Bear Rock….

 

It seems things go wrong just when we are about to go away. This was the case at 4am this morning when we could hear a burst pipe or constant running tap. On investigation we couldn’t find a thing but the worry of the house flooding whilst we are away next week was enough for both of us to get up and start the day. The positive in it was that I got everything done very early and managed to exercise for longer as I felt I had more time. The issue is getting sorted and I feel happy that we won’t come home to a soggy house. Well not at least from a burst pipe. I’m not too sure about the weather though. Everything is damp and moist. (Moist is a horrible word eh?!)

Today I have been getting things ready for the off and have also been working all day with clients. I like to squeeze as much out of my days when I am working. It makes it worthwhile. It’s chemo day one cycle three today. I have reduced the anti sickness down further especially since finding out that dexamethasone affects insulin levels. So far I feel great and haven’t had any signs of an upset stomach at all. Yay!

Yesterday I had the pleasure of chatting to another TNBC survivor. Going back to what I said the other day about synchronicity, well this happened to be one of those moments. I ‘met’ a lovely lady whose story could have been mine. Same timings and exact same way that the canSer spread, to how we both felt in the beginning and the lack of changes we made then, to now. Of course talking to people in the same shoes as I can be humbling and I completely feel how they feel when they are going through mixed emotions and feeling vulnerable and the crazy thoughts that go through your mind such as throwing all your clothes away because you won’t  need them for much longer and so on.

But what it does make me realise is that we are all such normal (and may I say it about myself) ‘nice’ girls. We don’t want much out of life just to be happy. It’s not too much to ask is it?

It gets me every time to think where is the answer to this crazy disease? How can there be so many resources and experts looking for the answer for so many years but to no avail?

I still think the answer is probably staring right at us. Why haven’t we got any great inventors or scientists who can make that great discovery? People deserve to have a fighting chance. And this isn’t just for canSer but also for HIV and AIDS and other debilitating diseases such as multiple sclerosis. Life seems unfair sometimes… But then I think how lucky I am, then I am thankful again.

On chatting at length yesterday it was clear that my new friend has also bagged herself a ‘Bear’. My best friend bought my husband a Christmas present that was only delivered yesterday. It was a painting by an East London Artist, a girl from the area of my birth called ‘Bear Rock’. The picture portrayed a big bear head in choppy seas with a girl with a cat’s head sat on him. I couldn’t believe at how uncanny the painting was at depicting our life. Utterly awesome. But that makes me think that there must be many couples in such the same situation (and of course completely lucky to have themselves a Bear!)

One thing that cropped up during our conversation is how she feels bad and sorry that her husband has to go through all of this. I completely understand and I go through phases of feeling the same. But I think I’d go to the end of the Earth for my Bear, so why feel sorry or bad. We are dealt the cards it what you do with them that really matters. Love conquers all!!

I still have three clients left to do today then I really want to eat and go to bed. My bed has never looked so good! Ha ha! So Ta-ra! X

Guest blog by Bear.. Gamma Delta

I guess by now, you know that if it’s a Bear Blog, then it hasn’t been a good day.

 

We are in Germany for treatment and we had two main objectives today. Firstly to unravel the tapestry of inconsistencies that have accrued over the last 4 months and then to have a successful gamma delta cell treatment.

 

The good news is that we achieved one of those goals. Dr Nesselhut (Jr) was very candid with us and we are now able to understand the reasoning behind decisions in respect of treatment levels. If that all sounds a bit MI5 it’s because it is sensitive and not really for release. The most important confirmation is that Claire has not suffered any degradation in treatment and matters are now being addressed, so onwards and upwards. The bitter sadness was again present though when the explanation of where the donor cells Claire had last time became apparent. Donor dells are only available if they are not “used”. Being a bit think skinned, I then managed to ask “Why wouldn’t they be used?” It’s a canSer clinic Bear – why did I think they weren’t used. Have never felt so sick.

 

Achieving point 2 proved a lot more problematic.

 

Having confirmed that this time the Zometa (chemical used to infuse the cells – that destroyed mine last time due to a fault) was good and I had managed to donate a good amount of cells for Claire we prepared to administer the vaccine. The dendritic vaccine was to be given afterwards directly into the lung intravenously and half under the skin of the arm.

 

Claire was attached to the automated chemo style syringe dispenser and the doctor and nurses said see you in 30 minutes. Almost immediately Claire felt pain in her chest that spread from the front to between her shoulder blades. Being a hard east end girl she told me to “leave it” and let the treatment continue. After about 20ml of solution and about half way through, I noticed other symptoms and realised she was going into shock.

 

The medical staff were awesome. They arrived like a battalion of winged archangels and immediately realised that she was having an extreme allergic reaction that was enduring shock. Her blood pressure was dropping and they feared cardiac arrest.

 

By now Claire was pretty much unaware of what was happening but she was administered an anti histamine, calcium and another drug via oral spray that I could not catch the name of.

 

This seemed to do the trick and her pressure to was restored. However by now she resembled Will Smith in Hitch and had swollen lips, puffy itching and watering eyes and her skin was so red and hot it looked like it may split. Even more oddly the injection spot used for the last DC vaccine had come up on her arm like a golf ball.

 

We all sat back and waited. After about 45 minutes Claire could speak and was (can you believe it) “keen” to crack on with the treatment. As she put it “That’s £5000 of my cells in that syringe and I want them!”

 

Needless to say the Doctor refused this request and sent the remaining vaccine to the lab for a thorough investigation. It is a real mystery as she had donor GD cells last month and it was fine. In true German joke style the doc told Claire, “you are allergic to your husband – yes?” (many a true word said in jest)

 

He also refused to administer the dendritic vaccine into the lung and couldn’t use the arm as this still resembled a lunar landscape, so he injected it into the stomach. How that didn’t make me sick I’ll never know.

 

We then had to wait another 45 minutes to make sure she wouldn’t turn into the Incredible Hulk before a mad dash back to Hanover airport. She is still a very poorly bunny but a night in her own bed and some loving hugs should put her right, while we wait with baited breath for the lab results.

 

How amazing if this turned out to be the sequence of events the actually created a cure? I wait for my little miracle to happen. Bye – Bear

Bear Blog…

Claire has asked me (Bear) to guest blog today. We had the results of last weeks scan and we have been reminded in cold, unemotional science script that we do not have the answers yet, to the question “How do you beat canSer”.

 

The radiographer has told us that the main tumour has doubled in size and that the lymph tumours have grown “in the interval”. This has come as quite devastating news and shows a definite progression of the disease (as the report stated). Claire is devastated and feels that she can’t be strong anymore and that old enemy “worry” is front and centre with his hideous henchman “it’s not fair”.

 

So I thought I would take the report apart a bit and see what happens when you put some specialist thinking to it, rather than the more focused and process driven view of the lab tech.

 

So firstly the hidden in the report is the following:

 

Claire’s liver and kidneys are entirely disease free

There has been no reoccurrence of the fluid on Claire’s heart (pericardial effusion)

The pleural spaces (membrane around the lungs) are disease free

Claire’s neck and armpit lymph nodes have not enlarged at all and this means disease free

 

So to the “bad” news. The lung tumor has has rapidly doubled in size, but remains in isolation. We have been told and even seen in previous tumour death (lymph tumour last May ) that the canSer seems to grow rapidly. This can be caused by both a defence response and more impart antsy by the good cells attaching to the tumour as they attack. Previously this was the canSers last death throw before necrosis And disappearing.

 

You can shoot an arrow without pulling the string back and Dr Nesslehut even described this process in our last consultation. His Swedish understudy in broken English described the administration of Gamma Delta cells as the final blow to kill the canSer and it seems likely that this is what we are seeing by the major reaction so shortly after the GD cell therapy.

 

Oddly enough the pranic healer was very specific in telling Claire that the canSer was weaker than before her last scan and she was getting better in her lung. The irony of the Universe never ceases to astound.

 

This aside the tumour is also described as “the right upper lobe” “previously described as lower lobe lesion” – sound like it’s running scared to me!

 

As for the lymph this is even more astounding. Back in February the tumour was described as growing very quickly. We applied the above theory and sure enough in May it was completely gone not even mentioned. since that time no lymph canSer has been reported until now when, the detail actually does not state that canSer has caused the lymph swelling and in fact the main reason for this could be an auto-immune response!!! No idea what could be causing that when Claire has been pumped full of immunotherapy ( it is especially caused by detection of something foreign in the body, like Mr Bruce MacKay’s cells for example) – so in actual fact pretty good news as it shows the therapy is causing a response.

 

So should we be sad, is this a set back? In truth I can’t say, but the evidence seems very strong that this is possibly the best news ever. That my beautiful wife is about to become my amazing miracle and if we a really give this canSer hell, if we choose now, to kick it hard, bring new treatments to bear and persist in making Claire’s body the worst place to be in the Universe for canSer to be, then my next blog will be the happiest moment of my life.

 

Needless to say, if you knock us down it’s going be a big problem, because we come back twice hard and really vexed.

 

Thank you so much for every single positive thought and will – love & light

 

Bear

 

Happy Anniversary Bear..Where has the time gone?

How time has flown but yet feels like I have been with Pete all my life. We have decided to go back to where we had our wedding reception with friends and celebrate in style. The weather is till baking so we have drinks and a Frisbee to play in Hyde Park in London too. Yet another fun filed weekend ahead as we take advantage of the sun we are back down to our little boating retreat, Brighton. I’m really getting a taste for it.

Anyway all the details and more to come on Monday. I’ve got to get myself on the road! Cheerio!

 

How I love my best friend and husband! Happy Anniversary bear. X

There are more Bears out there…

I don’t know what is wrong with me but I only slept for 3 hours last night. I am at this moment a bit jaded. Although, first thing this morning I was wide awake and raring to go… Don’t ya just hate it when that happens? I don’t think I am preoccupied but I must have thought about absolutely everything last night…. such a shame. I feel cheated. The night before however was a completely different story. I had to go to bed at 8pm. I was falling asleep trying to watch a TV show. I just didn’t feel right. Every day is so different. I think I am very sensitive to what my body needs and when I need to sleep I just have to listen to it and go for it. I had such a good day though with my clients. A whole afternoon of working and I loved every minute of it. I really do look forward to my next day of working.

I definitely feel that I am eating too much at the moment too. I’m not sure if I am doing it out of boredom or what? But I don’t like it. I like eating only when I am hungry and I don’t want to let my head take over and get the better of me. It’s my head that got me into this whole mess in the first place!

Yesterday was a good day, after seeing Ray for a visit I had my reflexology session. It was amazing as usual… I simply can’t get enough of it. She really feels things are working well and that my lungs are good. That’s what I like to hear. Needless to say still no appointment for the CT scan but that’s ok as I am in no hurry to have one!

It dawned on me today that all I ever wanted was control and the more I tried to control things and my life the less I had. In fact all I had was anxiety and would rush around like a looney. Now I am trying to control everything in my life less and I think I have more of a handle on it… weird how things go…… A good example is my kitty. I tried to make her a lap cat for so long and would grab her for cuddles and she hated it, and me! Now every morning she leaps on top of me in bed and sits facing me with a big smile on her face. All the years I have had her and all I wanted was to have a lap cat. I stopped trying and there I go getting what I want. There’s a lesson in there.

You know it has made me think would it really matter if the canSer didn’t go fully? I will still have to have a CT scan regularly and as long as I am well I will be fine. I am starting to understand that canSer is a chronic illness not necessarily a life threatening disease. That’s a real thought…..

 

Today we have friends visiting from Nottingham. They are staying with us for the weekend. If the weather looks good tomorrow then there is nothing better than punting and swigging champagne out of the bottle but I fear we may need to take a brolly or do something more suited to the weather. It’s been raining here all night long. I don’t mind as my garden needed it but I could do with some bright warmth. I feel like a wilting flower. I am striving to go into full bloom but without the rays it ain’t gonna happen!

I saw this link today and thought I was the only lucky girl in the world to have a bear but it seems there is another lucky triple negative survivor with a Bear.

This article featured on American news is really heart warming…

‘Pandora’s Josh Huffman was one of five people honoured Wednesday in Columbus as one of Stefanie’s Champions.

The program annually honours those whose dedication and strength were powerful influences in the lives of cancer survivors. Huffman was nominated by his wife, Laura, a breast cancer survivor.

This is not the first time Huffman has been honoured. In August 2007, he was recognized for saving a woman and child from a van submerged in a flooding river near their home.

“I felt his strength and calmness … it went straight to my soul during a time when my strength and sense of peace was nonexistent,” Laura Huffman said about Josh. She did not tell her husband she was nominating him for the award.

“If she would have, I would not have let her enter my name. I like to stay in the background,” Josh Huffman said. He learned about being selected as one of the champions on Valentine’s Day. “She gave me a card telling me about the award.”

Laura said she learned about the award while reading a book by Stefanie Spielman. Speilman wrote about how her husband, Chris, went above and beyond his role as husband to care for her throughout her battle with cancer.

“It embodied everything Josh was for me,” Laura said. “Josh didn’t skip a beat. He learned everything about breast cancer including the terminology and treatment plan. He always was able to tell me what to expect and what was next.”

At age 31 with a husband and three small children, Laura was diagnosed with advanced triple negative breast cancer. Laura said Josh was at every appointment, making the drive from Pandora to Columbus, regardless of work commitments or how big or small the appointment was.

He rallied Laura through 16 weeks of dense dose chemotherapy, bilateral mastectomies, 38 radiation treatments and two stages of reconstruction. He started a binder, filling it with notes, asking questions and researching everything possible.

Josh Huffman said the hardest part about being a caregiver is seeing your spouse going through the treatments, pain and challenges of having cancer.

“The blessings we received though are all the help we had from our family, friends and church,” he said. “The good part of people around you shines through when you’re struggling.”

Prior to the banquet at Ohio State University’s Archie M. Griffin Grand Ballroom, the couple were interviewed for several hours to allow the “Stefanie’s Champions” staff to prepare a video on their story. The video was shown at the banquet.

Josh Huffman was presented a glass plaque during the awards ceremony. Accompanying the Huffman’s to the banquet were their three children; Laura’s mother, Kathy Green; Josh’s parents, Charles and Jayne Huffman; and his sister-in-law Amber Huffman. Laura’s father, Don, was out of town and unable to attend.

“We had the opportunity to meet Urban and Shelley Meyer, who were the honorary chairs during the ceremony,” Josh Huffman said. “We really enjoyed that. Especially our children.”

The couple said they will continue to advocate for cancer research and urge their friends to get screened for early detection.’

 

Awww she is a lucky girl as am I. Bless our Bears. Light and Love. X