Macmillan Support

I didn’t know what to do with myself. I had planned a swim and a sauna, but all day, I didn’t manage to drag myself off the sofa and I never found enough energy to get showered or dressed. Sunday, I suffered probably the worst fatigue that I have experienced. I felt incredibly unwell and slept or at least lay with my eyes closed almost all day. It was day four after another bout of menstrual flooding. The usual pattern of recent months, heavy bleeding then a dip in energy levels around day four which generally lasts 3-4 days. After that I seem to bounce back quite quickly.

I felt so ill on Sunday. I wept at one point, not evenfinding the energy to cry properly. I no longer wanted to take all the drugs (Tamoxifen, Mefenamic, Ferrous Fumerate) I didn’t want this awful fatigue, I wished the cancer had never happened and I just wanted to feel “normal”. My head was fuzzy, my body like lead and my lungs breathless. Monday was brighter, although still tired, Tuesday I managed a good walk and today I was just about back to my old self.

If this is how it’s going to be each month then I have to plan my diary and ensure I have four or five days aside with nothing on in case the fatigue hits. My concerns were as to whether this cycle is “normal”. Fatigue affects 25% of women on Tamoxifen but the bleeding is much less common and indeed the opposite is more likely with periods becoming lighter and possibly stopping altogether. My GP didn’t seem concerned although the patient leaflet with the Tamoxifen states any changes in menstrual bleeding should be reported to the GP immediately!

Today I phoned to speak to the on line Macmillan nurse to clarify things and seek some reassurance! Well she clarified things and was very informative and understanding. The heavy periods were not normal with Tamoxifen and I shouldn’t have to live with this pattern of fatigue. She referred me straight back to my own breast cancer nurse at hospital and said I should try to see the consultant. I left a message for my cancer nurse at hospital and she called back this evening. She is planning to get me in to see my consultant. Watch this space!...

http://www.macmillan.org.uk/HowWeCanHelp/Nurses/AboutMacmillanNurses.aspx

Restoring Balance & Energy

I naïvely anticipated a quick fix to the anaemia. I was wiped out the day following the four hour walk and I was up and down for the rest of the week. Fortunately things picked up for my trip South with Maisie and although the travelling was tiring I was not feeling that awful fatigue which drags you down, that makes every step and every breath a chore. True to say that it did cross my mind that I could be “ill”, that the cancer could be back,  during these bouts of fatigue that hit me. I’ve never been anaemic and didn’t realise how debilitating it can be.

I’ve been packing my diet with iron rich foods, including an uplifting and refreshing watercress, pear and fresh ginger soup! Two weeks on and the iron tablets seem to be taking effect now and I am waking much brighter and with a lot more energy than of recent weeks.

I am still trying to balance my activities with rest and exercise and to not cram too much into my diary. Maybe a skill we could all do to learn?

The 18^th birthday weekend was busy but with time for relaxation as well. Leisurely cocktails at The Savoy, breakfast in bed and coffee breaks from the Oxford Street shopping! A very special time for me and my little girl! Doubly so as it was just the two of us and it was Mother’s Day!  I remember back to my initial diagnosis and the immediate fear that, having celebrated Alice’s 18^th the previous year, that I may not see Maisie’s 18^th birthday. It was a very real fear but of course as time went on, I realised that even with a worst case scenario there are great things that can be done for breast cancer patients. I was lucky. By the end of August I knew my cancer had not spread and I would not need chemo. It’s six months since my surgery and the scars, both mental and physical are healing well.

Anaemia & Menorrhagia

I will soon start to rattle as my prescriptions increase! I was back at the doctors this week, one to get the breast cancer history on to the girls medical records for their future screening and secondly to mention my heavy periods and the fatigue. I had blood tests done which came back that I am anaemic, hence the bouts of tiredness. I have two prescriptions to pick up, one for the anaemia and one to reduce the heavy bleeding (menorrhagia). I have never been anaemic before, I take a multi vitamin with iron every morning, eat fortified wholegrain cereal for breakfast and am a regular eater of watercress, rocket, apricots and broccoli! A possible side effect of the heavy bleeding and / or Tamoxifen. I hope next week I will bouncing around with renewed energy in time for my weekend to London!

I went to the cinema at the weekend to see A Song for Marion. It was a little too close to home and hit a few raw nerves for the three of us who went, one being a fellow cancer survivor herself. The three of us wept almost all the way through! It was a brilliantly made British movie but far too real and emotional. I’m interested to see what someone who has not had first-hand experience of cancer thinks to it?

I’ve been swimming twice in the last week which I really enjoyed however I suffered on both occasions the following day, with severe shooting pains at the site of surgery. Next swim I will stick to breast stroke and drop the front crawl to see if that helps. I also managed a 20 mins run yesterday in glorious sunshine along the beach. I was fine with the running but shattered in the evening! Today I had a four hour coastal walk with a friend, which was great fun and uplifting. Fantastic therapy – good conversation, fresh air and exercise. Another early night and probably another 10 hours sleep like last night!

Coping with fatigue

My two weeks away have been very restful. I didn’t do anything! I mostly sat in the rocking chair by the fire. I was grateful for the two weeks rest as it seemed quite quick falling back into a busy life after surgery. You are forced to resume normality as life moves forwards and there’s no choice but to “get back to normal”. I’ve had time to think and go over events and have thought about all that happened. I re read all the text messages in my phone from the day before and the day of surgery. That made me cry. It’s part of my healing process, to deal with the pain.

This last week was quite a tough week to get through. The journey home from France did not go according to plan and I finally arrived home after some 17 hours of travelling. Combined with another heavy period, which arrived five days early, I was, needless to say exhausted by the time I got home in the early hours of Monday morning.

Tuesday I was very tired and Wednesday I felt completely fatigued with absolutely no energy or motivation to do anything other than get showered and dressed. I felt weepy, lonely and exhausted.

Thursday I had an appointment at CLAN (Cancer Link Aberdeen North) for reflexology massage. The timing was just right as I really felt the need for some TLC and a chat with the therapist. It proved to be a bit of a “pick-me-up” on Valentines day and forced me to get up and out of the house. I was told it was quite normal to get these bouts of fatigue with all that has gone on physically and emotionally and of course combined with the effects of the Tamoxifen.(Fatigue can be  a side effect for many people). My hormones are taking a bit of a battering! I came out of the centre feeling brighter and went on to have a lovely evening with supper out followed by a brilliant short dance event in town. I was still suffering the fatigue to some degree as I felt every foot step from the car park to the theatre.

What a difference a day makes. Friday morning I woke with bags of energy, as if a switch had been flicked. I spent three hours outside in the garden, general tidying, nothing to heavy, but grateful for the fresh air, milder and drier conditions and a chance to work and stretch some muscles. No fatigue or tiredness and I realised just how unwell I had felt in the early part of the week. This seems to be something of a recurring event just after my period so I need to try to manage my social diary so I can rest if needs be. This was one of the worst bouts I have suffered but no doubt the travelling was something of a catalyst too.

I’m interested in the forthcoming release in March? of the movie “Decoding Annie Parker” http://en.wikipedia.org/wiki/Decoding_Annie_Parker

Based on the true story of Annie Parker, a breast-cancer patient whose belief that her illness had a genetic component led researchers to discover the breast cancer gene BRCA1.

Six months AD (After Diagnosis)

I didn’t feel so good yesterday, largely as I didn’t sleep well the previous night, ate late and couldn’t get off to sleep. I don't often get a "fatigue day" now but very occasionally one creeps in! I attempted a run the previous day which was fairly awful, only managed 10 minutes, had to walk the last part home. I felt nauseous and just couldn’t get going well. I’ve been managing 10-15 mins on the gym bike every day and my legs have not suffered. My hopes of getting out walking haven’t come to much as the weather has been so wet since I arrived in France. Running is probably not the way forwards, perhaps my body is trying to tell me something! I had wanted to run one more half marathon before I turned 50 and I managed that last year smashing my PB so maybe it’s time to quit while I am ahead!
Yoga and swimming are possibly good options for staying fit and active in a manner that is kinder to the body!

 My diet has been good here in France, my appetite pretty much back to normal, three good meals a day, plentiful fresh fruits, fish and vegetables in the supermarkets, with displays of produce far superior than anything to be found in the UK!

Today marks exactly 6 months since my cancer diagnosis. What a whirlwind time it has been, emotions in turmoil, swirling and blurring and over time, healing and fading, making way for the “new normal”.
There was no better way to mark the day than with the great news from Maisie that she had been offered a place at Newcastle University, her first choice. The waiting had been tense, but tense with nervous excitement. Today was a happy explosion of joy for us all.

On the drive back from Angouleme this afternoon the skies were as emotional, black hail clouds one side of the vineyards, blue with bright beams of sunshine the other, casting the end of a rainbow over the fields. A reminder of how we kept our spirits up six months ago by learning to “Dance in the Rain”.

Random Thoughts!

I feel sad when I walk past lingerie shops / departments

I don’t know anyone else who’s had a mastectomy

I know four other people who have / had breast cancer. One is terminal.

Is it worse to be diagnosed with cancer when your children are younger or older, or is it the same?

It’s been liberating to close the door on one or two worn out “friendships”

It’s uplifting and warming to have learnt who really values me

I’m learning the art of doing “nothing” from time to time

I’ve learnt to do things I need to and wish, to but less of what I don’t want to or don’t need to 

My fabulous daughters really kept me focused and going in the difficult times

There is often someone who will make your cancer all about themselves

Living in the moment is far more worthwhile than dwelling in the past

I am making my happiness a better quality than before

Life is not always what you make it

Happiness is found in between the difficult and painful bits

As with any trauma, it’s a gradual process coming to terms with what’s happened

I’m focusing my “new” life on doing things that excite and make me happy

Is it acceptable for me to topless sunbath?

I need to get fit so I can rebook my Sahara trek for my 50^th in October

Fantastic to be taking my girls to South Africa in July to celebrate Paul’s 60^th.

 

Tense and exciting waiting to hear of Maisie's university applications

 

Maisie's 18th birthday falls on Mother's day!

Calmer, Slower, Relaxed

I have no idea who is still reading my blog, 28 page views in the last two days and over 2700 since it began. With the arrival of the New Year I thought about stopping writing and “putting it all behind me”. In reality it’s not quite that simple and for me the blog continues to be cathartic and a much welcome outlet for my thoughts.

 I have read several cancer stories and blogs over recent months, written by men and women in their 30’s and 40s’. I have found it helpful to know that others have experienced the same fears and hopes and rebuilt their lives after diagnosis and treatment. As one said, being told you have cancer is like a bomb going off, your world as you know it and have probably taken much for granted, suddenly blown apart. I waited for seven weeks after my first mammogram until my diagnosis. Much of that waiting time I have little or no recollection of. Paul tells me he often reads back through the blog to those difficult early days, I am not so able to do that. After the initial diagnosis you have no idea if you will live or die and there is nothing you can do about it except wait and hope. Hope that your prognosis is a good one and hope then, that your cancer will not become active again. Your emotions and heart strings are pulled in every direction and your head is consumed with your own needs and nothing external. I felt my whole world close in around me, I was pulled into a vacuum and I removed everything that was no longer important. I remained in that “cancer bubble” for several weeks. As another blog says “Cancer is arbitrary. The club that no one wants to join – yet only offers lifetime membership”.

I have entered the New Year a much calmer, slower, relaxed person. I don’t waste time or effort on unnecessary things or on things I cannot change. There are things we don’t want to do but have to and there are things we don’t want to do and don’t have to! I have learnt to say no to things now, which in a previous life I would have said yes to, learning to hold onto energy and strength, and looking out for my and my family’s needs above all else.

I became aware that I was probably a little less self-confident having been through treatment and largely having been at home for four months being looked after. The trips and events I have planned have helped restore that confidence, travelling to Mums and socialising with new faces, the works do with Paul – (not knowing a single face!) and just this weekend the long trip to get to Dads, cancelled trains, re-routing and not getting flustered at all! Lugging my 16 kilo suitcase on and off the train wasn’t quite so clever but I managed, however, today I am suffering for it with the return of some mild stabbing at the site of surgery. It’s a normal occurrence after physical activities such as heavy lifting or snow shovelling!( I am blessed to have Jackie as a house guest at home. She appeared dressed in waterproofs and proceeded to clear the drive of snow last week for me. I’m thinking I should offer her part time work!)

Two days of travelling also caught up with me today and despite sleeping for ten hours last night, I found myself dropping off mid-afternoon beside the wood burner! Dad dusted off an old static cycle machine from in the barn and brought it inside for me. I did ten minutes of cycling to get the legs moving! Nearly 12 hours sat on a train caused my hips and knees to complain a little, I shall endeavour to fit in a good walk tomorrow.

I was happy to have borrowed a Kindle for my trip, loaded with various reading material, I am on my second book. Dad has set up an internet connection for me so I am also able to communicate with the outside world from this sleepy hamlet in the Charente!