Cancer, Hysterectomy and what they don’t tell you.
In September 2004, I was diagnosed with cervical cancer.
On referral to the Royal Marsden my options were discussed at length with the head of the Gynae Oncology department. It
was decided that a Laparoscopically Assisted Vaginal Hysterectomy and a Laparoscopic Lymphadenectomy was the most appropriate
treatment. They were to leave my ovaries in place as they were concerned about someone so young being on long term hormone
replacement.
Having long ago decided that I did not want to have children, I was happy with the decision and prepared for my surgery.
I had my surgery on 24th October 2004, and after five days was sent home to recover.
Whilst I concentrated on my physical recovery, I was aware of my own personal psychological issues.
I had suffered with mild Body Dysmorphic Disorder for about 6 years and had to work hard to come to terms with the fact
that my once flat stomach was now puffy and scarred and would be slightly puffy and scarred for the rest of my life. This
I have now accepted, but it wasn’t easy. This at least I was expecting.
About three months after my op, I became very depressed that I could no longer have children. This seemed odd to some people,
as I had long ago made my decision not to have them.
What I tried to explain, and what they could not understand, was that it wasn’t not being to have children that upset
me. It was the fact that it was no longer my choice. Up until the 23rd October 2004, I could have woken up one
morning thinking ‘I really want a baby’, and I would have been able to try for one. As of 24th October,
that choice was no longer mine.
I have since spoken to a number of women who have been in the same position, either through hysterectomy, sterilization
or illness. My feelings are by no means unusual or uncommon. I have also since spoken to Nurses at the Marsden. It seems they
were aware of this phenomenon. So why didn’t they warn me??
In July of 2005 whilst at dancing, I pulled a muscle in my right thigh. The leg began to swell up and within a week, it
was twice its usual size, extremely sensitive and heavy. The skin round my ankle and knee was stretched so tight I couldn’t
walk properly. I went to the outpatient’s department and was told that the pulled muscle had triggered a lymphoedemic
crisis. The body had surrounded the pulled muscle with fluid to protect it and this has tipped the delicate fluid balance
in my leg. Not having lymph nodes in my groin anymore, the fluid had nowhere to go. This, I was told, is a common side effect
of lymph node removal as part of cancer treatment. If it is so damn common, why wasn’t I warned?
So having dealt with body image issues, reproduction issues and lymphoedema issues, I thought I could get on with my recovery
and my life. Wrong!
About July last year, out of the blue, it occurred to me that I had lost a part of that which made me a woman. Boobs and
bits could be faked, you see marvelous examples of this in gender re-assignment surgery. But, the ovaries and the womb could
not be faked. You either had them or you didn’t. And now I was missing half of my ‘feminine identity’. Again
I plummeted into depression. Again there were those around me who could not understand where this had come from, especially
as it was such a long time since my surgery.
I spoke to my Mum, who reassured me that there was more to me as a woman, and (more importantly – as a person) than
my internal organs. It gave me some comfort. A little later she phoned my to say that a lady at her church had experienced
exactly the same feelings after her hysterectomy; twelve months after her hysterectomy. And the lady in question was
an eighty year old spinster of the parish!
I have since spoken to other ladies who have been through the same thing following their hysterectomies. So it seems it’s
not uncommon. And if it’s so damn common, why didn’t someone warn me??
Who knows whether ‘forewarned’ would have been ‘fore-armed’? Who knows if I would have been able
to deal with these issues any better had I known to expect them? I just get the feeling I would have. And knowing that there
were other women out there feeling as I did, having the same insecurities I did, would have made me feel less alone, less
of a freak.
So here’s the thing. I’m not anti-hysterectomy. Not at all. For all the moans and whinges, at least I’m
still alive to be having them. And yes, it is a blessing not to have to make sure I have tampons in my handbag ‘just
in case I’m early’ or enough ibuprofen in the cupboard to cope with the period pain.
If there are ladies reading this who have been advised to have a hysterectomy, for whatever reason, I’d say HAVE
IT!! Just be aware of what may come after, and be sure you have people around you who, even if they don’t understand,
are compassionate and understanding.
This is but one letter and there are thousands of people in a similar position.
Let’s look at it from another viewpoint. The same syndrome may appear when a man has a vasectomy or a woman
is sterilised. If the act of decision is made voluntarily, in agreement between both parties in a stable relationship, money
in the bank with kids already then the will to go ahead is strong. Once done, the couple may live in a state of relief and
freedom from worry of pregnancy, of having to stretch the finances too far with being able to have all the luxuries. This
will last for as long as it takes for one of them to realise the decision is irreversible and the choice has gone. It will
last as long as the kids are well and the job lasts.
If the employment situation improves with a promotion, at once ‘’We could have had another one, you
know’ or ‘’What will I do when you are away’’ or ‘’Don’t get into any hanky
panky on that conference just ‘cos you’ve had a vasectomy // been sterilised.’’ Same goes for both
if they both work.
It does NOT follow that just because one cannot ever have kids they will be promiscuous but because the feeling
is that part of the manhood // womanhood has been lost. There is a subtle difference.
The realisation for a man can come at any time after the op when he realises he is ‘Firing Blanks’
and I was extremely surprised that it happened to me. It took me many years to overcome this feeling and for that time, I
was very, very vulnerable to temptation simply to retain my entirety of being a man. Not to act on the temptation was difficult
and led to some turmoil.
I have discussed this with other men and most feel the same way.
Of course, the medical profession is well aware of this. It is documented and that is why counselling prior to
the op is necessary but in many cases it is quite futile. Once the decision is made, nothing that the counsellor can say will
sway you from that decision. In hindsight, ( Oh Blissful hindsight) one should have listened more and paid attention to what
was being said.
There is also the case that any act of sterilisation will increase the risk of spread of disease. Whether it is
the pill, the cap, the intravenous, the coil, the clip or surgical makes it easy to become sexually free but so open to abuse
and regret.
I will be interested to hear, as is always the case, from others to add to our store of knowledge.
The psychological effects of sterilisation are profound and far reaching. Every case is unique and there are no
‘one way’ methods of dealing with or assisting the patient, partner or friend. Nor is there one way to deal with
the family and the reaction to ‘Why are you denying me the right to have grand children.’’ The emotional
burden that can be laid by this remark is devastating.
It is even more hurtful when it is not said directly but heard through a third party to whom the potential grandparent
has poured out what may merely be a tirade to get it off their chest. ‘’I would not dream of telling her this
, but .........’’ is potentially malicious and intended to damage relationships with others by design.
Gossip is rife. ‘’They told me one story but I think there was syphilis involved, you know’’.
Or ‘’I wonder if she had an abortion and now is paying the price’’.
Best to keep your own counsel and tell as few as possible and then, only those that can be trusted well.
In respect of the letter that I received, let us now look at the actual effects of the loss of lymph circuits.
For a therapist to be able to begin to assist the problem and be of real benefit to the patient, the amount of
training is profound. I am increasingly concerned that there are those who claim to be trained in this and are not. It is
true that even the most superficial of ‘’Beauty Salon‘’ massage will move the lymph in the sub-dermis
layers. The difference between this and to be competent is about 10 years of experience and specific training.
Medical works are full of caution of the toxic effects of deep lymphatic drainage methods and most schools will
not even consider teaching at the level necessary. Few students will have the ability to comprehend of be willing to learn
to this level.
This is not the MLD usually found in sports therapy and other clinics but much deeper and deals with the release
of toxin from the deep muscle tissue into the myofascial layers from the periosteum out.
Most of the medical works which I have read on the subject look for treatment to correct sodium and chloride balances
with daily intakes to achieve blood thinning, electrolyte balances, hypotonic and isotonic cellular states, exercise to stimulate
the osmotic effects, the molecular migration of cells and proteins etc, looking at the reduced oncotic pressures and so forth.
I will not waste time by dilating that which you can read in such as Saunders Clinical medicine, Chambers or Blacks.
What I will turn to is Hyponatraemia resulting from salt loss. Salt is vital in the diet and it is quite wrong
to say that it is a truism for all the salt that you need is already to be found in the food. Every single person has a different
need and in my clinic, I find many who do not drink enough water to maintain blood volume or flushing. There are some who
are OCD and drink gallons each day.
There are those who use salt on their chips and fried potato pizzas and are in excellent health as well as those
who will put on 10 lbs in weight for every crisp they eat.
It is essential to find the right balance by experimentation and not a fixed guideline approach. Diuretics such
as tea are indicated in the majority of cases.
So, notwithstanding the physical effects of oedema, one must look at the lifestyle and diet before arriving at
a conclusive diagnosis or mode of treatment. If there is the slightest hint of cardiac problems, nephritis or self administration
of drugs, no deep lymphatic drainage can be considered without some element of risk to the patient.
This aspect has to be investigated in the case of post surgery oedema during the initial assessment and disclosure.
When the lymph ducts themselves have been removed, the surrounding area is devoid of 70% of the drainage facility
necessary to prevent compartmentation syndrome or multiple compartment affection. Often, nerves will have been severed and
sensations will be lost.
The main treatment will be with the use of surgical stocking for the limbs. With regular and appropriate drainage
methods, good results are often obtained.
The emotional effects of finding out about the treatment having not been warned beforehand are quite upsetting
and to realise one will have to wear the restrictive garment for the rest of one’s life is at times, quite depressing.
Why not let everyone know the after effects before committing to surgery in the first place ??
Your views will be appreciated.
Tony.
