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Hello all,
My name is James and my Dad was diagnosed with MM in October 2015. I have been waiting for the right time to come on here and share what has happened so far and what he has experienced.
Like many people, we were not at all aware of this Myeloma was and how it was treated. Also like everyone else, he was told that “There is no cure for this but it is manageable”.
My Dad’s treatment started instantly. Apologies that I don’t know all of the different type of chemo that he was taking over the course of around 13 months on and off. I know there was Thalidomide in there and Valcade but there was a lot of chopping and changing of the chemo as he already had complications with his kidneys and the chemo was not helping the matter.
A few months after my Dad was diagnosed, he had a fall whilst out on a walk. At this point he thought he had hurt his back like he normally does due to his previous work load. The problem got quite severe that he couldn’t get out of bed. The problem is that at this point my Dad was a typical “no, no it will sort itself out”. Sort of like I am myself really.
With him being lay down for so long (a week or so over Xmas 2015) he started getting a severe cough. Every time he coughed he was in agony with his back and was struggling to move. In hindsight we should have called for an ambulance long before this but he was getting very anxious of the situation and would not allow my mum to call them. Eventually I convinced her to call them and get someone to help him. The ambulance arrived and drove him to Cheltenham General Hospital – things took a turn for the worse.
I work and live in London so had come back to see him for a few days that week. On the day I was going back to London (Sunday) I wen to see him with my brother and my nan. He was not himself at all and it seemed like he was looking through me as oppose to listening to what I was saying. On the way out I had a word with the nurse to say “Whatever is going on in there, it’s not good because he is all over the place right now and he seems like his blood sugar levels are low” – my Dad is also a type 1 diabetic. The nurse told me that he is probably tired because of the drugs for the pain in his back but she will flag it up with the doctors.
I arrived in London at 7pm and then got a call at 7:30pm to say that my Dad has been taken into Intensive care. I was fairly shocked and swiftly got back on the next train to Cheltenham to be there with him and my family.
We met with the doctors that evening to get a report on what was going on and why he is here. They told us that he has severe pneumonia which was caused by him lay down for so long and not being able to cough up mucus. This in turn caused the infection of pneumonia. They had to take over his breathing as his lung capacity was very little and oxygen was not getting around his body quickly enough. They also taken over his kidney function on a type of dialysis (but it’s not called that apparently). Being in intensive care and the state he was in, they had to put him to sleep to let his body recover and so they can insert intravenous lines where they would not be able to on a person awake.
The next morning we arrived to the hospital to see he was slowly getting worse and his condition was severely critical. His breathing was even more restricted. We were then told that not only did he have sever pneumonia but they also flu in him which turned out to be swine flu! (I thought that disappeared years ago!? – apparently not and it’s quite rife in some of the UK hospitals but they choose not to talk about this clearly). It turns out he picked this up whilst on the ward he was on when he arrived into hospital some 5 days previous. Oh and they told us that he was the sickest man in the hospital at this present time. I wasn’t sure what to think of that really or whether I wanted to know that at all.
The doctor sat down with myself and my my mum and what to come was devastating to us both (quite hard to write this part now!). He told us that the situation is not good and hat he is really struggling with the oxygen levels, even with everything that they are doing i.e. blowing air into his lungs to open them out. He said that there is one more thing that he can try but there is not guarantee that this will work. He was very open with the situation – as he rightfully should be – and he told us that he may not make it should this not work. This makes me shudder at the thought.
The doctor said to us that he had previously attended a seminar in which they taught various new ways of getting the most out of restricted lungs. I can’t remember the name of the maneuver but essentially it involves turning my Dad onto his front because apparently when you are on your back there is a bout 1/5 of the lung not being used as it is being compressed by the weight of the body (the bit of the lung in the corner). It sounds easy just to turn someone over but when they have more wires than the back of my parents tv cabinet coming out of them, I could see why this procedure was a big risk – a long with many other complications, I’m sure.
He needed our consent to do this of course as it is not readily practiced. I said to him that I trust him and I am putting my Dad’s life in his hands and to go ahead with this.
The doctor is a genius! within a few hours his oxygen and respiration levels very slowly started to rise which to was just a miracle. Hours previously we were seeing it drop and drop and now it’s going up!! My Dad stayed in ICU for a further week and they were even able to wake him up 3 days after the procedure of turning him onto his front. Absolute joy all round and the doc even came in on his day off to poke his head around the corner to see my Dad awake. Not that my Dad knew who this man was but I told him that the man at that window (it was a double door lock down situation where my dad was due to spreading infections of the flu) had saved his life.
After a month or so further in hospital, my dad was free and able to go home at long last! It took a good few months for my Dad (mentally and physically) to get over what had happened. He lost 4 and a half stone so the work now was to get that weight back on and start moving around so he can get some muscle in his legs to start walking around like he did previously.
Once he was well enough, my dad could then continue with his treatment for MM. This had of course put his schedule back a few months but this seems to be all part and parcel of MM and the complications that can happen if you do not seek medical attention. Even if you think it will sort itself out – it may do! but why risk it!!? Get on the phone to your GP at least and get an opinion. My Dad never did and very nearly lost his life.
It must have been around April time that he started the treatment again and they decided to ramp it up a bit so they can play catch up (I will do my best to get hold of the names of all the chemo he was on). The aim of this was of course to get to a stage where he could have stem cell treatment.
8 months and lots of pills and injections later the results were looking great. His levels were at a point where he could now go ahead with stem cell treatment. This was a very happy moment for us and we could start to see some progress at long last.
The treatment was due to start in December 2016 but it got delayed due to the bed shortage in hospitals. The hospital that he would be going to would be the Cheltenham General Hospital, again. By the end of December they had a date in the diary for 1) his stem cell extraction – which will be in Bristol and 2) the date he will then go into Cheltenham GH (Oncology) for them to give him the strong chemo and the stem cells (please read other parts of the forum or literature that Myeloma UK have provided on the website to read up further on SCT if you are unaware of the procedures)
They managed to extract around 3.5m cells which was a little under what they wanted as they generally try to aim for enough for multiple transplants – not the end of the world though.
My Dad was told that he WILL at some point get an infection but it’s a case of getting it early on and managing it with intravenous antibiotics. He was in hospital for around 3 weeks in all and came away from the hospital with zero infections. Superman! The nurses were around the clock checking up on him and taking samples of blood to test him for these infections and of course to check his platelet levels. He did need his full load of platelets in the end as these levels had dropped some way.
He has now been home for around 5 weeks or so. His hair has fallen out from the strong chemo which they gave him prior to the SCT. He was pre-warned about this anyway and he seems to be managing fine! His back pain had for the first time slowed down in over a year. Although the pain is starting to creep back a little so we will keep an eye on that.
I was with my parents at the weekend and my Dad was out in the garden and had dug the soil in his greenhouse and planting up his seeds for his vegetable patch. We also finished off a chicken pen that we started ages ago and we got him some new chicken. He is in great spirit (if not a bit bored at home) and doing well.
There is a very, very long way to go and we are not yet sure if the SCT has worked but I will be sure to update anyone on that in the next month or so when the results come in.
I think everyone’s experience on here will be so alike yet so different. The treatments are different for each individual but the aim of everyone is to go into remission and hopefully find a cure to this awful disease.
I think that a little over a year ago where my Dad was and where he is now is just remarkable so I hope that you or your loved one can see this as an example that things CAN get better.
If you read this far then thank you and I wish you or your loved one all the best in the future.
Thank you James, what an uplifting story. Thank you for sharing, regards Adrian.
Jimbow…….you must be very proud of your dad, he is certainly a fighter and he deserves a long remission.
wish him the best of luck, and please keep us up to date.
regards
Tony F
Goodly. I’m quite laid back about myself but reading of other peoples’ experiences certainly stirs up the dust around here.
Regards
Taff
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