My Relapse Story: ICE Cycle 3 Just a little recap on the story to date
Diagnosed Hodgkins Lymphoma Stage 4B 14th Feb 2014
ABVD Chemotherapy March 2014 to August 2014
Radiotherapy 40Gml over 4 weeks November 2014 to December 2014
Long gaps between test but generally non conclusive including 3 biopsies to throat and neck.
Remission Dec 2016
Relapse April 2017
R-ICE chemotherapy 3 cycles Commenced April 2017
followed by a Stem Cell harvest, followed by BEAM Chemotherapy followed by Stem Cell Transplant.
Ice Chemo is designed to kill all cancer cells in the blood, plus white cells, stem cells and production of stem cells. I will go under 3 cycles, each cycle takes 3 days in hospital followed by 18 days of no Chemo then cycle 2 18 days of no Chemo then cycle 3
Cycle 1 Completed 13th April 2017
Cycle 2 Completed 5th May 2017
P.E.T. Scan 18th May 2017 (P.E.T. Number 9)
Stem Cell meeting Dublin 23rd May St James
Cycle 3 completed 27th May 2017
Again this is really for victims and family victims:
The ICE procedure is exactly the same as I outline in Cycle 1 & 2, so no real point in updating that. The photo just taken 25th May at 11am To those who know cancer regimes the bright purple bag on the left tells you it’s Chemo . I know I look stern in this photo but believe me it’s pure determination. I was hoping to not have Cycle 3 but that was just the team here in Cork trying to boast moral, not that it needed boasting. I have only just commenced this today so I will be updating on Sunday the 28th
As against previous post this like the St James blog is aimed at victims to help them understand better exactly what happens. I am an exception to certain rules as I tend to attack possible side effects before they occur so basically getting the upper hand. It is vital that positive thinking and positive action are used in any battle against cancer. I am battling cancer for over three years now and will continue battling no matter what. Negativity is of zero use to you,
Nausea : I still fight nausea daily and it works. To date throughout ABVD, radiotherapy and now ICE I have not been physically sick once. That does not mean I haven’t felt sick I have just been strong enough to fight it off. Anti nausea injections and tablets work great and my oncology team respond fast if I start feeling nauseous. Good management works. But like previously shown I had planned for the worst and hoped for the best, we had extra disinfectant, buckets, towels, waste management, rubber gloves, air freshener sprays – basically everything ready just in case (the buckets come in handy for weeding the garden)
Fatigue: My arched enemy. The fatigue with ICE is still the worst I have ever experienced It has continued to gain pace. Don’t get me wrong here I still manage to get about daily, I walk the corridors of the hospital when admitted, I walk a couple of miles every day when out. But when fatigue hits I stop and rest. You can’t beat it so join it.
Peripheral Neuropathy (sensation of numbness and tingling in hands and feet) this never fully went after ABVD but it did get more server for the week after ICE and gaining slightly. I have a degree of difficulty typing now and have to be careful. So issues opening things like buttons or bags but still not too bad.
Temperament: My second biggest issue which we will be attempting to control medically this time, it only lasts for about a week and it is not physical-violence however given the wrong male person at the wrong time could change that none physical idea. Xanax has been prescribed, so will be testing them next week.
Hair loss: 99% of HLD Chemo victims will suffer from this. After ABVD mine grew back within 6 weeks (I keep my hair short anyway) As a male it’s no big issue, I’m bald so what, I haven’t had a shave in nearly 4 weeks as there is no facial hair, eyebrows nearly gone and the remaining body hair disappearing. But it will grow back and that’s the main thing. Ladies there are wig banks if you need them, vanity is something we leave behind us when we commence Chemotherapy. As part of hair I will also include nails, your nails are made of hair use Nail Nurse on them hands and toes it’s really good and protect them. My nails are holding okay at this point but I do use Nail Nurse on them.
Appetite: Here is a really interesting one and something I have not commented much on. What you eat durning Chemo can tremendously influence nausea. I choose bland food, basic breakfast like toast and rice crispy, Main meals: potatoes (cause I’m Irish and allowed so fuck off), veg like cabbage, green beans, turnips and some meat – but always gravy. Avoid spicy foods and never try to eat your favourite food during or shortly after Chemo. Since commencing ICE I have gained 3Kgs intentionally, but I am walking a lot more so in real terms I would have gained a lot more. Old army training – eat and sleep when you can if you don’t you’ll regret it later. I know the next step after Stem Cell harvest is going to be harder so I am preparing now.
Diabetes: This is a tricky one. In my previous Chemotherapy ABVD they had to use a lot of steroids, so after 2 cycles they called a PET scan in CUH to see how things were going, as a precaution they do a blood sugar test just before the scan. Normal blood sugar should be between 4.5 and 6.5. The nurse testing me got a shock 33.5 she went off and got another unit to test 33.5 and then hit the alarm bells. Basically if they had not done the test I could have gone into a coma during the scan. Straight to the Bon Secours and checked again at 34.5. So I was declared Chemotherapy Steroid induced Type 1 diabetic. I was placed on insulin and we managed to get it down. 3 months later I was classed as Type 2 insulin diabetic and by Oct 2015 I was cured. But Chemo can effect the insulin produced in the body so I am watched. It drifts between 6.2 and 15.5 which is fine once I drink lots of water.
So if you feel extremely thirsty for fizzy drinks and the urge to eat loads of sweet sweets get your blood sugar tested. Early detection can lead to a cure. They tend not to test automatically except for PET scan (my first PET scan showed at 4.8) – I now average 5.2 to 7.0 except while on Chemo
Insomnia: Insomnia, sleep disorder, tiredness, deep sleep, sleeping meds and so on. Let’s cover the lot. But first please understand that fatigue and tiredness are not the same. Tiredness you can sleep off, fatigue you can’t. Chemotherapy Fatigue hits you at anytime even after a good nights sleep, all you can do is rest and it will pass. I have been on sleeping tablets for three years, they are additive but basically a necessity as the drugs used created nightmares, I have decided to add this as another topic to follow. I get hit by two extremely different types of insomnia/tiredness – the week following ICE Chemo I get about 5 to 7 days/nights of insomnia – even with a sleeping tablet I can only average 3 hours max sleep. Now consider the fact that a 7.5mg table should give you 3 hours induced then 3 natural recovery and about 2 hours natural. So it’s Chemo related insomnia. It last a few days and get easier. Then the second week (about 6 to 7 days after Chemotherapy) I go the opposite 8 to 12 hours sleep. It’s feels like the body is recharging its batteries, which it is.
Nightmares: This effects a number of victims, and it didn’t overlook me. From the first night I got them. I remember the nurse asking me about how I was after the first round of Chemotherapy (ABVD) and she specifically asked about sleeping, I answered her “It’s fine but I hope I don’t see any dead people I know” you see I keep seen faces of people I never met, they were dead and not a sound from them but I never recognised anyone I know. Now it went from people just standing there to the evil ones attacking me. It also included one particularly nasty evil bitch who took the initial form of Anita and then attacked (come to think of it it might have been Anita and maybe I wasn’t dreaming) But seriously if you get nightmares you get get one nasty little fucker in there. Yes and the dragons coming out of the walls. They were actually fun as against the nasty bitch. Let’s say when I finished explaining to the nurse her face had gone a little pale. Because Chemotherapy drugs effect the central nervous system it can effect you mind. Nightmares though not good to get are a good indicator to the fact that the drugs are hitting your nervous system.
Pain: Again this depends on what type of cancer and how sever the cancer stage is. I can only speak about Hodgkins and how it effects me. My neck was sore durning and after the initial attack, my low back and back of my right leg were painful. I have had kidney stones for 27 years and my pain threshold is very high so if I’m in pain it’s at a high level. So the pain was tolerable. For the lads out there I also have a mother-in-law so my pain tolerance is also high. With ICE Chemotherapy and the injections of Neupogen GSF and yes it causes bone pains and lots of them, properly every bone in the body. Keep in mind the ICE kills the production of white cells mainly stem cells thus causing bone to spasm creating pain, Neupogen causes bone marrow to over produce stem cell thus creating expansion that creates pain. In reality it’s pain from day one but where I’m concerned it only occasionally pops above my threshold. The oncology team will not hesitate to offer strong pain killers if needed, so when the pain peeks I take a few to take the edge off.
Hygiene: Slotting this in before constipation maybe it would have been better off after it but here we go. All forms of chemotherapy damage your immune system but the most damaging are the drugs used to fight blood cancers like Hodgkins Lymphoma. Once your immune system is down your open to infections. Personal hygiene is not an If or but it is necessary. Daily warm showers are important, as your skin becomes sensitive due to chemotherapy it is not advisable to have hot showers or bath it is also advisable to use none perfumed type products, like Johnson baby products, Simple soap E45 creams and dove soap. But hygiene also applies to your mouth, again the drugs used like ABVD and more so in ICE can damage the lining of your mouth. Kin and MyCostatin are great at protecting and helping your mouth heal, regular use and brushing teeth is a must.
Hygiene continues to the basics of keeping everywhere in your home clean, I use both Milton & Dettol sprays.- neither will effect your sensitive skin and the disinfectant quality is excellent. Make sure everywhere that your going to be is clean and kept clean. Surfaces like workspaces should be spotless, if you continue working in say an office make sure the clearers take special care to clean your workspace with good disinfectant, in my case I brought in my own products and cleaned my own office. I also cleaned the inside of my car weekly. The toilets must be also cleaned very regularly, it’s also advised to double flush the tolilet for the 5 days after Chemo. Harder chemicals should be used in the toilet like liquid Dettol. You will not succeed in cleaning everywhere but getting it started and keeping it clean is important.
Constipation: Another buddy of Chemotherapy. But it’s also a side effect of the anti nausea tablets, as if you really give a shite…. And yes it hits me. Rarely in ABVD but definitely in ICE (maybe the photo is not determination but constipation) Anyway the oncology team do not like people been constipated because the don’t need you full of shit. They will start by giving you something light in a laxative. If you have moved after 48 hours then you get a more sever level of laxative. As the chemotherapy drugs ware off so will the constipation and all over sudden you will back giving a shit.
Mental health: It’s purely coincidental that this follows the topic of constipation. I am going to add depression to this section. And since I added it I’m going to start with depression. It it a substantial area and covers vast amounts of topics,even below I explore this a little in the Kubler-Ross Theory section below. I do not suffer from depression or I do not consider myself to be depressed. In real terms depression require medical professionals to advise you on what you may need. I recently read an article about assisted suicide and that people who explore this option are suffering from depression which is something I disagree with. I have explored assisted suicide and looked into the options available why you might ask? I consider myself to be quiet dignified and I would want at this stage of my life to die with dignity. For me to consider lying in a bed fading away is beyond horror, I saw my dad taken like that and I have seen too many since then. Assisted suicide is not legal in Ireland or the UK but I have looked in Holland and Switzerland – its expensive and not guaranteed to work. There are horrific stories about failed attempts. So I placed that one aside. I really don’t consider assisted suicide to be depression more a state of mind. As preciously pointed out and following my last statement I’m sure you’ll think yeah right I am a mentally strong person. Im stubborn and strong willed. I can run a conversation with anyone from a cleaner to a professor. My medical team know they are dealing with someone that will not accept “No” as an answer. So things are explained in detail, thank god for Dr Google. Mental strength to me is a key to defeating cancer, to me it accounts for over 50% of what it takes to beat cancer. Ever human has the ability to be mentally strong in most cases it just need a little push start. Im not talking about mentally strong when others are about, I’m talking about when your alone or looking in the mirror. YOU have to be strong yourself. People can’t make you strong they can only make you stronger. You can do it, but it’s 100% all the time even in the darkest hours and there will be dark hours. So Dark Hours.. another considerable part of the mental area. Dark Hours according to medical professionals are a form of depression my answer to that is bollocks. It’s not depression it is the mind attempting to absorb massive amounts of information, it is the mind battling cancer, it is the mind trying to sort out the problems presented. It is best to be alone when you feel the darkness approach, you really don’t need extra input, but be strong beat off negative thoughts fast this is the time to call up you reserve energy. What happens in the dark hours is between you and god. I’m not going to lay out my dark hours to anyone and as above it maybe part of my deal if I ever speak to God.
I’m going to end this section and this part of the blog on mental health now but it is a subject that is close to my heart and to many of the dedicated readers. But there will be lots more to come.
In my view Dr Kubler Ross was an outstanding medical professional, even though I would not agree fully will some of her findings I still believe she led the way for medical professionals to think. Her theory on how victims dealt with death was amazing. Known by some as the 5 stages of acceptance it is actually the the stages of accepting death.
1. Denial and Isolation: Used by almost all patients in some form. It is a usually temporary shock response to bad news. Isolation arises from people, even family members, avoiding the dying person. People can slip back into this stage when there are new developments or the person feels they can no longer cope.
2. Anger: Different ways of expression
-Anger at God: “Why me?” Feeling that others are more deserving.
-Envy of others: Other people don’t seem to care, they are enjoying life while the dying person experiences pain. Others aren’t dying.
-Projected on environment: Anger towards doctors, nurses, and families.
3. Bargaining: A brief stage, hard to study because it is often between patient and God.
-If God didn’t respond to anger, maybe being “good” will work.
-Attempts to postpone: “If only I could live to see . . .”
4. Depression: Mourning for losses
-Reactive depression (past losses): loss of job, hobbies, mobility.
-Preparatory depression (losses yet to come): dependence on family etc
5. Acceptance: This is not a “happy” stage, it is usually void of feelings. It takes a while to reach this stage and a person who fights until the end will not reach it. It consists of basically giving up and realising that death is inevitable.
Not a great subject to bring up Ian… no it’s not but it is so relevant it can’t be ignored. Have I as a person made these steps ? Honestly No, not because I don’t believe I will die but because I don’t feel this theory works for me, yes I have seen this many times in my life in other people. Yes in the cases I have seen it is remarkable close to what really happens but for me I will go through them one by one. Denial & Isolation – I was told in Feb 2014 that I had a Stage 4 cancer, I accepted that based on facts and set out to beat it. No denial no isolation (medical isolation is different). Anger – this is a little debatable as I have made a big issue of my temperament problems, but these temperament problems stem back to my early life, they are trained monsters created to hurt people, so I consider temperament to be historical – am I angry at God and everyone else because I have cancer ? No I’m not. And I would never envy anyone who has not touched death or beating it. Added to that others are dying I see it every time I enter the hospital, I just watched a tribute to the 22 young people murdered in Manchester, and it breaks my fucking heart to think that here I am fighting to live when idiots like that murder so many. Bargaining I don’t really talk to God but if and when I do the chances of me trying to swing a deal is very fucking likely Depression No I don’t suffer from this, I never really have and hope not to in the future. She included jobs in this, I would never let this depress me. But the financial side is always going to be a worry but still not depression. Acceptances absolutely and from day one. I have accepted the fact that I have cancer the day I was told, I accepted the fact that my death will happen like us all, it’s just a matter of when and how. So I basically jumped through this theory in a day a long time ago, way before Hodgkins – it’s properly the driving force within me.
So out of the 5 steps I basically see myself having a definite one and if I talk to God I’ll let you know if the bargaining gets added.
I have mentioned in previous post the difference between real friends and those who think they are your friends, or you think they are. A lot of my friends live in the Canaries Islands, they stay in contact via messenger and Facebook or email. They know I’m in isolation so they are restraining from travelling, others live around Ireland and are under request not to visit, even local friends in Cork are been kept away. In simple terms right now my immune system is at an all time low, ICE kills the production of white blood cells and renders your immune system as none productive. A simple cold could translate to a sever flue or worse. But I would like to continue talking about “friends” – real friends are supportive not necessarily sympathetic, you absolutely know they are there for you if you need them. They are not the people who ring you and say “sorry been meaning to call you for weeks” that is a person with a list of priorities and your not near the top of the list, tell them to go to hell and see when they call back again. Then you have the “text” so called friend – “I sent you a text last week to see how you are” – a classic for me was when one of my mates asked if a certain person had called or text me, now this certain person classed himself as a close friend, I said yes just got a “How are you feeling my friend” type text but the first text in weeks. My mate suggested sending him back “you missed the funeral it was last week so fuck off” Some people out there seem to want or need self justification- at the end of the day the victim is number one no excuses. So in real terms my friends are the people I know I can call and they will be there no matter what, just like I would be for them.
So I keep in close contact with friends and family, through Facebook, Phone, e-mail & messenger but rarely text. I know who they are and that they are there for me or really for us ( Anita is a substantial part of this and without us there would be no me). It is vital that you remove negative people, you don’t have to try to be nice to these people. It took me 3 year to weed out who was who and at the end it’s actually quiet shocking to see which were negative or to be blunt who really didn’t give a fuck about us. If by any chance your wrong and mistakenly call a friend negative then that friend will come back very quickly to you, the don’t give a fuck lot will use your revoke as an excuse not to contact you. I have learnt quiet recently to hate the self righteous idiots that seem to think they were ever friends.
Now some might say he is off on one again… but I’m sure 100% of victims have experienced this, and the families would have noticed it even more. It’s significantly because it’s so disappointing and brings forward a form of negativity that is not needed. It’s also something quiet significant in mails I receive, so I don’t mind sharing this. But once you realise who is who then move on and forget them. The amazing thing is that if they read something like this they become paranoid- notice I have not mentioned anyone’s name and this is a public blog read by over 1000 people worldwide. Don’t you just love it.
Great post, you really hit the nail on the head. I just finished treatment for Hodgkin’s Lymphoma Stage 2B and can really relate to this post. You sir, have sure gone through a lot and I commend you for putting up the fight. I’m sorry you’re going through this and I hope all is well. The Kubler-Ross Model was very interesting to read about! Glad I stumbled upon your blog.
LikeLiked by 1 person
Hi Kassandra I assume your waiting for PET scan now – normally 6 weeks after Chemotherapy. Hope you get great results. What I am undergoing is a rescue therapy. Front line treatments have great results especially at your age and the fact they caught it at stage 2B is even better.
I have read your blog & it’s got a great feel to it, you should keep writing you have a talent for it
LikeLiked by 1 person
Thank you for the kind words and well wishes! It’s been a learning process. I have gone through your blog and you are also a talented writer. I love how you are educating others and bringing awareness to what you are going through. I really hope this rescue therapy is successful and Iooking forward to learning more. My next PET scan is in two weeks. Just know you have people here in Los Angeles keeping you in their thoughts and prayers and I hope nothing but the best for you!
LikeLiked by 1 person
Thank you. Kassandra please keep in mind that you may never have to go through the therapy that I am having, stem cell transplants are not even a second or third line therapy they are basically a last resort particularly here in Ireland. The success rate for HLD Stage 2B is extremely high (about 95%) so you should never have to face this.
I’m sure you can see that information about first line therapy like ABVD is available everywhere and thousands of blogs ranging from it nearly killed me to easy treatment but when it comes to Stem Cell ICE & BEAM there are very few posts anywhere & most that I found are very negative. I commence BEAM tomorrow and in 7 days I get the transplant, I had considered stopping to blog but with 1500 people worldwide I decided to continue. But like I said above you may never have to do this. I hope & pray your PET is negative so please let me know, all going well I will be in recovery when your having your PET and good results from you will boost me. Together we are stronger