Life's good keep it that way
If I can help with direction toward eating healthier exercise to help promote a better longer lasting life. Please just email maybe a friend or family needs support.
8 and half year's ago I had a biopsy on a lump in my neck ,I had been to the doctor the year before and it was not as big but he said it was nothing to worry about. Nearly a year later I notice it growing more..I must point out at this time I was a big eater and smoked but trained, ran and swam and competed in body building, karate mma. .but I think the kick in the teeth was when my consultant told me that the results was back and I had cancer. ..first thoughts was how long have I got. .after a long chat with him and the results coming back as non hodgkin's lymphoma. .it was at a low stage. .We discussed chemo and he said go home think on it and we can always treat you now or a little later. .the fags where thrown away the meat (red) and pork also out. In was green tea, raw veg ,fish, spirulina ,and apricot kernels b17,my new way forward . Reading into the food more I decided to hit the really healthy option. .I was due to have a scan in 3 weeks then see him..my cadio was going to take more shape and keep to the healthy staying alive plan. Ok went for scan and was told that raised lymphs were in my stomach and chest and groin but the chest and stomach seemed to be the ones to watch.he then sent me for a lower lumber to take a piece of bone of my hip and some marrow from inside,this was done at addenbrokes the nurses they asked what my pain tolerance was like. ..well I screamed like a baby :).The test results came back all clear so me and my new bestist friend dr boloso was now chatting more and we decided to wait a little more I was going to have a blood test every 3 months and scan every 6ish. .The food was getting better my weight at this time was about 17st. .With the green tea very low dairy products at first and fish with salad my weight dropped as it would. Blood test came back good the next scan was also good with no extra growth from the lymphs so sit and wait. ..after about 5 years I said to my consultant at still no change very little if anything that I wanted to stop the scans as they are high in radiation he was with me on this all was good. The foods that I was eating and the supplements had definitely contributed to the slowing down of the tumours. .will I must mentioned at this point my saliva glands where starting to get bigger and another growth in the neck. .but carried on as normal . The consultant was aware of this and obted for a scan,the lymphs in stomach and chest had grown a little but blood was good. .so carry on as normal. .
I'm. Going to come back to my story and tell you more ..I'll cover foods and all sorts to help others...
I'm back guys :)
And so my life continued as normal so to speak. .I was taking aerobics which helped me more so as well, oxygenating and sweating toxins out it all helps and it did. I must bring up at this point even though I'm positive and I do belive the food to help enormously, we can't forget the mind that's the best healer of our own body's staying positive knowing that all this healthy eating and training contributes to our well being, the mind will sort it.
I will jump forward now to present day ish 2016 . .3 months ok I started to feel a little unwell my back was playing up and I thought I had bad syatica...I was still managing some classes but what a struggle, I saw my dr who said let's do a scan and he put me on some steroids, which made me feel great by the way. .my pain started to go and I was feeling good again,he said we might get away with no chemo but because I was feeling good with the steroids I continued to hit the gym and cardio big mistake huge. ..didnt do myself any favors should of rested. .well back to the doctors I go feeling a little more worse for wear. .I felt terrible and could hardly move my right leg the dr took one look at me and said ray it's time let me treat you, I remember at this point my friend Dominic Marsh saying to me ..ray it's all great that your eating well but when your eating that beetroot sandwich and mandie is looking at you in tears saying please ray have the chemo get yourself well and you think the beetroot sandwich is going to help well think again you need a little more help ...and how right he was. .so that was it, me and the dr decided let's do this. .
Ok at this point also let me just say I belive in what we eat but I also belive in modern medicine and it's great to work them together. .I've heard and read a lot of people who have contradict moden medicine but when you see people who have tried to lead healthy lives hardly walking and it's making them I'll because of there situation, all of a sudden the Dr's start to treat them and there walking there quality of life is better again and they can go about there day eating well and getting on with it..surely this is what is all about. ..and so I'm a little anoyed when the naturalist try to knock our moden medicine. .That all said let's get back to this.
Typical day for me was always the same except for the occasional cheat.
Breakfast. Cottage cheese with flaxseed on rye bread.
Lunch ..chicken or fish with salad lots of salade.
Dinner ..fish couscous salad again lots of salad.
In between meals I'd snack on almond nuts, even making my own banana loaf also smoothies...
The vitamins were important to me..apricot kernels
Vit c, spirulina, ginger, tumuric which are fantastic for fighting cancer. .
Hi all I will keep coming back to site to add more on the importance of foods to help with ailments such as cancer.
Apricot kernels a b17
I've been taking these from day one
An apricot kernel is the seed of an apricot. It is known for containing amygdalin, a poisonous compound that, together with the related synthetic compound laetrile, has been marketed as an alternative cancer treatment and slows cancer down.
Cottage cheese and flaxseed otherwise known as the Budwick diet. ..I've used cottage cheese and flaxseed since the beginning. L
Check it out on the net .
Milk Thistle as a Cancer Treatment
Published studies on milk thistle’s anti-cancer potential show its effectiveness against cancers of the skin, prostate, liver, lung, breast, colon, cervix, and ovaries.
Milk thistle is also powerfully chemoprotective (meaning it protects against damage from cancer drugs). This is why it’s often used as an adjunct in conventional cancer care to help mitigate the toxic effects of chemotherapy and radiation.
The silymarin component of the herb offsets the growth and persistence of various types of cancer cells, including those associated with prostate, skin, and liver cancers. Likewise it exhibits general anti-metastatic activity, meaning it helps prevent cancer cells from spreading throughout the body and infecting other organs.
Other milk thistle constituents such as silibinin and isosilybin B show their own unique promise in preventing and treating cancer as well. Studies have shown that silibinin extracts derived from milk thistle used both internally and topically help protect against skin cancer.
21st September 2016
3rd cycle of chemo feels ok though had a rough night flu feeling had smoothie with spirulina and ginger and pineapple by the morning I felt ok.trying to keep fructose and carbs a little lower. Also cbd oil .I've read a lot about it ,it has great reviews ..I'm going to try a couple of drops a night. Helps you rest better which is good for me.as well as building your immune system and other great stuff..check it out.
Friday 7th Oct 2016..went for a break to unwind. Used cbd oil for a week and very strong canabis smell .a couple of drops under the tounge.,definitely helps with sleeping now don't forget I can't associate it with a cure as I'm having chemo and my lymphs are gone right down,but a good night sleep with no groggy feeling helps with healing the body. Had a stomach upset sending me to the toilet and then 3 days later realising that my immune system was low I felt bad..rang the hospital and they said I need a blood test urgently to get my white blood count..it's all a learning curve. Remembering that I had come of prednisolone (steroids)dr puts you on before chemo,I suddenly thought coming of them has side effects relating to all sorts bad joint pains bad tummy upsets the list is endless, lucky I had some with me and started back on them ,at this point I have to mention I felt like shit and you want to give up negativity takes over .I'm normally positive so with a talking to myself I got back up,also to mention my hip was playing up so back to limping:( . Well the 4th day into the bad tummy I started to feel a little better..had blood test macmillans are amazing and the test came back good. Again it's a learning curve and anyone going through a simular situation..well if I can help or help each other this is what it's all about..
Chicken broth. One of my favorites made it last night,ok this is what I do .strip the chicken fill the pot up with water so it's fully covering the chicken bones bring the water to boiling point as this is happening chop an onion garlic and carrots, 2 table spoons of cider vinegar and black pepper ..leave to simmer for about 2 hours checking that the water dose not evaporate to much if need be top it up with boiled kettle water . switch of and leave to stand for an hour covered with a lid..then strain the broth into a holding jug .leave in fridge and each day heat up a cup full sit and enjoy...
Ok guy's so it's the 14th of October now 2016 we have had a break in Portugal I did light weights over there very light swimming and just relaxed in the sun 7 days into the holiday Inn got a stomach bug,one of the reasons why the dr told me not to swim..this was not good with my white blood cells low so we headed back early to play it safe,had a blood test and it came back ok about normal as they say..I didn't feel good for a few day's with this tummy bug i had got quit week and the pain in my hip from the lymphoma had started to come back a reminder it's not gone yet. A couple of days back home and eating well I startedto feel better,I had my scan on the 10th of October 2016 and today the dr told me excellent news that 80% of it had gone, for me my family and friends it was great news
24th oct 2016.
with the result of the lymphoma going well i am still a little anxious about my hip coming up to my 4th chemotherapy it was starting to give me a little pain it could be nothing but in my mind its that lymphoma in my marrow playing about again,so belive it or not i was in a way looking forward to getting the treatment so that it could keep distroying the cancer,On the other hand i could of aggravated my hip doing light leg extensions, ive been doing 10-15 min warm up on the exercise bike then 2 sets of 12 reps on weights all over ,chest ,back,arms etc,but stopping leg extensions. So now ive had my 4th treatment 18th -19th oct im resting more and my hip is feeling better so its working well in my head. im still on the steriod prednisolone 10mg a day im suppose to take that for 10 days then stop till my next chemo but knowing what i do know about this tablet stopping it without coming down real slow makes you feel bad,so i start to break it down from 10mg -7.5mg=4 days 5mg=4days 2halfmg =4days then of this way your body will get its natural cortisol working again instead of relying on the steroid.
feeling a lot better today eating well trying to do little carbs more on the ketogenic diet though i love carbs :(,resting well ,my skin is dry head more so with red patches i imagine if i had hair it would be falling out in patches but all part of the treatment you cant have a good without the bad.
2nd November 2016.
Feeling low not myself really ,the 4th lot of chemo and antibodies went well ,up till yesterday was feeling good ,though I had a stomach upset and have decided it was not from the swim how I thought I'd caught a tummy bug but if it's something to go by my last lot of chemo 2 weeks after I had it in had a tummy upset well it's happened again so it's got to be the chemo or antibodies for that mater, I took a class last night and though I don't get involved in just shout basically showed some movements this in turn had started to flare up my hip or hasn't helped because if we go back to when I had my 3rd lot of chemo and 2 weeks after I think I get a tummy bug from the water and now I know it's from the treatment and it just hits me 2 weeks after well so did the pain in the hip . .now I now I haven't helped it this time by showing those movements and it was stupid to do it but it's done now and my hip is sore I feel rubbish and really fed up that it's so easy to give up (feeling sorry for myself )no not really just pissed of and down..it really is a shit decease . ..anyone out there going through it good luck it's a brain fuck . ..
Next chemo is the 15 November which I wish was now so I could nuc more of the lymphoma out of my hip faster but it dosent work like that as we know . .back soon x
OK back..5th November 2016 I'm lucky as I still have prednisolone left, rang dr at macmillans today spoke to the Secretary margret she is really good told her that my hip was playing up and could she let dr boloso know she did and she rang me back she said that he said I should go to A and E and get an x ray.,ok a couple of things going on in my head firstly I was a little worried that the injury could of caused the lymphoma to get upset in my hip and cause a chain reaction, I don't think I'd mention this earlier but I have quit a big crack in my hip brought on by my lymphoma one of the reasons why the dr told me not jump around,so the second thing I'm thinking is that hopefully and I know it's still not great but the crack in my hip my of been upset with the small jumping around rather than the lymphoma getting worse,and so back to the prednisolone it's a fantastic anti inflammatory and I've taken 10mg in the morning 10 at night yesterday then 10 this morning and 15mg tonight which seems to be working. I'm walking better it's not as painfull so fingers crossed I dont do anything stupid again. I will continue with 15mg tomorrow morning then go down to 10mg tomorrow night stay on 10mg for a few day's then drop again to come of them...sleep now resting and small walk tomorrow.
Tuesday 8th November 2016.
Quike update guys my hip feels better thank good i don't want to do that again. I'm down to 15mg of prednisolone and tomorrow will drop it some more I'm feeling good again and getting positive. I've started using CBD oil again and I must say I feel good on it better sleeps more energy so it's got my thumps up,
I take 2 drops before bed and one first thing in morning.
21st November 2016 Monday .
Had more chemo last Wednesday and Thursday I normally have it Tuesday and Wednesday at the end of every month though that's ok I hadn't felt great up to it my hip was playing up and obviously with the hole in it and where the stem cells are infected it it's had its toll on me, also doing a little to much on it hasn't helped ,I. was determined to take it easy more so, well I had the chemo and antibodies but felt rough . got home after the last lot on a Thursday and felt rubbish ..I had been busy to keep my mind of it but it can knock you for 6 or 12 even :)..I thought ok let's juice more, let's do carrot juice great for your stem cells and loads of antioxidant ,so I thought bring it on , I then felt fluie that night went to bed had cbd oil woke up feeling good leg hip still a little pain but a general feeling of well being . got more smoothies going with carrot juice ginger and coconut water ..up till today the leg pain and hip has started to feel better and hopefully will be more so . .so guys fingers crossed . .will update soon ..don't forget juicing is great cbd is good to sleep I'm not saying it's a healer but it helps in some way for me it's sleep. also starting to add broccoli back to smoothies . .oh the cbd can make you go to the toilet in a hurry a little bit more but so can chemo . .still on prednisolone done to 2 5mg a day will and get of before the next chemo.in which case the dr puts me back on them, I'm. guessing it's all to do with anti inflammatory as well as keeping them lymphomas at bay . .I'm still doing apricot kernels Vit c and cq10.not sure I mentioned them before ..anyway spread the good word stay healthy happy and love your family and friends.
Happy new year everyone.
2017 new year positive emotions.
It's now Tuesday 3 January 2017 my last chemo was Wednesday 14th December 2016 I am pleased that's out the way..it had hit me worse then before,people have said ad time goes on with the chemo it can get worse so I've kinda expected it. Getting home that evening after chemo my body joints all ached, I definitely felt rough,I had got myself some black seed oil I'd been reading into it and it had great right ups, I didn't want to take and pain killers so proceeded to get the black seed oil with frankincense and coconut oil and give my body a good massage especially the legs and hip which were giving me the most pain. I fell asleep and the next day felt great,I'm not sure if it was the black seed oil or the frankincense the fact that I gave my body a good massage seemed to work. Now I have started to take the black seed oil with manuka honey it feels good ...again it's has ingredients similar to cbd being an oil taken from a seed..so it's all levels good.
Tuesday 30th January 2017.
Hi guys. Update on what's happening. Dr boloso has said we will give the hip a zap of radiation because it's taking a while to heal so this Thursday I'm at addenbrokes having a zap ..meanwhile I've found a lump at the back of my leg behind the knee I'm not sure what it is i have rang today to seehim hopefully this evening,I need to determine weather it's a clot or the lymph node with tumour...either way it needs sorting out fingers crossed. My food is good stick to low carbs and intermate fasting which is fantastic. .
30th July 2017 sunday.
Hi guys back again and still here thank God.
Heres a update.
Last time had finished chemo and was getting Dr Boloso to check a lump on the back of the leg but it was ok it wasn't a clot but later on in my new treatment I got a clot :/.
We the lymphs have stayed clear but my tumours in my marrow got worse so Boloso said we we are going to treat this with more chemo and the treatment is called (chop)which is the way forward to treat it.i know I'm not going to go into to much detail because I had write this out and lost it once already it just went of the screen aaaaa. Anyways we started the the chemo treatment in April 2017 because Dr Boloso got scared at how fast the tumours were growing I wasn't much :). Well I have had 4 sessions and my 5th is next week with my 6th in 3week's but we go away next week hopefully for 3weeks in the sun .After my last chemo I will have a pet scan and Dr Boloso is looking to get stem cells for october.
I'm feeling good.but will let you know what symptoms I've had while going through the new treatment it might help others going through the same.
Firstly I had to stop the ketogenic diet I lost to much weight and felt bad after a few weeks on it ,it was fine for about 3weeks then I felt bad , there's really not enough nourishment going in ok you can and should take vitamins and your having greens with the fats but it's not enough..so for me it's a no no with cancer. So my fruit and good carbs was back ,and I started to feel a lot better with it.
I got a clot during this cycle and now on blood thinners all the way through ,this treatment can cause this .also im having chemo in the spine this is a preventative so it does not travel to the brain im having 3 lots of this every 3rd week just After my chop chemo. This can cause head aches but apparently if you have a strong cup of coffee soon after this will help and I tried it and didnt get a head ache so all good.i did feel a little dizzy a few days after and had the runs this was defiantly caused by the chemo in the spine. 26 August 2017 had my last chemo yesterday ended up throwing up today as your body gets run down more and more but once I had thrown up I felt ok back to normal so to speak. Well I've been doing a lot of greens and now I'm back on the steroids my eating is going mad:)...went away for 3 weeks to portugal and it felt great being in the sun I manage to get to the gym for the first time in 1 year I only did stationary bike and very light weights but felt great we got ourselfs in a great routine .it was for me fasting from 8pm then gym in the morning for 10am then cold shower which worked well one coffee (have read it's good for our liver now) a protein drink I would then take my tablets vit c d3 selenium apricot kernels magnesium spirulina. All works well and felt great.
My last chop chemo was on the 24th August 2017 and my spine chemo on the 29th August all went well I'm now booked in for 7 September to adenbrooks to talk about stem cells., I have always read that this is the way forward but it's hash I will keep you all updated.how I'm feeling now which is nearly 10days since my last chemo in fee ling ok still walking and the pains I've had in the hip and some in shoulders have all seemingly not felt as bad each chemo feeling a better.im doing deep breathing exercise and prayers and tapping every morning and 20min bike it's great for positive thoughts and keeping that little fitness going , I'm back on black seed oil as I've not done it latetly but missed it and read more on how good it was .All my other vitamins are the same. I keep hearing a lot latetly about people with cancer it's just horrible. I know the foods help but also that they are contributing to eat the wrong foods that is.speak soon x
Back guys Thursday 7th Sep 2017
Biopsy done heart and and blood test done spoke to top Dr about stem cells this seems the way forward few more test first then 2 weeks I think we start harvesting my stem cells. Will keep you all updated x
15th Sept 2017
Ok guy's some good news my scan was clear yesterday we all hugs me the Dr and Amanda I was so pleased the Dr Dr Boloso was fantastic he was so happy with us and ment it.
Today I had my last antibody treatment:).
I'm still going ahead with stem cells think this is hard but to keep the lymphoma from coming back this seems the way forward. Will keep you posted.
To be honest yesterday when seeing the Dr I felt good an felt a good result was looming .I've also felt positive spirituality I've been saying a novena and doing tapping also deep breathing it's all helping to stay positive. I have been doing more smoothies with broccoli which is great for anyone going through treatment or as a preventative.
Ok Saturday Sept 30th 2017.
Was sitting down watching tv after pip and Ryhanna had just done a swimming competition me and mandie were having a little bit of a difference because when we discuss there swimming abilities and fitness we are competitive and so is every parent, when parent's say it's just about enjoying the day and the competition yes it is but it's all about the bloody winning. :)
5th October 2017
Ok last week had a heart test and kidneys in which they put radiation into your blood to determine how fast your kidney excret the radiation out all complicating stuff but clever. And a big ct scan for my heart next week I have lung test this is in all preparation for stem cell so hopefully it goes ok please god.
Ok while I'm a week out from my next test at addenbrooks ill write a little more on how my life and friends are .
I'm a positive person and people who know me know that, but I do get down and have broke down on my own in a nice dark room because it's hard sometimes as cancer plays Russian roulette with you. But then I look at my family my beautiful children my rock and my friends and just to know they are there it's a breath of fresh air and a feel good factor.
At this point I must mention about close friends I will start with john hunt I have to write about him a little more then the other's because he has been there right from the beginning he has always helped me out and kicked me when I was down to remind me that life isn't all roses and to get up and fight his family us amazing his dad and mum hard core fighters and his sister an inspiration, when I've been feeling shit on chemo john would come out with some story of what he has been up to and had me in fits of laughter. He is tops .great friend.
Also Perry and Lauren and mandip Dom.
But first this is what's happening
Back at addenbrooks for 3 days of chemo I've had 5 lots of radiation and this next lot of chemo is to get me in remision I have 2 lots so first lot now then 3weeks rest then next lot ready for hopefully February for the stem cells transplant and have been told now this is curable so please God all goes well.
Radiation has made me feel strange and I'm lying in the hospital bed tonight it's 11.40pm my mind is on my family how lucky I am to have great children and an amazing partner soon to be wife .
Lewis my oldest what a fantastic guy 2 children my grand children and a beautiful wife I love them to bits.
Daniella well she did it packed her bags and went to enjoy herself in Australia and NZ. Fair play I love her and hope she ok.
Jamie he'sjust Jamie he going to do what he wants and enjoy life live it and love it he is a great lad .
Jade I've had more contact with jade and we get on fantastic she has always been a garector a fantastic daughter love her loads.
Tayla was so young when me and get mum split that bit still hurts as you miss the little extra moments but she did great also gone to NZ with Dan and having a great time.
Pip well what a man he's a couple of Lewis and so funny the 2 of them are a due love him so much .
Ryhanna I call my little princess I've been able to watch how my children have developed through Ryhanna because i was young when I had Lewis up to tayla really you can miss the real developments of them and the beauty of it all because of work and going out with your mates and so with Ryhanna came the soul of all my gorgeous children the meaning of life and the meaning of love and you can blink and miss it all or you can watch it grow and I was do lucky to get that chance.
6th January 2018.
I've had the dhap chemo treatment it seems to have worked well there was no signs of my cancer 3 weeks ago after the pet scan though they are still waiting for the result on the bone biopsy the fluid in the bone was all clear which is good. The date to start stem cells transplant is the 10th January so 7 days of hard chemo first to knock all my own stem cells out the way and then slowly introduce new stem cells from a doner which was nearly 100% match so please God it all goes ok .myself I feel nervous about next week though they say I'm in remission I feel there is still something there and they have confirmed there could be small cancerous cells floating around. Hence I need the week of chemo and new stem cells. Hi guys im back its 11th feb 2018 its a sunday night and my babes had been to visit me at Addenbrooks. Here's my update . On the 10th of January I was admitted to addenbrooks hospital for my stems cells transplant I first needed a whole week of chemo for 7 days running continuous I think this chemo treatment was called beam. It was hash but I seem to get through it ok it brings you to what they call day 0 then you have your new stems which mine was donated and it was an emotional feeling to say the least , someone has been bothered to donate there cells to help me . The match was 90% i belive which was great my brothers where only 50%. So we went with the 90 obviously. Well mandie was with me as she has been through out this whole journey and like I said we watch the stem cells go in and it was emotional. They next few days the doctors said I was doing great and they have to keep an eye on my blood counts also I might go of my foods and get sores in my mouth and to be honest I felt ok but I was not expecting what was to hit me my mouth my body my stomach god I felt bad but I kept the food going and did as much as I could to keep moving though I was so tierd it was a hard 10 days that followed and I was counting the days down it seemed forever after a couple of walks around the bed I would sleep and enjoy it because I just wanted the time to pass . After the 10 days things started looking up I was starting to feel a little better and my blood counts were going well. I'd seen Lewis which was excellent he spent the afternoon with me had a great chat. Jamie came up and Ryhanna and mandie it was great. I'd seen pip he was great looking good from training . So all was going well I was looking to go home about the 4th Feb.but my neutrophils droped they had shot up to 0.67 anything above 0.5 was a sign I could go home but they droped to 0.31.
24th March been home 4weeks now when I first got home I couldn't sleep over a week with excitement of being home it was amazing everthing was going well I was coming of the stem cells the stems had taken well my cmv was dropping so all was good I couldn't sleep well with the steroids. But even after 4 weeks I loved being home. But nothing last as they say, I got a infection was shaking this morning and temperature was up. Mandie bless her honest to god I would be lost without her . Back to addenbrooks we go we were only here yesterday and the bloods looked better but my magnesium was low so they gave me a drip which if you have had magnesium drip it's horrible. My legs have pigmentation and that was affected bad. Anyway here I am again mandie been with me all day it's now 10.30pm mandie got home at 9pm she been up with pip for work at 6am long day. But now there giving me blood transfusion as my bloods were low. I've seen the junior Dr earlier and she was on the ball but I need to see another tonight they don't seem to be in a hurry .my head was pounding early but had a sleep when mandie went and it's eased..but coming of steroids makes you feel bad.
Hi guys ok here is the update ii had to go back into addenbrooks 3 weeks ago as they wanted to keep an eye on me for anyone else it was just a common cold but as I had stem cells transplant it hit me for six . While I was in hospital my cmv virus came up a little so they put me on these 2 hours drips every 8 hrs of vascarna. It's a horrible drug but it worked but only for a little while .Still after 10 days I was let back home still not feeling great but better to be home. I had a pet scan on the 24th April 2018 I saw the Dr today who said it was all clear which is fantastic news . But I'm still not out of the woods yet I have to keep an eye on my cmv and my crafting because my body still wants to reject the new stems . So keep plodding on . My body still gets the shakes bad and you feel sick most of the time due to the tablets I'm on I would say. I saw Dr Crawley to one of the top stem cells Drs. But he does not seem to take in what we try to say to him and he seems to want you out the way fast . We had been seeing Dr Ben utanal who is good and even though I caught a glimpse of him today he seemed distant. It's making me wounder. I feel that they go so far with there patients and then want them of there list asap even though there's at least 6 months rehabilitation left I think this is upsetting. Any my bloods are good my haemoglobin is a little low which they gave me injections for so more side affects while trying to get your body back to normal. Christening tomorrow for 2 of my great children and my fixture wife I love her so much my rock.
Well god bless will keep you posted x
Ok during my last call to the hospital some more viruses have popped up this time it's a hsv virus.we went away to Portugal last week and had planned on staying for a few weeks I had a blood transfusion before we went and felt great but I suppose ended up doing too much while away though I couldn't sun bath as still on the steroid cream. So we ended up coming back early and I went to addenbrokes had blood test and my hemoglobin levels were very low as I had thought,I had read that if you're hemoglobin levels are low you should take it easy on weights though when I have spoken to the Dr about it there not sure but it does effect it so be careful if you're hemoglobin is low it's good to exercise but lightly it will help it eventually. Well today 10 August 2018 saw Dr Ben and because of the sores on my face and my tounge I have to go in next week 3times a week to have treatment to get rid of the hsv viruses also my cmv is back up a little so hopefully the treatment will sort both out . My mouth has been so painful that I just want it fix. Mandie been brilliant as usual. I've been in contact with Tay and Dan Keep them updated in New Zealand Tay has been good she gets back to me slightly faster than Daniella. Jamie is good and jade. Spoke to Lewis he is doing well starting his own business and grand children are great getting really big.
I feel really lazy at the moment not sure if it was because my hemoglobin was so low and I'm only just feeling ok again. The Dr has given me Extra stomach hemoglobin injections which will help.
29th August 2018
Hi guys, so I'm at addenbrookes again 😏 I'm having ciclavia which is a treatment for cmv virus and it's supposed to help with my hsv virus which is a form of herpes it sounds horrible considering that you can associate it with messing around in a sense,but everyone has it it laids dormant in the body and some things can trigger it off in my case new stem cells and low immune system and I sat in the sun which suppose to cause it also. Well either way I'm having treatment I've felt really good last few days but it's so up and down mandie been brilliant as usual. It's Lewis and pip birthday tomorrow big day for pip tomorrow he gets his new car..i see Ben utenal Friday there has been mention of an immune booster it sounds good and I think it will help especially with all the viruses but I have to wait to see if they agree to give me it, its a 12 month ordeal with it though I think once a week with the medication through a drip but will know more Friday. Apart from that everything seems to be going OK. I will update earlier this week as I keep missing this.
12 October 2018
Well its been a while and a lot has happened. The best thing ever me and mandie got married on the 5th October 2018 it was a great day only a few family mandie mum and dad and our daughter and son pip and Ryhanna. But a fantastic occasion I should of done it years ago.
Anyway back to what's happening my cmv was still up and they need 2 negative which eventually happened last week but with the hsv virus still hanging around they wanted to continue the cidofovir. My Bloods with regards to the hsv virus was negative which is good but I have what look like ulcers on my stomach and in my mouth also scaps on my face it's not nice at all. But the cidofovir seems to be working slowly. The only problem is mentally is what I have read you can't get rid of hsv it lays dormant therefore with my immune system being low it seems it will raise its ugly head now and then until my immune system is stronger. They have started me on immunoglobulin I was very lucky to have this as there is a world shortage this will help my antibodies build up which in turn should help ease a lot of viruses including the hsv fingers crossed. At the moment I'm having cidofovir twice a week it was 3 times but thankfully they cut it down to twice a week its really toxic. Because I'm still crafting and the rash did get worse the last month or so they have decided to give me epc which is like a dialysis machine it takes your blood out and basically infer red my white blood cells to help get rid of the crafting and hopefully clear up my rash which causes your skin to go really dry.. I have eased of the steroid cream me and mandie normally note what's going on and because my skin was getting so dry I have just been putting on wax cream a little like coconut oil. But it's helped a lot with the dryness. My Bloods have been OK but they have asked me to put up my tacalimus which I'm not sure if I mentioned before but that stops my old stems reacting with my new ones hence also stopping the rash but doesn't help your immune system as it can lower it and so it's another catch 22. My small summing up is to keep my vitamins going in but a little higher so for me I will increase vitamin c my b complex my electrolyte as they get knocked about.. Eating more greens and fruits trying to get back on good food as I had gone of it.. Hopefully this Inn turn will help keep everything going and make the treatment work better and faster. Also with hsv from what I have read it's good to keep lysine up. But will come back again soon.
Saturday 20th October 2018
Smoothies. I'm writing these messages to help with hsv virus as well as health. I've been doing smoothies for ages but you have to keep lysine high argine low its quite hard but you can do it. So with hsv it can cause lots of mouth sores making it ulcerated which is horrible. Sugar aggravates it. Like I said also argine which is an amino acid it's important to the body for health but keep the lysine higher to help battle the herpes virus Hsv. Having stem cells transplant has caused this because we all have Hsv but it laids dorment and our own immune systems if its good keeps it like this. Seeing my Dr Ben at addenbrookes he has kept me on cidofovir which is toxic so you have to be careful using this, it is helping but I need to up my game to stay on top. Now that they have started me on immunoglobulin this should help long run with increasing my antibodies. So back to smoothies and foods. Meats are higher in lysine. So if you suffer with cold sores and you want to stay on a low carb diet this works well for it all. My smoothie today was Curly kale. Coconut water apple juice Not only a healthy smoothie but high in lysine. Remember
Low immune system autoimmune antibodies they all need more help we can give it let thy food be thy medicine.
It doesn't mean to say don't indulge in some goodies just eat the healthy food with it or around it.