When Shit Hits The Fan - Part Dos

Hey, welcome back to my corner of the internet, so this is a long over due update of our whole cancer story. If you haven't already please go and give part one a read before this one just to so this makes a little more sense, if this post is anything like the last you may need to make a cuppa. 

All caught up? Great!

Heads up, some of you may find find some photos a little distressing. In these up dates I aim to be as open and as honest as we possibly can be. 

As predicted it wasn't long until we were back in the hospital, 2 weeks to be exact. Martin was being poked and prodded yet again. (I'm just glad he doesn't have a fear of needles, though I wouldn't be surprised if he developed one) With the previous cancer back in 2016 (when life gives you lemons) we were seen by a head and neck specialist professor Mehanna but this year he was on a years leave, though a little gutted we wouldn't be seeing him again (purely because he knew our case so well and did the operation on Martin and it would have been nice to have a familiar face in this circumstance) but we greeted by Dr Day and currently still under he's supervision. We've come to terms with the fact that if there is more than 3 members of staff in that room waiting for you, you know shits getting real. (heads up there for you incase you find yourself in a similar situation) 

While Martin was in the CDU after we arrived back in the UK he had an Xray, Dr Day had the results back and went through them with us, this is where the shock and heartache kicked in all over again. There are so so many tumours located on both left and right lung, particularly the left which is where the largest ones are. One takes up half of his left lung, its completely gut wrenching to see. It's things like this that make me wish we had little Xray systems built in and I wish I could have seen this coming and dealt with it sooner. Though a scan that took place at the end of last year did show small amount of unusual activity on his head just above where the previous cancer was located, now has a small tumour just above his ear; but more on that later. We weren't informed of this change, had we have known we probably would have been a little open minded about any potential symptoms. Such as the persistent cough that he had from January right up until we went on holiday, or the searing pain he had in his back and chest which when we went to A&E about they sent us away after telling us that he probably just pulled something from the coughing from a "cold". At the time we had no idea just how much the NHS had let us down, I know we can't fully blame them. We should know whats normal and whats really not right! But I just would have thought they would put chest pain and a persistent cough a little high on their list of concerns. I have been told thats theres no point in wasting my time thinking about all the what if's, and tell you what thats been bloody good advice but its not always the easy option but at the end of the day thats not what helps us move forward and get on with it. 

After a farily lengthy chat with Dr Day about the scans and the diagnosis that the cancer had returned and the location and amount of tumours made him inoperable, double whammy to gut there. This time around was different, yes I still felt like the world stopped around me and had a lump my throat for holding back the tears, we were some what a little more prepared for this. But it did not make it any easier to process, whereas last time we were imediantly told the plan going forward (to operate) we were now being told that were going to be handed over to yet another Doctor, again another specialist. this time a doctor who specialises in head and neck cancers that have traveled into other parts of the body. Apparently this is quite a common thing to happen, in most cases it does travel to the lungs. This is about the most normal thing about Martins whole cancer. But this is also where I feel the NHS failed us a little again... if it as common as they make it out to be, why weren't we sent for a CT scan for his chest at the end of the year or even the beginning of this year would have been nice, ya know? Maybe we would have seen it a little earlier? But again, "what if's" don't help. That didn't happen and we are where we are. Just before he passed us on to our new Dr he booked Martin in for a PET scan (positron emission tomography), this was going to allow our new Dr and Dr Day to see  a clearer image of Martins insides as this scan uses a special dye which contains radioactive tracers which was injected into his system, this dye basically clings onto cancer, therefore lighting up his tumours like New York Christmas lights. This scan is something that they only try to do in extreme circumstances as it can become rather damaging for the patient if done too often, the nurses wouldn't even go near him to open the door to let him out of the room they just said " you can leave now" now this stays in his system for quite some time after its done, so for 24 hours he had to avoid the elderly, young children and pregnant ladies and was recommended that I keep a good 2 meters away from him for a good few hours after. A little difficult when we need to get in the car to go home. 
Radioactive Dye 

After being given the dreaded cancer news for the second time we knew that we were going to have to have a little chat with the very nice cancer support nurse, Karen. We met her last time in 2016 and I have to say it's nice to have a friendly face in the room when your being given that kind of news and the fact she's in the room with you means you don't have to repeat the whole story to her and she can get right into her job. She took us into a little side room where both sat in silence, she gave us a little quite time just Martin and I, we both cried. Hard. We thought it was over and done with and 2016 was going to be the last of it, we're engaged now, we want to get on with our life and plan our wedding and look at buying a house and having a family. You know, the good stuff. The that stuff that feels right in your heart of hearts when you've found the one. But we were still yet to find out just how bad it was this time around. 

So our new "specialist" Doctor, Dr Kong. Sometimes when you get moved to a new doctor you panic that they aren't going to be as nice or as good as your previous doctor, and in this case I felt comfortable in his hands, he had answers for most questions that we asked. Apart from "Why has this happened, what caused it?" which is something I guess we will just never get the answer to, there are somethings just don't have an explanation. Our first appointment with Dr Kong was a get to know you session and understand exactly and directly from us what happened on the dreaded holiday. Yes, this was hard to repeat yet again. Every time I repeat the story its like re-living it all over again and honestly it was one of the worst days of my life and quite frankly if I could I would totally wipe it from my memories. I quite literally have nightmares about it, I wake up in a panic state that he's not here anymore and I frantically search the bed and roll over to find him just to make sure he's still there and breathing! 

After the initial appointment we went back a week later, which had given Dr kong time to come up with a treatment plan that he believes is going to be the most beneficial to Martin. Now with Martins cancer, its so rare that there isn't really any previous cases to go by and we need trust Dr Kong's knowledge in his field and hope for the best. What he has recommended for us is a chemotherapy that is usually used for patients with breast cancer and a another that is usually used for patients with a more common head and neck cancer. Putting both of these together has made a toxic "potion" (thats what he calls it). He has said that this is the strongest that he could possibly recommend. He did give us the option of a few of types of chemo that he had thought could potentially work but these were what he had discussed with his colleagues and believed was going to be the most beneficial to us. Now the reason he's used the "go hard or go home" method is that this is Palliative chemotherapy, meaning that without any treatment what so ever Martin could of had a potential life span of 6 months, maybe more maybe less. Trust me thats harder to hear that the word "cancer" Now this wasn't something that we found out until we left the appointment and we were given a pice of paper by Karen, our support nurse. The paper was a slip that would fast track us to receive benefits such as PIP and Universal Credit, they only fast track the extreme cases, to ensure that you able to live your life as comfortably as possible. This again is a slap across the face that brings you to reality, that shits really real now! She also handed us sick note signed by Dr kong, signing Martin off work for a minimum of 6 months, this can be lengthened should it need to be. But the time scale of his chemo should have ended by then. Should be receiving his last Chemo end of October - mid November. We've learnt that not every week will be on schedule as Martin has to stay in hospital for a night to have his chemo they need to ensure that there is a bed ready for him. Some times it gets pushed back a day or 2. If that carries on he won't finish chemo before Christmas.

All he wanted to do after being in a hospital bed for a few days was drive... I wasn't keen on the idea, but I'm weak 

 Martin is was one of the most kind hearted and selfless people that I have I ever met, its one of his many amazing qualities. Because of these when given the opportunity to be part of the 100,000 Genome Project he was eager to help in what ever way he could. But for this they require a small biopsy to test one and with all of the tumours on his lungs being inaccessible the only option was the small lump with is just above his right ear, its so close to the surface which made it the easy to get to but didn't make it any less painful for Martin. This was the final thing that needed to be done before he could start his Chemo, finally. Or so we thought. 

When he was finally in hospital they took every precaution that they could because of the seriousness of his case for a few weeks Martin had been coughing a little more than normal but with the addition of bringing up blood each time, which alarmed the doctors on the ward enough to contact Dr Kong. Their conclusion was that he had an infection. This was yet another delay as they put him on a weeks course of antibiotics and for 3 days they kept him in hospital to keep an eye him and hope that the antibiotics worked they had also given him Transamaic Acid tablets, these were to help with any bleeding that he may have on the lungs and stop the bloody cough. And much to my dismay he drove home after his 3 days in hospital. He finished his course of antibiotics and acid tablets at home and returned to hospital the following week, hoping that this time he would get the all clear and the go ahead. 

8 weeks after his initial fall in Spain we were finally on the right track, with his PICC line inserted to his left arm. We finally get told that he's all good to start his chemo!!

We created a Facebook page called Our cancer Story, to help keep everyone up to date with out having hundreds of questions a day. Don't get me wrong we are to grateful for all of the care and support we get from our friends and family but I also forget what I have told to who, this way everyone knows all the same info and no-one gets left out. 


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