemo and as such, I would be bed-ridden for the entire week with my daughters. It had coincided but due to the nature of the chemo, I was not neutropenic so was allowed out and there were large gaps between intravenous infusions so many of the days were free for me to go and do activities with my lovely family including my sister and nephew. Rowing on the lake, crazy golf, farm petting. All good memories that I didn’t think I’d get to do. It wasn’t ideal as I was still based at the hospital in the mornings and nights but much much better than I’d expected.

No updates.

There's been a half term and a break from my blog posts. Not because I’m on half term but because either I’ve been allowed out of hospital and had fun with my daughters or because I’ve NOT been allowed out of hospital and there has been little new to report. Lots has happened but I’m so used to having a blood transfusion first thing in the morning, an intrathecal methotrexate spinal injection in the afternoon and various chemotherapy drugs pumped intravenously the rest of the day that it would just be repeating things I’ve already mentioned previously. Suffice to say, the saga continues. 

Morph

I have all these big medical words in my head but always a total mindblock when it comes to remembering the word, “Morphine” which I’ve needed to ask for a few times to relieve a very debilitating pain. I’ve put a picture of ‘Morph’ up here to remind me. There's no point asking for methane or methotrexate or methodone as I don’t want any of them although I guess some of them may work. I just need a reminder.