Well my weeks rest which turned out not to be so relaxing thanks to farmer Giles came to end on Tuesday. Returned to hospital Wednesdafor visit with oncology docs to determine if I was fit enough to resume chemo and also discuss the new plan. I was originally having my chemo over 3 days on the long weeks but the docs have decided to spread it over 5 days moving forward. This will mean I’m able to have lower doses of the chemo drugs at a time and also they can pump a lot more fluids through me. The doctor explained we can’t really afford a repeat of the blood condition flare up, less so in regard to the drop in blood count and more that the ordeal has done a number on my kidneys. She explained kidney function is vital in chemo to help filter and remove the chemo drugs from the system as efficiently as possible. The kidney function must be above 60 or the chemo becomes dangerous. Fortunately my function was at 90 but doc was a little concerned it had not recovered more and was lower than pre chemo. The main chemo drug this could be an issue with is the Bleomycin, which if the kidneys are not working fully drastically increase the risks of lung toxicity which can cause major loss of lung function and possibly worse. If they had to remove this drug from the chemo regime the doc explained this would reduce my current cure rate percentage from 90 to 80. Which as the doc said means 1 in 10 chance less of obtaining complete removal of the cancer. She also explained if the blood condition and kidneys worsen from another HS attack chemo could be cancelled all together. So I’m definitely touching all wood my body can hold strong for the next six weeks.
So I definitely have a fight on my hands now and have decided this needs positive pro active action. So I’m stocked up on cranberry juice and lemon barley water and have introduced daily seafood into my diet. Prawns cockles and muscles been high in the good vitamins I need to maintain healthy blood production. Kind of strange as a child I always had a large affinity and craving for these types of seafood, I definitely believe sometimes the body will make you crave for the things it needs. Unfortunately i have not eaten fish for many years. The doc explained their belief was that my body is able to produce red blood cells in overdrive which is why my condition has not been a problem. She explained I was somewhat B12 deficient but not drastically by any means. However they believe this deficiency played a part once the chemo drugs attacked my bodies ability to make the blood in overdrive. I’m now on folic acid daily and received 3 B12 injection shots as a boost during my hospital stay. They are now prescribed every three months moving forward so it’s comforting to know my HS is getting some treatment after 37 years 😂
My other consideration is that since the age of 15 I have been a heavy marijuana user. I never took other drugs and have been T Total for over 15 yeas however Mary Jane and I spend most waking hours together. Unfortunately as is the way in the UK we mainly roll up using tobacco also. This meant I have been a cigarette smoker also. Only when working mind you, personal time is spliffs all the way. However after GP visit and sent for referral the weed stopped helping causing severe anxiety attacks so I stopped at this point. Weed is super positive and every bit as powerful a medicine as it is championed, however the effects it can have on mental states is a very real drawback. Paranoia and the exacerbating of any mental conditions a user may have is very real. For those not mentally strong and able to identify these issues it can be a real problem. I’ve known many users with mental issues who are adamant the use of marijuana benefits them but has been doing far more damage than good. For myself I am extremely strong mentally and suffer no mental health issues. Also I don’t have an addictive personality and can stop instantly whenever the need arises or I feel the need to take a break. During my recovery I began ingesting orally in order to help manage the pain and recovery. One of the cancer markers they measure is called HCG and marijuana ingested orally can cause significant rises in this level. True enough my level pre orchiectomy was 450 and after recovery had raised to 1450 😂 I have informed my doctors I was ingesting orally during this time so they can be aware of the fact but due to the legality and ridiculous taboo surrounding it’s use here in the UK it is, let’s say difficult to discuss with doctors with most wanting to quickly move on and change the subject. I have tried to ask if it will have played a part in the management of my HS over the years due to its very powerful anti inflammatory properties and ability to assist with many known auto immune diseases. Since it’s legalisation in the USA the information and research has been coming through at warp speed. However the docs were unwilling to give the matter any consideration. I had stopped completely prior to starting chemo as oral ingestion can effect the chemo drugs making them less efficient. Again much research on cancer and weed has been done in the USA and it’s benefits during cancer treatments has been very positive with some recent studies showing it has the ability to destroy some cancer cells in lab conditions. Deciding it was more than coincidence my HS has been managed all these years i have decided that it likely has played a part in helping all these years. Also for me I’m very sensitive to taking pills. Pain medicine blocks me up faster than flushing baby wipes down the toilet. The last time I took anti inflammatory tablets despite taking stomach lining tablets led to an impacted stool which took 16 hours straight on the toilet to finally excavate and an anal fissure that took a year to heal and is not something I ever want to re live. As such some pain relief was needed when the piles decided to amp up to a pain level 11. Fortunately thanks to the American doctors they have shown inhaling causes no issues with the administration of chemo. Eating it means the liver must process the weed and this will interact by blocking the chemo drugs making them less effective. However inhalation works through an exchange of gasses in the lungs and then enters the blood stream direct with no interaction with the liver. However having finally kicked disgusting tobacco and got all nicotine withdrawal symptoms done I was not up for smoking again. Fortunately there is the ability to vaporise these days with high end devices providing as clean a way to inhale as possible. By inhaling vapour you are not burning anything and are able to avoid the 1000s of carcinogenic chemicals produced when setting things on fire. These carcinogens are the chemicals responsible for causing lung damage and cancer. Weed vaping is different to popular mainstream vaping as you are only heating the natural marijuana alone to the specific temperatures to release the different CBD/THC properties and effects. Popular vaping uses chemicals PG and VG to create the large vapour clouds you would associate with mainstream legal vaping. And although studies have shown these chemicals safe in short term animal exposures nobody knows the long term effects of these chemicals. Good old UK government let’s us inhale untested unproven chemicals and smoke all the cigs we want but marijuana is evil. Good job government 🤪 about as good as the job they did managing corona. We are now the worst in Europe despite been an island nation. Oh and still not advised to wear masks in public, I think dropping the ball would be a massive understatement. So I wouldn’t raise a thumb to the government, though I would be more than happy to raise a specific finger. Any way, back to the point, I have decided to begin vaping marijuana but will not mention to the doctors due to our amazingly liberal attitude in this country 😳
So moving forward full steam ahead determined to fight with everything I got and positivity is far more powerful than any negative feelings. Today I hit a new record 2 min 16 seconds breath hold on my Wim Hof breathing so lung capacity is improving. Also oncology doc prescribed me a pile cream called Sheriproct which is prescription only. When I had piles for over month when I was 18 and nothing worked, my Mum gave me some to try and it cleared them up quick time. GP was unwilling to prescribe for me due to the chemo but oncology doc had no issue once looking it up. And I can confirm it is exactly as good as I remember and at the risk of jinxing my self Farmer Giles finally seems to be p*****g off and good riddance is all I can say about that. Turns out for me Anusol cream causes immense burning and pain so looks like I could have avoided months of pain in my life had I made that connection sooner. Oh well better late than never😂 As for over the counter I can recommend preparation H for its soothing properties and Germaloids helps with pain and some swelling reduction. But for consistent long-standing chronic piles Scheriproct is the king.
Im definitely fired up and ready to fight as long as my HS stays at bay. Positive thoughts all the way now or PMA as Mr Motivator would say and today I would like to sign of using Wim Hofs words at the end of his guided breathing session as I think they are perfect. ”Wishing you a good night, or a good day and a good life. Thanks for your time, all the love all the power”
Hi sweetheart just read your blog it's amazing all the things you have to contend with 😷
If anyone can beat this it's you Dom your courage and strength will carry you through
Thank you for sharing your journey with us ❤💖
Maybe at the end write a short story / book and send to a publicity agent I'm sure your insight would prove invaluable
Take care stay strong love always abbs and gang xxxx❤