Six Months On

My last post was on Christmas Eve last year and at that point I had decided not to continue blogging this journey anymore. We had got to the end of the radiotherapy treatment and I thought from here on in there is not too much more to say.  Also by this stage, both Karen and I were at a point where we just really wanted everything to stop and go back to how things were.  Karen was at the height of her side effects to the treatment, so our focus was really just about recovery and reclaiming what we could of our shattered little, frail lives.  So having pretty much forgotten about this blog, recently I had reason to have a look at it again and was astonished to see that I have had more than 5,000 page views and as recently as today.  I am under no delusions of grandeur that I have this many family or friends who look at this blog, so I suspect it may be other cancer patients and or family who are also going through the trauma of dealing with Adenoid Cystic Carcinoma (ACC).  It is a lonely journey and being such a rare cancer with very little information about it, it is only human nature at some point to seek out others who have travelled this path before.  So I have taken this juncture to bring family and friends up to date as to how we all are and hopefully at the same time educate you as to some of the misconceptions you may have.  For those dealing with ACC it may give you some insight into what to expect after treatment and the slow recovery process.

So first thing first.  Karen at this point as best we know is cancer free.  Some conjecture as to the time frame you put on it.  Some groups have you count from the time of diagnosis which would have her at 9 months cancer free, while others would have you count from the end of treatment, which would have Karen cancer free for 6 months.  Seems a trivial point, but there you go.  We know this because every 3 months Karen has alternating head, neck and chest CTI scans followed by chest x-rays.  She still sees the ENT surgeon every 3 months as well as Oncology every 3 months and also a huge priority on self examination.

So what are the side effects now and how bad are they?  From outward appearances, all would seem to be fine and that would be the understanding of many or our friends and work colleagues.  Karen's face has cleared up.  There is only a very faint discolouration around the area that was treated with radiotherapy.  On close inspection around the mouth and chin area, the skin appears to look quite old and has lost its elasticity much to Karen's disappointment.  The scar running along her neck where the tumour was taken out has healed up very nicely and is hardly noticeable unless pointed out.  So I can understand for those not in the "circle of trust" to think that it is all behind us now and everything is fine.  Inside the mouth is a different story.  On a daily basis, Karen still has considerable pain in the jaw and teeth.  The area is very tender and any knock or bump she receives around this area will have her in tears.  Codeine, although not taken everyday is still very much her friend, that is after going through the 20 questions at the chemist before they give it to us.  There also appears to be some permanent nerve damage.  The area along the scar line and above is numb.  Karen quite often complains of pins and needles sensation in the chin area.   Although her drooping lip which was sustained during the initial surgery and associated nerve damage has improved, she still has times particularly when she is tired when it droops.   Karen also still has little to no saliva.  It was hoped that with the one remaining saliva gland that was saved, that it might compensate for the missing others and produce more, but this has not been the case.  So artificial spits and gels and lubricants are used but they are only good for very short term relief.  Eating without the presence of saliva is also very problematic.  Food is not as easily broken down and just the very basic process of swallowing becomes difficult.  She also has difficulties opening her mouth wide enough to get food in the mouth, so a careful choice of foods to eat has become her norm.  After eating anything, her mouth will become red and painful and in some cases almost instant ulcers and rawness will follow.  So there are no foods that are without problems.  The obvious no go zone foods are anything remotely spicy and or acidic.   It has been a real challenge to come up with menus that she is able to eat and enjoy.  It is amazing just how many recipes have tomato in it, so a huge chunk of our regular week day meals are no more.  On a final note about side effects and I am sure there are many more that I have missed, just the very act of kissing has been compromised.  Given her mouth  area is so sore, a peck on the lips is about the extent of it.  So the level of intimacy that Karen and I shared before has certainly been downsized.  Enough said on that subject.

For me, the biggest hurdle to get over has been a mental one.  (Some may say that has always been the case).  When we first found out that Karen was cancer free, it was more a sigh of relief rather than any jubilation.  It is very hard to get really excited about the future knowing the type of cancer Karen had and the outcomes based on the statistics available.  So as every 3 month check approaches a dark cloud certainly descends as we contemplate all the "what if" scenarios.  It is all consuming.  We are told this process gets easier with time, but we are yet to experience that ourselves.  So as far as feeling positive goes, that is a real battle and something that at the moment is not the default setting.  I take some comfort in that even the Cancer Council has said it is okay to feel that way.  It went further on to say that there is absolutely no evidence to support that being positive has any outcome at all on treating cancer or whether it will return.  Having said that though, obviously it is not the way you want to go through life either.  We have both seen councillors individually, which has been good.  Their advice has very much been focusing on living for the now.  Making the most of each situation now and not thinking about what tomorrow will hold.

Since the treatment finished, Karen has also sought out and joined several Facebook groups.  An overseas head and neck cancer group and also an Australian group specific to ACC.  They have provided Karen with a sense of knowing she is not alone and others are going through the same things as she is and feeling the same way.  As much as I have been with Karen every step of the way as we have dealt with this, I really have no idea of what she has been through.  Having said this and I certainly believe there is a place for these sort of groups, I word of caution.  They do tend to be a bit on the negative side.  As one member had written, all the "well people" are not on the web and involved in facebooking with these groups as they are too busy enjoying life.  So in my opinion they are good in moderation, but do have the tendency to bring you down further when you may already be already struggling.  My thoughts only and if you find comfort in those groups, then that's fantastic.

Where to from here?  With Karen's last check up, we were told that the side effects that she is experiencing now will not improve.  At 6 months this is what it will be for the rest of her life.  Given she is still young and the quality of life has been compromised substantially, they have referred Karen onto Hyperbaric therapy.  There has been some success in the United States with head and neck cancer patients.  The decompression and hyperbaric treatment has shown some improvement in restoring tissue  that was damaged and or killed by the radiation.  The idea being that the very oxygenated blood will improve circulation and possibly reduce pain and increase saliva.  So Karen is half way through this therapy.  It involves going into Royal Adelaide Hospital 6 days a week and spending 2 hours in the chamber over 30 sessions.  If there is to be any improvement, it should start showing itself between session 20 and 30.  Of the cancer patients that have undergone this treatment, approximately 50% have had some degree of improvement.  So we shall see.

This next paragraph is a difficult one for me to write, but one I feel I need to write.  No doubt it may disappoint my Christian friends, but I have been honest with all my other writings and would not want to just masquerade over my faith and where I am at.  I feel like such an impostor, especially when another Christian brother or sister comments how we have been such an inspiration or encouragement to them by the way we have handled all of this.  Nothing could be further from the truth.  I have drawn very little comfort from God during the period and have very much felt we have done it alone.  When you are really stretched and you look at the very real prospect of life without your partner and mother to your children, I have found it a real struggle to find the blessings in this situation and even harder to praise the God who has allowed this to happen.  The notion that it is all for a reason and we don't see the big picture stuff gives me no solace.  I know as Christians we are not exempt from the hardships of life.  In fact we deal with all the tragedies of life like everybody else, but perhaps with an extra sprinkling of persecution and guilt for good measure.  So my Christian walk of late has been more of a stagger.  Not the easiest thing to come out and say in Christian circles, but unless you have walked in our shoes you will not fully understand.  So having said all that, I still go to church, but not regularly. I still believe in God, but just feel the need for some time and space to help the wounds heal.  At the moment I have the head knowledge of who God is but lack the heart relationship.

Apologies for the long winded update, rant and rave.  A lot to cover over 6 months.  I hope for those who read this, you may come away with a better understanding of what we are going through and if this is your journey as well, I sincerely wish you and your family all the best.

One final comment.  A shameless and blatant plug for my wife's business. In which she has thrown herself and found great comfort in as she's journeyed through her time of cancer and treatment. She says it is relaxing, meditative, and takes her mind away from what she's dealing with each day. She is also using it to benefit cancer research, so maybe a blessing there after all. Karen's Cookie Jar. Please check out and support her facebook page at https://www.facebook.com/karenscookiejar
- specialising in bespoke and artisan cookies with part proceeds going to Cancer Research.  The cookies that Look Good, Taste Good and Do Good.
For further enquires or orders, contact Karen at either her facebook page or email karenscookiejar@live.com