Day 37

Hi everyone! I hope you're not missing us too much!

Things have been travelling well. Shane is continuing to improve every day. His appetite has dramatically improved this week! He's now able to eat the same amount as before, he just suffers from tummy discomfort when he does! Some foods are starting to taste better, but other foods still have no flavour. He is starting to enjoy his food though, and eating isn't so much of an issue any more. This is a big relief for us, as meal times have been difficult as Shane hasn't wanted to eat some of our normal meals, so we've basically had to start over again with our meal planning. But this has also been a good opportunity to try new things!

We had a review with the Doctor yesterday and all is continuing to improve in their opinion too! Today the steroids were reduced to 75mgs, and some of the Tacro (immunosuppression) also. Liver and kidney function are all perfect. Shane's Platelets are still very low, so there is high risks of bleeding with any cuts etc.

Shane's skin is looking much better. He has reduced the amount of steroid cream that he needs, but there have been some small patches of skin changes so he still needs to keep some of it up.

Shane has been suffering from a bit of fatigue the last few days. He was a bit ambitious on Wednesday and did 45min on his bike in the living room while watching a DVD. It was an amazing effort, but he's been pretty tired since then. Today we endeavoured to go for a ride, but we forgot how hilly our area really is! Shane did really well, but needed to walk up one of the last hills. Its so degrading for him as riding a bike has always just been so natural to him! But, at least its a start.

So I have been pondering further on Shane's new immune system, Leroy. In 12months time Shane will have to re-do all of his immunisations again. When you think about it, his immune system is less sophisticated than a newborn baby's. They at least have some protection from their mothers, and are generally kept safe from exposure to too many people. That's not so easy to do with Shane. He still needs to get out of the house and go to the shops etc. So we need to be even more careful as contagious diseases like chicken pox could be a big problem. This also applies to things like the common cold. 

Your immune system has a memory, each time you get sick or immunised, your immune system learns to recognise these diseases, so the next time you come into contact with it, you can recognise it early, and remove it quickly. Shane's new immune system most likely won't have any recognition of these diseases. 

Shane's uncle, who is on the bone marrow registry, has been asked to donate! We are thrilled to hear about this! Congratz Kent on having the opportunity to do such an amazing thing! 

xx

  

 

Day 33 & a 1/3

We are now one third of the way through the 100 Days!

Today Shane saw the Consultant, Dr Cam Curley, and all appears to be going well.

His blood counts are all fine, except his platelets which are really sensitive to some of his current medications. Shane's skin is going really well. He's been advised to reduce his steroid creams to see how the systemic steroids are working to manage GVHD. They are slowly working to reduce the need for steroids and immunosupression. Shane and Leapin Leeroy Loggins will just have to learn to live together!

The last few days Shane has been experiencing some unusual shaking, especially of his hands. It makes things difficult because he's already so weak so handling things like cups of tea is tricky! Apparently its from the Tacro (immunosuppression) and is a common side effect. This will improve as they start to reduce the Tacro.

The best news of today is the double negative result of his CMV test. This means he no longer has to be on the gancyclovir - the pump he's been connected to this last week. You can tell that Shane is just so relieved to be free of this baggage!

The scales have also been kind. Shane has put on about 1.5kgs! Food choices seem to be broadening, as we try different foods plus I think Shane's tastes are improving in general. He finished a meal on the weekend and said "That was good". He actually enjoyed the meal! Great!

Energy is also getting better every day. Shane hasn't done much exercise yet, but he's certainly kept busy since coming home. We are getting well underway with our plans of doing things around the house. The exercise will happen soon enough. Shane is really motivated to get moving!

xx

Day 30

Last night the lounge got me again! I just got settled into watching a movie, next thing I know its midnight and time for bed! In amongst all the snuggley comfort, I completely forgot about Blue Hugs! 

So my apologies for keeping you all waiting! 

Yesterday we had another review with the Doctor and all appears to be travelling well. Shane's blood counts are: RBCs - 109, WCCs - 5.5, Neuts - 4.2 and Platelets - 90. All within a very healthy range! Liver and kidney function are all looking good too. But the best news was that results from Tuesday's tests showed negative to the Cytomegalovirus. Two negative results means that shane can cease the treatment for it. This means no more pump connected 24/7! 

Our next step is to improve Shane's conditioning. His muscles are so weak at the moment, and he is so unfit its not funny. Yesterday we found ourselves walking up a small incline and Shane was puffing considerably with the exertion. He has really sore legs today! When you think about it, not only was he lying in bed for a few weeks, but his cardiovascular system has really taken quite a hit. We are really starting right at the beginning. 

But that is great because we can start afresh. It means there are no more muscle imbalances! We have plans to walk each afternoon after work, and we now have a wind-trainer so Shane can do some cycling in the comfort of our own home. Of course I'll have him doing lots of core-stability exercises to ensure he doesn't suffer too many aches and pains in the long run! He'll also get back into the gym soon to start some resistance training. 

If you remember strength = resilience. 

Plus doing things that are good for you send what we call "live' signals to your body. If you show it you love it, it will love you back! 

We'll also start doing some brain exercises. With the all the treatment Shane has had to his central nervous system, it is really important that we look after that area too! 

This is Shane back behind the wheel for the first time! He drove all day and it was so nice to be driven around! He managed to nail two reverse parks, but stuffed up a normal park! Classic! 

I would like to take this moment to thank everyone for reading this blog. When I checked this morning, there had been over 11 000 views which has blown us away. I am completely amazed that so many people are interested in our storey! And for those of you who waited up late, just to catch the next instalment, thank you so much for your patience!  

I hope that Blue Hugs has generally made sense and given you an insight into bone marrow transplantation. I have now exhausted most topics and as life returns to a new normal, there won't be much exciting action to blog about. So I have decided to reduce the blog from daily to every few days or whenever there is something exciting happening. Keep your eyes on my facebook page for updates!

Peace 

xx 

Day 28 - Happy Valentines Day!

By the way, Shane is doing well. Amongst all the hype of diet and supplementation I completely forgot to mention how Shane is going! I also forgot to mention the most significant part of him being attached to a pump 24/7. The medication is designed to be administered every 12hrs. The nurse that connected it thought it was a good idea to start it at 1pm that day. This now means that it goes of at both 1pm, and 1AM! That nurse obviously never spent the night connected to a pump!

There is one topic that I have been avoiding, and it is about time I finally tackle it.

The Doctors.

This is a difficult topic for me as I have developed a love-hate relationship with Shane's Doctors. Not all the doctors, its more the consultants.

Over the years, we have gotten to know these consultants reasonably well. We're on a first name basis with these doctors and we know bits about their hobbies, habits and families. This doesn't make it any easier when they have bad news.

There have been many absolutely heart-breaking moments when with these doctors. They are the bearers of such awful news, and this is a very heavy responsibility for them to bear. First they have to inform you that you have cancer, then they run some more tests to tell you what type of cancer, then they decide what type of treatment you require, but the most harrowing parts are when hearing the percentage chance that you will survive or when they approach you in the company of a social worker. We tend to (as best we can) ignore the percentages, we focus more on the fact that there is a chance of survival, no matter how slim, there is a chance. If a doctor is in the presence of a social worker, then you know the prognosis is not good.

There is not a moment now, after all we have been through, that I don't suffer anxiety when they walk in the room. One Haematologist is so acutely aware of my moods, and "worries" that he's said anything to offend me. It has been difficult to explain that it wasn't offence, it was more shock. If he took a step outside himself and listened to the words he was saying, then applied them to the person he loves most in his life, then he would understand a little better.

Don't get me wrong though, many of these Doctors are great people, especially the ones directly responsible for Shane's treatment. They have been genuine and caring. When all is going well, they're happy to have a joke with us, or a bit of a yarn. When things aren't so well, they're a little more serious about things and distance themselves somewhat. It must be hard for them to develop a rapport with patients, when few of them actually survive. I make sure that to them, we're not just patients, we're humans, and worth fighting for.

The other amazing thing about the Doctors at the RBH is they work as a team. They discuss all of their cases, analyse all the information, and make a joint decision about a treatment plan. It is comforting to know that you're life isn't being handled on the whim of one person's perspective.

Happy Valentines Day!

xx





 

Day 27

For the first time in my Blogging career I have had a topic request!

Mat has asked me about Shane's nutritional and supplement requirements. Which is an enormous topic when it comes to treating cancer. There are many who believe that this "diet" and that "supplement" can "cure" cancer. Being a cancer survivor, there are so many products that are pushed towards treating cancer because traditional methods are "poisonous" and more lethal than the cancer itself.

I have news for you. If it was possible to treat Shane's cancer with a diet / supplement I would have been all over it. But the simple truth is without traditional methods of cancer treatment, Shane would not be watching TV beside me. Yes the process has been challenging, but it has been well worth it. I have a very healthy respect for the intelligence of the treatments available that can treat the enormous variety of cancer types.

In terms of the doctors recommendations - you would be surprised how little information they provide. They prescribed Shane essential nutritional supplements that can be monitored through blood tests and especially those that can be affected by medications. These supplements include centrum advanced, magnesium, potassium, folic acid (vitamin B9) and ascorbic acid (vitamin C). In terms of dietary advice, the words from the wise were: "Eat whatever".

I found this very interesting. We all know chemotherapy and radiation therapy can both affect your taste and nausea can make eating at all very challenging. From a treatment perspective it is crucial to maintain a healthy weight to ensure you're resilient enough to continue with the full dose of treatment. So Doctors and Dieticians both recommend a high protein, high calorie diet. This includes: "Whatever"!

From my perspective, I believe that a healthy, varied diet is the key. Fresh fruits and vegetables either lightly cooked, raw or juiced will give you loads of good vitamins. Juicing is great to pack a lot of punch in one foul swoop. But I don't believe that is all you need. Lean meat, chicken and fish are also important, as well as natural yogurt, milk and nuts. I make the effort to ensure Shane eats well and that he gets as much nutrition as possible in his diet. I try to avoid foods that are high in sugar, highly processed foods and foods high in preservatives. But the problem with all this is, Shane has a free will. He will eat what he wants when he wants, and there's no stopping him. He does endeavour to eat well, but when his tastes are affected, he'll eat anything with flavour, healthy or not!

There are a lot of diets that are highly recommended for cancer, but if you do your research, many of them are unsafe, and extreme. And no matter what evidence you show me, daily coffee enemas do not make sense! In my mind, there is no way that coffee inserted into a rectum will make its way through your intestines back into your liver to open the bile ducts.

There are some other certain foods recommended for cancer that can cause Cyanide poisoning. What possible benefit could these foods provide that over-rides the potential for Cyanide poisoning? Especially when being used on such a vulnerable population!

Shane's Doctors also recommend avoiding alternative medicines that hasn't been approved by them. This is to avoid medication interactions, which, when you look at Shane's long list of meds, you can understand.

As you can see, there is a lot of conflicting information. In the end, I believe that you eat in moderation,  eat a variety of plant based foods, and lean meats and dairy, and do your research!

xx              

Day 26

Shane is now connected to his pump. Today he had a PICC line put in, much more successfully than last time!

He will be connected to this pump until Friday, which we thought was the last day of this treatment, but today he discovered that this may not be the case.

If you remember the treatment is for the Cytomegalo virus, the treatment is will cease when blood tests show no active virus. That could be another three weeks away!


Life connected to the pump is a pain in the butt. This bag has to go everywhere, even to the bathroom in the middle of the night. It has to remain hung over one shoulder when moving, and is very difficult hold it and carry a back-pack at the same time. In saying that, this is a better option than staying in hospital!

Blood tests today show that his counts have all picked up. Neuts are a very healthy 4.73!

 This is Shane with his Tech-deck skate ramp! Its a hard life!

Just a short blog tonight, as Im sure you are still processing last nights post. Thanks for all of your comments. This blog is a big commitment for me to write each day so I really appreciate your feedback.

xx

Day 25

We are now one quarter of the way through! Only 75 more days to go! 

Today has been very mild. I went to work, and Shane stayed at home with Kerry and ran some errands. 

No Doctors, no stress, just the simple life! Very nice. 

Then this afternoon I received a phone call from a friend who has just started this journey as a carer. Today they had some news that was hard to hear. She asked for my advice about how to mentally handle these situations. I have been pondering this all afternoon and thought I would put in writing for everyone. 

Now just remember, these are my private thoughts that run through my head, and these are some strategies that help me cope with the situation. They may seem ridiculous to you, but they work a treat for me. Most of these things I haven't shared with anyone, so, I hope you appreciate this insight! 

1. I find mindful practice really helps. It focus's your mind on the present moment and stops you from worrying about what may come. Its easier to focus on being practical and what you need to do to get yourself / loved ones through the day. 

2. Whenever I have thoughts about Shane passing away, I turn it into something comical which is very difficult to do. For example: I bring a picture up in my mind of us in old age, nagging at each other with grandpa Shane saying to me "Quit planning my funeral woman!".  

3. Breathe. No matter how scared you are. 

4. Do / listen / watch things that make you happy. 

5. Be grateful for each moment you have together, and for the work others do to help you.

6. This one is the hardest to get your head around, but probably the one most needed in these situations. Learn to accept that all animals die, and we humans are no exception. Some earlier than others admittedly. Be at peace with the possibility of a loved one passing. This takes the extreme fear out of the situation. Whatever happens, happens and we have no control over that, how we live is the only thing we can control. 

xx