Before I get into my personal struggles within this blog, I feel I must touch on the global struggles going on, it is not a problem I can ever begin to understand but I will do my best to listen and learn.
Something has to change in not only America but globally.
It is everyone’s responsibility to do as much we can, no more empty platitudes.
Kerry, my partner, sourced me some useful guides that exist out there for Men and Women for us to learn from. If they make you uncomfortable, good. You should be!
If you “don’t see colour” you have a big problem, you can’t see the oppression, racism or privilege.
My results came in about 20:00 last night (03/06/2020). I have had a little time to process the information. I still can’t believe it if I am honest.
My Oncologist, Dr Ian Pedley, had received the CT Scan and MRI Scan results from the radiologist ahead of time, we were expecting Friday, even possibly Monday, but as soon as he had them he called me and read me their findings.
Kerry recorded the whole phone call as she always does, I’m glad that she does, it will amaze you how much I find that I can get locked onto one thing that someone says, only afterwards do I realise I haven’t heard/listened to other important parts of the call.
Be prepared for some good news for a change. Possibly the first bit of good news I have had since my diagnosis in July 2019.
Firstly I should do a mini-overview of my condition and explain that the MRI is of my pelvis as the primary tumour exists in my lower bowel.
I have Metastatic Low-Rectal Adenocarcinoma T3 N1 M1 cancer.
In English, a main tumour in my lower rectum, which has spread via my lymph network to my lungs, I had 3 metastases of between the sizes of 6 to 8 millimetres each. I was treated with 3 months of Chemotherapy (Irinotecan with 5FU and folinic acid).
I had responded well to the chemotherapy and the NHS wanted me to push forwards for complete removal of the tumour, rectum and surrounding tissues, leaving me with a permanent stoma and almost certain impotence. However after having 2nd, 3rd and 4th opinions, we then moved from NHS care to our preexisting private health care.
I then completed 28 daily sessions of Chemo-Radiotherapy targeting the primary tumour. This is something I’d care to never repeat but as you will find out further down this blog. I am really glad I did. Right when this finished COVID-19’s global pandemic kicked in. I was scheduled for CT and MRI scans, I cancelled them and went into shielding for 3 months as it was recommended to all high risk patients.
Starting with the MRI results.
A comparison was made with the previous MRI examinations dated 12/10/2019 and 08/07/2019.
“At the site of the previous low rectal mass and predominantly involving the inferior right rectal wall there is an area of low signal fibrotic change consistent with fibrotic post radiotherapy tissue. There is some mucosal oedema but no definite large macroscopic residual viable rectal tumour is identified. No pathological lymphadenopathy is identified. No abscess or fistula cavity is seen. There is no evidence of a destructive bone lesion. No pelvic or inguinal lymphadenopathy is seen.“
There are post radiotherapy changes within the pelvis but no residual rectal mass or local lymphadenopathy is identified.
CT Scan next. This is of my Chest, Abdomen and Pelvis.
“A comparison was made with the multiple previous examinations including the last CT dated 17/3/20 but also the outside CTs dated 07/07/2019 and 10/10/19.
Within the lungs there has been a small but significant increase in the size of all of the previously identified pulmonary metastases and there is a new lesion identified in the left lower lobe.”
- In the right upper lobe there is a 1.3 cm metastasis
- In the right upper lobe there is a 6 mm metastasis
- Also in the right upper lobe there is a 7 mm metastasis
- In the left lower lobe there is a 1.4 cm metastasis
- There is a new 4 mm metastasis seen in the left lower lobe
“There is evidence of a small but significant increase in the size of the pulmonary metastases consistent with disease progression. The rectal primary tumour is now exceptionally difficult to identify. No other sites of metastatic disease are identified.”
In non-medical terminology this means: my primary tumour is now completely undetectable (note: this doesn’t necessarily mean “gone”). However, due to a lack of treatment, my lung metastases have grown, and 2-3 new metastases have become visible on scans (CT scans struggle with anything below around 4-6mm). Ultimately this is good news, but there is now work to do in controlling the systemic element of the disease.
So, the next thing to talk about is that I stopped taking part in the Care Oncology Clinic’s Complementary treatment.
Why? Well… money. Due to both Brexit and COVID-19 it unfortunately priced me out of the treatment. Originally when I signed up for the treatment, it was £200 per consultation. Then it was about £80 per quarter for the cost of the pills. This absolutely skyrocketed to 4-5 times the cost. I did not tell Kerry this and I silently stopped being part of the program and as of tomorrow morning, I am rejoining the program. (I’ll recover from the black eye too).
Before anyone tries to arrange a GoFundMe or any sort of collection together, I say please don’t. We have discussed this many a time on my blog, I’ve had to edit blogs/remove blog posts in the past because they caused the start of murmurings of collecting on my behalf.
If you want to donate some money and you’re in a position where you have some spare, the Minnesota Freedom Fund or MacMillan need all the help they can get.
Kerry and I are in a position where we can pay for this ourselves. My failing was in not keeping Kerry in the picture, however please see it from my eyes too.
I no longer receive my wage, what I do receive is about 45% of my wages via a works insurance policy. My insurance covers the mortgage, mobile bills etc. Anything not already in Kerry’s name.
I have to ask Kerry for pretty much anything I want right now. I don’t have any disposable income. I feel cheeky putting anything into the shopping trolley that can’t be shared. Still, this is just a blip in the road. It won’t be forever. Soon I will be able to contribute again.
So how am I doing? I’m good thanks. I’m still processing all of the information. I don’t actually think it’s sunk in at all. I started this blog early this morning, I have already had a second call with Dr Pedley and we have already agreed on the treatment plan.
To begin in approximately 5-6 days time. I will be going onto a 12 week course of sistemic chemotherapy. More than likely Irinotecan (5FU) but this time they will be adding a new drug into the mix, Avastin. This originally available on the NHS was withdrawn due to it’s cost. Thank the gods for private healthcare eh?
I think having the majority of the day to prepare myself for Dr Pedley to tell me this helped. Kerry and I had a talk about it this morning, whilst I don’t relish the idea of losing my hair again, the weightloss will be welcomed. It does however mean that I will have to continue shielding. Although it was previously and will be pure hell on earth to be on chemotherapy again. I understand this is the next step towards beating this thing.
It does mean BandanaCam is coming back. Watch this space.
I usually sign off my blogs with, mood, weight, pain and appetite, but I will summarise them by saying the following:-
Chipper, Fat, None and Ravenous
Oh and lastly. Happy Pride month y’all.