Support
Tyne Tunnel Exemptions for disabled
I learned today that if you have a blue badge then you can register to use they Tyne Tunnel for free. You will qualify if you are entitled to higher rate Mobility however you can apply without this as long as you qualify for the Blue Badge Scheme.
You need to download the form from the link above and post it to
TT2 Limited
Administrative Building
Wallsend
Tyne & Wear
NE28 0PD
You’ll need to supply
Car details
Vehicle make
Vehicle model
Colour
Registration No.
Documentation Required
Recent Passport Photograph
Stamped addressed envelope
Copy of page 2 of V5 Vehicle
Registration Certificate ( Log book)
it may be necessary to contact the supplier of your Motability vehicle AND Copy of DWP letter confirming entitlement of higher rate mobility allowance
OR:
Recent Passport Photograph
Stamped addressed envelope
Copies of both sides of your blue badge AND
Proof of identification and residency – driving licence or passport
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.
Attitude
Well I suppose I start this one with the obligatory apologies for not having posted in so long. In fairness I did say I’d drop in and out of this but, and not that I think people do follow this blog, I apologies if anyone has been waiting for an update.
To start on a positive so my cancer levels are still fully under control. I continue to take the chemo maintenance Revlamid (Lenolidamide) and it is really appearing to be doing its job. I did discuss a drugs holiday with my consultant this week as fatigue is still a major issue but we have decided just to keep things going as they are. Why rock the boat right?
Despite things being well its actually been a hellish few months. I’ve been suffering with chronic back pain. Ive been back on my sticks and using my wheelchair as it’s been so bad. I spoke to the pain clinic yesterday and they have another drug they are going to add to help me rattle a little more. At least I won’t be able to sneak up on anyone, unlike these bloody clowns that are all the new rage. The back pain has been pretty severe and ruined a recent break to Greece as by the end of the week I was practically carried from the Plane upon arriving home. Last Sunday I had another round of nerve blocking injections into my back and they have helped a lot. Although they haven’t worked as well as the previous round did they have definitely helped. I’m back on my feet and just using my stick. The pain is more like a dull ache at the minute so the relief is palpable. I just need to see how long it lasts. The previous round lasted about three weeks. But we just take it a bit at a time and work on to the next bit.
Its that theme of working on to the next bit that really has spurred the update to the blog this month. Unfortunately the wife of someone very close to me has been diagnosed with cancer and is going through hell. I’m not going to name them at all. They know who they are and thats whats important. It is really a vicious cancer that has reared its ugly head and it’s heartbreaking to see them going through so much pain. Physically and mentally. They know we are here for them and will do whatever they need to help. So many people offer that help in the early days but for whatever reasons it doesn’t always come to fruition and sometimes offers can seem a little hollow. I do hope that they realise that I really do mean it. I do hope that if required they will take me up on the offer. It’s been so tough watching them go through it all. I’m blessed that my cancer has been manageable and with very few complications. Mentally it’s been tough and I think really that is the hardest thing to deal with. With that said I think on the whole my attitude has been mainly positive and that has helped.
In the beginning of her illness our friend was struggling with the mental part of it all. We all got together and had a long old discussion. I can’t tell anyone how they should feel or how they should be handling their illness but I do understand how tough it can be and can at least empathise to some extent and maybe more so than someone who has not or is not going through cancer. I think it’s the unseen part of the illness that a lot of people don’t understand or take for granted. The mental strains of the illness. Of course the professionals in the main get it. They deal with it daily, but I certainly wasn’t prepared for what was coming my way. I consider myself to be strong minded, certainly opinionated, but I think it takes time to understand that it’s affecting you or even to admit that you’re not maybe as mentally tough as you think you are.
I’m a strong believer that what gets me through was the early understanding that it wasn’t all about me and that the people around me, that I love were going to go through their own battles and if anything I had to give things my best shot for them. The understanding that you can’t think about the endgame which to be honest comes to us all, but in fairness comes to a lot of cancer patients sooner that it should. The understanding that I was just going to throw myself into the hands of the NHS and that I would just cross each bridge as I came to it, particularly as you never know what is round the corner. You never know when the next breakthrough is going to be and even if you have only been given a short life expectancy then you don’t know if they will suddenly find something that will prolong your prognosis or even provide a cure and that with this in mind you have no choice really but to press on. There have been so many positive breakthroughs and advances recently.
I think this positive (as positive as it can be ) attitude helped me with my medication and made my life that bit easier to bare. I don’t pretend that it’s been a breeze. It would have been much easier to throw in the towel at the beginning, and at times it was so tempting. There have been and continue to be some very dark days. Anyway this is the vain in which our discussion went and I was told that it had helped and given some comfort. I really hope it did, certainly form the outside looking in it appears to have helped a little. Things have not been going well at all for my friends but I know that she is taking brave decisions that earlier on she may not have done. Not solely because of things I might have said but maybe she just needed to reorganise her thoughts a little and talking helped to do that. Our thoughts are with them always at the minute.
The message here is not one of patronisation it’s, that for me, the right frame of mind is vital and you really must look at the whole situation holistically because if you look at in terms of your own isolation then things are going to be much tougher than they need to be. As I said the professionals see it all the time and although I have put off speaking to anyone I have recently agreed to speak to counsellors and am just waiting for the appointments. Sometimes at the minute I feel like it’s engulfing me. Its hitting not only me it’s targeting but those people closest to me, friends and family. I’m also meeting more and more people with myeloma at my monthly appointments and it’s becoming hard to keep up with all the stories being told. So It’s about time I spoke to a professional. I can’t expect my wife to be my only soundboard. I think that’s something I’ve taken a little bit too for granted and it’s not fair. Still a common theme of my previous posts is that you must find someone to talk too. Whoever that might be.
Cancer is a bitch and I’ve certainly had my fill of it this past year but it is what it is and if I can keep a positive mind then I’ll plod on like the rest of you.
Cancer Stages
I tend not to update my blog too regularly. There is not normally much to write about. Months are pretty standard for me at the minute. I have good days and bad. Quite a few rough days at the moment but as always the hospital are all over it so I have nothing to complain about.
Unfortunately I’ve recently learned of a few friends who have been touched by cancer. Its gutting. I guess I’ve always been surrounded by cancer having known a lot of friends and family with cancer over the years but it just seems that lately its all I hear of. I doubt its any more prevalent than its always been but I suppose, as I have it myself it just appears to be that way.
My thoughts are with the people I’ve recently learned of and I’m here for them if they need someone to talk with or rant too. Everybody’s journey is different so all we are able to do is support them through their journey. I think its fine to share experiences so if that’s what they choose to do then I’m happy to listen.
Their cancers are different to mine and have been presented to them as being at various stages of development. Stages of cancer have never been discussed with me, I’m not sure why that is. I do think that it might have given me an idea of where I was at. Staging in Myeloma is slightly different to the staging described below (I know that now). I probably failed to ask the right questions in the beginning. If you need to know about myeloma staging then I recommend cancer research UK. I think that knowing and understanding staging may have also helped me ongoing. I’ve found the past few months pretty depressing and I’m not totally sure why that is. If I had to describe how things have been its that I have felt like I’ve been sitting in gods waiting room. (not that I’m religious at all) but I just think now that it may be a lack of information and is probably down to my failure to ask the right questions, although I reckon any person with cancer will describe ups and downs in their moods.
I have been off researching and it hasn’t taken too long to gather some info from the old ‘Wonderweb’ re cancer staging. Cancer research has a great article to explain cancer stages so I thought it might be an idea to link it up and to take a short time to understand it.
I wasn’t aware that there where different ways of staging cancer. Its known as the TNM system. You can read more directly on the cancer research pages as far be it from me to try and re word their advice.
Here is a brief summary of what the stages mean for most types of cancer.
Stage 1 usually means that a cancer is relatively small and contained within the organ it started in.
Stage 2 usually means the cancer has not started to spread into surrounding tissue but the tumour is larger than in stage 1. Sometimes stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the particular type of cancer.
Stage 3 usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in the area.
Stage 4 means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer.
Sometimes doctors use the letters A, B or C to further divide the number categories – for example, stage 3B cervical cancer.
Read more at http://www.cancerresearchuk.org/about-cancer/what-is-cancer/stages-of-cancer#QXApYU52f6TChzr3.99
They also explain cancer staging for various types of cancer. Click Here
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
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.
Myeloma Awareness Week
I received an email this morning from Myeloma UK. I am already highlighting my story with this blog but I thought I’d post up the contents of the mail to show my support. Its also a chance for you to get more information by reading up on other peoples experiences of Myeloma. BTW – Spoke to my research nurse a short time ago and my para-protein is down to 24 after the second cycle of treatment. It was 33 after the first cycle (65 at the start) so we are still kicking its arse. 🙂
I do not ask anyone to donate to any particular charity but if you feel the need then the details are below.
Happy Fathers Day to all the Dads 🙂 Especially my own who has been an absolute star.
This week is Myeloma Awareness Week – an opportunity to highlight the experiences of myeloma patients and to raise awareness and funds to improve treatment and care.
We hope you enjoy the patient perspectives series we will share on our campaign website each day during Myeloma Awareness Week.
Deb Gascoyne launches the Week by bravely sharing how she and her family dealt with a myeloma diagnosis aged 34.
We are grateful to each person who is supporting Myeloma Awareness Week by sharing their story, taking part in Walk with Me and helping to raise awareness and funds to support the work of Myeloma UK.
Please revisit our campaign site each day this week to hear from different patients about what matters to them and get involved in any way you can to help support those on a journey with myeloma. Donate now>>
Thank you for supporting Myeloma Awareness Week 2015.
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