Life after ovaries operation...

Its been around 3 weeks since my ovaries were removed and so far I've had 3 migraines (I was up to around 4 a week previously) which is absolutely amazing and something I didn't anticipate, I also didn't think the hot flushes would get any better but bizarrely they have improved drastically, I no longer have the pulsating red face when I get a hot flush, rather sweat for a couple of minutes which pours off of my face then it stops and for once in 6 years I actually feel the cold, went out to the annual fireworks show and was feeling the cold, I was over joyed by this other people looked at me in astonishment but to me it was a major breakthrough, finally I can wear my cardigans and leggings without stripping down to a thin sleeveless dress all the time.

I am healing well where the scars are and they are literally disappearing before my eyes the only downside is I've put on a couple of pounds, not a huge amount but a bit of a disappointment, however I'm not going to let this get me down and rejoice at the migraine and hot flush results. I can safely say I am now post-menopausal just waiting for all the nasty side effects to stop and the results so far are giving me a much needed boost that this can and will happen. All in all I am very pleased with these results and feel happy in myself.

My father is battling the effects of his 2nd stroke and after 4 months in hospital! he is now in his own room in a convalescence home which we hope and pray he will improve in the next month or so and then finally return home. Its been a long 4 months but strokes really do take a long time to recover from, I don't think you ever really return to your normal self, but thankfully due to my brothers quickness in getting an ambulance, we believe this has saved as much of him as possible. I pray everyday for him and love him very much.

Head Scan Results

Today I found out the results of the scan on my brain and its clear YAY very very happy dance. The worry was the constant migraines one every day for the past 2 weeks. I always suffered with them before dx and linked them to my hormones and monthly periods but since having cancer and not having a monthly I couldn't fathom what was causing them, I mentioned the fact that the migraines were increasing and they wanted to check my head just in case.  We still do not know what is causing them, it could be the drugs I am on or the lack of hormones and actually today I realised it could be stress. I don't feel particularly stressed at the moment but I think sub-consciously I must be!

Two weeks ago my dad had a stroke and was rushed into hospital, obviously this was serious so we (myself and partner) drove straight up to Bristol to see him, the first week he didn't recognise us and could hardly speak this gradually got worse and he was in a vegetative state, this was most distressing for all of the family, by the end of the second week he seemed to of turned a corner and everything started to improve, the lights were on and my dad was in, we stayed for 4 days then had to come home again, life has to continue, we have commitments, I think I've been holding in my stress in relation to dad for a while and its been coming out as migraines because when we returned home the migraines stopped. I had one everyday we stayed up in Bristol. I take sumatriptan which really works but makes me spaced out and dopey, not good when visiting my father in hospital. He has improved and will be transferred to Weston hospital where they have specialist facilities to help with his rehabilitation. We have gathered by now that this is going to be a long haul process and we hope and pray that his mental abilities return with his speech and his physical walking etc. In time these should improve. Its been a trying time and hard on all of us. I am just grateful that my brother had the presence of mind to phone an ambulance (even though my dad didn't want to go into hospital). The quicker you deal with a stroke the more you save of the person.

Thyroid Test

Up early and waiting in anticipation of my second Thyroid test, last time I had the test it was 3 months ago and it showed that my the Thyroid was under active and that my cholesterol off the scale, I was told that normally we would wait for a period of 3 months and re-test to make sure that it wasn't a a random reading the first time round. I am secretly hoping that it shows my Thyroid is still under active as it would certainly explain all the depressing symptoms like not being able to loose weight no matter what you do or eat! loads of headaches, high cholesterol, blurry eyes these are just some of the symptoms that I have suffered and continue to suffer on a daily basis so as you can see it would be in my best interest if it did prove that my Thyroid wasn't working properly at least then they can administer some drugs that might help. I highlighted the word normally because I would of thought due to all the drugs I've been on and the treatments I've had you couldn't really class me as a normal patient! Prior to getting ill I never had anything wrong with my Thyroid or any other part of my body, my file at the doc's was wafer thin and they never needed to see me about anything then this shit storm hits me and I get every thing under the sun and I end up with a file the size of the old style yellow pages! Its a simple blood test but it could change my life over night again! this time lets hope for the better.

Stopped taking Tamoxifen.....

Thats right I've finally had enough and stopped taking the Tamoxifen its very nearly 3 years since I started taking them and just cant cope anymore with this terrible drug. The list seems endless but this is why I've stopped:

1. Enormous weight gain (4 stone) I've gone from a size 8-10 to size 18-20

2. At least 3 major migraines a week (I used to blame Herceptin but realise now it could be the Tami)

3. Arthritic joint pain in both wrists and ankles

4. Swelling and water retention just to add to the weight misery

5. Cramp in my toes and legs 

6. Hot Flushes including sweating from my eyeballs and feeling like I'm going melt into a puddle

7. Night sweats and unable to sleep

8. Mood swings and depression

9. Unable to walk or function at times due to the above side effects I end up walking around like an 

old lady of 100!!

I've been putting up with this sorry lot for the past 3 years and I've had enough yes I've hit the fuck it button what made me finally decide was the fact that I've been so depressed that I feel like I'd rather not be here anymore I realised this was a suicidal tendency (not good when you live so close to the cliffs) this was the final straw and as of yesterday I've stopped. I have an onc. appt. on August the 8th with results of MRI, CT, heart scan and blood test. Haven't decided whether or not to tell onc about stopping the tablets he will probably go up the wall if I tell him but I just can't live with this anymore I need a better quality of life. I will explain how I've been feeling and the above reasons if I decide to tell him. Obviously I'm still on the sub-cut Herceptin. I wouldn't mind if they tried me on another ai with less side effects but they told me at the last appointment that they wouldn't change the Tamoxifen until I was through the menopause hence the reason for the blood test to determine my menopausal status.

Apparently its going to take a good 3 months for the stuff to be out of my system totally but I feel relieved and happy about my decision. Its a risky strategy but quality of life is just as important.

Sunshine, shopping and a walk.....

When the sun shines it changes every thing and lifts my soul. Today the sun did shine and I enjoyed a days shopping in Totnes followed by a decaf latte at my favourite garden centre topped off with a 2 hour walk, I struggled a bit got out of breath and was feeling a bit weak half way through which I take to mean fatigue but walked through it and got home to a camera full of inspiration (I take a lot of photos). Luckily I had my partner with me (I've been having some nasty falls) just in case I took a tumble my GP reckons its the beta blocker Atenalol that I'm taking for migraines he said my blood pressure might be dropping too much and this is causing a very quick and temporary black out!!! hence the reason why I've had 3 falls in 2 weeks!!! I really hurt myself last time and I was with a 70 year old!!! It was sort of amusing bit like the blind leading the blind but still a bit frightening especially as it was on a cliff path. I don't want to stop taking the Atenalol as it appears to be working and I haven't had a full on migraine now for the best part of 2 weeks which is a small miracle for me.

Next week is an appointment free week (don't get many of those) so I'm planning on doing some painting, it really is beautiful down here at the moment all the flowers are in bloom and the leaves are out on the trees, May and June are by far my favourite months in nature. All the colours are ultra bright and I feel super sensitive to all that nature is offering.

Love and light to all xxx

Estrogen madness and migraines.....

I spoke too soon, the dreaded migraines are back.... what a bummer!
I'm still taking the beta blockers and I've increased the dosage but I still suffered with an almighty migraine yesterday and spent the whole day in bed on a concoction of drugs including and starting with Paracetamol that didn't touch it so I tried 2 Co Codamol, they took the edge off of it but only for about an hour so after 3 hours I decided to take a Sumatriptan this finally got rid of it. I am trying not to take the Sumatriptan as it can cause more headaches the more you take it, a kind of catch 22 effect. Anyway feel ok today albeit a bit frazzled around the edges but at least I can get out of bed and get on with living.

I came across this on face book and found it interesting when I went through the list I realised I had and continue to have a lot of the symptoms listed, wish I'd found this before I got cancer it may have given me an indication of what was wrong with me. I used to suffer with migraines before I got cancer and whilst going through chemo etc the headaches stopped but they seem to be creeping back and unfortunately they are worse than pre cancer migraines. I wake up with them and feel instantly sick sometimes I am actually physically sick.

Oncologist appointments and a Head Scan...

Firstly I would like to get my most recent moan out of the way, last friday I went for my 3 monthly onc appointment, I waited for an unprecedented 3 hours!!!! when I did finally get into see the onc it wasn't my onc. it was another onc. and he hadn't had time to read through my notes so I had too relay my whole sad and sorry tale all over again, annoyed and upset I left not feeling very confident about my team or the hospital.

Some readers will already know about my struggle with the monthly migraines that I used to suffer, I say used to suffer because unfortunately they have now turned into twice weekly occurrences, this is just two to many migraines so at my oncologist appointment informed them of the headaches and now am awaiting an appointment time for a MRI of my head, I am pleased about this mainly because every time I get a headache I tend too think that there is something more sinister going on this only exasperates the headaches even more, I need some closure on the migraine situation and an MRI is probably a good way too go.

After writing all of the above I have now found out why my own oncologist was unable to see he has been fighting his own battle with Liver Cancer for the past 6 months, this was news to me no one at the hospital has told me of this I found out this morning from the nurse that gives me Herceptin at home, too say I was shocked is an understatement I feel for my poor prof and wish him well, this news has decided me, I am definitely going to change hospitals as the oncologist I saw on Friday was in fact his replacement and whilst I appreciate how busy the new prof is and I don't doubt his abilities or his skill I feel that the oncology dept at my hospital is now very over subscribed this is part of the problem so many people needing treatment and appointments and not enough Dr's or staff. So as we are looking to move up to Somerset anyway and have decided to change hospitals and with it the team to the highly recommended Taunton Hospital apparently it has a new specially built cancer unit and I've found out I can still have Herceptin at home.

The lovely lymph nurse....

I suspected that the pain in my arm and trunk was more than normal mastectomy site mending itself pain and my oncologist referred me to a Lymphedema Nurse called Vikki. I felt a bit strange about going for this appointment because I was dreading the possible prospect of having to wear a compression sleeve and also the nurse is based in our local hospice. I have too say I was pleasantly surprised, the hospice was so calm and blissful a huge manor house converted, very friendly offering you tea and coffee in a comfortable waiting area with big armchairs, I don't really know what I was expecting to find but it certainly was not something as comforting as it proved to be and I no longer have 'the fear' as regards to a hospice.

As for lymphedema I do have it but very mild and early stages which is mainly in my trunk on the side, the pains I was experiencing turned out to be nothing to do with lymphedema but everything to do with my nerves knitting themselves back together (its been a year since my mastectomy). Vikki measured both of my arms and told me that my right arm (which is the affected limb) is 2% larger than my left, although my right arm is my dominant arm anyway so it would always be slightly larger, needless to say I am hugely relieved that all the exercises are paying off and keeping the dam lymphedema at bay.  We had a great chat and I found her to be so sympathetic and understanding.

During the consultation she said would I like to be referred to a Bowen Technique practitioner, I have heard of this complementary treatment and wanted to try it out anyway so was pleased to find that its free of charge on the NHS if your referred by your lymph nurse and a series of appointments have been made. My first appointment was on Friday and was very interesting, a series of light touch movements all over my body and it really did seem to work wonders, aligning and correcting my spine whilst attempting to deal with my side effects ie: migraines/hot flushes/neck and back pain. I will keep you all posted on how I progress with these treatments but I already feel something inside me has clicked and am looking forward to my next session which will be next week.

Fair weather health....

Hi all, it's literally the calm after the storm, we had rain all night quite heavy with thunder and finally the oppressive atmosphere has finally lifted including the way I was feeling (see previous post), so I am glad to report back to being my upbeat self again. My mood swings have been quite bad recently and I am putting it down to the tamoxifen and the endless migraines, the headaches come with nausea and are therefore migraines, I've had one a week for the past five weeks they seem to occur on a Friday and can last all weekend. I went to see my GP as I was running out of Co-Codamol (my life saver) otherwise I think I would go out of my head! He prescribed some more of the strong stuff as well as taking extra Clonidine so I now take three of those twice a day and thank god it seems to be working. So I'm hoping I can say ta da to the head fuck headaches and the extreme nausea and hello to some fair weather health and feeling more like a human being, trying to get back to some sort of normality.

I am cooking a sunday roast but not like you would imagine, yes there is a freerange chicken but no roast potatoes instead I am cooking sweet potatoes in there jackets first time ever also some green beans and broccoli, have to admit really looking forward to this meal, so will post soon, but promise to be a more positive and happier soul. Love to ya xx