Weekly roundup

I finally received a letter on Thursday saying my scan is booked for tomorrow (Monday).  They legally have 14 days from referral to see suspected cancer patients and it’s exactly 14 days!  I did try to ring my GP to let her know about the new elbow lump I found, but after 4 attempts (three times being put on hold forever and the fourth being hung up on when I finally did get through) I gave up and dropped a written note in to her instead!  I’ll definitely mention the lump to the scanning person though.

I think my Mum is freaking out a bit about the situation.  When I told her about the second lump her first words were “if anything happens to you you’ll have to tell us what you want done with the dog!”  Er, thanks ma – I’m not dead yet y’know!

I tried Googling mast cell activation disorder and swollen lymph nodes and came up with nothing.  However, it is found in systemic mastocytosis so hopefully the swellings will turn out to be benign and if that’s the case I’m asking to see a consultant who knows about mast cell diseases.  I haven’t seen anyone since my diagnosis 5 years ago and just because a disease is rare doesn’t mean you should receive no medical care whatsoever.

On Tuesday I, yet again, chased up my Dad’s CT scan results only to be told, yet again, they’re not back yet – it will be 6 weeks on Tuesday.  My family are all totally pissed off with the situation now, so decided to pay to see a neurologist privately.  I chose one who also works for the NHS at the RVI so that he would have access to my Dad’s NHS notes and test results, and rang up for an appointment.  The Nuffield website says that if you self pay you get to see a Consultant within 24 hours.  Lying little fuckers.  The first appontment we could get is on 9th April!!  So I’ve booked it, but we might have heard back from the RVI by then.  I was so angry that I put in a complaint to the Advertising Standards Authority about the misleading nature of the Nuffield website.

The Gods took pity on me for once, and to counteract all the doom and gloom I found out at the start of the week that my image of a Child Bride had won a gold medal in an international salon in Belgium.  Not only that but it was also awarded a medal for best colour print of the entire exhibition and was placed on the cover of the catalogue 🙂  In the same Salon, my Evacuee photo was also highly commended and received a Photographic Society of America ribbon.  I’m chuffed to little meatballs 🙂

I didn’t do much for most of the rest of the week because up until Thursday I was poleaxed by exhaustion.  It’s just ‘normal’ exhaustion, as opposed to the fluey, weak, poisoned exhausted I get from a bad ME patch, so I suspect it’s just hormone/menopause related as it comes and goes and by the weekend I felt OK(ish) again.

To take my mind off everything I attempted another photo I’ve had in my mind for a while.  It’s called ‘On The Shelf’ 😀

I had a nice day on Saturday.  My neighbour turned 80 and her son had arranged an afternoon tea party at a lovely hotel up the lakes for her friends and family.  My parents, and Bertie (who my neighbours ruin), were also invited and it was a nice opportunity for all of us to get out of the house and do something different.

This morning a friend has invited me for breakfast at a nearby cafe, so I’m going to take Bertie out for his morning constitutional then meet him for tea n toast.  My friends have been really supportive since I found my lumps a fortnight ago, as have several of you my lovely readers, and I am grateful for all your messages and good wishes 🙂  I won’t find anything out tomorrow – it’s not like the scanner operator will tell me whether or not I have cancer – but as soon as my GP rings me with the results I’ll let you all know.

 

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Another lump

It’s been over a week now since I saw my GP about my armpit lump and swelling.  As my doctor suspects something sinister I’m supposed to be being seen under the 2 week cancer rule, but so far I’ve not heard a word about my scan :-/

To rub salt into the wounds, the same day I saw my GP I took a friend through to the city to have a consultation about his bad back.  I heard today that he’s already been for an MRI scan, despite nothing sinister being suspected.  It’s fucking outrageous.

Today I discovered another lump.  I have no idea how I haven’t noticed it before because once you know it’s there it stands out a mile!  It’s inside my elbow (on the right as you look at the picture) and on the same arm as the armpit lumps:

Click on the picture to see a larger image

There are lymph nodes exactly where the swelling inside my elbow is, so there’s clearly some kind of lymph issue going on.  In addition, my armpit is now hurting when it hasn’t before, and my whole arm is feeling heavy and keeps going dead on me.

Until now I’ve just brushed the whole armpit lump thing off, but I have to admit having found this new lump and feeling sooooooo exhausted since Christmas (and actually, well before) I’m more worried now and just want the bloody scan so that I know what’s happening one way or the other.

Weekly roundup

I haven’t had my scan yet for my “suspicious lump”.  I’m trying not to think about it but it must be playing on my mind because I’m not sleeping well and have been having lots of stressful anxiety dreams.  Understandable I guess.

I rang about my Dad’s CT scan results and they are still not back.  It’s been nearly 5 weeks now and we’ve all had enough, so we’re paying to see a neurologist privately just as soon as we can get an appointment.  He first saw a consultant 15 months ago, yet we still don’t have a diagnosis and he’s received absolutely no treatment, despite going from being able to walk 6 miles to being in a wheelchair.  It’s a disgrace.

I posted on Facebook this week about the fact that I’m leaving my Camera Club and I said exactly why.  Ostracizing is the most common form of adult bullying and bullying is something I thought I’d left behind 40 years ago in the school playground.  The whole point of ostracizing someone is to cause psychological pain and distress, as if I don’t have enough on my plate already.  Quite what these 3 women’s issue is with me I have no idea, though I know for a fact with 1 of them it’s pure jealousy.  I am not keeping quiet about these bullies, however, and will name and shame them at every opportunity.  The fact that one of them left their former Camera Club because they were bullying a member there, and have come to my Club and bullied me, says a lot about them as a person.  The thing that makes me furious is that all 3 bullies have put themselves on the committee for next season.

I desperately needed to take my mind off everything this week, so on Wednesday my bestie and I went up the lakes to attend a literary festival and have a bite of lunch.  We went to a fascinating talk on brain gender by the neuroscientist Gina Rippon, who had some very interesting things to say on whether there are innate differences between male and female brains.  Google Rippon, though, and you will find a lot of trolling.  Not only is she female (how dare women say that they aren’t, in fact, inferior to men) but she disputes the status quo.  Way to go Gina is all I have to say 🙂

Other than that I’ve achieved nothing.  The weather has been atrocious and I am poleaxed by exhaustion at the mo.  I don’t know whether it’s stress, hormones, the fact I’m not eating properly (I feel sick constantly and have awful tummy pain) or probably a combination of all three, but my mojo has buggered off to pastures new.  Despite that, I have forced myself to do some photography this week.  I’ve taken hardly any pictures since last November, probably because I haven’t been happy at my Club, but I refuse to let those bitches destroy my passion so I have spent a few hours in the spare bedroom wearing a ballgown and wielding a sledge hammer!  Don’t try this at home, especially if you have hEDS or ME 😉 .  I ended up with this picture entitled ‘Breaking the Glass Ceiling‘.

It could be something

Neither of my paternal grandparents ever had cancer.  Neither of my maternal grandparents ever had cancer.  My biological Dad had stomach cancer, but not until he reached the ripe old age of 82 and his 85 year old sister is still alive and cancer free.  Two of my Mum’s siblings died of cancer, but they were heavy smokers and it was lung cancer, so it wasn’t exactly a shock.  My Mum smoked like a chimney for nearly 60 years but despite having a tumour on her lung it was benign.  Two of her siblings are still alive, both in their seventies, and have never had cancer.  So, to be honest, even though 1 in 2 of us will get cancer I’ve never really given it a second’s thought because it doesn’t look like it runs in my family and I have none of the lifestyle factors which increase my risk, such as drinking or smoking.

I thought a little bit more about the disease when my maternal cousin got breast cancer aged 60, though she isn’t classed as a close relative and I’ve tested negative for the BRCA gene and when I discovered that MCAS significantly increases the prevalence of certain cancers, including breast cancer, and having endometriosis is also associated with a risk of certain cancers, such as ovary, uterine or cervical.  But you never think it will actually happen to you, do you?

The reason I’m prattling on about the Big C is that I had my appointment with the GP today about my armpit lump.  I genuinely thought she’d take one look and say “everyone’s armpits are different and it’s nothing to worry about” but she didn’t.  She said there is most definitely a lump and it is not a cyst, nor swollen lymph nodes due to infection.  In addition, there is also swelling around a second lymph node and some puckering of the skin.  She said she couldn’t tell if the lump was an enlarged lymph node or a thickening of the tissue, but that neither should be occurring and it is possible it may be cancer related.  I waited for the “or it could be nothing” but it never came, and when she looked at me in sympathy and gently rubbed my back as she guided me out the door my brain screamed very loudly FUCK! and double FUCK!

There are two common types of cancer which could originate in this way: breast cancer, although I have no obvious signs of breast cancer, and lymphoma which I might possibly have signs of.  A persistent cough can be a symptom of lymphoma and, as you all know, I’ve been coughing for nearly 3 months.  Tummy pain and feeling full are also symptoms and I have been having both in spades, plus fatigue is common.

Soooo, I’ve been referred for an ultrasound and will get an appointment through within the next two weeks.  I’m not a big worrier and I’m sure it will turn out to be absolutely nothing, and even if it turns out to be absolutely something worrying won’t cure it, nor will stressing out or getting worked up.  I’ll just forget about it until I know for sure what’s happening.

Weekly roundup

Monday I chased up my Dad’s CT scan results only to find the neurologist hasn’t even had them back from the scanning unit yet.  It will be a month on Tuesday.  FFS, if that’s how the emergency neurology clinic works I’d hate for him to be in the regular clinic.  He has been progressively ill for 15 months now and we are no further forward – no proper diagnosis and he’s had no treatment whatsoever.  The man can hardly walk now for heaven’s sake!  We all feel totally abandoned by the NHS.

Wednesday I found a soft lump under my left armpit – I was drying my hair and caught sight of myself in the mirror.   I ummmd and ahhhhhd over whether it really was a lump until I took a photo to show my Mum – it’s then I realized that, yes, it really was a lump and there seems to be swelling going up my arm above it.   So I have an appointment with my GP tomorrow for her to have a look.  Luckily I only had bloods done last week and all is fine, and I had a mammogram last year and that was also fine, so I’m sure it’s nothing to worry about.

My cough has improved a little bit now my H2 blockers have been increased but it’s still not gone.  I know I should be trying the stronger PPI meds like Omeprazole but I’m too terrified to try a new drug, so am happy to stay on the Famotidine for now and just live with the cough.

I made a big decision this week.  Although I love my photography, I’ve been unhappy at my Camera Club all year.  My lovely friend L left as she moved house and it’s really not the same without her as I don’t have any other close female friends there.  On top of that, two of the women have sent me to Coventry and I have absolutely no clue why they are no longer speaking to me.  It must be something drastic to deserve such treatment but I can’t think of anything I might have said or done for them to hate me so much.  And then there is the lady I’ve written about before who clearly has an issue with me and is so intimidating she makes me feel physically ill.  I go to my Club to de-stress not to add to it, so I decided this week that I will not be going back next year 😦  I may just take a break and then see how I feel, or I may decide to join another Club (not to blow my own trumpet but I’m a fairly good photographer and there’s one particular Club who have been gagging to have me for ages).  We finish in a couple of weeks then I have the whole summer to decide what I’m going to do.  I’m not giving up my photography though – no sodding way – and can continue with that whether I’m at a Club or not.  I’ve been really upset at the thought of leaving but now it feels like a weight has been lifted from my shoulders and that’s how I know it’s the right decision.  Yes it means the bitches have won, but I will be telling anyone who asks why I’ve left and who the women involved are, so I’ll leave them with the fallout from that.

Right lovely people, I need to get dressed and take the mutt out.  At least it’s not snowing this morning – we got caught in a freak storm yesterday, with hail so hard it felt like it was ripping the skin off my face, and returned home like a pair of drowned rats 😉

 

 

 

 

MCAD v HIT

I’ve noticed that whenever I talk about histamine and food here on my blog there is often confusion about the cause of food reactions, so I thought I’d write down my take on what’s happening.  I’m no expert, though, just a patient along with the rest of you so I could be well off the mark and I’m sure if I am someone will point it out 😉 .

I’ve had MCAD my whole life, but I have never reacted to foods.  I don’t have a nut allergy, or a gluten allergy, for example and have always been able to eat whatever I like.  I know I’m extremely lucky and many of my readers aren’t so fortunate.

I only started reacting to food when I was in my mid forties.  It came on gradually over a few years.  Bright red flushing after meals, increasingly itchy skin, hives which I’d never had before and out-of-control acid reflux.  Eventually in 2013 all hell broke loose and I started having anaphylactic reactions after I ate anything – severe palpitations, muscle spasms (particularly in my gut and back), weird head rushes that felt like I was having a stroke, anxiety (obviously the whole situation made me anxious, but the adrenalin fuelled anxiety from anaphylaxis is a different thing altogether), huge spikes then huge crashes in blood pressure, and eventually I’d just pass out.  It was terrifying and I had absolutely no clue what was going on.

To cut a very long story short I paid to see Dr Seneviratne at St Mary’s, who tested my DAO levels which were well below normal and he diagnosed me with Histamine Intolerance (HIT).  I’d never heard of the disease before so it was a steep learning curve!   Most foods contain small levels of histamine but some foods contain large amounts.  I don’t eat meat, and it turns out that many of the staple vegetarian foods I was eating every day (cheese, tinned tomatoes, soya beans, spinach, aubergiene) are all high in histamine :-/  Our bodies also produce histamine as part of the digestive process which is why I could react some days after drinking just water!   Fortunately we have a couple of enzymes in our bodes, DAO and HNMT, which ‘mop up’ the histamine we ingest so that it doesn’t cause us any problems.  For people with HIT, however, the enzymes are low or not working correctly so the histamine we eat in foods, and the histamine produced from digestion, accumulate in our bodies.  It’s a bucket effect – the more histamine we eat the more it builds up, and eventually the bucket overfills and we have a reaction.  No one specific food does this – it’s a cumulative effect.  I embarked on a low histamine diet and within 4 months my food reactions were under control – they hadn’t gone, but they were manageable.

There are various reasons why, if we suffer from Histamine Intolerance, our DAO and/or HNMT levels could be low.  For example, they can be reduced by taking certain medications, in which case if you cease taking the drugs the enzymes should return to normal and the HIT would only be temporary.  In my case, however, I have no idea why my DAO isn’t as it should be – I wasn’t on any drugs, my diet was very healthy and I hadn’t had any major tummy bugs or infections.  For me, HIT seems to be a permanent problem and if I veer off my low histamine diet the anaphylactic reactions come back within a couple of weeks 😦

Because histamine build-up in HIT is a bucket effect, I can often have no problems eating my breakfast in the morning but I can quite often react to my dinner in the evening, because histamine has accumulated during the day.  So I tend to eat my main meal at lunchtime and just have a small snack at night.

The food issues faced by HIT patients are very different to the food issues faced by many Mast Cell Disease patients.  In MCAD the immune system is treating totally normal foods as a foreign invader and mounting a defence against them.  It could be any food and will differ from patient to patient.   It is not a build-up and the reaction comes on soon after the food is eaten (although some people do have mild, delayed reactions which muddies the waters!).  In MCAD our mast cells release chemicals including, but not limited to, histamine which then gives us an allergic-type reaction.   Our immune system doesn’t care whether the food is high in histamine or not – it can react to any food it likes which makes treating MCAD food reactions much harder than treating HIT food reactions!   For some people with MCAD the immune system is so over-reactive they are left with only a handful of foods that are ‘safe’ 😦

It’s important to note that in MCAD the immune system doesn’t just react to food – our mast cells can react adversely to just about anything in our environment.  My biggest reactions are to drugs – my mast cells hate them – but I also react to stress, hormones, some smells, pollen, my dog and often my own emotions.

The biggest difference between HIT and MCAD, is that HIT is a food issue only Stop eating high histamine foods and it is possible to get your HIT under control.  In MCAD the issue is much, much wider and not eating high histamine foods won’t alter the fact your mast cells react to hairspray, the smell of bleach or your hamster.

MCAD and HIT are totally distinct and separate illnesses – you can have HIT without having MCAD, and MCAD without having HIT.  However, if you’re unlucky enough to have both they can definitely affect each other and I think that’s where much of the confusion around food comes from.  I have people comment on my blog that they are following a low histamine diet but still reacting to all sorts of foods and of course they will if they suffer from mast cell disease.  Following a low histamine diet will only stop reactions after eating if you suffer solely from HIT.  It might reduce your symptoms if you have MCAD, because if your body is already over-whelmed by histamine adding to the load by eating lots of food high in histamine probably won’t help the situation, but a low histamine diet most definitely won’t cure all your symptoms which are caused by factors other than food.  At least that’s been mine and my friends’ experience.  So it’s important to know whether you’re suffering from HIT, MCAD or a combination of the two because management strategies will be very different, and you can only know this if you are tested by someone knowledgeable in both diseases (easier said than done I know, especially in the UK).

As far as I know there is no data available on whether HIT is more common in the mast cell disease population.  It would be interesting to know if there’s a link, because every piece of the puzzle is important when we’re trying to work out what causes disease and how to treat it.

 

Weekly roundup

Apologies my roundup is a day late.  My period arrived yesterday and I felt like I’d been run over by a bus.  Are they EVER going to stop?!!

I am still feeling emotional following the committee meeting on Thursday.  It’s not rational and I have no clue why suddenly all the old feelings from my marriage and other events from my past have come back when I thought I’d dealt with them donkeys years ago.  It has taught me, however, that I simply can’t be around this one particular person at my Club whose energy I find toxic, so if she is going to be on the committee next year I will resign.  I go to my Club to escape the stresses of a difficult life, not to add to them.

Last week we had a mini heatwave 🙂  February is still winter for us in the UK and this time last year I was blocked in my village by snow for 3 days, however on Tuesday it was 20C and I was walking the dog without a jacket on!  Bonkers, but very welcome.  I used the opportunity to have a good clean out of my garage, which needs substantial repairs.  I now just have to summon up the energy to order the materials and arrange for someone to do the work.

It’s been 3 weeks since my Dad’s CT scan and we’ve had no results or a follow-up appointment to see the neurologist.  We first went to the emergency neurology Clinic on Christmas Eve and it’s now March, yet we are no further forward and he has received no treatment whatsoever despite the onward progression of his severe neuropathy.  I am SO frustrated and increasingly angry, and my poor Dad is at his wit’s end.  So once again I will be ringing the RVI to chase up my Dad’s care.   For 14 months now we have been trying to get a diagnosis and are getting nowhere.  In the meantime my Dad has gone from being able to walk 2 miles to being in a wheelchair.   It’s a sodding disgrace.

Bertie is a very lumpy dog, particularly as he gets older.  He has several warts and lipomas (fatty tumours) that don’t bother him so I just monitor them for any changes.  However, at Christmas I noticed he was constantly scratching his face and I found a little lump which looks different to the others.  I was at the Vets to have this checked on Monday, who doesn’t think the lump is anything nasty and put him on antihistamines to settle the itching, however if it continues to bother him he will have to have it removed.

More worrying is his recent change in behaviour.  On Christmas Day we were eating lunch at my parents’ house and we pulled some crackers.  We do it every year, but this time noticed Bertie had gone awol.  When we’re eating he’s always sat begging by the table for titbits, so the fact he’d done a bunk was unheard of.  We found him backed up in a corner by the front door, obviously petrified by the noise 😦  And since then he seems to be regularly sitting backed up in a corner by the front door when he’s at my folks’ house.  He’s had severe separation anxiety since I adopted him aged 2½ (he’s now 10) but has always been happy to stay with my parents who he absolutely loves.  He usually spends his time lying across the back of the sofa watching out the window and “guarding” his territory.  However, his spinal problem is worse now he’s older and he’s struggling to get up on the back of the settee.   When I’m there I lift him up, but when I’m not neither of my parents are strong enough now to pick him up so I’m wondering if being unable to get up on the sofa to see out of the window and “guard” is making him anxious?   It’s the only thing I can think of, but I’ll mention it to the vet next time I see her.

Speaking of the mutt, he’s currently sat on the back of the sofa in our house, woofing at anything and everything and waiting for me to get dressed and take him out, so I’d better get up and at it.  As I lie here I can see the Pennine Fells and they are covered in snow from head to toe – looks like the heatwave is over and I’m going to need my thermals 😉