updates
Going Well
Just a short update today. It was March 2017 when I posted my last update and I haven’t been back to my blog since. Things are going well. I met with my consultant yesterday and my cancer is still under control. I’m classed as being in remission but strictly my cancer is still there, just its current levels are below those that register is a blood scan. This was excellent news for us.
Reading back on my previous posts around March, I realise now that I was going through a pretty low period although I’m not sure I recognised it at the time. Despite being stable since my transplant I still struggle to come to terms with the fact that my cancer is non-curable. I touched on it yesterday with my consultant, as I still have problems with fatigue and days feeling pretty lousy but I think having been on pain meds and chemotherapy for such a long time it’s understandable and just something I’m going to have to learn to live with. I think as well that sometimes people around me forget that I’m still dealing with cancer and some are shocked to find I’m still on high doses of pain relief and chemotherapy, although it is a small maintenance dose.
Not much has really happened since I last posted other than being told by the pain clinic that at present there is nothing more they can do about my pain levels. I’m already on high doses of pain relief so they don’t want to increase it and as for attempts with injections, I’ve reached the amount allowed to the NHS by the government so it’s not a current option. They’ve asked me to speak to a psychologist about setting goals and learning to live with pain and despite initially agreeing, I’ve decided against it. Its all a bit touchy-feely for me personally. My pain is what it is and I don’t think I really need a psychologist to tell me that I need to learn to live with it.
I’m happy to report though that things are pretty good and I’m feeling fairly positive at the minute. I’ve been keeping myself reasonably entertained by learning graphic design and Adobe Illustrator skills and I’ve been involved in completing some artwork for a friends band and I’ve bought a mug press so messing with creating my own mugs so it’s all good. I’m adding a page to my tips today. I learned today that if you’re registered disabled you can have free access to the Tyne Tunnel (thanks to nanna for this info 🙂 ) so will provide a link and info for that.
Myeloma Awareness Week
Its been a while since I touched the blog as I feel there is not much to tell however its Myeloma awareness week it would be a good time to put something down. In addition to that something fantastic happened this morning. My cousin, Tina, whom I’ve not seen in a very long time but keep in touch with on Facebook contacted me today to say she’d been accepted as a stem cell donor. I can’t tell you how chuffed that makes me. During my own transplant I was lucky that the hospital where able to harvest my own cells. A lady that was with me at the time was not so lucky. They weren’t able to harvest the required mount of cells from her. That meant that unless she could undergo the process until they could get enough cells then she was likely to need a donor like Tina.
Stem cell treatment is being used for all kinds of illnesses now, I read an article recently about how they were using the same procedures to restart the systems of people with MS. I guess that this means that Tina’s fantastic donation could be totally life changing for someone and maybe even life saving for someone else. Its a fantastic gift that can’t be underestimated. For a cancer sufferer like myself stem cells help the body recover after a Treatment of High Dose Therapy. Its better to leave it to the experts to explain things fully so there is a very useful article on the Cancer Research UK website if you want to learn more.
Since my own transplant things have gone reasonably well. The transplant itself has been a total success. My para-protein counts continue to be very low. I have had some issues with fatigue and with continued bone pain, particularly in my back and hips. I also get regular cramping in my hands and legs which may be down to the maintenance dose of chemo I take. Only recently my back seized again and I was back onto two walking sticks. It was extremely depressing as I worried that I was going back to the start however over a few days things have improved a hell of a lot.
My consultant is referring me again to my back consultant so things will get sorted out. I’ve found living with the fatigue very difficult oddly enough. Its sounds as if it wouldn’t be much if an issue feeling tired but its difficult when its taking an age to sort yourself out every day and when your just waiting for bed time to come around again. Its a nightmare for going anywhere as I get exhausted so easily. Its also a constant reminder that my Myeloma is still there. Still I think myself very lucky for being able to handle the treatment I received, including the stem cell transplant and for the ongoing support I’m receiving from the NHS. Some people have it far worse than I do. I am also made up that a family member of mine has put herself forward as a stem cell donor. Thank you Tina Duke your a star. 🙂
If Tina has got you thinking of donating then you can read a little more and watch a short video on the NHS website as well. If you would like to learn a bit more about Myeloma awareness week then hop over to Myeloma.org.uk
Catch up time.
It’s been a good while since I posted so I thought it was a good time to provide a little update. Since the autoglas stem cell transplant things have been going well. I am still classed as being in remission. I am now taking a maintenance dose of Lenalidomide (a chemotherapy often referred to by its trade name, Revlimid ) along with a few other drugs. This will be a permanent arrangement until I’m no longer in remission which will happen at some point, however this could (hopefully) be a long way off.
I still take MST morphine twice per day and Orormorph (morphine liquid 10mg in 5 ml) as and when required. I’ve been to see a consultant about the continuing problems with my back. Initially he wants to try injections into my back to see if they relieve the pain. Got to say that I don’t think they will do much and I am not entirely convinced that the consultant fully understands what has been going on despite having met him three times now and trying to explain what has been going on. The first time I met him I thought he fully understood but now I’m not so sure. Still that can be sorted as time goes on. I did have a conversation with a patient who had been through exactly the same treatment as me and she reported identical symptoms to me (fatigue, bone pain) which for her lasted about a year after the transplant. Unfortunately a year on she is no longer in remission.
I’ve now retired from work. This was a really difficult decision and I miss it like mad. The decision had to be taken both for my benefit and the benefit of my employer, given the amount of medication I’m still taking and the fact that I’m having real problems with fatigue. which I’ve had a long time now Fatigue has been a symptom right through my treatment but it seems to be getting progressively worse rather than better. This may be something to do with my medication so I’ll be discussing it with the consultant this week. I also have to attend hospital every four weeks to have Zometa infusions and then again every month to see either my consultant or senior research nurse. Unfortunately things are a bit out of sync so I am there every couple of weeks. With all that taken into account I was unable to give my full attention to work. It was a mutual decision supported by the pension’s medical officer. I have to say that my employer and colleagues have been fantastic right from the beginning. I couldn’t have asked for more support. Hopefully it’s a blip in the road. I am going to take a few months and then regroup. Who knows what opportunities will present? Onwards and upwards! My mind is already ticking.
All in all everything is still very positive and going pretty well.
Transplant Update
Well this is the first update since my Transplant. It’s all gone well. I met with my consultant yesterday and he described my Myeloma as “Flat”. That’s great news for me. It’s not cured as unfortunately there is no cure at the minute but at the moment it’s not active and it should not return in the near future at least.
I’m not going to sugar coat it; things have been tough throughout the transplant, both physically and psychologically. I struggled particularly with the high dose chemotherapy after which I immediately started vomiting and which did not stop for at least three weeks. I felt terrible immediately after the chemotherapy and as a result can’t remember too much about the transplant itself. I can remember that it was no more difficult than a blood transfusion that took a few hours. They simply fed the stem cells, in four bags, back into me via a drip. I did spend the first few days after the transplant apologising as the stem cells are stored in a preservative and whenever anyone came into my room they were instantly overwhelmed by the smell of either sweetcorn or tomato soup depending on the nature of their smell senses. I also have some damage to a vein in my arm caused by a reaction to the chemotherapy. Its pretty painful but it should sort itself out in time.
I did get an infection when I was in hospital and the doctors did think it would delay me leaving hospital however in the end it cleared fairly quickly and my blood counts returned very quickly meaning that I was allowed home after two weeks. Considering I was expected to be in hospital for up to six weeks that was a real bonus. The hospital stay in general wasn’t a pleasant experience for a number of reasons.
Since coming home I’ve had quite a few bad days when I’ve felt ill and I’m having a real problem with extreme tiredness. I mentioned this to the consultant yesterday and he said it is likely to take me six months to fully recover. This was confirmed by a lady Nicola and I got talking to in the waiting room that also has Myeloma and who also described her transplant and recovery period in the same way I have so if you are waiting for a transplant then I may have given you an idea of what you might expect. At the end of the day it’s all a means to an end although not very nice it is absolutely necessary.
Now I just need to push myself to get out more and build up my fitness and that should help my recovery but for now its all good in the hood 🙂
You’ll also be glad to hear that this will probably be my last rambling for a while. Fingers crossed.
Time has flown – Transplant time.
Tomorrow (provided there is a hospital bed available) I take the next step of my journey with cancer. I’m off to hospital to receive my high dose chemotherapy. I’ll rest on Wednesday then on Thursday the stem cells taken from me earlier will be returned to me (strictly speaking this is called a graft as I’m getting my own cells back but it is regularly referred to as a transplant), I’ll be transferred from the Freeman hospital back to Sunderland Royal. I was offered the chance to stay at the Freeman but logistically it’s easier for me to be at Sunderland. If my blood counts haven’t fully dropped then I might be allowed home for a couple of days, returning to stay in hospital for a while once the counts have dropped. I’ll stay in Sunderland until the counts are up again.
I’d be lying if I said I wasn’t apprehensive about this next step because I’m not fully sure what to expect. I’ve had the chats with the nurses, consultants etc. and they do their best to prepare you and I’ve read a few blogs where people are sharing their stories but I’m still pretty nervous about it. The biggest positive I can take at the moment is that they guaranteed I’ll lose my hair with this chemo which, if you know me, is fine as my hair is pretty much long gone already. I guess the only sensible thing to do is to do what the doctors and nurses tell me to do and it will be fine. They have seen me alright so far and besides most of what I’ve been through this year has been with the aim to get me to this point. Get this out of the way and hopefully the cancer can be classed as in remission. Since the very beginning I’ve had this period of time on my radar. A focus point if you like.
I think that following the advice of the NHS staff is probably the best tip I could share so far. I’ve come quite a long way this year. The time has just flown by since my initial diagnosis. Below I’ve added some more tips that have helped me along so if you are going through the same thing then I hope this helps but as always I acknowledge that your journey will be very personal to you and not necessarily the same as mine.
Firstly, try to be positive. It’s not easy all the time. I’ve had times when I’ve been far from positive. You might have seen the cancer advert on TV about it being a lonely place? It can be, not necessarily because you are on your own but because it can be extremely difficult to tell people what you’re going through or what you’re thinking. I’m very lucky as I am married to an amazing woman. If I’m a bit down then she gives me the boot in the arse I need to get me back up again. I can talk to her about anything although I do try my best not to burden her with it all as it can be difficult for her too. I would hope that she has also found someone other than me to talk too. Nicola says our new family motto is “wing it” , the Latin for which is “Cornu illud” (according to google) so I think I’ll have a crest made. Just remember the people around you also need support; it’s not all about you.
So then my next tip would be to talk to people. You’ll quickly establish who you can talk too. It might be a family member or a stranger; it doesn’t matter as long as you don’t bottle it up. It may be that you can’t speak to people face to face and if that’s the case then consider writing it down. Use forums on the various support group sites to speak to others going through the same thing you are. I started writing this blog because it’s easier for me to write things down sometimes. I also find it an easier way to explain things. I know some of my family read these ramblings of mine so it can help me to answer any questions they might have without having to talk it over all the time, particularly at the times when I’d rather not speak about it.
Try to find your own focus point in your treatment plan. Something to aim towards. Mine has always been this point in time. My next focus point will be getting out of hospital and looking forward to getting my back operation to help with my mobility and reduce the pain in my back. I’m pretty confident that it will all go to plan as I have faith in the NHS.
Next I’d reiterate that you are not the only one going through this. There are thousands of others. It’s not all doom and gloom. There is always someone somewhere worse off than you are. I don’t say that in a ridiculing way to them but rather to remember that this is the case and as a reminder to be thankful that I’m in a position of being able to receive treatment and to be lucky in that I have the help and support of the people around me.
Next I’d say that you need to find something to do. If like me you’ve been unable to go to work then find something to do. Occupy the mind. I’m a keen photographer and my mobility problems have temporarily stopped me from being able to do that however it hasn’t stopped me researching techniques online or from practicing new Photoshop techniques. I’m keen on web design so have been doing bits for a friend of mine who plays in a band. I’ve tidied up his website and put together some of his gig posters when I’ve felt up to it. I’ve also watched endless amount of courses on PHP and Java programming (may sound boring to you I know but it’s something I’ve wanted to find the time to do for a long time now). I still don’t fully understand it so it gives me something to continue to do. There is a great group on YouTube called the New Boston and they offer courses on everything from home brewing to computer programming and I watch a lot of their stuff. Take up reading or knitting, watch a TV series. Do whatever floats your boat but find something otherwise things can become very depressive very quickly.
I think that’s enough for now so the next time I post will be to let you know what happened in hospital with the stem cell graft. 🙂
Stem Cell Harvest
Pre – Harvest
Last week I was preparing for the harvest of my stem cells which happened on Tuesday this week. I was instructed to inject Lenograstim for 4 days. One injection into each arm (4 vials of 263 micrograms.2 vials per arm). My daughter, Terri and my Dad took on this task as it was a bit awkward for me to inject correctly into my upper arm so many thanks to them as I know they weren’t keen on doing it.
I had been warned by my consultants to expect a “little” bone pain. I accept that everyone is different in the way they react to some medications but what a bloody understatement that was. The first couple of days weren’t too bad and the pain was ok but by the third day the pain was unbearable. I felt it in my chest but particularly in my lower back, pelvis and legs. It didn’t come on immediately, but over a few hours. It became so bad that by the evening the pain had become so bad that Nicola, my wife, rang the 111 helpline for advice and they said they were sending an ambulance. I had taken some morphine to dull the pain but it was barley touching it. After taking my night time medication of morphine and Amitriptyline the pain had begun to ease so we called and cancelled the ambulance. They’d been really busy anyway and after an hour and a half still hadn’t arrived so we knew they were busy and that I wouldn’t/shouldn’t use them.
We rang the cancer nurse the following day and they instructed taking morphine every two hours or hour as required to dull the pain and to continue to take the last injection. What a hell of a weekend and one I wouldn’t wish on anyone unless of course your one of the lucky ones that medication doesn’t really affect.
The Harvest
Thankfully it was all worthwhile as the pre harvest blood checks showed a stem cell count of 96 in my blood, the average count for someone who has had chemo is usually about 30 – 40 I was told. A lady also in for harvest had suffered similar pain issues to me and only had a count of 10 which meant a two day harvest in store. I was lucky because they managed to get all mine in the day rather than over two days which had been anticipated.
The harvest itself was not painful at all. The hardest part was lying still. You are not allowed to move on your own, in my case for over four hours. Little itches on the nose or sweat on the brow becomes a nightmare. Thankfully Nicola took care of that. The nurses and consultant were fantastic and made life a lot easier. They were attentive and chatty which made the time go over great. There is a picture of the machine I was attached to below. One of two machines named Ant and Dec. Fantastic pieces of kit which take your blood from you, spin it in a centrifuge and then pass it back to you minus the required stem cells. They collected 200ml of cells from me which should be more than enough for two transplants and again much more than they expected so the pain of the injections had been worthwhile. It is amazing what they can do now. Even though my cancer won’t be cured this time around they should have enough cells for a future transplant when it’s required. They will be able to pull my cells from the freezer and crack on. Who knows by the time it comes back things may have advanced so much they can treat me with lasers, all star trek like. Who knows?
Incidentally anyone planning to donate stem cells will go through these same procedures and although I mentioned the pain, it was only for four days of my life and more than worth it so I would encourage people to consider it. Stem cell donors are required as much as blood donors these days. From what I’ve read people are put off by the lack of information available about what actually happens. Yes it’s an inconvenience and it takes longer than giving blood which you can do in your lunch hour but I hope I haven’t put anyone off considering it.
High Dose Treatment with Stem Cell Support
Its been a while since I wrote anything here but I’ve been to a meeting at the Freeman hospital today to discuss my next steps so thought it was time for an update. Its been a while since I bored you with my posts so this will be a long one…sorry. 🙂
Last week I had my regular break from treatment having completed cycle 5. I met with my consultant on Tuesday of this week to discuss the next steps. He asked me if I thought there should be a cycle 6. My paraproteins are now very low at 2 so I replied that if I was being given a choice then I’d prefer not to go through another cycle. At the end of each cycle now it seems to take me longer to recover. I tend to have a few days at least following treatment where I feel pretty rough and I am always tired now. Rough is a bit non descript but I’m not sure how best to describe it. Just feeling shattered, nauseous and just generally not well (without vomiting). This week I’ve felt particularly rotten even though I’ve had a week off treatment. He agreed that having had consistent low para protein results then it was probably time to refer me to the transplant team for stage 2.
To my surprise the transplant team rang yesterday and asked me to go over for a meeting today. How’s that for service? I’ve read a lot about the next stage and discussed it with my consultant previously and if I’m honest have been a bit apprehensive about it. Having had my meeting today I feel a lot more at ease and am happy to take what comes next. A few weeks ago I posted a copy of the leaflet relating to High Dose Therapy in the resources section of this blog. I still recommend reading it as I have no medical knowledge or training at all however I thought I’d try to supply the basics in layman’s terms here.
As explained to me by the consultant I met today, High Dose treatment with stem cell support is not a new treatment and it’s not restricted to people on a cancer trial. It’s not for everyone but has been around for a long time. It’s often offered in order to consolidate treatment already given and because it is a treatment which is known to work. That doesn’t mean it cures things but, in my case, it should help to keep the myeloma at bay for a longer period of time.
Stem Cells
Probably the first thing to understand is what a stem cell is. In this context a stem cell is a juvenile cell that is generated in the bone marrow and goes on to become either a Red Blood Cell, Platelets or a White Blood cell. It’s possible to move the stem cells from the bone marrow into the blood stream where they can be collected. The reason they are collected is because the next stage includes having a high dose chemotherapy treatment called Melphalan. The Melphalan will target all cells including the “good” bone marrow so the stem cells are collected in order to re generate the bone marrow.
Melphalan is a high dose chemotherapy which I have been quite apprehensive about but having met the consultant today and been given some information about it am less worried. Yes there are still the risks that are associated with all chemotherapy but I’ve coped ok so far and provided I follow the hospitals advice I should be ok.
The stages
The Macmillan leaflet beaks the whole treatment into stages and it’s probably the best description I’ve seen to date so rather than re-invent the wheel will use their description.
Stage 1 – Preparing for the treatment.
This usually happens after several courses of chemotherapy. This is to get rid of the bulk of the cancer cells and to give the treatment the best chance of working.
The week before (starting 25th September) I’ll receive a week of G-CSF injections. G-CSF is a growth hormone produced naturally by the body but in this case has been replicated exactly and synthetically. Its used increase the number of stem cells and to move them from the bone marrow into the bloodstream.
Stage 2 – Collecting the stem cells
This is the harvest. It can take a couple of days. In my case I’ll go to the Freeman hospital on the 29th September in order to start this process. A blood test will initially be taken to check how the stem cells have mobilised. It’s likely to take a day but could go into the next day during which I’ll be hooked to a machine called a cell separator which uses a centrifuge to separate the stem cells, which are collected in a bag with the remaining blood being given back to me. In my case (because of my age) they will attempt to collect enough for two treatments, should they be needed at a later date.
Stage 3 – High Dose treatment
This is to get rid of the remaining cancer cells by the administration of the chemotherapy Melphalan. This will destroy the majority of the cells in the bone marrow. this is likely to take the day.
Stage 4 – Having the stem cells (transplant/graft)
The stem cells are returned to me via a drip
Stage 5 – Waiting for the blood count to recover
This can take a number of weeks and will require medical support. I’ll spend some time in hospital for possible 2-4 weeks, maybe a little longer depending upon how things go.
Stage 6 – Recovery after a transplant
Once my blood count (the level of blood cells in my blood) has recovered I’ll be allowed to go home with some advice regarding diet and lifestyle. The consultant I met today advised that recovery at this stage could be over 3-4 months with me feeling generally tired. All said and done I should be ready to start stage 6 around end of October beginning of November if things go as planned.
I strongly recommend you read the leaflets available to you and that you speak to your doctor/consultant. Don’t take anything I’ve put here as definitive for you as we are all different and even though we may both have the same diagnosis our treatment paths may vary. There is also a load of advice and information for you in the leaflets that I haven’t covered in this post.
Progress
Today has been a very good day. I consciously have held off from posting anything for a couple of weeks. I thought I’d give people a break from my posts for a short while however today I have to let people know what’s happening.
The past couple of weeks have been ok actually. I’ve had a couple of side effect issues from the meds but nothing serious. For those reading this to find out what possibly to expect from Myeloma, I’ve had a little bit of nausea, fatigue continues to be an issue as a I am tiring really quickly and I’m also having an issue with cramps in my hands and feet. The cramps have been very painful and it’s likely that they are a side effect of the Revlamid medication. The hospital can adjust the medication if it becomes too serious but for now I’d rather put up with it and plough on.
I had a chemo treatment today so asked for my Para Protein results following my third cycle of treatment. If you’ve been following you’ll know that the Para Protein levels are one of the markers used to establish the presence of Myeloma. My levels started in the 60’s and went down to 24 at last count. They are now (as at 23rd June 15) down to 6. I’m already three weeks into cycle 4 so expect them to be lower again.
So what’s next up? Well the doctor needed a 90% response to the chemo and we did think after our last meeting that another couple of cycles would be needed to hit the magic number. With todays great result I’m now expecting that our next meeting we will be discussing implementation of the next stage which will be high-dose treatment with stem cell support (I’ve posted a booklet from Macmillan onto my Resources page if you need to read up on it now). We’ve already discussed its implications and I’ll give some further detail on it soon. Still a way to go and not out of the woods yet but today has been a great day and I’m definitely heading in the right direction.
As always credit for all of this progress goes to the wonderful nurses and doctors of the NHS. I have put myself totally in their hands and they have got me this far. Even if things where to start to take a turn for the worse I’ll always be grateful to them.
Birthday week has left me thinking
Tuesday this week saw me turn 44 years old. Unfortunately I wasn’t feeling too great. I’d been laid up in bed for a few days already feeling pretty exhausted and rotten in a non de-script way. I have also been having terrible sweats which leave me drenched in seconds and constantly freezing. I’d already discussed this with the consultant a couple of weeks earlier and he believed the morphine I am taking is probably the culprit and didn’t seem to concerned to pursue it any further, it is pretty disgusting though and quite demoralising so may need another discussion later.
I was due at the hospital in the morning anyway to have bloods tested for the next days chemotherapy visit so just decided to discuss it with them when I got there. The nurses where great as usual and set about setting up tests and arranged for a doctor to see me. As I suspected would happen I was admitted to hospital. Blood tests confirmed that it was highly likely that I’d picked up a virus. Not the best birthday present I could have received. There probably will be many more because my immunity is pretty low due to the chemotherapy. The chemotherapy was put on hold for a day and I was prescribed IV antibiotics and fluids. I was released on Thursday and the chemotherapy has restarted so I’m back up to date.
I don’t want to go all morbid or anything and depress people but my hospital visit this week introduced to me two people who have left me with some pretty big questions. I won’t identify them but my thoughts are constantly going over discussions with them and I guess most people in my situation will eventually come across the same thoughts. I’m very glad to have met them but its made for a pretty difficult week. I guess actually EVERYONE at some point whether you have cancer or not will need to give these questions some thought.
The first guy is an elderly gentleman. When I arrived as is usual things were pretty quiet on the ward but this fella struck up a conversation and we talked about his life events. The usual, where he was from, family how he’d spent his career etc. What a fascinating life he’d had. A really interesting bloke to speak to and I hope that if I get to his age I’ll have had half the stories to tell as he had. A few hours later his doctor came to see him and asked for a meeting to be set up between him and his family. This was sorted and to cut a long story short he was informed that treatment was not working, risked making things (negatively) accelerate. The doctors wanted to stop treatment and commence end of life planning. I didn’t discuss any of this direct with him but its impossible to avoid everything that’s going on within a ward. I’m not naturally nosey but on a ward there is never 100% privacy. He has asked the doctors to give some treatment one more attempt which they aren’t happy about but have agreed to. They are also deciding whether he’d be better at home or in a hospice. He would like to go home but feels a hospice may be better as his wife will not be able to cope. That in itself is a massive decision.
The thing that got to me and to another patient on the ward was the conversations and visits over the coming days. Very difficult to be in the same place. The guy had told me about his children and how he rarely spoke or saw one of his sons. Not because of a fall out or anything but just down to life and work getting in the way. He made a telephone call to his son from the bed to tell him what was happening and to say his goodbyes and put things in order. He was very controlled over it, not upset and it raised the first set of questions for me. When the time comes how will I approach the same situation? What would I want to say and indeed is there anything that should/needs to be said? What things will I need to do before I consider things to be in order? Do I need to plan this a bit better? If I am presented with the option of going home, staying in hospital or going to a hospice what would be be best, assuming my family could cope with me being home is it fair to put them through it at home just because it might be preferential to me? I don’t have any thoughts on any of this yet but I think its going to play on my mind for a while. I’d be happy to hear others thoughts. As I have said right through this blog everyone is individual and will have different ideas but it has got me thinking.
The second guy I spoke too wasn’t as old as the first fella but a little older than me. Again a really nice fella and he was telling me how he’d been fighting a bit of a long battle that wasn’t going his way. If the next round of treatment didn’t go well then he may only have a year life expectancy. He had been offered a trial but had some real reservations. I was able to tell him about my trial and how things were going and he seemed to take a lot from this, later relaying to his wife that he was keen to discuss the trial offer with his consultant as soon as possible. The questions he left me with are again around things to do before the end. He had chosen to book a holiday, a pretty expensive one that he couldn’t really afford but explained that he had taken insurances that would cover his debts when he died. He clearly has chosen the Bobby Thompson philosophy on financial planning of
“let those who want it worry about how they are going to get it“.
He had other holidays planned which I do wonder how he’ll fit in around his treatment. I fully understand his desire to do the things he feels he needs to do but do hope that doesn’t cause adverse affects to his possible recovery.
I do follow his thinking but haven’t taken the same approach ….. yet. That’s where the questions started for me. At what point do I start doing what I want to do ? What should my approach to financing be? We do ok for money but I won’t be paid full sick pay for ever. I have credit cards etc like most people. I live within my means but do I start using these to do the things I want? I have life insurances and pensions etc which should leave everything well covered but is it fair to leave all this for someone to sort it all out after I’ve gone? Am I being selfish in my thoughts? Will it matter if I haven’t done what I want to do? Will I have had a wasted life or does it matter? My life is already successful in family terms. I have four great kids and a fabulous wife. Is it wrong to want something more just for me? Career wise I’m pretty disappointed. Do I persevere until the end or plan for something else? The mortgage has to be paid at the end of the day. Its been a few years since we even took a regular holiday without thinking of doing things just for the hell of it. We had been thinking of going away this year but that was before I found out I had cancer and started treatment. I will definitely not risk my treatment plan to go away. Facebook these days makes it particularly difficult. When you are reading peoples holiday exploits. Some choose to post every meal report, daily temperature report, pictures of every drink that’s drunk in these wonderfully hot and exotic places. Me knowing that my treatment prevents this for me and the family at the minute. Not that I’d prevent them going away on their own if that’s what they fancied and I’m not being bitter about the FB posts. If it bothered me that much I’d just stay out of the way and not read them – but its ok to have a touch of the green eyed monster isn’t it ? … you lucky ba*****s
Lets be honest my prognosis is very positive and treatment going very well at the minute but there are never any guarantees. I have no idea if I will be facing this guys dilemmas in a years time. I realise that this is the same for everyone but obviously if you are being treated for cancer then the odds are that little bit more against you and I could probably think of a million things I want to do before I go. Not things that I want for other people but things I want for me. I’ve done the parachuting, zip wires, bungee but there are loads of things I’d like to do and places I would like to see. A cousin who has had similar health problems to me and has come through the other end this week advised me to consider a bucket list and to do as much as possible. She advised to try avoid saying no to anything, although did set her own limits at bungee jumping. Good advice I think but not much in life is free and at some point you have to pay the banker. Again thoughts are welcome.
Finally a little pic and a thanks and shout out to my mate Neil Simpson who made it for me. He’s convinced I’ll boot this cancer malarkey into touch so posted a little battle-cry to my Facebook. Its me to a tee 🙂 (image wise)
Also thanks for the hundreds of birthday messages I received this week to Facebook and home. Much appreciated. Received some great presents too including tickets to see Wasp in September at the academy in Newcastle so I have to make sure I’m well enough for that.
Onwards and Upwards
Great news yesterday. I met with my consultant to review my progress and to prepare for the start of cycle 3 which began today. Following the first cycle of treatment the para-proteins had dropped from 65 to 33. They are expecting that the reductions will tail of a little so they don’t expect to see such a rapid reduction following cycle 2 but its all good. I’m hoping to get the results from cycle 2 soon.
The third cycle started today and the consultant said he’d expect a minimum of four cycles. He also said that some people can require many more, sometimes up to ten cycles. I don’t really mind how many it takes as long as everything heads in the right direction. The less cycles taken though means I’ll be able to head to the stem cell harvesting and then onto the transplant quicker. I realise that not everyone is offered the stem cell harvesting as it really depends on a number of factors but for me, one of the lucky ones I can’t wait.
Treatment is still going well with very few side effects so I’m in a happy place 🙂
For anyone reading this who is also going through treatment – I hope things are going well. If not chin up and think positive.
willitgo 